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Iron Out-of-Balance


Iron Out-of-Balance

You can now purchase FeGGT LifePro™ to determine or confirm both your iron status and the adequacy of your natural antioxidant defenses by either clicking above or by going to our affiliated web site, HealtheIron.com.

Iron-Out-of-Balance is any condition where iron levels are not in an ideal range. People can have too much iron or too little iron. In this blog we invite people to talk about their experiences with too much or too little iron.

Iron avidity is one topic in particular is intriguing. Many people do not understand the term iron avidity, which simply means that your body is "avid for iron"; put another way, your body is wanting iron. The reason your body wants iron is because it is either iron deficient or some gene mutation is doing what it is programmed to do: load iron. In the latter, people with hemochromatosis are highly vulnerable to being iron avid, mostly because many are overbled from too many phlebotomies. You can read more about iron avidity and the diet to correct it in the Iron Library-Resources area of our website.

260 comments (Add your own)

1. Kathleen McClean wrote:
Hi. I am a 24 female in South Africa. My body does not absorb any iron at all. And when I eat to much food that is iron rich I often feel very weak and incedibly tired. I am not anemic in the sense that i can take iron supplements. The more iron I try to absorb the worse I feel. I have been like this my whole life. But would like to learn more about this and even if there is an actual name for what I have. If any one can help please do.
Thank you!

Mon, March 15, 2010 @ 3:13 PM

2. Lisa wrote:
Kathleen,
I have no medical knowledge, but my Mother had a similar issue for many years. She had Pernicious Anemia, I think that's when the body does not absorb B12...which may be linked to the absorption of iron. They now have a dissolvable tablet available instead of injections. Maybe this will help you :)

Sat, March 20, 2010 @ 1:58 PM

3. Diane wrote:
Why can't I just donate blood at the Red Cross? Are they likely to deny me or throw my blood away? It seems that most literature and information say to go to FDA approved centers. I have a mild case (H63D mutation) with ferratin level of 337 (target is 10-291).

Sun, March 28, 2010 @ 1:51 PM

4. Cheryl Garrison wrote:
Many hemochromatosis patients donate blood at ARC centers. It is not necessary to mention that you have hemochromatosis (HHC), because HHC is not a blood disease. Hemochromatosis is a metabolic disorder. So long as you have no other eligibility issues your blood can be used for transfusion.

Mon, April 5, 2010 @ 9:11 AM

5. stuart clayton tufty wrote:
i am a female and was diagnosed about 5 yrs ago and have been undergoing phlebotomys ever since. started with ferretin at 1703 and no symptoms except osteoarthritis of left wrist, then right two metacarpals. i have had multiple surgeries on both hands. , after maintaining low ferretins i have had tendon issues including now being in boot for achilles tendonitis. 2 1/2 yrs ago had surgery for left arm tendon coming undone and dropping in yoga class. i have constant worries about what will happen next. the ironoverload.org hotline has informed me that iron surrounds tissues that envelope tendons which can cause ruptures and injuries. anyone else having issues not on web page? thank you...

Thu, April 8, 2010 @ 9:25 PM

6. lynn wrote:
Hello, I am 43 woman, i have been telling the doctor i am feeling tired all the time. come to find out my blood count goes down, i take iron pills it goes back up. back in Dec is was low however she wasnt to worry about it., now its back up however my ERYTHROPOIETIN test came back low but not to low. one doctor doesnt seem worry however the stomach doctor wants me to have it checked out. can anytell me what is ERYTHROPOIETIN test and what does it mean
thank you for any help anyone can give me

Tue, April 13, 2010 @ 6:54 PM

7. Rivka Freeman wrote:
http://www.labtestsonline.org/understanding/analytes/erythrop/sample.html
To understand erythropoietin go to this site.
You need vitamin B12 and folic acid in order to increase red blood cell count in addition to iron.
You need an alternative dosage form such as a sublingual dissolving lozenge or a topical patch if you take acid blocking medications or antacids or metformin.

Tue, April 13, 2010 @ 11:12 PM

8. JT wrote:
I have HH, and was overbled a year or so ago. Ferritin was down to 7. Since then my Serum Iron and % saturation continues to remain high as well as my Folic Acid. My Ferritin finally came up enough, and I now try to keep it between 25-35 (seems to work best for me). It is now at 66 and i sure do feel it with knuckles hurting and am very tired, so i will schedule my phel.

I just don't know what to do about the other "High" numbers as i cannot seem to get them to go down. and not sure what having a high Folic Acid means. Any suggestions or help would be great. I also am having bacterial infections Bladder/Vag which are constant (i do have some nerve damage issues from a back surgery that seems to be the intial cause) but i read where if you have Iron Avidity you should avoid that "bacteria" which has me concerned. The doctor that i see for this does not seem to be very knowlegable of HH either, which does not help.
Thanks, JT

Mon, April 19, 2010 @ 6:07 PM

9. Dorothy wrote:
I was diagnosed in November 2009 with HH, genetic, homozygous for the C282(?) gene. My ferritin is currently 2600, serum saturation of 90% and elevated iron and liver values. I am having phelobotomy treatment once a week right now. I am constantly tired, ache all over in all my joints and now my muscles seem to be very weak. I also am having heart palpatations daily. They first told me I had rheumatoid arthritis, now blame it on the iron. Also, my hair is falling out by the handfull every day.
Any suggestions would be great!

Tue, April 20, 2010 @ 4:02 PM

10. mel wrote:
hi all, i was diagnosed last year with having iron deficiency anemia. i dont know to much about it and i sure dont want to pester my doctor about it. he has prescribed me ferrous fumarate tablets 210mg to be taken 3 times a day and has refered me to see a gastrologist. the truth is i feel 10 times worse on the tablets and im finding it really difficult to take them. my tiredness is now so extreme it affects my daily life. iv always had so much energy. i constantly feel nausous and im sick at least a couple times a day mainly in the evenings. i can only describe it as sea sickness and every movement can have me feeling sick. iv lost all appetite but im thirsty all the time often craving for 7 up fizzy drink {which i then later regret} my co-ordination has completely gone and have caused myself injury as a result. i cant concentrate and often get confused holding a conversations. i have a constant metalicy taste in my mouth which is awful and im forever brushing my teeth to try and get rid of it. it never helps though. some days are better than others which i cant understand. my partner is finding it difficult now as its obviousily having an impact on us. all the energy i do have needs to be used on our children and then theirs no more left for us. he doesnt understand any of this and finds it difficult to believe that it can get this bad.
could anyone pls just advise me on ways of dealing with these symptoms because i really have had enough. my gastro appointment isnt untill the end of next month.
thanks.

Thu, April 22, 2010 @ 6:20 AM

11. James wrote:
today i was turned away by the red cross and was told by them at the donation place and at there 1-800 number that the FDA said that they could not take blood from a person who has Hemochromatosis
I was not there for theraputic blood letting just for the two to three times a year blood letting for control
I have sent a e-mail to the FDA to ask if that is true becouse there website says that nothing is wrong with our blood and that there has been no (i repeat no) adverse effects from enyone getting blood from someone wit Heriditary Hemochromatosis

Tue, April 27, 2010 @ 8:12 PM

12. wrote:
56 yrs and recently diagnosed with HH . Blood donations were not a problem until they learned I travelled extensively. Result is a wait of one year before donation allowed for some areas of the world. I need to donate 3 to 4 times a year so need to find an alternative option.

Tue, May 4, 2010 @ 1:56 PM

13. Dorothy wrote:
I have a current ferritin of 2500 and an Iron sturation of 90%. Am doing phlebotomy once a week with my primary physician. Is anyone else that high or doing anything different with those sort of numbers? I'm considering a specialist.

Tue, May 4, 2010 @ 4:53 PM

14. Kay Seltitzas wrote:
A young friend of mine has been exposed to arsenic, cadmium chromium and other metals on her property in a mining town in Tasmania. She has been diagnosed with nerve damage and hemochromitosis. She has had DNA tests and it is not genetic. Can anyone tell me another possible cause?

Mon, May 10, 2010 @ 5:28 AM

15. Karen wrote:
My daughter is 5 years old. When she was 3 she was anemic and had to take iron supplements. I only gave them shortly and decided to change her diet. I stopped letting her have caffiene and got her to eat a little more red meat. When she went back her iron was normal. I took her for her 5 year physical and they ordered blood tests since she is always tired and is needing her tonsils out. She also has GIRD. Her iron level was at 107, which they said normal was up to 100. I was expecting the opposite, I thought she would come back anemic. She has been drinking caffiene and doesn't want to eat any red meat. I have no idea where the iron has come from. any ideas of where I should start looking?? What could she possibly have??

Tue, May 11, 2010 @ 5:23 PM

16. Julie Hoffman wrote:
Diagnosed w/ HH about 5 years ago. Had frequent phlebs at first then got levels down to what doc said they need to be. then, next round - too low and anemic. Now am a little apprehensive to phleb. But always cold, tired, weak, hair loss(!), even skin looks lousy these days. Thought it was my thyroid and read more on HH to find out hypothryoid is one of the symptoms. Mom has a friend in Virginia who goes to the red cross ( if I remember right ) for her phleb ( basically ) if they will take it there, why not here? Oregon. Didn't expect to feel this lousy at 51. Trying to eat right for HH and also no wheat (intolerance) and dairy. This sucks. Not sure docs know what they are doing with this!! Any thoughts welcome, just needed to vent. Thanks!

Thu, May 20, 2010 @ 2:13 PM

17. Anna wrote:
Any knowledge on how B vitamins affect iron loading?

Fri, May 21, 2010 @ 8:18 PM

18. Roni wrote:
I am 48 and have HH. After 1 yr of phlebotomy every week I am finally down to a ferritin level of 2481. I started at over 6300. I am working with a specialist. The last 2 & 1/2 months my ferritin levels have gone up. I missed 2 pleb before surgery on my hip but otherwise have gone every week. I don't get it. Any ideas why my numbers are going in the wrong direction? I am lost, pissed and scared.

Sat, May 22, 2010 @ 4:03 PM

19. cheri wrote:
I was diagnosed 09/09 ferritin level at 3440 to start I've gone every week since end of Sept 09 and have missed only two phlebotomies since then my ferritin is checked once a month and end of April it was 1385 then at the end of April it was 1422. The only difference was I had been eating alot of oranges and have heard that Vitamin C enhances the absorbtion of iron soooooo I have stopped eating the oranges and will see at the end of May if my count goes down instead of up. Roni do you have other members of your family with HH? My Dad had it and three out of four of his daughters have it.

Sat, May 22, 2010 @ 7:41 PM

20. Melissa wrote:
hi i was diagnosed with heamochromatosis 6mths ago, i got tested because my father has the carrier gene but i carry both genes so turns out my mum has it to, my first blood test said my ferritin was 129 so my dr was not worried but that is should be retested in 6mths, my dr had told me that it should not affect me until i was older and after i hit menopause (she kinda wasnt interested lol), but i had my blood test last week and my ferritin has gone up over 200 and im only 24 i i havnt hit menopause yet lol, is that bad i know most of the people on here are 1000+ but i dont know much about ferritin levels and heamochromatosis and i have a bad fear of needles :( what is it like when they take your blood?

Mon, May 24, 2010 @ 4:54 AM

21. Melissa wrote:
Been to dr today she still seems unhelpful so im going to get a second opinion :) but she did tell me that New zealand measures different from usa so im not sure on where my ferritin levels are againts yours lol although my blood result sheet says that im at 193 (the nurse told me it was over 200) lol but the range on the sheet says between 20-170 so im not to far over but it has gone up :(, stupid dr keeps telling me it wont affect me until menopause but wont answer my question on why are my bloods abnormal now?? they were normal before....

Tue, May 25, 2010 @ 12:47 AM

22. betty collins wrote:
i would like to address this comment to MEL #10. i had almost the exact experience you had. i was seening an internal medicine doctor, he kept increasing my iron supplements untill i was at 1975 mg. a day. toxic to everyone else! in 2003 i became so sick, my husband took me to the er. my blood count was 4.1. they assigned a hemotologist to my case, and he saved my life. i receive iron infusions on a regular basis plus b-12 shots monthly. you need to go to a hemotologist. my bone marrow doesn't make red blood cells, and i do not absorb iron by mouth. it makes me violently ill. my health was so bad before that i couldn't eat anything with ferrous sulfate. get a hemotologist.
i don't know if you are permitted to have access to my email through this blog, but if you are please contact me. i will check back on this blog next week if you do want anymore information. i know how frustrating it can be if nobody understands whats going on. what i have is kind of rare, that is why a specialist is needed.

Mon, May 31, 2010 @ 10:29 AM

23. betty collins wrote:
p.s. to mel. anemia makes you crave crazy things, especially crunch , or fizzy things. i was going through a 10lb bag of ice every 4-5 days! $146.00- $160.00 a year for bagged ice, making ice myself didn't do the trick. how weird is that?

Mon, May 31, 2010 @ 10:34 AM

24. Judy wrote:
I have sever anemia a level 6 and am wondering why my doctor never suggested I have an iron transfusion.

Fri, June 4, 2010 @ 4:46 PM

25. Dorothy wrote:
Any of you having DRCA treatments? It looks like that is my next step. Nice because it lets me go twice as long between treatments, bad because I live in a remote area and will have to drive 4 hours to the center. Good news, my brother is now in maintenance stage, phlebotomies every 3-4 months.

Tue, June 15, 2010 @ 2:32 PM

26. Bille Meyer wrote:
I was diagnosed with CLL 2 years ago and started chemo almost 1 year ago. They had to stop treatment in Jan because my white and red cells were bad (very low). I have had a lot of blood transfusions since then. A month ago they informed me I had iron overload with a count of over 2000. Now I'm on exjade, which is 1 or 2 medicines in the US we can take; but stil am not getting a lot of information of what I can do. Someone said it was because I was over-weight and the iron is adhereing to my fat. I'm frustrated and kind of scared and would like some information on more I could do to help. I haven't found any connection to being fat; and my nurse sent some good information but if anyone has suggestions, I'm open to it. Thank you! :-)

Thu, June 17, 2010 @ 7:35 PM

27. amy wrote:
Does anyone have any information on the relationship with iron deficiency and castlemans disease. My last iron level was 20. Can low levels cause loss of balance. I had neuro and cardiac work up but has happen to the point where I could not stand and walk. Can't tolerate oral iron. History of gerd with evidence of occult ( no frank blood) blood loss. Hbg has actually been normal for last year but balance issue a bit disconcerting along with fatigue and some hair loss. Suggestions or info ? Last IV iron infusion about a year ago ( must use Iron dextran - infed causes dysrhytmia and iron sucrose caused hives)

Thu, June 17, 2010 @ 9:49 PM

28. lisadawn wrote:
I am curious if anyone has had a similar reaction to iron supplements that I have had.
I have been recently dx with iron deficiency. I went to the dr for an answer to my hair loss. I asked for tests of thyroid,estrogen, and iron ferrous. Everything came back normal except for the iron. My iron level was 4.6. (I also had iron deficiency as a child)
My dr prescribed iron ferrous at 925 mg per day. After a couple of days I had severe muscle cramps,extreme fatigue and uncontrollable shaking. The dr suggested I try 650 mg per day, and after about a week I was admitted to the hospital for heart palpations and hr range 120-140 bpm. After numerous cardiology tests, I still really didn’t get an answer. I have told all my physicians that I felt fine before the iron supplements and they answer that they have never heard of iron causing that reaction. I have decreased my dosage to 1 pill/325 mg per day, eating red meat, and cooking in an iron skillet.
After 6 weeks my iron has come up to 10.3 but my saturation is still only 10%. Today I am being prescribed folic acid to help with the absorption. I have noticed that my nails are now pink and my hair is trying to come back in a little bit. But still extremely fatigued and starting to have muscle cramps again. God bless you all.

Mon, June 21, 2010 @ 8:46 AM

29. Nancy wrote:
I was recently diagnosed with hemochromatosis. I need to have phelbotomy weekly for a while. My doctor recommends fluid treatments with the phelbotomy which takes about 2 1/2 hours to complete. Are fluids necessary? It seems like a lot of hemochromatosis patients do not receive fluids with weekly blood removal. Please comment. Thank you. Nancy

Tue, June 22, 2010 @ 11:57 AM

30. dorothy wrote:
For Nancy June 22 note:
I have had 10 phlebotomies so far for iron overload and did not have any fluids during the draw. They do give me a bottle of Propel when I'm done to drink before I leave the office then I go eat something. I'm usually done in about 40 minutes. Maybe your situation is different somehow, I'm C282Y homozygous, iron 209, ferritin 2000 and saturation 90%. I'm now considering DRCA treatments to reduce iron faster.
Best of luck to you, you are all in my prayers daily!

Tue, June 22, 2010 @ 2:03 PM

31. Nancy wrote:
For Dorothy, June 24 note: Thank you for sharing your experiences. I had phlebotomy today without fluids and I did just fine. I will continue without fluids. The nurses doing the phlebotomy even remarked the fluids "may be over kill." Could you please post another note explaining what DRCA treatments are? I look forward to hearing from you. Nancy

Thu, June 24, 2010 @ 8:42 PM

32. Susan wrote:
Nancy, My Dr. wanted fluids too. I am 1 of those who hate needles and pass out. during ph. I insisted with my Dr. I don't wnt fluids and she finaly agree'd, been doing for about 2 1/2 yrs. Just drink plenty of water and I also do a gator aide the next day. Has been working for me!

Fri, June 25, 2010 @ 10:25 AM

33. Susan wrote:
With hemochrm. does anyone also have a Dr. that just wnts you to live a normal life and do blood work 1x a month, and then your left hanging, if they call , they call. They keep telling me not to worry about my #'s. I personaly want to know them, it's like I know I need ph from the way I feel ,do you no when your iron is up, from the symptons? I am going on 4mnths withour ph, I am so exhausted and have headaches, this is the longest I have gone. It's like if I could hv a ph I would feel so much better. For me to want one the way I hate them. I just don't understand and feel lost. Is it just me????

Fri, June 25, 2010 @ 10:47 AM

34. Rhonda Barnett wrote:
This is for Betty #22. I was diagnosed with low ferritin. Iron and hemoglibin are normal now. Doctors could find nothing that would cause me not to absorb my iron except for I had a bleeding ulcer several years ago and have to take an acid blocker. I do get ferritin infusions usually every 5 to 6 months. I have heard there are now dissolving lozenges that can be taken, I would like to try this to see if it would help maintain the ferritin level. I did have a partial hystarectomy that took care of the low hemoglobin levels. I do see a blood specialist for the condition. Although I still suffer from fatigue and illness a lot. Do you still have these conditions or was this taken care of?

Fri, June 25, 2010 @ 4:30 PM

35. kristen-o wrote:
I have HH & have just found out that I have developed liver cancer. I am only 20 & honestly don't understand how my high iron counts could have affected me so severely already. I don't know what is ahead of me for treating this, but I am really scared and confused about it. Anyone know someone with similar story or word of encouragement? All of this iron disorder news & info is new to me & I am lost & confused. I never knew something I thought was minute & not that big of a deal that I had just thrown aside would ever come back to rule my life in this way.

Sat, June 26, 2010 @ 4:31 AM

36. Vanessa wrote:
My father was diagnosed with Hemochromatosis about three months ago. He had a liver biopsy and there was no cirrhosis, but his ferritin levels are in the 4,000's. He has been undergoing phlebotomy every other week for the past two months. He still feels tired, is having a lot of problems with hearing and short term memory loss and mood swings in the past 2 weeks. His blood sugar levels have escalated and the doctor increased his sugar pills to twice a day. Any thoughts or suggestions?

Sat, June 26, 2010 @ 9:58 AM

37. Dorothy wrote:
Dear Nancy (#31). DRCA is Double Red Cell Aphresis. It is sort of like dialysis for your blood. From what I understand they remove your blood, filter it out of red blood cells, add in some fluids and give it back to you all in one process. It is just a faster way to rid the iron from the body and I think it is done every 112 days instead of every week. I have had 11 phlebotomies so far and am developing scar tissue at the sites.
I've actually made an appointment at the Mayo Clinic to see a hepatologist to make sure my liver is doing ok.
Dear Kristen-O (#35) My thoughts and prayers are with you. Make sure you stay on top of your care and all your test results. You must be proactive every step of the way. On a good note, the liver is the only organ in your body that can rebuild itself other than your skin. Hang in there!! I'm curious, what are your iron levels? Did you have earlier symptoms?

Tue, June 29, 2010 @ 4:04 PM

38. cuprak64 wrote:
I too have had problems with tendons and have multiple injuries with cause. I had a ferritan of 6500. afer 3 years of weekly blood letting I have been within normal limits. I wasnt sure if the blood loss or the iron levels had damaged my Tendons

Wed, June 30, 2010 @ 3:24 AM

39. Carolyn Richey wrote:
I was diagnosed with hemochromatosis 3 years ago. After a year or more of weekly phlebotomies I have finally got my ferritin etc at normal levels. I cont giving my blood every 2-3 months. I was feeling really good with migraines only 1 every three months, heart not skipping, and feeling myself again. Well in March I gave a unit of blood and 3 days later my heart was beating so fast I thought I was going to die. Went to the ER and all tests showed everything was ok with my heart. Went to family Dr. next day and he did lab work and said he really feels my heart issues are still related to having Hemo. Days later got my lab results and was shocked!!!!! Ferritin-8, Iron-30, TIBC -343, Transferritin-230 and TIBC sat- 9%!!!!! Dr said everything looked ok!?!?!? REALLY!!!!!! He did send me to have a stress test, and echo which showed everything was great..In may I had another lab workup and levels were the same. I called the Hemochromatosis foundation and told the lady what my lab results were and she said that they were way to low and I should hold off giving blood. I haven't given blood since and when I went to my gynocologist appt last week they checked my hgb ( part of there protocol) and it was15. How could my hgb be 15 when iron, ferritin,etc are low?????? I need to find another hemotologist. I had one when I was first dx but I got behind on money I owed due to hemotologist charging me for each phlebotomy and insurance not covering everything. So he wouldnt see me unless I payed the 500. I have seen several other hemotologists since then but they didn't know much about this so I went back to my family dr. He is the one that found my hemo but am leary now about him thinking my levels are ok. I don't know if I should give blood when my ferritin levels are high again or when my hgb is high. I started craving ice months ago. Eating 10lb's of ice per day (crushed in blender), having restless leg syndrome far to long, tired, moody, anxiety, and noticed losing alot of hair. But dr says hummmmm?!?!?!?! I am tired of not being taken seriously.

Mon, July 12, 2010 @ 10:08 AM

40. Dorothy wrote:
For Susan #33, you really need to take charge of your health care and get you numbers checked. My doctor at first blew me off and said "don't worry, your fine", yeah right. That was back in 2006 when they told me I had rheumatoid arthritis, which I don't have. In the meantime I got worse and worse, they removed my gall bladder and in January my apendix. Now my liver is enlarged and temder. If you have to, get another doctor. Then keep copies of all your results in your own personal file. I track all my blood work and phlebotomies on the sheet I printed off this website.

For cuprak64, I too have tendon issues and was being treated for rheumatoid arthritis for years even though I don't have it. It turns out to be "iron fist" from HH. First my right hand, now my left, neck, shoulder and elbows. Feet and ankles are sore almost every day. I remember reading something about tendons getting covered with iron deposits or something like that.
God Bless and take care of yourselves!

Tue, July 13, 2010 @ 3:37 PM

41. Dude wrote:
I was just recently diagnosed with HH and can really sympathize with Carolyn that it seems that not only your physicians seem to not take the disease seriously , but your family is wose. It took the physicians almost 18 months to determine what was wrong with me. I had surgery on the biggest joints in my left foot due to arthritis. I had to have a plate and six screws to to fuse the joints after cutting out as much arthritis as they could. Surgery, high liver functions (10 blood panels), and high iron levels (10 blood panels) were not enough to make them test for HH. I had so many tests done during that 18 months from CAT scans of my head to my pelvis (at least 3 radiology reports stated that I had an enlarged liver), colonoscopy, EGD, lung functionality testing and many others. Finally, they did the genetic testing for HH which came back with the markers and then a liver biopsy that showed scaring of the liver with no cirrosis that confirmed HH.

My family really does not understand the symptoms from fatigue, irritability, stomach pain and some of the other symptoms. Its like its not serious and that I am faking the issue. I guess alot has to do that I went from having the energy of a 20 year old at 44 to fealing like 80 at 45.

To top it all off I live in the largest city in Tennessee and there is not a facility in the area that will do the phlebotomy except for one and I am begging them to do it sense they really only do it for patients that have privledges at the hospital they are affiliated. I will find out tomorrow. If not I will have to drive 3 - 4 hours or should say 6 - 8 hours 2 or 3 times weekly for the phlebotomy and then after a month take the trip weekly until my levels are where they should be then at least once a month according to my physician.

If you read this thanks for reading my vent, but this had been very hard.

Mon, July 19, 2010 @ 9:51 PM

42. Dude wrote:
Correction:
The facility in town will only do if for patiets that were diagnosed by physicians that have privledges at the hospital they are affiated and order the phlebotomy.

Mon, July 19, 2010 @ 9:55 PM

43. Mark Birdsall wrote:
I am just recently diagnosed with hereditary Hemochromatosis. The symptoms were over looked for years because I am diagnosed Bipolar 1 and the fatigue and depression was assumed to be from the mental illness. I am curious about other aspects of my mental health that may have been impacted by the iron, but can find little conclusive information on line.

Specifically I am curious to know if the mood swings from iron overload can look like classical mania. I also experience regular episodes of impaired or confused thinking and elevated states. Is it possible that this can all be the result of the iron?

This question quickly become very important to explore as many of the drugs that are used to treat Bipolar are damaging to the liver or other organs, and my liver is already having trouble. Also attempting to regulate lithium levels or any other mood stabilizer amid biweekly bloodlettings sounds daunting.

I realize that the question I am posing is case specific and that I certainly could be both Bipolar and have Hemochromatosis, but any information or shared stories about mental illness as a result of iron overload would be instructive.

Thank you

Tue, July 20, 2010 @ 7:24 PM

44. nicola dudley wrote:
I have raised ferritin. The haematologist told me levels were 4000. After reading some posts a lot of people are being treated at levels lower than mine. i was diagnosed with this condition 4 years ago and my levels are always around the same. lowest being around 3500 that is because i cut out oranges and drank more tea for the 6 monthsi think..

I have pain in my joints, chronic fatigue and recently my heart seems to be beating rather fast. (resting 100bpm) i am 39 and still have periods. The doctor says these symtoms are unconnected. sent me for a thyroid test which came back normal so nothing more was said. I have blood tests every 6 months to monitor me. they test renal and bone as well as liver and the usual fbc and feriitin.

I have been told that i don't have haemachromatosis just raise ferritin. I have had the gene test and i don't carry it. I live in the UK and rely on the NHS which is of course overstretched. should i push for a MRI scan to check my liver and treatment of somekind?

Any comments welcome. No body understands they just laugh and say they could do with some of my blood. But it seems to be a serious condition. I was turned down for life insurance maybe this is why.

Wed, July 21, 2010 @ 11:13 AM

45. Mark Birdsall wrote:
@ Nicola Dudley # 44

Your iron is at 4000ng/ml ???!!! Are you sure you have that right? I am not a doctor, but mine are at 850ng/ml and I am sick as a dog. I can't imagine any doctor ignoring that. Then again i have received some pretty awful medical care over the years.
Yes you need to keep pushing for help, get a second and third opinion. It took me six doctors and ten years before anyone found my Hemochromatosis.

Thu, July 22, 2010 @ 12:58 PM

46. nicola dudley wrote:
pretty sure it is in the 4000's. i feel ill most days. tired and achy all of the time. I take tramadol for the pain. The haematologist does not think my tireness is related. i intend to print out extracts from various websites to show him. All of them list chronic fatigue as a symtom. Ive been told to lose weight and go to the gym to improve things. Im not obese just a bit overweight i have lost a stone. The gym makes me more tired. don't feel any better.

Other people on here have levels in the 4000's too. must just affect people differently.

Sat, July 24, 2010 @ 9:20 AM

47. ruby e wrote:
To Mark Birdsall #43
HH is known to affect mood and cause depression -- I"m not sure about mania ....
My own experience (which was prior to diagnosis 20 yrs ago) with the mood/depressive feelings, also included feeling very angry a great deal of the time. This feeling was so foreign to me that when much testing couldn't find a "physical" cause, I asked to be referred to a mental health professional because I was so much "'not myself". I was/am one of those people who people would describe (from the outside ;D) as "easy-going", pretty mellow and calm. During the worst of my times prior to treatment I felt like I was pushing an angry witch back down through the top of my head all the time. It was tiring, and so out of character for me, and such a fight to keep it under control ..... and once my levels started to drop, I went back to my "usual" self!
As well HH was making me very, very tired (can signal depression), and often mentally I felt as if I was slogging through heavy, wet beach sand to get my mind through the day. That feeling went away with the drop of the iron levels :D
My doctor felt that we were just not finding something physically, and once my dad was diagnosed (with many of the same symptoms), I was pretty sure that was what was going on with me too.
Imagine my surprise when my doctor disagreed, since young women (of childbearing age) did not *get* this disease. He tested my anyway, however, and was shocked at the numbers that turned up in the test. I met with my dad's hematologist (who had never had/seen a female patient as "young" as me), as within a couple of weeks I was being phlebotomized 500 ml every week.
It took over a year at that schedule for my levels to come down, and now at about 19 years or so later, I still go in for the old "oil change" every 7 or 8 weeks (400 ml). If we stretch it out any longer than that my numbers go up pretty quickly -- and we actually keep all of them at below normal levels.
When the time is lengthened beyond that my blood pressure also seems to want to go up as well in the last little while; which is a kind of warning to me that things are going up, since bp is usually low.

P.S. (My dad's levels for ferritin were at 5500 when he started --- family doctor was in absolute shock! Mine weren't nearly that high -- but high enough for a "young" female I guess @ 800. My dad's saturation level was 96% and mine was 92%. I also have a sister and brother with full-blown HH, and they both have regular phlebotomy as well. So in our family we are 3 for 3 which is apparently odd ;D)

Tue, July 27, 2010 @ 12:05 PM

48. Mark Birdsall wrote:
@ ruby e

Thanks for sharing your story. Interestingly anger is one of my more frequent out of character moods as well.

Started my Phlebotomy yesterday. I am glad to be on the road to health even though I wish it had started sooner!

Tue, July 27, 2010 @ 6:40 PM

49. Nancy wrote:
Newly Dx'd with Iron Overload..........What a strange thing. No one knows from our family which were all from Poland/Russia.

Question: My WBC is a little high 13.1 when dx'd with HH 435 count. 2 draws it dropped to 12.1 Normal is 10 Has anyone else had a elevated wbc?

3 blood draws and its dropped almost 100pts.

Thu, July 29, 2010 @ 9:48 PM

50. Sharon wrote:
If you are a young woman on birth control pills, be checked for HH. I was taking one that allowed only 4 menstrual cycles per year and my symptoms started "showing" up. My liver enzymes were the biggest clue something was wrong with me and it took months for my family doctor to find out what was causing it. Had a liver biopsy and everything was okay, but had to undergo weekly phlebs for months, then bi-weekly, now to every 3 months. My liver enzymes still stay a little elevated, but not like they were. We keep my ferritin under 50. I have more energy now and suffer less depression, but i realize now how depressed I was before diagnosis. I thought I was just lazy and unmotivated because all I wanted to do was sleep. I stil have memory problmes sometimes, and have arthritis in my hips and thyroid problems, but blood pressure is better. You have to take control and ask your doctor for your blood test resutls at every visit and keep track for yourself so you can educate yourself and understand what is going on in your body. Read as much as you can about HH and make diet and exercise changes as necessary. It is your life and body, be respectful of it and not let anyone else tell you nothing is wrong. Fight for yourself.

Fri, July 30, 2010 @ 12:04 PM

51. Brenda wrote:
My husband was diagnosed with HH 15 years ago. The last year he has been fighting extreme DVT. Has anyone with HH experienced clotting issues? He has not had a phlebotomy for nearly 2 years since his HCT level is not high enough.

Wed, August 4, 2010 @ 7:42 PM

52. Steffanie wrote:
I'm glad that I found this blog. I feel so alone with this disorder. I had never heard of it until recently when I was diagnosed at 36 after having a baby. My levels were at 300 and dropped down to 188 after 1 phlebotomy and after having started my period again four months into breast feeding. I have not gotten much information from my doctor and since I don't think that I have any symptoms, I really don't want to go in for treatments 1x a month into the level are down to 30. I wonder if I don't do anything if the level will keep going up. My doctor says HH is common, but I have not met anyone with this disorder. I am glad to have found a website dedicated to Iron Disorders.

Fri, August 6, 2010 @ 8:42 AM

53. Steffanie wrote:
I wonder if there is a connection between milk production and HH. I had a low milk supply after my baby was born. My blood is also really thick due to the HH. I know that somehow milk and blood are related. Has anyone heard anything about this, does it make sense?

Sat, August 7, 2010 @ 7:52 AM

54. Jennifer wrote:
I was diagnosed with thalassemia trait. It is almost impossible to find any info on this disorder. How do I manage this? I know I'm not supposed to take aspirin or iron supplements. As I understand it, I have too little iron in my blood but too much in my liver. So, do I eat iron rich foods or avoid them? I struggle with some of the classic symptoms, such as fatigue, shortness of breath and headaches. I am so pale that sometimes I look ill even when I feel fine. I'd like to manage this with diet but I can't find anyone who can give me any direction or advice. I contacted a nutritionist but he wasn't any help.

Wed, August 11, 2010 @ 7:33 PM

55. Brian Neal wrote:
Hello, My name is Brian I'm 46 and I am new to this blog. I was recently diagnosed with Hemochromatosis and have completed my 2nd phlebotomy. I am in the first stages of learning that how I have been feeling is directly related to this disorder. Back in 1996 I was diagnosed with Gout and in 2005 I was diagnosed with Kidney disease which has advanced to stage 3. I have edema in my legs for the kidney disease and which I am being treated for. After learning that iron deposits in my joints I am not sure that the Gout diagnoses was correct. It was in January 2010 when I was working as a volunteer that I felt like I had hit a brick wall and could not stand for more than 15 minutes. After that it took about 4 months before I was diagnosed with HH. I am at the point to where I don't feel like doing much of anything and my joints hurt. I actually feel useless around the house, I try to help my wife do things, but I can't without getting exhausted and have to sit down. I would like to know whether or not I am the only one that have felt that way and what I can do to help my situation and if it will get better?

Thu, August 12, 2010 @ 10:48 AM

56. Steffanie wrote:
Jennifer, I wonder if the Hemochromatosis cookbook will help you. I also try to stay away from foods that are high in Iron. I read labels or look at the food chart on this website. It is funny that naturally, I never liked lamb, red meat, and some of the other foods that are high in Iron. I guess that you should find out first if you should be eating foods high in iron or low. Maybe, just everything in moderation.

Sat, August 14, 2010 @ 10:19 AM

57. Mary wrote:
nicola Dudley. if i were you i would get a second opinion. also start donating blood and see if that makes a difference.

Wed, August 18, 2010 @ 5:08 AM

58. TOM G. wrote:
I HAVE A LIST OF NATURAL FOODS & SUPPLEMENTS THAT WILL HELP CHELATE (BIND) THE EXCESS IRON IN YOUR BLOOD WHILE IN THE PROCESS OF DOING BLOOD LETTING........I'M AN 80 YEAR OLD MALE JUST RECENTLY DIAGNOSED WITH THE MUTANT GENE GIVEN TO ME BY BOTH PARENTS.......MY SF SCORE WAS 922.......(LOW BY THE SCORES I HAVE SEEN ON THIS BLOG).......HOWEVER, AFTER 4 DONATIONS (ONCE A MONTH) AND ADHERING TO A REGEMIN OF EATING CERTAIN FRUITS AND TAKING COPIUS AMOUNTS OF ANTI-OXIDANT VITAMINS, I WAS ABLE TO DROP 357 NG/ML OFF MY SCORE......DOWN TO 565......I ATTRIBUTE A DROP OF 120 PTS. TO DONATING AND 237 PTS. TO SUPPLEMENTING...........I'M STILL NOT OUT OF THE WOODS, BUT, WELL ON THE WAY TO HEALTH.........IF ANYONE IS INTERESTED IN THE DETAILS LET ME KNOW BY EMAIL / OR ON THIS BLOG............THANKS

Wed, August 18, 2010 @ 3:20 PM

59. Zena wrote:
I am so glad I found this blog. I too have a family history and now at 52 realize the reason for my parents slowing down. I too had a sudden physical change from age 50 to 52, with fatigue, extreme joint pain, restlessness, crazy loose tendons so that I am continually injuring myself. Does anyone have sudden acute muscle/tendon/bone pain that can bring you to your knees if you're standing? The pain can happen anywhere in my body, crazy places like a single metatarsal, or the side of my hip, or center of humerus, just about anywhere, anytime and not related to exercise. Also, anyone know of any research on the anthropological reasons for this syndrome continuing in mankind? I would like to believe there was a benefit to retaining iron in ancient man and that perhaps our ancestors were sages or had the ability to lead/guide our tribesto food sources/safety due to the fact that the presence of iron gave us greater ability to orientate ourselves to our environment (north pole). Does anyone know if this is being studied in the National Geographic study or by some other group studying genetics?

Tue, August 24, 2010 @ 11:30 PM

60. David Lee wrote:
I have been told for over 10 years now that my saturated ferretin levels are high, all the docotor seems to do is monitor it every 3 to 6 months. A year ago they sent me to an oncolgist he said" the numbers are not to alarming, just give blood every 3 months and we will keep an eye on it" I have never been tested for Hemocromotosis? what tests should I ask for and will this shorten my life?

Thu, August 26, 2010 @ 2:41 PM

61. TOM G. wrote:
DAVID LEE......WHAT ARE YOUR SF SCORES?........ALSO WHILE DONATING BLOOD, EAT A LOT OF GRAPES, STRAWBERRIES, BLUE BERRIES , ALL TYPES OF BERRIES..........THESE ARE NATURAL ANTI-OXIDANTS THAT BIND WELL WITH THE FREE RADICAL (IRON) AND CHELATE YOUR BLOOD...........COFFEE, GREEN TEA EXTRACT, MILK THISTLE, ALSO DO QUITE WELL............YOU SHOULD BE SEEING A HEMATOLOGIST NOT A ONCOLOGIST FOR PRECISE BLOOD WORK......IT'S MY UNDERSTANDING THAT EXCESS IRON OVER A PERIOD OF TIME WILL DAMAGE THE INFLAMED TISSUES OF ALL THE VITAL ORGANS OR ANY INFLAMED AREAS OF THE BODY.......GL

Sun, August 29, 2010 @ 5:02 PM

62. Cheryl Garrison wrote:
Tom (#58 & 61). Eating foods rich in antioxidants is great advice. Iron is a pro-oxidant, which means that it contributes to free radical activity (FRA). Some FRA is a normal component of metabolism, but uncontrolled or excessive FR activity will destroy healthy tissue and damage DNA. Antioxidants counteract free radical activity. Berries, coffee, tea are good sources of antioxidants; so is vitamin C. But many HHC patients shy away from vitamin C because it enhances the absorption of iron. This is true, but vitamin C can safely be taken between meals by patients with HHC whose iron levels are have been reduced to "normal", which is (for adults) a TS% between 25-40% and serum ferritin of 50-150ng/mL.

Mon, August 30, 2010 @ 3:20 PM

63. Kel wrote:
re Mel`s comment, she sounds diabetic

Tue, August 31, 2010 @ 1:30 AM

64. TOM G. wrote:
CHERYL (62).......I CONCURE WITH THE RESEARCH YOU HAVE SUBMITTED......IT'S IDENTICAL TO WHAT I HAVE FOUND ON THE WEB AFTER EXTENSIVE SEARCHING, ONCE I WAS DIAGNOSED WITH HHC..........I WILL BE MEETING WITH MY HEMATOLOGIST ON THE 14TH OF SEPTEMBER AT WHICH TIME I HOPE TO ASK SOME IMPORTANT QUESTIONS PERTAINING TO POSSIBLE ANTI-OXIDANT OVERLOAD..........HA!....THATS A NEW REVERSE TWIST.....AND AS YOU SAY, COULD POSSIBLY DAMAGE DNA AND HEALTHY CELLS........THE IRONY OF THIS, IS THAT AT NO TIME DURING MY COUSELING WITH HIM, DID HE EVER SUGGEST A NATURAL WAY TO RID (FE) OVERLOAD; EITHER BY DIET OR SUPPLEMENTS......GUESS THERE IS NO MONEY IN IT.......BIG PHARMA LOOSES ON THIS TREATMENT; BLOOD LETTING ALSO.........PROBABLY WHY THE SF TEST IS NOT A STANDARD TEST ON ALL BLOOD PANELS TAKEN.......GL

Tue, August 31, 2010 @ 11:27 AM

65. Virginia wrote:
I have been taking a mult-ivitamin with iron for years. Just over a week ago, I accidentally took 4 tablets instead of 1 at the same time. This was 72mg of ferrous fumarate. I didn't seek treatment because I thought it was probably not a significant over dose for an adult. For several years, I have suffered with osteoarthritis, including spinal stenosis and knee problems. A day or so after I took too much iron, my joint pain and disability got much worse for no apparent reason and remains bad, possibly worsening. Could this have been caused by the accidental overdose? I stopped taking the iron. If this is an overdose will it go away by itself in time, or do I need treatment.

Tue, August 31, 2010 @ 11:35 AM

66. Reggie wrote:
I was diagnosed with HH over ten years ago while in my 30s. I had 30 phlebotomies in 30 weeks to get my iron counts down, I had minor liver evidence of iron deposits, nothing to worry excessively about. Now I get about 4 phlebotomies a year at our blood bank, referred to as special donations. GREAT PLACE. I watch what I eat, usually, I don't drink as much as I used to. My numbers are within normal ranges. Take action. Be aggressive with your doctors. Watch your diet based on the information here on the Iron Disorders website regarding food - less red meat, no citrus with meals, more berries and tea - and you can be ok with HH. My grandfather died of liver failure and he wasn't actually a drinker, but he was Irish so everybody assumed he was a "closet" drinker - he wasn't. I'm not going out that way.

Tue, August 31, 2010 @ 12:30 PM

67. TOM G. wrote:
VIRGINIA (65.) .......I ATTRIBUTE MY HIGH IRON OVERLOAD TO MY DOCTOR, WHO SUGGESTED I TAKE MORE FOOD RICH IN IRON BECAUSE OF BEING A LITTLE ANEMIC AFTER READING MY CBC BLOOD PANEL......THIS WAS A MISTAKE ON HIS PART TO DIAGNOSE AN IRON DEFFIENCY WITHOUT FIRST HAVING SUGGESTED A SERUM FERRITIN TEST..........AT THAT TIME, I NOT KNOWING TO MUCH ABOUT IRON AND IT'S POTENTIAL DANGERS, DECIDED TO SUPPLEMENT WITH 18 MG OF IRON FOR 100 DAYS (100 PILLS IN THE BOTTLE)........ABOUT 3 AND ONE HALF MONTHS LATER HE SUGGESTED A SPECIAL SF (SERUM FERRITIN TEST).......LO AND BEHOLD!......MY SCORE WAS 922 , WHICH REQUIRED IMMEDIATE ACTION.....IF YOU READ MY BLOG # 58 IT SOUNDS AS IF MY CONDITION WAS CAUSED BY A HEREDITARY CONDITION CAUSED BY A MUTANT GENE GIVEN ME BY BOTH PARENTS..........HOWEVER, YOU CAN BE A CARRIER AND NOT BE SYMPTOMATIC.......AND AT 80 YEARS OF AGE, I CAN DEDUCE THAT MY OVERLOAD WAS CAUSED BY IRON SUPPLEMENTS RATHER THAN THE MUTANT GENE.......(I SHOULD HAVE BEEN DEAD BY NOW!).........REFER TO NEXT BLOG.......

Wed, September 1, 2010 @ 3:08 PM

68. TOM G. wrote:
VIRGINIA (#65) .......LET ME PREFACE BY STATING I'M NOT AN AUTHORITY ON MEDICAL ADVICE......BUT, SOMETIMES, WHEN HAVING A CONDITION AND DOING EXTENSIVE RESEARCH WE CAN LEARN MORE ABOUT THE DESEASE THAN THE DOCTORS THEMSELVES; ESPECIALY FROM A NUTRITIONAL STANDPOINT........FIRST, YOU MUST DETERMINE IRON LEVEL BY TAKING A SF TEST.......ONCE IT'S DETERMINED THAT YOUR SCORE IS HIGH, THE QUICKEST WAY TO RID THE BLOOD OF IRON, IS BLOOD LETTING.........THERE ARE SUPPLEMENTS YOU CAN TAKE IN CONJUNCTION WITH THIS, BESIDES WATCHING YOUR DIET........MILK THISTLE, I-P6, ALPHA LIPOIC ACID, GREEN TEA EXTRACT, TO NAME A FEW..........THE SYMPTOMS YOU MENTION SEEM TO BE IN LINE WITH A POSSIBLE IRON OVERLOAD, HOPE NOT!..........GL

Wed, September 1, 2010 @ 3:39 PM

69. Mitchell wrote:
I recently had a blood test my iron Serum was 223 ug/dL. My doctor said to maybe give blood but other than that did not say much. When reading about high iron there are several ways it is shown meaning %, mg/dL what is the difference in these measurements?
The range given on my results says 40-155 ug/dL . Well it seems to me 223 is quite high yet my doctor did not say anything except suggest a donation.
Question is this significantly high?
Would I experience any side effects?
How often to give blood and how much reduction does a double red cell donation reduce?
What other tests should I get done?
What test says if I have Hemochromatosis?
Should I consider iron chelation?
What is best product for iron chelation?
nything else I should know?
I realize I should probably look for new doctor but please understand I have NO insurance. I have diabetes ll (fairly controlled)and high triglycerides 300 or so. other than that I relatively healthy. Thanks for anyone that can give some guidance. It is very appreciated. Best regards, Mitchell my email vettegood@aol.com
Ps. I don't eat much red meat.

Thu, September 2, 2010 @ 1:01 PM

70. TOM G. wrote:
MITCHELL (#69)....... BASED ON MY RESEARCH, IRON SERUM (ALREADY STORED IRON)........ IS NOT THE SAME AS A SERUM FERRITIN TEST..... (FREE IRON RADICALS MEASURED IN NANOGRAMS/ ML).........MOST DOCTORS SPECIAL REQUEST THE (SF TEST) WHEN THEY SUSPECT AN ANEMIC CONDITION.......OTHERWISE, IT IS NOT RECOMMENDED......GET ONE DONE, IF IT'S HIGH, THAN YOU CAN START WORRYING!........REQUEST IT BE TAKEN, THE NEXT TIME YOU HAVE A CBC BLOOD PANEL TAKEN..........GL

Thu, September 2, 2010 @ 6:18 PM

71. Tammy Samora wrote:
I have HH also, and I have found that most MD's do not offer any advice. My family doctor looks at my numbers, and does not have a clue. I now follow up with my hematologist. I always get a copy of my labs, and compare them. There is so much information online. I have learned so much, and can now maintain my levels with very little help. One big tip is to drink lots of tea. I drink ice tea all day everyday. I have went from weekly phlebs to not having to have one for 8 months now. I test my levels once a month, and am in hopes that this will continue to work. Good luck to all, and i know you will find what works for you also.

Tue, September 7, 2010 @ 3:15 PM

72. TOM G. wrote:
TAMMY (71).........HAVE SOME QUESTIONS FOR YOU........HOW MANY POINTS DID YOUR SCORE DROP AFTER EACH PHLEB?.........RESEARCH SHOWS, A 30 POINT DROP IN (NG/ML) IS AVERAGE...........DID YOU FIND THIS TO BE TRUE WITH ALL THAT YOU HAVE HAD?.............ALSO, WERE YOU ABLE TO DETERMINE WHAT PORTION YOUR TEA DRINKING PLAYED IN HELPING LOWER THE SCORE?........AWAITING YOUR REPLY.........GL

Wed, September 8, 2010 @ 2:27 PM

73. Tammy wrote:
Tom 72 Wanted to respond to you, and do not have my labs at the office. I will get you the exact numbers. I can tell you that I ended up feeling much worse after the PHLEBs. I was doing it at my local hosp lab, and they lack education on HH. I ended up becoming very anemic. At that point I started trying a number of things to control it myself. Drinking tea is only a part of what I do. I eat very little meat, take in alot of dairy products, avoid vitamin C, no cast iron use, and read every label. I will be more than happy to get you my numbers. For now it is working for me, and I guess it could be one or all of the things that I am doing. Thank you for all your information you are providing. I am so glad I found this blog.

Wed, September 8, 2010 @ 6:00 PM

74. TOM G. wrote:
LATEST UP-DATE ON MY SEPT. 14 APPOINTMENT WITH THE HEMATOLOGIST...........IT HAS BEEN CANCELLED AND MOVED TO SEPT. 23 AT 11:00 A.M.............IT WILL BE INTERESTING TO SEE WHAT HE HAS TO REPORT ON MY DROPPING 357 POINTS ON MY SERUM FERRITIN TEST AFTER 3 MONTHS OF STRICT REGIMEN USING DIET AND VITAMIN SUPPLEMENTATION.........MY CBC BLOOD PANEL TEST WAS O.K..........I HAVE NO SYMPTOMS ( OTHER THAN BEING BORDERLINE WITH HIGH BLOOD PRESSURE ).......I FEEL FINE!.......THAT IS EXACTLY THE WAY I FELT BEFORE ALL THIS HAPPENED.....

Thu, September 9, 2010 @ 1:10 PM

75. Tammy Tibbetts wrote:
My husband just dx with hh his level where 7000 or higher his alk. phos was high. He lost all his platelets and is losing his albumin is this common with this condition. He has become disabled could this be from this condition?

Thu, September 9, 2010 @ 9:14 PM

76. Jeff H. wrote:
Great website and helpful blog! I am a 38 y/o physician and have been investigating why my transferrin saturation (54%) and ferritin (320) have been mildly elevated for the last few years. I am not sure if I have hemochromatosis or not (genetic test negative), but definitely some indication of iron overload. I will tell you that unless a doctor has extensive experience treating patients with iron overload (genetic or not), their knowledge of the condition will be limited. This has been an overlooked condition for years and most docs just can't know everything about everything, it is a lifelong learning process for them as well. Medical textbooks, for the most part, are out of date by the time they are published, and usually only describe "classic" presentations of the condition (i.e. bronze skin, diabetes, cirrhosis) and not the wide variation of severity and symptoms that exists in the population. I have learned a great deal just reviewing the CDC website's information on HH/ iron overload as well as this one.
Bringing in information to your doc from reputable sources such as the CDC(Centers for Disease Control) will help educate and convince him/her to look a little further into your complaints if they seem skeptical. Make them listen to you.

I believe this condition(iron overload) is not a "you have or you don't" type problem, but one that has wide spectrum of severity and causes that we are just starting to learn about. Not everyone with a ferritin of 5000 has HH, and vice versa. The important thing is to get it fully investigated collecting as much information as possible, because the consquences of missing a diagnosis can be tragic.

Hang in there everyone and advocate for yourself!

Jeff

Fri, September 10, 2010 @ 12:10 PM

77. TOM G. wrote:
JEFF........THANKS FOR THE TRUTHFULL COMMENTS ABOUT THE MEDICAL PROFFESSION WHICH LACKS DEPTH IN CERTAIN METABOLIC DIS-ORDERS........IN MY RESEARCH ON THE WEB, I CAME ACROSS A DOCTOR WHO DID SOME EXPERIMENTING ON HIS OWN CLIENTEL........HE WAS PERPLEXED AS TO WHY MANY OF HIS MIDDLE AGE PATIENTS WERE SHOWING SYMPTOMS OF, HEART DEASESE, LIVER PROBLEMS, ARTHRITIS AND MALADIES ASSOCCIATED WITH OLDER AGE..........HE SUSPECTED IRON OVERLOAD AND GAVE ALL HIS PATIENTS A (SF) TEST..........LO, AND BEHOLD!........30% OF THEM HAD A HIGH SF SCORE........MORAL OF THE STORY, EVERYONE SHOULD BE TESTED FOR THIS CONDITION AT LEAST ONCE A YEAR; IT'S MORE PREVELANT IN OUR SOCIETY THAN WE THINK AND HAS DIRE CONSEQUENCES IF NOT CONTROLLED...........

Fri, September 10, 2010 @ 3:22 PM

78. Barbara wrote:
I found out a year ago, at age 59, that I had HH. My Ferritin Level was 1044. I have
phlebotomies twice a month. I have developed arthritis in my hands as a result of
HH and had a very early menopause (age 31) and was infertile. I can not believe
that my Doctor's did not pick this up years ago, especially with an Serum Iron of 200.


I am also have Fibromyalgia and have filled for Social Security Disability.

My best to everyone, who has HH !

Fri, September 10, 2010 @ 5:15 PM

79. MG wrote:
I have iron depletion without anemia. My ferritin was a 2. My symptoms are ---I felt extremely fatigued, shaky and weak. Also, I was craving red meats and salmon all the time. I always felt that my feeling of hunger could never be satisfied no matter what I ate. The doctors always asked me if I had Pica (i.e. cravings for ice, etc.). I have been a lifelong runner and felt terrible on my runs like I had no energy. I could hardly run one mile without feeling like I was going to collapse. Does anyone else have food cravings such as the ones that I mentioned?

Sat, September 11, 2010 @ 4:37 PM

80. Michelle wrote:
Im 21, 5 years ago I was told I had pernious anemia. I had very heavy menstral cycles when I was younger, which are now controled with birth control. I was given two shots of B12 right away and it raised it a little bit. I was able to start oral supplements. they worked for about a year. And then my B12 started to go down again at which time my doctor started me on injections. I was getting one injection a month. When I had my next blood work done, my doctor told me that my ferrtin levels and B12 were both critially low. He increased my B12 shots and started me on ferrous glucongate. I found it very hard on my stomach and switched to proferrin. Now my B12 shots are 2 times a week and I am taking double the maximum dose of the proferrin. My B12 is almost at normal levels but my ferrtin is still undetectable.

My doctor has sent me to a cardiologist-everything was normal. A gastroenterologist had a colonoscopy and gastrocopy completed both came back normal.

I am tired and I feel like ive tried EVERYTHING. Any suggestions??

Sun, September 12, 2010 @ 3:58 PM

81. Cassy wrote:
My 8 yr old son has a thalassemia trait that he inherited from me and his doctor has been wanting to put him on iron since he was little. Last year, he was going to have his tonsils removed but he had problem with his blood work and was sent to a hemotologist at Texas Children's. I was always told that iron suppliments will not help with thalassemia but this doctor put him on suppliments. After a few months, my husband and I took him off the suppliments due to constipation and never put him back on. He is now in 2nd grade and his past teachers have all mentioned that he has trouble staying focused and seated during class and his teacher this year suggested that I look at his diet. He is a poor eater and eats mostly bread and cheese. I have been reading and have found articles that suggest that his iron deficiency may have something to do with his lack of focus and hyperactivity. Any suggestions/knowledge would be greatly appreciated

Sun, September 12, 2010 @ 10:06 PM

82. Cheryl Garrison wrote:
In response to the following posts:
#81 To Cassy; His poor attention could be due to inadequate iron; since you report that he is not a very good eater, he may be lacking in other important nutrients. His pediatrician could evaluate other nutrient levels besides iron, such as copper and zinc. The anemia associated with thalassemia is difficult to correct sometimes. I would like to introduce you to 2 excellent resources for thalassemia trait & diet info: http://www.thalassemia.com/thal_trait.html and Cooley's Anemia Foundation http://www.thalassemia.org/
#80 To Michelle re: Proferrin low ferritin: You might talk with the gastroenterologist about the possibility of impaired absorption. For example, if you are taking any type of proton pump inhibitor (a treatment for acid reflux disease) or consuming high doses of supplemental calcium, tea, or coffee within 2 hours of a meal, you could be impairing absorption of the iron. Calcium is the only known inhibitor of heme iron (Proferrin is a heme-based supplement). Consuming the Proferrin with a glass of tomato or orange juice can step up absorption. We have a flyer called "Boost Your Ferritin"--it is in our Iron Library--Resource section under Reading Room Information Brochures.
#79 MG: what you describe is called pica which is a symptom of iron deficiency. It is important to find out why you are iron deficient. You could begin with steps mentioned in the above comment. In the Iron Library Resource area there is a Starter Kit for Anemia that you might find helpful.
#78: To Barbara: if you have not had a vitamin D level checked, talk with your doctor about having this level checked.
#76: To Jeff H. Thank you for your comments; we always appreciate hearing from members of the medical community. If you happen to live or work near Charlotte, NC, you might enjoy our conferences. These are two separate events back to back. The one on Friday Oct 8 is for health care professionals with CME offering (4.5 credits); Saturday Oct 9 is for patients and their families. Details are on the homepage.

Mon, September 13, 2010 @ 9:06 AM

83. Bud wrote:
I am hoping to find someone out there in Alaska that has found a good doctor to treat there hemachromotosis.
Please contact me with any info for Alaska or maybe even Seattle.Thanks

Mon, September 13, 2010 @ 3:13 PM

84. Cassy wrote:
#82 Cheryl - thank you so very much for your information and websites. i will check them out now. blessings, Cassy

Tue, September 14, 2010 @ 8:08 PM

85. Betty wrote:
Is the DNA test the only definitive test for hemochromatois? My son age now 46 was first diagnosed in a mental hospital at age 33. He has not sought treatment and now is a drug addict.
My 37 year old son had a complicated gall bladder surgery with as well as prior to surgery and elevated liver enzymes following. Now not feeling well at all.
I am 77 years old and have life long health problems. I was diagnosed at age 26 with hypothyroidism that resulted in infertility until treated. Age 32 my gallbladder removed with large stones in the bile duct. I have now osteoporous, arthristis,chronic insomnia etc. I have or had some 15 or symtoms.
I ask my md to test me he was very reluctant. Then told me that I did not have hemochromatosis nor was I a carrer. And that I should forget about it.
Can any answer my initial question? Please

Fri, September 17, 2010 @ 10:19 AM

86. TOM G. wrote:
BETTY (84)......NO!.......GET A SERUM FERRETIN TEST (SF) FIRST......IF IT'S HIGH, THAN THE METABOLIC DIS-ORDER CAN BE TESTED FURTHER TO DETERMINE IF IT'S CAUSE WAS BY MUTANT GENE OR AQUIRED BY OVERLOADING WITH HIGH IRON FOODS AND/OR SUPPLEMENTS...........YOUR IRON BINDING AND SATURATION PERCENTAGES WILL ALSO BE CONSIDERED......THESE ARE PART OF THE (SF) TEST......GL

Fri, September 17, 2010 @ 11:09 AM

87. Betty wrote:
I already had the test. The doctor said I was neither a carrier nor had hemochomatosis but I have all of the symptoms I listed. In all of my research I have read it doesn't skip generations and either my husband or I has to be a carrier. Some people carring the gene have no symtoms.

The only purpose I want to know is for the other children I have. At my age I am not expecting much. I want my other children and grand children to know. They already know they have a brother with it. They haven't been tested. I want a DNA for this reason.

Fri, September 17, 2010 @ 1:42 PM

88. John Haedrich wrote:
I went on a vacation recently and was surprised that my body caused the TSA metal detectors to "trip" no matter where they "looked" (my hand, my head, my foot - everywhere. In reading on-line I see that Iron Overload can cause this phenomena. I requested blood tests for % Saturation (19%) and Ferritin (242 ng/ml) which caused my doctor to conclude that there was "no way" that my body iron was tripping these detectors. On the return trip 2 weeks later the same issue occurred at the airport. I am at a loss as to where to turn next.

Fri, September 17, 2010 @ 10:53 PM

89. TOM G. wrote:
JOHN........COULD IT POSSIBLY BE OTHER HEAVY METALS?.......SUCH AS, LEAD, CADMIUM, OR MERCURY....HMMM!.........HOW ABOUT A POTENT ENERGY FIELD THAT YOUR BODY IS EMITTING AND YOUR NOT AWARE OF?........LET US KNOW WHEN YOU FIND OUT..........GL

Sat, September 18, 2010 @ 12:03 PM

90. Betty wrote:
Concerning my previous entries.........I even bought my doctor a copy of "The Hidden Dangers of Iron". He kind of brushed it aside and drew blood and two weeks later told me I was not a carrier of hemochromatosis nor did I have "hemo".
I do not know if I should of fasted prior to the blood draw or not...seems I read that I should.
But, something just didn't ring true about it.
He is so crippled with arthritis that he has to use a hand held tape recorder. however I know most doctors do these days, and can barely write presciptions from crippled hands. His fingers look like sausages. . He seems to think that I was questioning his authority. He has been indifferent to me ever since. We had a great relationsip for years and has treated me for hypothyroidism osteoporus, irregular heart beat..
I am not sure if Medicare will cover DNA tests and I am financially strapped right now.

Sun, September 19, 2010 @ 9:12 AM

91. TOM G. wrote:
BETTY.....DO YOU HAVE COPIES OF ALL THE BLOOD TESTS YOUR DOCTOR HAS TAKEN?......DO YOU KNOW HOW TO ENTERPRETE THEM?.........IT SEEMS THAT YOUR RELYING HEAVILY ON WHAT HE IS TELLING YOU RATHER THAN BEING MORE IN CHARGE......SEEK THE HELP OF A SPECIALIST (HEMOTOLOGIST) IF YOU SUSPECT HH AFTER REVIEWING YOUR FS SCORES BEING HIGH.....GL

Sun, September 19, 2010 @ 9:09 PM

92. Betty wrote:
All he said was I was not positive for hemo or a carrier. Then he proceeded to report on B-12, and other results of the test and said I was fine. He is from a foreign country and seems offended if I question him. He is the only doctor I have ever had that has successfully treated my hypothyroidism and I don't want to loose him.
My next appointment is Oct.6. I think I am going to tell him that I am going for a DNA test and see his reaction. Other than that, I don't think I will bother with him about further tests. Apparently he knows nothing about hemo even tho I bought the book for him.

That fact I wanted validated is: Both parents have to be involved for a child to have hemochromatosis. I have both books from Iron Disorders but this question lingers and I want to absolutely sure I have this fact correct before proceeding. At 77 I am not particularily interested in knowing if I have hemo but I am interested if I am carrier or have a form of hemo, for the sake of my children and grandchildren.
I am not seeking treatment.

Mon, September 20, 2010 @ 8:24 AM

93. Betty wrote:
I think this link proves my doctor didn't know what he was talking about or else was deceptive. If you agree please respond because I still doubt myself at times.

http://www.mayoclinic.com/health/hemochromatosis/DS00455/DSECTION=causes

Mon, September 20, 2010 @ 9:00 AM

94. Tammy wrote:
I am hoping someone will coment on my situation. I had stated before that my husband has a serum ferritin of 7000 but normal iron tests and they are starting blood letting tomorrow and I am kinda nervous. The dr says that Tomi has to much iron in his liver and we need to get rid of it and he says he believes he has hh but has not done the genetic testing yet. My husband does have liver problems and gi problems amongst other things and he does not drink. I just hope that this is okay cause he lost all but 1000 of his platelets in March. Any advise.......

Mon, September 20, 2010 @ 5:14 PM

95. Debi wrote:
Hi. My sister was told today she has to have 12 iron infusions. Can anyone tell me how long the treatments take and what is the reason for this? She takes iron daily. She is a breast cancer survior. Her Dr did some tests and believes she is bleeding internally and can't find out from where. Any info would be great. Thanks

Wed, September 22, 2010 @ 4:16 PM

96. marvin wrote:
hello all; I am new to this site as I recently went to the Dr for an annual check up to find out my Ferritin level was 480; I was never tested for ferritin as it was not part of the normal routine lab test requistion until 2009 in Canada; all other tests were perfectly nortmal as they have been for years; I suspect I have had elevated levels of ferritn for a period of time prior to this recent checkup but was never made aware of it before now; anyway I am awaiting final lab tests on the TIBC and Serum Fer test and saturation tests; I have spent countless hours researching HH and have seen/heard many different stories that have been helpful to my situation; one Dr says I do not need to donate blood another says yes do it now; I suspect that my daily multi-vitamin, love of iron rich foods and red meat contributed to my levels as they are today; all other blood work including liver, etc and ultrasounds are perfectly normal ashtye always have been in the past; I have been watching my diet very close, reading food labels and drinking lots of black tea everyday; as a side note I did this for 2 weeks and then went and had another ferritn test and it dropped by 25 points; I will keep this up and get tested monthly to follow the progress; I am considering blood donation to accelerate the reduction of ferritin but will wait to have all of the information and lab results before I take that next step; otherwise I am very healthy and have no symptoms of chronic HH at all; I will keep you posted and thank you to all for your blogs as they are very helpful; cheers marvin

Wed, September 29, 2010 @ 5:11 PM

97. marvin wrote:
#58 Tom; can you provide me a list of the antioxidants that helped you reduce your levels down; I am interested in finding a natural method to reduce the levels in addition to blood donation; thanks marvin

Wed, September 29, 2010 @ 5:56 PM

98. jo wrote:
My husband has a Ferritin level of 514. He tested negative for genetic HH. Our family doctor sent him to a Hematology - Oncology doctor who ran extensive tests on his liver, lungs, and bones. The tests revealed osteoporosis.

The specialist told my husband it would take two or three years to get his ferritin level to normal with a blood draw every other month. Even though I don't want my husband to become anemic, the blood draws appears to be spaced at a maintenance level rather than therapeutic level.

In the mean time, we have significantly cut down on red meat (once a week - is that still too much?) and I have my husband drinking tea daily. We eat a lot of vegetables, berries, nuts and fruits. He is also on a good supplement for the osteoporosis and Vit D (his levels were extremely low) and may be placed on meds for the osteoporosis.

Is the blood draw too infrequent?

#58 Tom, I would be very interested in your supplementation program.

Fri, October 1, 2010 @ 5:02 PM

99. TOM G. wrote:
TO.............MARVIN & JO.......LET ME REFER YOU BACK TO MY POST #68.......THERE I MENTION 4 ANTI-OXIDANTS THAT I USE DAILY.......OTHERS ARE.....GAMMA VIT-E......SELENIUM......CALCIUM D-GLUCARATE.......COQ 10........L-GLUTATIONE.........VIT-D3......MAGNESIUM CITRATE.......FISH OIL...........I HAVE DROPPED MY SF SCORE FROM 922 TO 499 IN 4 MONTHS WITH 4 PHELBS AND USING ALL OF THESE SUPPLEMENTS WHICH BIND WITH THE FREE RADICAL IRON.......GL

Fri, October 1, 2010 @ 9:21 PM

100. Duane wrote:
I'm 61 & found out I had HH during gall bladder surgery over 2 years ago when my liver did not look healthy. Dr done a bio at that time and eventually a gene test. Yes, a gene mutation of C282Y from each of my parents. I could sleep 14 hrs at times. My ferritin was 1896. I done 6 blood draws every 2 weeks for a pint., but don't have good luck with needles. I was dropping about 150 points per month. The Dr then sent me to Mayo Clinic & after 2 days of tests I was put on 750mg of Exjade. I was the third person that Mayo Clinic recommended this for.This pill was FDA approved 4 years ago & is expensive. Many pharamacies have not heard about this & they need training to sell it. I get mine thru Bioscrip and now take only 250 mg per day and have a ferritin of 23. I still am quite tired especially in the AM but once I get going I can go all day. If I get too relaxed I can fall asleep on occasion. I am better staying active all day. I have lab every 3 months & limit my iron in foods. I have liver damage per Mayo Clinic. They said steaks are to be smaller than the palm of my hand, no alcohol, no tobacco, no raw fish or handling of it and no walking barefoot on sandy beaches due to the bacteria vibrio vulnificus.

Fri, October 8, 2010 @ 10:19 PM

101. Betty wrote:
Any attendees from the Iron Conference back yet? Please post information.

Thanks

Sun, October 10, 2010 @ 6:41 PM

102. Tammy Samora wrote:
Hi, Sometimes it is hard to find a positive in having HH, but I just did. I would love to share this with you all. My uncle now has Bone Cancer, and some other type of blood cancer. He was struck with this after just feeling like he had the flu. So very hard to take. He now has to have blood tranfusions quite often. His insurance will only cover so many per year. I spoke with him on the phone on Sunday, and wished so much that I could do something for him. I thought about it, and it came to me that I can give him blood. My numbers are holding pretty good, but my doctor said that it would be a great idea. So I have set up the donation process today, and all my blood will be saved for him. We can do this if we have HH. Alot of people think they wont take our blood, but with a doctors note the United Blood Service is happy to use our blood. In my case I got to choose a wonderful person to give it to.

Mon, October 11, 2010 @ 4:54 PM

103. TOM G. wrote:
TO TAMMY #102.........APPERENTLY YOUR BLOOD TYPES ARE THE SAME.........WHAT A GREAT GIFT TO SOME ONE IN NEED..........NICE GOING!.........THANKS FOR SHARING THIS INFORMATION WITH US............TOM G.

Mon, October 11, 2010 @ 8:14 PM

104. Kathy wrote:
Hello,
This is a great site and very informative. I just went to the Dr. the Hematologist and have been working with my low iron anemia for the last year. I have RA and am on NSaids and also low thyroid. I have a 7.4 level for hemoglobin I think. I've gone through two colonoscopy and endoscopy in the last year. They said I have inflamed lining of the stomach. I don't seem to be able to absorb iron through my intestines. So I had my first infusion two days ago. I hope this works. I'm very tired and disappointed. I wonder if I can do something more natural to help this situation in the future. Now I just need infusions to get my levels up. I have great Dr.s and am lucky. But would like to have more control on my side. I really enjoyed reading #'s 58, 67 Tom G. you are quite informed and proactive that is great even though it is the opposite of my condition the information is still helpful. Do you read other sites that could be helpful if so please tell us. # 62 Cheryl G. Your comments are also inspiring. Between the multitude of conditions I seem to have acquired over the last few years I appreciate the positive advise. Best wishes to all. Kathy

Sun, October 17, 2010 @ 2:26 PM

105. Melany Willams wrote:
I am 38 years old and have iron deficiency anemia along with endometreosis that causes monthly lung collapses (catamenial pneumothorax). I'm wondering how many other women out there are experiencing the same symptoms and have not been properly diagnosed. I thought that the lung collapses and constant air leakage was the cause of my ever increasing memory loss, chronic fatigue, shortness of breath and depression (mood swings), but now I'm wondering if it hasn't been due to low iron in combination with the poor breathing due to the endometreosis in and around lungs. I have 11 of the 13 symptoms listed for iron defiency amemia: I'm always cold, have blue fingers and nails,nail ridges, shortness of breath, extreme fatigue and loss of interest in things that have always been important to me. I'm going to try iron rich vitamin supplements, and increase my lean meat and vitamin C rich food intake and see how I feet after a while. I think utimately a total hysterectomy with no hormone replacement will cure both problems.

Fri, October 22, 2010 @ 4:32 PM

106. Joanne wrote:
Hi, i was recently diagnosed with severe iron deficiency. My Dr., a blood disorders specialist, is sending me to have iron infused by IV once a week. I read what it says here about that. Now I am scared to death. Has anybody here ever had it done? If so were there any complications from it? And, last but not least, is it painful? Thanks.

Sun, October 24, 2010 @ 12:31 PM

107. Bonnie wrote:
Can an HH patients ferritin level that dropped dramatically be described as Acute Phase Response when they have never had any phlebs?

Thu, October 28, 2010 @ 4:55 AM

108. TOM G. wrote:
LATEST UP-DATE.............FERRITIN LEVEL DOWN TO 356 ng/ml........FROM A STARTING HIGH OF 922.......AFTER 4 PHLEBS AND SUPPLEMENTING WITH IRON CHELATING VITAMINS..........ALL WITHIN A 5 MONTH SPAN.........GOAL SHOULD BE MET BY THE END OF THIS YEAR, I HOPE!................GL, TOM G.

Thu, October 28, 2010 @ 1:48 PM

109. TOM G. wrote:
TO BONNIE # 107.........WHAT WAS THE SF SCORE BEFORE THE SUDDEN DROP?......WHAT IS IT NOW?.........WHAT IS THE TIME SPAN IN QUESTION?...........

Thu, October 28, 2010 @ 1:53 PM

110. Bonnie wrote:
Tom
Two years ago serum ferritin was 3020 on diagnosis. NO phlebs due to health reasons.
MRI scan revealed heart and liver damage. Reassessment to date ferritin 1802. WHY? Hematologist comments were that Ferritin is an "acute phase reactant" I'm confused.

Thu, October 28, 2010 @ 5:11 PM

111. Holly M. wrote:
Tom (#109),
I am very interested in the "Iron Chelating Vitamin" you mentioned. I am doing the phlebotomies. Thanks.

Sat, October 30, 2010 @ 8:37 AM

112. TOM G. wrote:
HOLLY M. #111............CHECK BLOGS #68 & #99 FOR LIST OF GOOD ANTI-OXIDANTS THAT HELP CHELATE FREE RADICAL IRON...........MY LAST SF TEST SHOWED I DROPPED 143 POINTS IN ONE MONTH......ALSO HAD 1 BLOOD DONATION..........LATEST UP-DATE.......MY SF SCORE IS DOWN TO 365 FROM A HIGH OF 922 WITHIN A 5 MONTH SPAN.......USING THE VITAMINS AND HAVING 5 PHLEBS........IT'S MY UNDERSTANDING THAT 1 PHLEB WILL DROP YOUR SCORE 30 TO 70 PTS.......HAS ANYONE READING THIS BLOG HAD A GREATER DROP?............PLEASE RESPOND IF YOU HAVE.......

Sat, October 30, 2010 @ 9:52 PM

113. TOM G. wrote:
BONNIE #110.......FREE RADICAL IRON HAS A PROPENSITY TO SETTLE IN DAMAGED AND INFLAMED ORGANS OF THE BODY, JOINTS, BRAIN, LIVER, HEART, PANCREAS ETC........IT SEEMS TO ME, THAT YOUR IRON IS IN THE DAMAGING STAGE (MRI SAID HEART & LIVER DAMAGE) AND IS BEING USED UP DESTROYING VITAL ORGAN CELLS.........HENCE, THE LOWERING OF YOUR SF TO 1802........THIS IS JUST MY ENTERPRATATION AND SHOULD NOT BE HELD AS GOSPEL.......TRY USING THE VITAMINS AND EATING THE FRUIT I MENTIONED IN BLOG 68 & 99.........IT CAN'T HURT YOU...........GL

Sat, October 30, 2010 @ 10:12 PM

114. wrote:
My 21 year old son has a ferritin level of 2300. He had a successful bone marrow transplant 8 years ago for AML. His iron levels have been monitored because of the many blood transfussions but the levels have not dropped as expected over the years. He will be genetically tested next week for the genetic disorder for hemochromatois and will soon begin treatment. Of course, the larger concerns are tissue damage but hair loss since transplant has been of concern for a 21 year old male. Is there any evidence that hair will regrow after treatment?

Fri, November 5, 2010 @ 9:53 AM

115. AJB wrote:
When my sister was diagnosed about 6 years ago she mentioned her doctor told her there was a 25% chance that a sibling would also have the disease & she insisted we all get tested. We didn't all rush out & have it done but did have our physicians upgrade our annual blood work to include the iron panel & feritin tests. Since then 5 out of 6 siblings have tested positive for the gene pairing that could result in HH. 2 have active symptoms & have undergone Phlebotomy. The other 3 are monitoring their levels & are within normal ranges. But we are aware & keeping track, forewarned so to speak. The 1 only has one of the genes, but also has diabetes & rheumatoid arthritis, both HH traits. Go figure.

Sat, November 6, 2010 @ 1:00 AM

116. Jenny T. wrote:
I was diagnosed with HH in August of this year and started phlebs at that time. My SF at diagnosis was 1054. I had repeat labs done about 3 weeks ago and my SF was about 285. Is this possible? I had repeat labs last Thursday to make sure this is correct. For those who have had this disease a long time, did this happen to any of you?

Sun, November 7, 2010 @ 6:05 PM

117. TOM G. wrote:
JENNY......YOUR 769 POINT DROP IN 3 MONTHS IS A PHENOMINAL SCORE.......WHAT DID YOU DO?.....DONATE 2 PINTS A MONTH INSTEAD OF 1?......ONLY KIDDING........I THOUGHT I WAS DOING GOOD WITH A 557 POINT DROP IN 5 MONTHS.....BUT, YOU DID ME ONE BETTER........ONCE A MONTH PHLEBS USUALLY DROP 50 TO 70 PTS. ON AVERAGE AS I UNDERSTAND. (TOLD TO ME BY A HEMATOLOGIST).......DID YOU TAKE A CHELATION DRUG PRESCRIBED BY YOUR DOCTOR?........IF NOT, COUNT YOUR BLESSINGS AND GOOD LUCK...............TOM G.

Sun, November 7, 2010 @ 7:41 PM

118. Leigh wrote:
I was diagnosed last year with HH, after my father tested positive. I have relocated to Louisville Ky and cannot find a place for my phlebotomies. Every Hematologist here has merged with the hospitals and want to charge for hospital outpatient services, thats $100.00 dollar co-pay and an $1800.00 charge to my insurance to draw a pint of blood twice a month and throw it away. The Red Cross won't do it here, neither will my primary care physician, and the nearest FDA approved blood center is an hour and a half away. I only weigh 107 lbs and it is not safe for me to drive that far after giving that much blood. Please help I am only 32 and out of ideas...........

Tue, November 9, 2010 @ 9:46 AM

119. DFL wrote:
I was diagnosed with HH years ago. For many years the Community Blood Bank of South Florida in Miami did my phlebotomies free as a community service and threw away the blood. (They were a wonderful group.) Finally, two or three years ago, they saw the light and started using the blood for their blood bank. - We have recently moved to Wilmington, NC. Thus far the only blood bank I have found is the Red Cross. They refuse to accept blood from people with HH and they offer no free phlebotomies. The closest towns that would be able to provide that service are Charlotte (4 hours away) and Raleigh (2 hours away). Before I my HH was diagnosed, I gave blood to the Red Cross and I have donated money to them in the past . I thought their job was to help people with blood services. I guess HH doesn't fit into that category. I was told the reason HH couldn't donate was because the Red Cross has a policy that no one should benefit from giving blood (primarily meaning financial gain) and clearly donating would benefit the HH person. On the other hand they also say that giving blood gives one a sense of real satisfaction and pride - knowing that the donation is saving lives. I consider that a psychological benefit. Apparently you can benefit psychologically but not physically. Is that discrimination? Seems to me no one should be allowed to give blood since everyone who donates stands to benefit....(Ok a little bit sarcastic...sorry.) If anyone lives in the Wilmington area, I would love to know what you do for your phlebotomies. (My twin in California pays something like $300 for hers because there are no services available.)

Wed, November 10, 2010 @ 4:42 PM

120. James wrote:
Hello fellow HH people
My little brother was diagnosed with HH may of 09 with a faritin count around 2300 and that he already had sever liver damage in july of 09 I was tested and had a 1700 count with mild liver damageMy brother did over 50 pints of blood at 1 a week and finaly got it to 21 but at a cost becouse giveing that mutch Blood depleated more than just the iron it also depleated important vitamains and other metals the body needs
I on the other hand only had to give 20 pints of blood I did 10 in a row that droped it to281 then did 2 a month after that till it droped to 14 in may of 2010 in aug it tested at 21
Both of us has the dubble C gene our dad had the H and C gene and our mom just had the one C gene our big brother just got the one H gene
I didnt have insurance so had to find a place to give my blood and that proved a problem becouse the red cross wouldn't do weekly and dont take blood from someone with HH but I did find a place it was only 150 miles away 300 round trip but they did it for free with a doctors order they not only took the blood but would use it to save lives witch made me feel better
My little Brother had insurance and would got to the doctors office and was charged a copay then they would take his blood and put it in a container labled contaminated and dispose of it and that would depress him
the thing I wont to know is why do they not test for this sooner why do you have to almost die before doctors admit that HH even exist
if it was found sooner and cought before feritin and/or Iron levels get to high you could just give blood 1 to 2 times a year and watch what you eat then it would never be a problem

Wed, November 10, 2010 @ 9:23 PM

121. TOM G. wrote:
JAMES.......SIMPLE ANSWER TO YOUR QUESTION........NO MONEY IN IT FOR THE DOCTORS OR BIG PHARMA!........DIET AND NATURAL VITAMIN CHELATION IS THE CURE PLUS FREE PHLEBS..........LIKE I SAID, THE SF TEST SHOULD BE A STANDARD TEST ON ALL BLOOD PANELS TAKEN ONCE A YEAR..........MY INSURANCE IS BILLED JUST $29. FOR THIS PROCEDURE WHEN TAKEN......SMALL PRICE TO PAY FOR PEACE OF MIND AND GOOD HEALTH!........GL TOM G.

Thu, November 11, 2010 @ 11:46 AM

122. Paula wrote:
I'm 29 years old South African women and have been anemic for the last 5 years, I have been on 6 different kinds of iron supplements with terrible side effects that I stopped taking them and concentrated on increasing my iron with my diet.

5 months ago, I was so tired that I could barely get out of bed, my hair was falling out and I was bruising so easily. I went to the dr and he did a CBC and found out that I had severe iron deficiency anemia. My body wasn't absorbing the iron. The dr gave me a double iron injection. After the second treatment of double iron injection, my HB levels weren't increasing.

The Dr was concerned I was bleeding internally and admitted me to hospital for various scans and tests which all came back negative.

Whilst in hosptial, I was given an iron infusion for 12hrs. Within a few days I started feeling better and had more energy, but had terrible side effects of nausea and loss of appetite, which lasted for many weeks. A month later my HB levels showed a satisfactory increase. I have to go for a check up again in January to see if my HB levels have decreased again or remained constant.

However, I'm starting to feel the fatigue setting in again, so will have to go and have the check up sooner than expected.

Fri, November 12, 2010 @ 2:36 AM

123. Dr. Mary wrote:
Hi I am a 50yr OB/GYN who was diagnosed with HH in 1/10. I went into the hospital on 12/29 after gaining 30lbs of fluid over three week period. I was always fatigued and had arthritis but thought it was because of the job and I was turning 50. I went to the hospital for a quick cardiac eval. I was not going to stay long just over night because I had to get back to work(. I am a single mom with 2 children in college). They did an EKG and Echo of the heart. I was waiting to go home and a nurse came in with a wheel chair. I told my mom to bring the car around and the nurse said didn't the doctor talk to you. I said no and she said your not going home your going to ICU. I was shocked!!!!!! After they rushed me off, they pulled my 70yr old mother aside and told her to call all my family because I was not going to make it though the night!

I hate being the patient!! I was admitted with heart failure and liver failure. My ferritin was inially 7000. I was placed on a heart and liver transplant list. I do beleive in miracles and the power of prayer. Today I am still alive doing great! I know your next question is what did I do. When I left the hospital after 3wk stay I was so thankful I did not die. I feel the power of healing is in your mind. It is your attitude toward healing and re-establishing a balance in life. Stress causes a dis-ease in our body. We need to all find individually ways to let go of the stress. I found music, journaling, exercise, yoga, mediatation and walks along the ocean are definite Rx towards health. I have a port and draw off about 600cc every 5 days. I did do exjade for the first 4mos ( oral pill that binds to iron). I do procrit shot as necessary ( a medication to stimulate bone marrow to help anemia from blood draws) I looked into aphersis but could not find anyone in my area to do it. I intially checked my hgb and hct weekly to see how my body tolerated the blood draws. Intially at Mayo they would not draw off my blood if my hgb was <12 because of my heart failure. I wanted to be more aggressive but they did not want the liability so I went to another doctor who would listen to my concerns. My ferritin now is 2400. My heart is now normal but my liver has focal cirhosis. I do not know my prognosis but I now appreciate the health I have and live everyday like it is my last.

Sat, November 13, 2010 @ 1:55 PM

124. TOM G. wrote:
GREAT STORY DR. MARY.......THANKS FOR SHARING YOUR YOUR CLOSE ENCOUNTER AND GOOD ADVICE ON HEALING........GL, TOM G.

Sun, November 14, 2010 @ 3:36 PM

125. Reegs wrote:
Dr. Mary.....you are one of the only ones I have heard of with a ferritin at the same level as mine.

I am now a 47 year old male. I was diagnosed in Dec. '08, with HH. at the age of 45. My ferritin level was at 7103.

I live in Chicago and have been seeing specialists at Northwestern Hospital.(Downtown) My liver specialist, who I believe is good, continues to tell me that my iron level is the highest she has ever seen or has heard about. As well as the highest level ever seen at either Northwestern and the University of Chicago - Hospital. You would think I would get plaque in the lobby or something.....but nothing so far.

Since March 1, 2009 I have been having phlebotmies done. Since then until today I have had 48 draws done. My schedule was for once a week - my hg had to be at least 11 to be drawn. I had to stop at timesbecause the combinaton of fatique and low hemoglobin just wiped me out. Fortunately I am okay with needles.

Damage:
1. Liver is at the end of stage 3 and entering into stage 4.....which is cirrhosis. Oddly my liver continues to function normally. So I am not a transplant list of any kind.
2 Pancreas has damage to it. I am slowly turning Diabetic.
3. My bone density is lower than it should be. And in time I will develope Osteoporosis.
4. My Pituitary Gland has sustained damage. So far it has only affected my abilitity to produce testosterone. Which for men is brutal. My level was down to .06 when the low end of the scale is set at 2. I am now on HRT. It has helped tremendously bring my energy level back up. But after 4 months of it I am still only at 2, when I need to be at about 6.5 and higher.
5. My heart has scar tissue on the outside of itself. It does cause sharp pain from time to time but my heart continues function normally.

After 48 phlebotimies my ferritin level is at 1400. Which sounds good, and it is.....all things being even. The headache is that on August 4, 2010 it was also 1400. Since then I have had 9 more phlebotimies. Showing that at the moment I am dry in taking any out. My doctors have told me that a ferritin test can have a swing of 300 to 400 points. But it doesn't cover the math.

Family & Friends
It appears that most of my family and friends are in a fog of denial.

As it has been echoed on this posting page......most people - including those in the medical field have very little clue to what Hemochromotosis is all about. I feel lucky and secure with my team of doctors that I see.....my General Practitioner - Hepatologist/Hemotologist/Cardiologist/Endocrinologist. The most important is my GP. He is an internist but also specializes in Sport Medicine. He is sharp.

My BEST advice to anyone looking for help is to make sure your GP is of strong enough personality to get involved in your treatment. A "booger wiper" won't cut it.
My second Best advice.....learn everything you can so you can participate in your care. Just because someone is a Doctor does not mean they know what they are doing or that they are not full of shit. I have fired 1 Cardiologist because of that reason.

Back to my family and friends. I have noticed that the first conversation with them is so overwhelming that 90% of what i told them went right by. I'm not mad about it. In my sistuation and many of you guys.....there are so many parts to this dreadful thing that it is a information overload. And in the end......they can't see it. They can't smell it. they cannot relate to it. I have people who know that I have this tell me I look great. Look healthy. But they don't understand that I am not tired but I am fatigued. Which I didn't quite understand the meaning of until this hit me. It's funny.....most people hate needles, most people have never donated blood, most people have never seen anyone give blood. I've given almost 7 gallons. I'm lucky.....I have good veins. My concern now of course if they collaspe after so many pokes. I just found out that I am indeed going to be diabetic.....my sister told that was no big deal......people live with that everyday. Hmmmmmm.

This is a dreadful disease......I felt over this past summer that I was going to die. I have never felt so bad. (It was due to the exceedlngly low testosterone level) For fun I used to walk around Chicago - Northside & Downtown just for fun to meet people, find trouble, have a few beers along the way. In the summer.....I could barely walk 100 yards without getting so winded and exhausted that I had to sit and pant like a dog to get my breathe back.
But because we all don't have a disease that is flashed on every television news magazine explaining it others is futile.

To the poster who asked about the mood swings. The answer is YES! That could also be related to a low testosterone level. I have never been such a emotional roller coaster as I have been the last 18 months. As far as the anger component.....I felt it. But I was able to control that part for the most part. But my downfall was my Feelings......I never had many before.....but I sure all of a sudden had everyone imaginable. And I was not shy in expressing them to a select few........what a mess. I could not control them.....UGH. But Thankfully now I have them back under control.

For those of you who have read this long drawn out writing.....I'd like to tell you that I did it unselfishly so others could read my story and find insight or a feeling of not being alone in this thing. Maybe even some direction.....but I'm not that valiant.....I wrote this to get it out of my head......selfishly. Really...what do you do with this 'stuff''. So we are all in a brutal battle that we didn't choose.....that was laid at our feet......through no fault of our own. I was orginally told that this is a 1 in 2 million disease, then a year later a 1 in a million disease...then recently a 1 in 248 disease.

In closing.....I do hope this helped a few people. I feel your pain and frustration. I welcome any emails from anyone who would like to chat.

God Bless

ps. Please forgive my bad spelling and grammer and excessive use of periods...........

Thu, November 18, 2010 @ 7:24 PM

126. Kate wrote:
Dear Tom,
I am 45 y.o. female just dx. with hemochromatosis,heridiatary. I am truely overwhelmed and scared to death. Reading your blogs,it appears you are very educated on this.My iron level is 224,saturation,87%,serum ferritin 1184,liver biopsy,with an iron level of 7.I had my first phelbotomy this week and just as they expected my h&h dropped to 11.1,so now no more phelbotomy until the h&h is 12.I was wondering if you could help me with diet.I am a nurse{nurse curse} Any suggestions?

Thank You for your time in advance
Kate

Fri, November 19, 2010 @ 9:31 AM

127. TOM G. wrote:
KATE:....... REFER TO MY BLOGS #68 & #99 FOR LIST OF GOOD ANTI-OXIDANTS THAT LOCK-UP FREE RADICALS (IRON) AND SHOULD HELP DROP YOUR SF SCORE......EAT PLENTY (DAILY) OF BLUE BERRIES, BLK. BERRIES, STRAWBERRIES, GRAPES, CABBAGE (COLE SLAW), DATES, COFFEE, GREEN TEA, BLK. TEA.......ALL THESE HELP CHELATE THE BLOOD.........DO NOT EAT RED MEAT, ORGAN MEAT AND ANY PRODUCT FORTIFIED WITH IRON........LOOK AT THE LABELS...........THIS DIET HAS BEEN WORKING FOR ME, HOPE IT DOES THE SAME FOR YOU........GL

Fri, November 19, 2010 @ 12:41 PM

128. Kate wrote:
Dear Tom,

Thank you so very much for the information.............

Kate

Fri, November 19, 2010 @ 3:37 PM

129. TOM G. wrote:
KATE........KEEP US POSTED ON YOUR PROGRESS.......NOT TO WORRY TO MUCH , YOU HAVE A FAIRLY LOW SCORE COMPARED TO OTHERS WHO ARE SUFFERING........ YOU PROBABLY CAUGHT IT IN TIME, JUST LIKE I DID.........GL, TOM G.

Sat, November 20, 2010 @ 12:13 PM

130. Eric wrote:
I was dx with HH about 5 years ago around christmas, now my joints (knees, feet, shoulder) are very sore and hard to walk without pain, mornings are the worst. I have been asking my dr if my symtoms have anything to do with my HH and he keeps telling no it shouldnt. I have a dr who wants to do surgery on my knee but i really do not want to. I am always tired and really dont want to do anything like i use to do, i was alway very athletic and my dr also says my symtom should not have a contection to my HH. Has anyone eles dr told them the same thing i am really getting frustrated with the way i have been feeling lately and no one can tell mw why i feel this way. Any suggestions would be helpfully.

Sat, November 27, 2010 @ 4:04 AM

131. TOM G. wrote:
ERIC (130)........REFER TO BLOG #68 & 77..........YOU HAVE ONE OF THE SYMPTOMS OF IRON OVERLOAD (ARTHRITIS) (TIRED FEELING).........WHAT IS YOUR (SF) SCORE?......ARE YOU WORKING WITH A HEMOTOLOGIST?.........IF NOT, GET ONE QUICK!......LET US KNOW THE OUT COME OF YOUR SF SCORE (SERUM FERRITIN TEST)........GL

Sat, November 27, 2010 @ 12:01 PM

132. Wade H. wrote:
Eric (130)....I was diagnosed HH 08/10 and started with a ferritin level of 5012 with primary symptoms being fatigue, weakness and joint pain everywhere. I have just completed phlebotomy #8 and my level is 2805. My dilema is this, since beginning the phlebotomies, my joint pain has increased and my Hematologist is telling me the same thing, "HH is not or should not be the cause of severe joint pain".. She has referred me back to my regular Dr. and he has referred me to a rheumatologist. Is this similar to what others have had to do, or do I need to shop around for a Hematologist that understands that pain is associated with HH?

Sun, November 28, 2010 @ 2:15 AM

133. Eric wrote:
Tom(130) Im not for sure what my levels are at this time. I have not kept up with my levels to much before, i just saw my dr and he would say its time to take out some blood and i would just take what he said and said ok. I didnt know to much about HH and really didnt know it was as bad as im finding out. I have an appointment in a week and from now on im going to keep track of everything and all my levels from now on.

Tue, November 30, 2010 @ 3:53 AM

134. Eric wrote:
Wade (132) It seems from what i have read from other people on here with the same conditions is that the dr do not seem to be familiar with HH and all the systems that come along with having HH. They just know what they have studied but it seems they do not listen to the patience that have HH and what they are going through. I would say just keep letting your dr know how you are feeling and if you like your dr keep the one you have, i know its very frustrating when they dont listen to what you are telling them about how you feel. Hang in there...

Tue, November 30, 2010 @ 3:59 AM

135. lori woods wrote:
Why isnt Porphyria known as an iron overload genetic disorder? the national porphyria foundation is a crock of crap, I knew my husband had iron overload mainly because he took iron for a year (prescribed by a doctor) and he had numerous (one unit 2 times a month, for about 2 years) blood transfusions, he was a walking iron man, and why dont people listen to their patients? my husband passed away june 25, 2009 at the texas transplant institue in san antonio when the transplant doctors knew he had hepatic porphyria, but they claimed he was non compliant with taking his meds--and they also claimed they know nothing about porphyria, how can they be transplant doctors and know nothing about iron overload? Not to mention the doctor removed his galbladder and said his liver 'wasnt as bad as he thought' dont you think he would have seen iron deposits on his liver? Considering he died 7 months later.........................................can someone explain to me why NO ONE would help us??? And how do I make sure this doesnt happen to anyone else again? thank you
lori woods

Tue, November 30, 2010 @ 7:25 AM

136. TOM G. wrote:
LORI #135.............THANKS FOR SHARING YOUR STORY ON THE PASSING OF A LOVED ONE BY THE HANDS OF AN INCOMPETENT, UN-INFORMED MEDICAL ESTABLISHMENT........YOUR STORY SHOULD SERVE AS A WAKE UP CALL TO ALL PATIENTS WHO PUT THEIR TRUST IN DOCTORS AND DON'T BECOME PRO-ACTIVE IN DEALING WITH THEIR PHYSICAL PROBLEMS.................BEST TO YOU & FAMILY, TOM G.

Tue, November 30, 2010 @ 1:18 PM

137. Mary D wrote:
Hi, I just found this blog mostly because I was becoming lax in treating my HH over the past year and my last test showed only a 28 ( up from a normal of 15) ferritan but a 92% saturation and a serum iron over 200. I was diagnosed over 10 yrs ago and did weekly phlebotomies for 10months. I had my siblings get tested as well as my parents. Everyone had it, I was the worst of the kids and my dad eventually died of primary liver cancer but developed arthritis and diabetes before the cancer. He was also an alcoholic which increased his absorption of iron.
My only symptom when I was diagnosed was severe knuckle joint pain in my hands. By the time I went to the dr's my rings didn't fit, and I couldn't shake someones hand without dropping to my knees in pain. Sign of peace in church was a finger tip handshake! My doctor ran my tests checking for arthritis, that was negative but my iron was high. He sent me to a Rheumatologist who instantly diagnosed me with HH. A liver biopsy confirmed a totally saturated liver. My point is that if I had not had the severe joint pain in my hands I never would have been diagnosed.... Yet each time I ask the Hemotologist about the correlation I am told there is no connection to joint pain. Well I don't believe that. Every time my joints begin to ache my levels are high. So I suggest that we know our bodies better than our doctors and if you have HH and joint pain then you might want to check your levels. I have never used the Red Cross to donate because I thought we couldn't. Since my co-pay has gone up to $50 per phlebotomy I think I will try that out.
I have enjoyed reading your posts...just remember that once you get your levels under control it is really just a matter of maintaining it...it's not a bad disease compared to some and we can control it easily. I just let money cause me to slack off and I shouldn't have done that...whatever your holiday celebration is this season may it be joyous...

Sun, December 5, 2010 @ 7:20 PM

138. L. Beth wrote:
I went to the doctor with constant abdominal discomfort. My ferritin is 7740 and my other iron test showed 240 but that level should have been no more than 170. Genetic testing showed I was a carrier but inconclusive as only 2 genes were tested for. My doctor is now sending me for a liver biopsy and CT Scan but is not convinced I have HH. What else can cause this. The prognosis seems to be taking forever...any advise? Should I be worried....my doctor says my levels are not outrageous but from what I have read they are. Any advise would be appreciated. LB

Fri, December 10, 2010 @ 2:25 AM

139. Cheryl Garrison wrote:
Post # 137 Mary, what you are describing is called iron avidity, which is a condition of normal or low serum ferritin with an elevated TS% (transferrin-iron saturation percentage). Continued phlebotomy can worsen the condition. We have an article about iron avidity in the Iron Library Reading Room Section; Articles: http://www.irondisorders.org/articles/

Post #138 Beth: High serum ferritin can also occur with copper overload (Wilson’s disease) or a rare condition called Hereditary Hyperferritinemia Cataract Syndrome. Early onset cataracts is a sign of this latter disease; high ferritin in this case is not a condition of iron overload. Unwarranted phlebotomy could be harmful. Read November 2010 nanograms: Ferritin—an important part of the iron panel. Link on homepage under News.

Fri, December 10, 2010 @ 8:23 AM

140. L. Beth wrote:
Cherly:
I so appreciate your comments. Thank you so very much.

Fri, December 10, 2010 @ 7:49 PM

141. Kitty wrote:
I under went a Gastic Bipass about 5 years ago. 18 months after the surgury to present I have been battling anemia. The iron preparations don't seem to help. My current Ferriten level is 11. Has been as low as 9. I was getting good help with Dextran infusions every few months but now my doctor says that I have to wait as it is discussed if I can have more. I know it makes my legs hurt and feel like lead, walking is difficult, depression, my hair starts to go white, I don't concentrate..like a veil between me and my thoughts. Did I say I am constantly exhausted?

Any suggestions on how to guide my MD that this is the best treatment? I feel wonderful and all symptoms go away after the second dose.

Me...tired...in Los Angeles

Wed, December 15, 2010 @ 8:43 AM

142. Dorothy wrote:
Well, here I am one year after my HH diagnosis.
Thought I would give a little update; started with iron 213, ferritin 2312. Fatigue, hair loss, joint pain and just overall exhaustion was taking over my life. I was always asked "how can you be so tired? you're young and healthy"?
I have had my gall bladder removed, doctor never thought to check iron deposits, had my appendix removed; also never checked for iron. I had been treated for rheumatoid arthritis (2006-2009) which I didn't have anyway. Lots of nasty drugs were taken for that.

I took charge of my own health and started reading like crazy, keeping notes, web sites and anything else I could find. Then my brother calls and says "guess what?" "I have this iron issue and it's hereditary, maybe you should get checked". Low and behold I am homozygous C282Y.

I started phlebots weekly, made some dietary changes, had a liver biopsy which showed stage 3 fibrosis, no chirosis yet, and a concentration level of iron which is a 3 out of 4.
My latest test show iron =192, saturation = 88%, TIBC = 235 and ferritin = 690. Its not great but it is improving, albeit slowly.

I am still exhausted most of the time, my joint pain is all over instead of just in my knuckles (iron fist). Knees, elbows, feet, neck and hips are the worst. Eric #130 I feel your pain! I do take supplements, no red meat, continue phlebots weekly. Next tests and scans end of January. I'll post afterwards.

Just like Leigh#118 the distance and cost of treatment has caused issues, my local health care center is very remote so my blood is thrown away. When I go to Phoenix I go to United Blood Services and give there, it's free and they actually use it :)
I have traveled often lately and have never had issues like #88 John at the airport. I even have titanium rods and screws in my back, never stopped me yet...my turn will probably come.

I just wanted to say that I wish nothing but the best for all of my fellow HH family out there on this blog. We must be proactive, make our voices heard, keep after our families to get tested when they look at us like we're a little on the nutty side. It took time and lots of pushing but I got all 7 of my siblings to test, 3 of us are being treated right now, a niece just was diagnosed Tuesday.

Happy Holidays to all of you and God Bless!

Thu, December 23, 2010 @ 11:59 AM

143. TOM G. wrote:
DOROTHY #142........THANKS FOR SHARING YOUR STORY..........WISH YOU AND YOUR FAMILY THE BEST FOR THE NEW YEAR........KEEP US POSTED ON YOUR PROGRESS......I WILL BE UP-DATING MINE AFTER JANUARY 11 TH...............MERRY CHRISTMAS TO ALL!.........TOM G.

Thu, December 23, 2010 @ 12:52 PM

144. Michael wrote:
Hi, am new to the blog and site; I guess my questions relate to the levels of serum ferritin versus serum iron. I have gone through my blood tests going back 5 years and my ferritin has come down from 130 (which seems to be high) to a current level of 68.
which is first off a good thing. But it would appear i am dumping iron for lack of a better word. (i.e. iron being dumped from my serum ferritin into serum iron??), which is part of the reason for the high iron saturation levels of 59%

My serum iron as of the last test was 155 which is borderline high and my TIBC was 262 (which is relatively low, as i understand it) for an iron saturation of 59 which is high (i see the handout that says ideally iron saturation s/b in the range 25-35%)...so my questions are:

A) the iron saturation means my blood is saturated with iron at 59% when it should be in the 25-35% range. SO "factually" I have too much iron "in my blood" and may require a series of phlebotomies to reduce?? (see B), as...


B) The measurement and two components of iron saturation is Serum Iron/(Divide by) TIBC. In my case my serum iron is 155 (was 170 3 weeks ago) which is relatively high and my TIBC is relatively low at 262. Therefore in purely mathematical terms i can reduce my iron saturation of 59% by either
i) lowering my blood iron (serum iron) OR by
ii) increasing my TIBC (I am guessing this is the genetic component of the calculation, ie we either absorb and bind ironinto serum ferritin well OR we do not)

C) Another goal other than A and B is to have your serum ferritin levels between 25-75 (ideally 50 or slightly below)..thus i am pretty close to this level NOW at 68

D) SO this is where it gets dicey and i am not asking for advice just an understanding...
from what i have read on the site, you lower your serum ferritin by approx 30 pts every time you have a phlebotomy of a pint of blood ....??. Also, ferritin iron is bound iron is it not which inidicates it is stored at the cellular levels in our livers/spleen (i am guessing on this last part)

MAJOR QUESTION
E) Going back to A and B, since I can most effectively reduce my iron saturation by reducing my blood iron (serum iron), ( as well as avoiding certain dietary iron things like alcohol, vit c with meals etc) then the best way to reduce the iron saturation is by phlebotomies, but then i run the risk of reducing my serum ferritin below the suggested levels of 25-75 (ie serum ferritin reduced by approximately 30 each phlebotomy)

F) Again if I am right and i am "dumping iron into serum iron from ferritin stores", this high blood iron might be a transitory matter but one that might cause problems (i have lyme-bacteria and viral and systemic yeast and parasites) and high serum iron feeds these problems...therefore getting the serum iron lowered is a priority.I have been drinking lots of black tea and lactoferrin which is supposed to bind iron in the gut

G) In 2010, i had a series of cavitations cleaned, the theory of which these are a source of systemic infection..so this might account for the drop in ferritin. I have read on this site that chronic illness (lyme and cavitaions which are basically gangrene of the jaw causes body to store iron..so maybe the fact that my blood iron is up and serum ferritin is down is that I have eliminated some of this chronic illness and ion the process created another problem (release of iron)

H) I have heavy metal issues (mercury poisoning mostly), so to my body, iron is another toxic heavy metal that needs to be cleared immediately

appreciate anyones thoughts..great forum and site ..Blessings to all
-michael

Mon, December 27, 2010 @ 5:44 PM

145. Barry wrote:
Reading these blogs have been very helpful.
I'll try to keep my story brief. Normal routine physical in March '10. I'm a 64 year old male. Mentioned to my doc that I was tired, leg and feet joints sore and was having heart palpatations and a higher than normal heart rate from time to time. I'm an avid bicyclist and always monitor heart rates. I always do very well during annual stress tests and did so again, but this stress echo test drew an observation from the cardioligist that my heart was enlarged. He chalked that off to what he called a runners heart based on my bicycling and activity level. My doc, however, added an iron study screening and DNA test to my normal blood tests taken during the physical. He called me that night and emailed me a lot of material on Heritary Hemochromatosis (it was only the second case he's seen in 25yrs. of practice) . He said the ferritin levels were over 500, which as it turns out were the max values this particular lab could measure. He referred me immediately to a hemotologist, who did another iron study and found my ferritin to be 1945, my iron to be 281, and iron saturation to be 108%. Have had all of the kids, brother and sister checked out for HH. I'm the only one.

Have had weekly phlebotomies until July of '10. Ferritin went from 1945 to 554. Now it seems I have plateaued, coming down some and going back up some but ferritin staying in the 375 range since July.

. Around the same time I plateaued, my doc doubled my dose of a generic statin I was taking.. I did some research on the meds I was taking and found that this statin and some others I'm taking have iron oxide in them. My hemotologist and I are doing more to see if this is affecting my blood results.

The comments in these blogs provide me with good information and allow me to dig deeper when I'm trying to get to the bottom of some of these things. Tom G's comments on diet recommendations are helpful.
Barry

Sat, January 1, 2011 @ 1:03 PM

146. TOM G. wrote:
THANKS BARRY....KEEP US POSTED ON YOUR PROGRESS.........HAVE YOUR SYPTOMS BEEN ALLEVIATED SOME, SINCE DROPPING YOUR SF SCORE?............

Sat, January 1, 2011 @ 3:26 PM

147. TOM G. wrote:
THANKS BARRY....KEEP US POSTED ON YOUR PROGRESS.........HAVE YOUR SYMPTOMS BEEN ALLEVIATED SOME, SINCE DROPPING YOUR SF SCORE?............

Sat, January 1, 2011 @ 3:27 PM

148. Barry wrote:
Reply to Tom G. Heart palpatations and periodic high heart rate are both gone. Still have the sore lower extremity joints but less intense now that the ferritin levels have dropped.

Sat, January 1, 2011 @ 4:12 PM

149. Cheryl Garrison wrote:
141 Kitty: People with gastric bypass are not only at increased risk for iron deficiency but for other nutrients such as B12, vitamin D, folate and zinc. For iron deficiency, if you are able to take pills, there is a heme-iron based oral supplement brand name Proferrin. In some areas you can get this product over-the-counter, but we encourage you to obtain it through your physician so that you can be monitored. We have received positive remarks from individuals taking this form of iron supplement (less gastric upset and improved hemoglobin).

142 Dorothy: As your numbers decline, take care not to get overbled, which can result in iron avidity, a condition C282Y homozygotes are prone to experience. Our most recent newsletter (December) is on this topic. The link to our newsletter is on homepage under Iron Disorders News.

#144 Michael: I encourage you to read the last two newsletters on the topic of “Serum Ferritin” and “Iron Avidity”. Answers to many of your questions are contained in these two single topic articles. The link to our newsletter is on homepage under Iron Disorders News.

145 Barry: The iron oxide in statin drugs would not likely contribute much to your iron levels--if at all. However, we have learned from patient reports (mostly from men) that lower extremity pain was attributed (by their doctors) to prolonged use of statin drugs. Once the statin drug was discontinued, the pain subsided. We do not know if this is more prominent among patients with elevated iron or seen in the general population; your doctor would be able to tell you. Very important: Statin drugs should not be stopped except on the advice of your doctor. One medical journal article may be of interest: J Gen Intern Med. 2008 23(8):1182-6. Prevalence of musculoskeletal pain and statin use. Buettner C, Davis RB, Leveille SG, Mittleman MA, Mukamal KJ.

Keep reading everyone; it makes a difference. And Tom: thanks for being such a loyal contributor. C. Garrison, Executive Director, Iron Disorders Institute

Sat, January 8, 2011 @ 2:06 PM

150. Dorothy wrote:
Just wondering if any of you have had associated cardiac issues with your iron overload?
I know the iron can cause heart problems, just trying to find out how common iit is.

I've started noticing an increase in heart rate even when I'm not doing much. Also some shortness of breath on and off. No chest pain or discomfort.
Made appointment with my cardiologist for end of Feb. just to get a baseline.

Hope you are all doing well, keep up the blogs, sharing is great!

Wed, January 12, 2011 @ 4:13 PM

151. TOM G. wrote:
#150. DOROTHY.........MY SF SCORE WAS UNDER 1000 NG/ML 8 MONTHS AGO.........NO CARDIAC PROBLEMS TO DATE.......SF SCORE 243 NOW AFTER 7 PHLEBS, COPIUS AMOUNTS OF VITAMINS AND DIET.....WOULD LIKE TO HEAR FROM PEOPLE WITH 2,000 TO 6,000 SF SCORE OVER A PERIOD OF TIME...... A CARDIOLOGIST WILL TREAT YOUR SYMPTONS WITH MEDICATIONS UNLESS IT'S SOMETHING THAT NEEDS IMMEDIATE SURGERY.....A HEMATOLOGIST WILL GIVE YOU A BASELINE ON A METABOLIC BLOOD DIS-ORDER THAT COULD CAUSE HEART PROBLEMS.........GL AND KEEP US POSTED ON YOUR PROGRESS...........

Thu, January 13, 2011 @ 5:17 PM

152. helen wrote:
Very interesting blogs, but I have a question about iron I don't see an answer to. 18 months ago I had fibroids and heavy bleeding. After trying oral supplements, my Dr said my ferritin was still way too low (I don't know the actual #) and started me on iron injections, which I had for 14 weeks. I then had a hysterectomy and my ferritin was 115, iron at 14. Two months later it was 206 and 17, then went to 243 and 22. That was a year ago, and now my ferritin is at 379, iron level wasn't done.
About a year ago (6 months after the iron shots) the whole area where I have the staining from the shots started to recede and physio says I have atrophy of both gluts. It's now quite visibly deformed. I have been sick this whole year and am now diagnosed with chronic fatigue.
When I read about iron stores I have to wonder if I am still releasing iron into my system from where I had the reaction to the shots. I don't take supplements. Has anyone ever heard of anything like this?

Appreciative of any advise, as my Dr completely minimized the gluteal problem, saying that sort of thing is common. I was a nurse. I've never seen a rear end like mine!

Sun, January 16, 2011 @ 6:18 PM

153. Maura wrote:
Very informative blog. New to this site and the ferritin levels- mine 500s six months ago. I am a 68 year old woman and had my levels tested in June, 2010 because my cousin's two sons were diagnosed with HH. I have decreased the iron in my diet and donated blood 3 times. I have the ferritin tested before ( 273), I donate and after (207) in November, 2010.I have always been very athletic and healthy untill I had a STROKE in Sept, 2009.
It was a wake up call. The neuroligist in the hospital put me on CRESTOR but I went off that when i read the side effects along with the fact that i have very low, healthy cholesterol levels -as did my mother.
I went to another neurologist who showed me
the mri results and the spot in my brain where the "Incident" occurred. That picture along with the continued numbness on the right side of my face, makes me want to get to the root cause more than just taking beta-blockers (propranolol, indorol) for the rest of my life. This neurologist said that i had migraines with auras and nausea rather than pounding headaches. I knew that bright lights gave me headaches, so I have always avoided the lights.

Now to the connection with high FERRITIN. Two weeks ago I googled STROKE and FERRITIN together, and the first of many articles (dated in the 1990's) was that high ferritin is a risk factor for stroke in postmenopausal women. I always heard that we need to be our own health advocates, but this shocked me. None of the 5 doctors who have treated me for the stroke said or did anything about my ferritin level. I had it tested solely at the suggestion of my cousin.

I figure I am a walking chemistry set, and one thing is connected to the other. Hope sharing my experience will help someone else. I will keep reading - knowledge is power

Fri, January 28, 2011 @ 9:43 AM

154. TOM G. wrote:
AMEN TO THAT MAURA!... #153..............THANKS FOR SHARING YOUR HEALTH EXPERIENCE WITH US.........YOUR ON THE RIGHT TRACK AND GOOD LUCK!

Fri, January 28, 2011 @ 1:10 PM

155. Bill D. wrote:
In 2008 I had a total hip replacement and prior to the surgery I was informed that my ferritin count was at 2300;( I didn't know what that was); I had the hip done in July , HH tests in August, confirmed genetic HH and began phlebs every 2-3 weeks. I am now on maintainence and after 42 phlebs, am down to a ferritin of 26.
I always told my wife that I felt that I had some weird joint / muscle disease because I was always sore and achy. I also was diagnosed with MS, exacerbating-remitting type at age 30 and had a few major episodes in my younger years, but now at 62 I haven't had any episodes in quite some time. Now I know the cause of the joint pain and am really glad I had the hip surgery, other wise I would have never known about HH. A year later my gall bladder was removed (stones) and I am now facing shoulder surgery in a few days. Point being I feel that much of my health issues are related to HH.
I would like to know if others have had similar issues such as MS, Osteoarthritis, Appendix and Gall Bladder, Bone Spurs, etc.??
keep the faith!

Tue, February 1, 2011 @ 3:11 PM

156. Cheryl Garrison wrote:
#150 Dorothy:
It is well documented that abnormal heart function is associated with iron overload, especially when free (unbound) iron is present. Ferritin serves as a containment vessel for iron; transferrin is a protein that binds with iron moving it to various locations (liver, spleen, bone marrow). Iron can also be bound by another protein called lactoferrin. These proteins are essential in the management of iron. Every cell of the body contains ferritin. The heart is structured differently from other vital organs; it is a muscle and does not contain as much ferritin as other vital organs. Therefore, the heart has less protection from unbound iron. This unbound iron can damage heart tissues directly or it can damage the pituitary resulting in abnormal thyroid or adrenal function, both of which can cause an irregular heart beat. If the heart is damaged directly by iron, the irregular beats (arrhythmia) are caused by iron-mediated heart cell death. This death (necrosis) creates a bad spot (scar) which interferes with the heart’s conduction (“electrical”) system. You will have the sensation of “skipping a beat”. A rapid heart beat can be related to a surge of adrenaline—generally you will feel flushed and perhaps experience a mild sensation of light-headedness (this symptom by the way is also present in people with iron deficiency). Slow, thudding heartbeat can be a sign of low thyroid function. When you see the cardiologist (which is a very good idea) ask which test best identifies the underlying cause of the heart related symptoms you are experiencing. The cardiologist will advise you and may possibly refer you to an endocrinologist to evaluate adrenal and thyroid function. You may also be referred to a pulmonologist (lung expert) to evaluate lung function. Shortness of breath can be a sign that the heart is working too hard to reach healthy oxygen levels.

#152 Helen
Discoloration around the injection site is common and permanent; you could ask about IV iron versus injection. The rising serum ferritin with low serum iron levels is seen in cases of inflammatory response. Ask your doctor for a repeat full iron panel: hemoglobin, fasting serum iron, TIBC and serum ferritin; additionally you can ask for a CRP (C-reactive protein) and a GGT level. CRP will help determine inflammation. GGT is a liver enzyme that we urge people to request when serum ferritin is elevated. Read more about GGT in our Iron Library: Four Tests that Solve Big Mysteries.
#153 Maura: The citation you might want to share with your doctor is: Stroke. 2005 Aug;36(8):1637-41. Serum ferritin is a risk factor for stroke in postmenopausal women. Authors: van der A DL, Grobbee DE, Roest M, Marx JJ, Voorbij HA, van der Schouw YT.
Evidence of iron mediated peripheral artery disease (and stroke) is beginning to emerge. We will write about it in our newsletter (nanograms) once findings are reported in medical journals.

#155 Bill
Osteoarthritis, gall bladder disease and bone spurs are known consequences of hemochromatosis. People with mutations of HFE (the gene for classic hemochromatosis) are at increased risk for these diseases. There is less evidence that hemochromatosis is a risk factor for MS, although MS lesions contain high amounts of iron.
Thank you all for your posts; keep learning and take care.
Cheryl Garrison, Executive Director
Iron Disorders Institute

Fri, February 4, 2011 @ 7:55 AM

157. Sorenna wrote:
Has anyone had elevated bilirubin?

Symptoms: Elevated vit b12, elevated bilirubin, PVCs and PAC's, parethesias, joint pain, insatiable hunger, neurological, fatigue, weakness, thrombocytopenia,a nd low white boood cells.

Much worse after a bout of taking spirilina.

Makes me mad to think no one tested me ............

Sun, February 6, 2011 @ 4:58 PM

158. G. Isaacs wrote:
Could you separate this blog into 2 parts, iron deficiency, and iron overload? Alternatively, could you put a search box on this blog page? Or, head each entry with big bold letters and headings like iron deficiency or iron overload? The reason I am asking, is that I am interested in the iron deficiency entries, and because they are currently in the minority, there is a lot of information I have to wade through to find them!.

Thu, February 10, 2011 @ 3:57 PM

159. nan c wrote:
I too am interested in iron deficiency articles and after reading10. Mel and 22. betty collins...my thought was I could have written these myself! My oncologist seems to be "treating" this as not so rare to normal: yet I DO NOT have many other friends that need blood transfusions or iron transfusion. Is he treating it this way because I am not dying from iron deficiency?? PLEASE do not get me wrong, I DO feel truly blessed when I am sitting in a Chemo chair knowing I am NOT injecting harmful toxins into my body, but I have kids and I have questions and I am not really sure where this is going. I have found other sites/blogs/healthboards on IDA...but all of the "accounts" are from 3 years ago. What happens to these people? Does it get worse? Is it statis quo? (that would be fine) How "normal" is this??? My new montra is "It IS what it IS"...I'm just curious if it it IS that odd??? Any response welcome.

Thu, February 17, 2011 @ 9:08 AM

160. Miriam wrote:
Hi, my name is Miriam Ruiz from Mexico.
I am writing you because my husband was diagnosed with hemochromatosis last year. His levels of ferritine are very high. He started the phlebotomy program extracting 375 ml of blood per week. My husband does avoid the red meat and vitamins. Can you please share with me your advices in order to decrease the iron´s absorption?
Thank you very much

Thu, February 17, 2011 @ 3:20 PM

161. glenda wrote:
"The Hemochromatosis Cookbook" recommends daily multivitamins, with recommended quantities of milligrams for different ingredients. So far, I've found a multivitamin at Trader Joe's with No Iron, but it has more than the recommended amounts of Vitamins C and A.
Can anyone suggest a brand that fits the recommendation?

Sun, February 20, 2011 @ 8:21 PM

162. Aimee Halpin wrote:
I started my own blog chronicling my journey with this genetic disorder...this is the middle of it, so read more or less as you desire:

http://theburnedhand.wordpress.com/2011/01/23/hereditaryhemochromatosis/

Sun, February 20, 2011 @ 9:07 PM

163. nan c wrote:
After reading my last entry and waiting for some response...I realized just how "whiny" it sounded. My apologies

Does anyone know : once Dr. has told you body no longer absorbs iron...
(No GI issues/No excessive bleeding/No Celiac-Don't know why??)

*does this situation ever rectifies itself? OR
*does body just needs iron transfusions OR
*does the amount or frequency of needing iron transfusions change (get more severe??)

Tue, February 22, 2011 @ 11:43 AM

164. Vivien wrote:
I am 43yo female diagnosed with the C282Y gene in May 2010. My levels of we not so high compared with others on this blog. Transferrin Saturation 52% and Serum Ferritin 283. After giving 1 1/2 donations at Red Cross ( I got light headed on the second and they stopped mid way) my levels got down to 17% and 126 by last November. When I saw my Dr I felt great but had never connected mild joint pain with this condition. Only about 2 weeks later the hip pain I'd been experiencing went from now and then if I went on long walks to excruciating levels in both hips and now I feel like a real crock. I can't sit too long without beeing stiff, disrupted sleep, can't walk too far without feeling a lot worse the next day. After xrays and ultrasounds bursitis and arthritis were ruled out, anti inflamatories such as Neurefen and Voltaren gels don't work, nor do over the counter pain killers.
How do others manage the pain?
Will further blood donations or dietry changes bring releif?
Is there any evidence once the iron is removed from the blood that it is leached from organs/joings to replace the iron in blood stream causing the pain symptoms?
I would be nice to feel normal again instead of an old lady.

Tue, February 22, 2011 @ 8:35 PM

165. Jennifer wrote:
I was wondering if anyone else has HH and the MTHFR and a child with ASD?

Wed, February 23, 2011 @ 6:06 PM

166. dave bigelow wrote:
lori woods (135) I agree, Lori, porphyria by itself is a kind double-whammy to your organs. You not only store extra iron in the liver and other organs, but also porphyrins, which do their own damage to (especially) the liver. I have porphyria cutanea tarda hereditaria and HH. My (EX) doctor just seemed to lose interest after 2 visits. On the first visit he said I have cirossis and need a liver biopsy right away and a month later he said my liver is fine and I don't need a biopsy-------come back in a year. I don't know which diagnosis to believe. PCT is one of the easier porphyrias to treat, but throw in a little HH and it could be serious.
I'm sorry to hear about your husband and the horrible treatment he received. You put yours and your husband's trust and your husband's life in your doctor's hands and they failed both of you miserably. You're supposed to be able to trust your doctor. Did your husband have HH as well as porphyria?

Wed, March 16, 2011 @ 2:04 PM

167. james wrote:
i have pct and hepatitis c. is there a place where i can get a periodic phlebotomy without having to go through the rigamorole of doctor visits?

Wed, March 16, 2011 @ 4:25 PM

168. Nicole wrote:
I have a question. I recently had test result run that indicate I have high iron, low UIBC, high % saturation. The ranges considered normal on this site, make my teat results seem much worse then the results I recieved. For example my % saturation was 69% but the results said the acceptable range was up to 60%. This site seems to suggest the the value for an adult female should actually be much lower. According to the ranges here, my ferrtin levels should have also failed. Why such a difference? Where could the clinic running my tests becoming up with their acceptable ranges? I'm going to see a new doctor anyway, but this seems very odd to me.

Fri, March 18, 2011 @ 10:42 AM

169. Kim wrote:
I have been having issues most of my adult life, it took about 13 years to find out m ferritin levels were 4700. and going up. I was diagnosed with iron overload March of 2008. I also have a blood disease Pyruvate Kinase Hemolytic Anemia, which causes too many red blood cells that destroy themselves before maturity, which misshaped red cells die this causes my body to over generate cells, produce more iron to breakdown my body can not. I also have a red cell count of 9 on a good day, which means i can not do blood draws for for the Iron Overload. My treatment consists of Desferal (Chelate iron) infusions every weekend for 48 hours. My Ferritin last checked was 800, Iron sat 97% (this scares me.) I was diagnosed with depression in 2000, gallbladder disease 2005, enlarged liver, High liver enzymes. In 1999 I was blacking out ttrouble breathing he doctor told me I had a virus. I also had my left index finger amputated due to melanoma 2008. Iron overload makes you prone to all types of cancers, I still wonder if I am getting the best treatment and answers for my health. Any advice would be appreciated. All the stories have been very helpful and informative. I am glad there is a blog, finally people that understand the mental, physical, and emotional issues that relate and connect on so many levels.

How high are your Ferritin levels when diagnosed? What side effects did you have with high iron levels? Did you have other issues such as blood disorder or disease? What treatment have you received since your diagnosis? Any tips on holistic medicines? Any one tried them?

Sat, March 19, 2011 @ 9:49 PM

170. Zena wrote:
I, too, have HH and a few conditions including 2 kinds of CA related to HH but I find the history facinating. Recently, in the news I found this information.

Search "Survival of the Sickest" by Moalem for more. Way back in history when lifespans were shorter, it was advantageous to have HH.

"Hemochromatosis is believed to have originated with the Vikings and was spread when the Vikings invaded Western Europe. People of European descent are twice as likely as the rest of the population to have hemochromatosis, according to previous studies. That’s because people with the condition were more likely to survive epidemics of the bubonic plague that killed millions of people in medieval Europe and pass the hereditary condition to their descendants, according to Moalem.

One theory why this mutation was advantageous, prior to the bubonic plague, was that the condition helped women have more children because their iron supplies were not so terribly depleted during menstruation. Another hypothesis involves the Vikings as a warrior culture, when you fight a lot of battles, you shed a lot of blood."

Sláinte (to your health) !

Fri, March 25, 2011 @ 3:33 PM

171. Ann wrote:
I have been diagnosed with hemochromatosis but the doctors were unable to find a genetic marker for this disease for my case. I have all the classic symptoms of joint pain, stomach ache, and chronic fatique. When I was first diagnosed with the disease, I had a ferritin level of 5000. My levels dropped rapidly and remain around 124 because I don't go in for the phlebotomy as frequent as I should due to being anemic. Is this typical to have hemochromatosis and to be anemic? I'm confused

Thu, April 14, 2011 @ 9:27 AM

172. Ann wrote:
I have been diagnosed with hemochromatosis but the doctors were unable to find a genetic marker for this disease for my case. I have all the classic symptoms of joint pain, stomach ache, and chronic fatique. When I was first diagnosed with the disease, I had a ferritin level of 5000. My levels dropped rapidly and remain around 124 because I don't go in for the phlebotomy as frequent as I should due to being anemic. Is this typical to have hemochromatosis and to be anemic? I'm confused

Thu, April 14, 2011 @ 9:28 AM

173. Joe wrote:
Ann, you should have another blood test for the genetic mutation( C282Y or H63D)
It makes sense that you are now anemic if too much blood was drawn. Your iron levels need to come up to normal levels.

Fri, April 15, 2011 @ 11:22 AM

174. Jacquie wrote:
I was diagnosed with HH 15 years ago. My ferritin levels have never been as high as most of the levels mentioned here by most of you. I went through the thrice weekly phlebotomies until my levels were in the normal range. I have not been to a doctor in 4 years for many reasons, however, I have been able to donate blood at common donation intervals but when my hematocrit levels appear a bit high, I find a second, non realted blood bank and donate again without waiting for the normal interval. This system has worked for me until recently. I went to donate blood but was rejected because my iron was too low!!!!!!! I tried again a few weeks later and again it was too low!!! I have been able to have blood work done and now it appears that my Iron is 20, Trans%Sat 8, Ferritin 7 and TIBC 257. My TSH is 2.79 I am a 56 year old, post menopausal woman.
What has happend. Should this be alarming?

Mon, April 18, 2011 @ 4:16 PM

175. Jacquie wrote:
I figured out what caused my drop in my levels.

Tue, April 19, 2011 @ 8:51 AM

176. Jacquie wrote:
For Kim I have just had my iron levels drop. see above. I did it on my own and have had tremendous results. I have been chatting with an iron overload expert who says that I am de-ironed. Well, I am not too confident about that, but I think I know how to get it down and keep it down. And I lost 40 pounds in the process. I am happy to share my info if you like.

Tue, April 19, 2011 @ 9:26 AM

177. Kevin Ehrichs wrote:
I was just diagnosed with Iron deficiency anemia. I had to be admitted to the hospital because my blood counts were so low, I was at risk of dying, or becoming comatose, and not even knowing it. Turns out, that over the years, my blood count has been slowly declining, and i have not even noticed it. when i was admitted to the hospital, i had a Hemoglobin of 2.5. The normal amount is from 13 to 17. The reason i found out about this in the first place, is because i could hear my heartbeat in my head, and it would never go away. A month later, i have found out, that my body will not absorb iron through my diet. I have been getting my iron through an IV every week. I am located in Tucson Arizona, And my doctor is at the University medical Center. My Doctor is head pediatric oncologist, Doctor Gupda. My pediatrician is Doctor Eve Shapiro. I am a male, and 16 years old. No one knows what this Problem that i have is. Everyone tells me that i am the only one with this problem. While i find this hard to believe, there has to be someone that knows something about my problem. If ANYONE has any information to offer, please Email me. Kehrichs@hotmail.com

Thanks, Kevin Ehrichs

Thu, April 28, 2011 @ 6:55 PM

178. Kevin Ehrichs wrote:
I was just diagnosed with Iron deficiency anemia. I had to be admitted to the hospital because my blood counts were so low, I was at risk of dying, or becoming comatose, and not even knowing it. Turns out, that over the years, my blood count has been slowly declining, and i have not even noticed it. when i was admitted to the hospital, i had a Hemoglobin of 2.5. The normal amount is from 13 to 17. The reason i found out about this in the first place, is because i could hear my heartbeat in my head, and it would never go away. A month later, i have found out, that my body will not absorb iron through my diet. I have been getting my iron through an IV every week. I am located in Tucson Arizona, And my doctor is at the University medical Center. My Doctor is head pediatric oncologist, Doctor Gupda. My pediatrician is Doctor Eve Shapiro. I am a male, and 16 years old. No one knows what this Problem that i have is. Everyone tells me that i am the only one with this problem. While i find this hard to believe, there has to be someone that knows something about my problem. If ANYONE has any information to offer, please Email me. Kehrichs@hotmail.com

Thanks, Kevin Ehrichs

Thu, April 28, 2011 @ 6:57 PM

179. jeannie wrote:
I was diagnosed with hereditary hemochromatosis in July 2010. Since then I've gone through phlebotomies, at first inconsistently (loss of insurance) but in the last two months with regularity, every two weeks. I only get 1/2 pint removed, as I have extremely low blood pressure and a tendency to faint.

What led to my diagnosis was actually a six week or more bout of abdominal issues that culminated in an emergency room visit with atrial fibrillation. A CT scan caught a glimpse of my darkened liver. My initial ferritin level was around 500, with my iron sat level at 100%.

My GI doc, who "caught" all of this, and diagnosed the HH, was also testing for Celiacs. The blood test came back neg, and we decided not to do a biopsy as I had been through a slew of procedures prior to that. We decided, however, that I was definitely gluten "intolerant" and I've adopted the gluten free diet since then.

Question that I have today is: have any of you who have HH also had "celiac-like" symptoms, that is; the inability to digest wheat? (I've also discovered that I can't digest dairy as well....)
Also, my GI doc mentioned that this might "go away" once the hemochromatosis was "under control" which I am guessing to mean once my iron levels are back to norm. Is this true? (I'm skeptical)

Question #2: I never went to a hematologist, and am wondering if I should....I'm still having heart issues (even though I've seen a cardiologist and am taking meds for that) get an elevated heart rate and out of breath after the slightest bit of activity, and haven't been able to work since November....just exhausted. My GP says it's due to the low BP.

thanks for any help you can offer!
:)

Mon, May 2, 2011 @ 6:38 PM

180. Lori Woods wrote:
Hello, its been a while since I've been back to this site, I cry and get so pissed off I've got to walk away at times. Thank you all for listening to my story. To answer #166 Dave Im not sure if my husband had HH, but he did have iron overload due to genetic Porphyria. I did get the results of his Alpha-1 test a week after he passed away and he was also missing some of that gene as well but they asked for a vile of blood to do more test.
Last week I did get a letter from the Texas Medical Board in regards to the Doctor who gave Mike a prescription for iron (with 3 refills) a week after he put him in the hospital with a dx of ESLD and the Board saw nothing wrong with that Doctor giving him such a prescription. Come on now, they cant be serious? I am trying to do the right thing and go thru the proper chanels so this doctor doesnt give out iron as if its candy because IRON is what killed my husband and the Tx Medical Board didnt see anything wrong with it?????
I did breifly read some of the other posts before I started writting this one and someone asked about Mania, when Mike took the wrong medication he was not the same person, just goofy, and come to find out when you have Porphyria you are alergic to a wide variety of different medications. And if you can't find the healthcare you need in your local area I suggest you make your way to the Mayo Clinic. That is the place I was going to take Michael but unfortunatly God had other plans for him-. Thank you all for giving me a place to share my story. And good luck to all of you
Lori Woods

Wed, May 11, 2011 @ 10:12 AM

181. Regina wrote:
I am just learning about iron disorders. Some relatives told me that Hemochromatosis runs in my family. I have had issues with anemia and wondered if I have been anemic, does that mean I could not have hemochromatosis? My sister has many of the symtoms of hemochromatosis, but she also is anemic. Thanks.

Tue, May 17, 2011 @ 8:32 AM

182. Maureen wrote:
Wondering if there is anyone out there that can offer me some advice...I have been in and out of my doctor's office for the past couple of years with a general malaise (joint aches, fatigue, etc.). On my most recent visit, my doctor did the comprehensive iron panel and my transferrin saturation was 100%. She immediately did the genetic testing for hemochromatosis and I was found to be heterozygous for H63D mutation (in order for a hemochromotosis diagnosis you need to by homozygous). Anyway, I was sent for a hematology consult. They tested me again and it came back equally as high, so they phlebotomized me and told me to come back in a week. I did and the serum iron and transferrin saturation levels dropped so I was told that it was clear that I was not iron overloaded. I went back three weeks later to be retested and everything was back up again (the report states that "the Total Iron Binding capacity is unavailable. The Unsaturated IBC used in calculating the IBC, was below the analytic limits. This is consistent with the serum iron exceeding the tranferrin binding capacity."). My hematologist is at impasse and is looking to refer a doctor for me in Boston (I live in Maine). My ferritin and all other blood work was normal. Any thoughts? What could cause such a result?

Thu, May 19, 2011 @ 11:25 AM

183. Debbie wrote:
I was diagnosed with hemochromotosis about 12 years ago and went for phylebotomies weekly thereafter for about 3 years. they made me tired and irratible to say the least so I stopped going. This year 9 years later I decided to have my iron levels checked again they were high again, my Dr. recommended a hemotologist since my other one had since passed away. She asked me what mutation I had, I didn't know what she was talking about, so she asked me if I had ever had the genetic test done for hemochromotosis, dumbfounded I said no I didn't even know there was a test out there. so she did one, I do not have hemochromotosis. I still have high iron but she said a phlybotomy 3 times a year should do the trick. I'm so confused.

Thu, June 23, 2011 @ 2:44 PM

184. wrote:
DEBBIE # 183........DON'T BE CONFUSED.......TAKE TIME AND READ ALL THE POSTS ABOVE YOURS.......I'M SURE IT WILL ANSWER ALL YOUR QUESTIONS........BY THE WAY, WHAT WAS YOUR SF SCORE (SERUM FERRITIN TEST RESULT) ?........ANYTHING OVER 300 SHOULD PROMPT SOME ACTION ON YOUR PART.........GL, TOM G.

Fri, June 24, 2011 @ 5:39 PM

185. Donna wrote:
Hi I live in the San Joaquin Valley of Califronia. I am working on getting a support group started for the Central Valley. I was diagnosed a year ago with C282Y homozygote gene. I have had many phelbotomies, and alot of ups and downs. I was going for weekly phelbotomies, with much pain and fatigue. In working with my Oncologist- closely. I am going on my third month with no phelobotomy. I will most likely need to have a treatment next month. Hopefully at this point it seems that my levels have stablized. It took about a year with diet and phelbotomies to get me where I am. I did go through alot of joint pain and fatigue, accompanied at times with shortness of breath. All of that has subsided 95%, since my levels came down. I have been in contact with Cheryl Garrison from the Iron institute. Her books has been a great deal of help. The Guide to Hemochromatosis. As well as the cook book my Doctor recommded. Anyone interested in the support group you may contact me via e-mail. ddasilvarn@yahoo.com

Sun, June 26, 2011 @ 7:26 PM

186. Diane Shepherd wrote:
Wondering if anyone can advise me...Which is better to see, a GI specialist or a Hematologist when dealing with high iron issues? Thanks so much

Sat, July 9, 2011 @ 9:00 PM

187. Donna wrote:
Hi Diane, I would suggest starting with a Hematologist , and he can further refer you if needed.....

Sun, July 10, 2011 @ 11:43 PM

188. Andrea Meyer wrote:
Hi,

I've had 2 blood tests taken confirming high transferrin saturation in both-the 1st was 82% and the 2nd was 70%, my ferritin level was 45(normal). The doc then performed the genetic test for hemochromotosis and confirmed that I am a carrier of the H63D gene heterozygous but saying I do not have hemochromotosis. I am confused as to why my transferrin saturation is so high? I do not take iron supplements, I am a 29 year old female- any advice would be great. The doc originally was convinced I had HH and referred me to a gastroenologist but not sure now if I should still attend.

Mon, July 11, 2011 @ 5:34 AM

189. Dimi Lupi wrote:
As I understand it my iron level decreased suddenly from 250 to 9 in a space of 2 months. Since then I have had Colonoscopy, Gastroscopy and I have had also my stool tested fom traces of blood. Though during the colonoscopy prcedure the specialist who looked inside my colon, had to remove a few non bleeding polyps no blood loss from there was detected. This happened about 2 years ago and since then I have been on feritin tablets and it seems my iron level in the blood has stayed at the low level between 9 to 17.
Otherwise I feel fine even though I am on high blood pressure tablets, Diabetes tablets, ferinin tablets.
Should I really worry too much about it? The specialist thinks I should have another colonoscopy and gastroscopy procedure done on me. I doubt it would be helpfull.
please give some answers. I do do feel fine, normal

Sat, July 23, 2011 @ 3:14 AM

190. Jeff Amber-Messick wrote:
The day i turned 30 is was having a liver biopsy. My general doctor have discovered that i had hemochromatosis. My liver was 100 % saturated. For the next year I had a pint drawn each week. At the age 42 it was no longer necessary to draw blood. Im 44 now.
The last two years my ferritin has been 10-14. Aren't these levels some what low?
I have severe arthritis in both ankles. I hard surgery on each one to clean out the joint. My knees, shoulder, elbows and hands hurt / ache. I was told that in 30 years, the damage was done! I was surprised. Fourteen years ago the doctors didn't know as much as they do now.
Now they believe that iron can affect the brain function. They have linked it depression. I have been depressed all my life, functioning fine until two years ago. Im wondering if anyone can help me see is there is a connection to recent severe depression and my low levels.
Oh and Im starting to have issues with shaking, hands and arms.

Thu, August 18, 2011 @ 11:37 AM

191. Cheryl Mariscal wrote:
Was dx with HH in 1993, with the C282Y gene. Was 43 when the doctors finally figured out what was going on. Unlike many of you on this site my ferritin was only 799, saturation 85%, they did a liver biopsy came back +4 for iron and stage 2 cirrhosis. It took about four years to get my levels down. Because of very bad veins, and central ports not working, I have a fistula we use to draw the monthly blood. I get 500 cc of saline before they remove 250 cc of blood. Because of damage to the heart we do 250... Anything more I don't do very well.

Does anyone else have the horrible pain in hands & feet? It's intermittent, but when strikes grocery shopping is almost impossible, much less daily walks..

It's unbelievable how much they don't know about HH. I even had one GP tell me women don't get HH. I felt like I was living in the dark ages.. Hello I think I know my own dx...I now have a great hematologist here in Fresno....

Sat, August 20, 2011 @ 10:52 AM

192. Jenny T. wrote:
Hello, I'm new to this forum and have tried to make a post unsuccessfully. None the less, I am giving it another try.

I was diagnosed with homozygous hemochromatosis C282Y last September 2010. I too have the painful hands, wrists, shoulders and upper spine. Sometimes I feel like I'm 100 years old! I have very itchy skin sometimes mostly on my hands, arms, legs and feet. I wil scratch until the skin is broken. Is this normal presentation for HH? This itching is intermittent. Just wondering if anyone else has this and any information would be appreciated.

Jen

Sun, August 28, 2011 @ 1:52 AM

193. Cheryl wrote:
Hi Jen,

My skin is very dry & sometimes itchy due to my thyroid being removed...I have noticed several people with HH also have thyroid problems. Has your doctor checked you thyroid levels? I know another test, but with a thyroid out of whack you could have either a hyper or hypo thyroid condition, which would cause all sorts of problems..good luck. Hope this helps.

Cheryl M.

Fri, September 2, 2011 @ 8:43 AM

194. Karen wrote:
Hi, anyone know if it's possible to have ferritn within normal limits and still have HH? I have suffered with chronic fatigue for 7 years with no conclusive reason as to why? My sister has just been told her iron levels are high and she is having blood tests done to see if she has HH.

Thu, September 29, 2011 @ 11:58 AM

195. Nancy wrote:
I have been anemic for years. My doctor ran tests and my ferritin level was 8. After 2 months of one Slow Fe a day I now have a 300 (too high) I think the upper range of normal for my age is 120. I am 41 and I still menstruate regularly and heavily. Normally after 3 months of an iron supplement I am still anemic. I do not know why this would raise my iron stores so quickly. My doctor says I should now take the supplement every other day. I have been urinating constantly. I am not sure if this is related. Has anyone else experienced this??

Sat, October 8, 2011 @ 2:34 PM

196. faith wrote:
my doc told me this morn my granddaughter who is one has two high white and red cells and high platelets and i'm not sure what that means if she has iron overload he shouldn't wait a month to try and do something right

Thu, October 20, 2011 @ 5:23 PM

197. Joy wrote:
I have been chronically anemic my entire life. I cannot take oral iron due to serious side effects. Iron infusions also cause problems. Last year it was discovered that I have two gene mutations in the gene MTHFR. Not sure at this time if it is the cause, but sounds very likely. I take the supplement Deplin (L-methylfolate) to correct the mutation, but am still anemic. Not eligible for studies...very frustrating having no correction method or help!

Fri, October 21, 2011 @ 5:05 PM

198. DMV wrote:
I have low CTIBC and transferrin levels and they keep dropping even though I am on a high does of iron. My ferritin and iron levels have increased. Does anyone know what could be the problem?

Tue, October 25, 2011 @ 3:03 PM

199. chrisy wrote:
I have always been a very active person always on the go but ....have been felling very exausted and no energy for about a year now.....went to doctor had blood test...my hemo was 15 ferritin 5 had one iron infusion 2 weeks ago but still feel the same and lost weigh also .....have always eaten a good diet lots of meat liver veg...so what causes my ferritin to be so low? not sure if it is to do with this but my tummy is always bloated with gas , I am very slim but the gas makes me look 9 months pregnant.....!?

Fri, November 18, 2011 @ 8:25 AM

200. Bernard wrote:
I'm an HH'er. Diagnosed nearly 2 years back at 2150, last count 125 (October 2011). I don't know if anyone else in my family has/had it, but my mother died aged 53, cancer and my father 66 kidney disease (I've made it to 71 and don't take any meds on a regular basis). I have relatively mild osteo arthrithis in hands and wrists.Could be I have mood swings, maybe I'm just crochety (is that how it's spelt?)
The one thing that seems to be missing in most of the posts on this forum is DIET! If your ferritin wont go down, lay off the roast beef and burgers, clams, many cereals and breads, some cereals have 100% of daily value in one serving! Like liver pate? cut it out! C'mon HH'ers, check your diet, look at the ingredients on the packet and don't take vitamin C with your meals, leave an interval between your orange juice and roast chicken.

Tue, November 29, 2011 @ 5:21 PM

201. Bernard wrote:
Is Arizona out on it's own with free blood draw at United Blood Services? I see all you folks who cannot get phlebotomy because 'insurance is out of date' or whatever, yet in Az. I just get a prescription from the Doctor for, say, one draw every two weeks for 3 months, then get it renewed. Sometimes I get a ferritin test first before a new prescription, just to be sure I still need it.

Tue, November 29, 2011 @ 6:45 PM

202. Kelly wrote:
Hi, Im not sure really where to start I spose with my levels... my Iron total is 414, Iron Binding Capacity 55 Ferritin 7.2 hemoglobin 9.8 I have had a colonostmy which was normal and endoscpy also normal, and ct scan of my bowels and stomach other than a fatty liver normal. I use to be over weight I had gastric bypasss in 2003 and had several complications. The docs have now sent me back to my bypass doc who is doing surgery monday 12/5 to see if she can find anything wrong. I am waiting on a referral to a hematologist as my docs are confused why my total is high and binding is so low?? I am very frustrated and tierd of feeling the way that I do. I have fibromyalgia, severe OA in all joints, disc issues both neck and back and the list goes on..... I have troble with my tummy bloating so bad I look 9 months preg...and vomit at least 1 time daily... anyone have a clue why my levels are strange?? sorry about my spelling, and thank you in advance for ny input you my have.

Sat, December 3, 2011 @ 1:25 AM

203. barrie wrote:
Chrisy. @ 199

get tested for celiac and do some research on it. they estimate 1 in 250 americans suffers with this malabsorption problem. check it out. hope it helps someone.

http://www.endonurse.com/articles/2006/04/malabsorption-syndrome.aspx

Sun, December 4, 2011 @ 2:43 PM

204. Kim Whiting wrote:
I would see a hematologist first! ASAP -Iron levels are on the high side, but i would consult with a gastroenterologist and a hematologist maybe have review your case, have tests and labs then consult see the best path to walk for your health. I still don't understand the surgery before consults with specialty doctors. Unless they want to cover a mistake maybe?
Please keep me posted on your progress.

Sun, December 4, 2011 @ 10:58 PM

205. M Dwyer wrote:
Brother is diagnosed with hemichromatosis and possible my sister has same. I went to family Doctor and he says because my blood count is low I couldn't possibly have it. I could not convince him I needed test and hopefully I can find a Doctor who will listen.

Tue, December 6, 2011 @ 9:40 PM

206. Kelly wrote:
Hi Kim wanted to update you, and thanks for your input :) I had the surgery and she said that their was a "flap" lying over the opening of my intestions and was making it difficult for food to pass thru. If this doesnt help she said they will need to do a more invasive surgery where they repair the Y of the intestions because over time after the bypass they can colapse, its been 8 yrs. I agree with you are the tryn to cover something up? I had several complications after surgery similar to my current ones IDK!! I have seen the gastro doc he did colonostmey, upper endoscopy, upper gi and ct scan, found nothing. I have an appt with hemotologist this tuesday the 12th kinda looking forward to seeing what he has to say.

Sun, December 11, 2011 @ 1:38 AM

207. roque dutra wrote:
ola estou com minha ferrintina alta ou seja exesso de ferro no sangue o valor esta 687,esse indiçe elevado de ferro pode me trazer problemas de saude futuramente,tenho neiropatia,doença degeneratia da coluna em todo o seu sigmento fiz uma artrodes cervical.

Mon, December 12, 2011 @ 5:35 AM

208. ruby wrote:
Hello people...


yep, me too. Hemachromatosis
Please indulge and forgive me for my new born ignorance, I know nothing, I have been reading all your figures, I am brave, frightened and confused.
Could some-one tell me what all those numbers mean....in the mean time I will submit what I can find to you.

I am old now, I have grandkids and I love them so much, just like my own 4 kids I am 58 have a B.A. , grad dip. from uni, and never in my life have I felt to humble, so powerless, I am proud of m y achievements. and so helpless. You know I have been a child protection social worker for over 30 yrs....teaching kids in schools how to keep them selves safe...and now I can't even do it for myself....is there there some- one out there who can teach me, show me how, maybe even talk to me about how I can survive this thing ?
You all seem so educated about numbers, can you please educate me too.
Please !4398c

Mon, December 19, 2011 @ 3:12 AM

209. Tiarna wrote:
I'm a 22 year old female and have Hyperferritinaemia cateract syndrome.
When I last checked, my ferritin level was about 900 (lowered from about 1200)
I recently donated blood for the red cross, will they be able to donate it?

Fri, January 6, 2012 @ 4:13 AM

210. maureen williams wrote:
hello. i have an appointment to see my GP as a recent blood test showed high iron levels in my blood. Can taking a high potency vitamin B supplement have caused serum iron levels to be high? Could food have affected this result in any way ?

Thu, January 26, 2012 @ 4:34 PM

211. maureen williams wrote:
hello. i have an appointment to see my GP as a recent blood test showed high iron levels in my blood. Can taking a high potency vitamin B supplement have caused serum iron levels to be high? Could food have affected this result in any way ?

Thu, January 26, 2012 @ 4:39 PM

212. Kyle Langelaar wrote:
Hello everyone, I just recently came back from my doctor and he said I had borderline high levels of iron deposits in my blood, he said it wasn't serious (since it was borderline) but I'm kinda unsure what I need to do, any suggestions? He did tell me to not eat any supliments (which i don't) and to not eat iron rich foods, anything else I should do?
Thanks :)

Fri, January 27, 2012 @ 3:04 PM

213. Pansy wrote:
I think must of you need a dictionary or spell check. Sorry, I have H. H. and doctor's
do not care.

Sun, January 29, 2012 @ 9:00 PM

214. John wrote:
who can help me out this problem

Thu, February 2, 2012 @ 9:17 AM

215. John wrote:
dr james can help you with africa herbs dr.james-miller @ dr.com, it worked for me.

Thu, February 2, 2012 @ 9:20 AM

216. John wrote:
Hi John and all you views having same problem, I was recommend to Dr. James Miller by a close Africa friend of my and Dr.James is a specializes in the above mention problems by the help of strong Africa herb that come along with dosage direction on how to use, it was the best solution for my sick mother, who is now sound and strong.
Make sure you solve this problem now before if get worst, Doctor James can help you by the help of Africa herbs it work faster then white medications trust me.

Thu, February 2, 2012 @ 9:22 AM

217. John wrote:
Hi John and all you views having same problem, I was recommend to Dr. James Miller by a close Africa friend of my and Dr.James is a specializes in the above mention problems by the help of strong Africa herb that come along with dosage direction on how to use, it was the best solution for my sick mother, who is now sound and strong.
Make sure you solve this problem now before if get worst, Doctor James can help you by the help of Africa herbs it work faster then white medications trust me.

Thu, February 2, 2012 @ 9:23 AM

218. Hi John wrote:
Contact Doctor Jame Miller @...dr.james-miller@dr.com

Tell him Mary from New York.

Thu, February 2, 2012 @ 9:28 AM

219. Jack wrote:
I am Jack from Canada, Thanks a lot Mary I was able to contact Dr.James on the above email contact that you indicated above and he has responded I am very grateful to you help I would be receiving my order from him soon, he has told me the Africa herbs that I need and he also assured me that it woks that in two weeks of using it I would find result, I hope it works for me as well.

Mon, February 6, 2012 @ 9:49 AM

220. Chris wrote:
Hi,

I am a 33 year old male from the U.K. I have recently had 3 rounds of blood tests - the first indicated a high iron level, the second indicated a low iron level and the last one indicated a high iron level again. I have not been able to identify any changes in my diet or lifestyle that would cause the fluctuations (note, they are not minor fluctuations). My doctor does not think that it could be hemochromatosis, as I do not have any family history of the disorder, I am not of Northern European descent, and of course there is the blood test showing low iron levels. I do not suffer from any major symptoms, other then slight hair thinning, which can be attributed to age.

I have tried researching the web for some information, but have not been able to find any information on such a condition. I have a haematologist appointment in a week, but until then, I would appreciate any feedback anyone can provide.

Thanks.

Sun, February 12, 2012 @ 2:17 PM

221. Christina wrote:
have found great solice reading everyones blogs here. It has really helped me tonight.I have had hepc for many years and recently started experiencing many of the symptoms outlined in the blogs from iron overload. My ferritin is below 500 , saturation 85%. I have always done everything using nutraceutical products and have spent the last few days researching what to do naturally to help with this. I am going to drastically change what I eat and go raw for a month as well as add some live nutrition using products that have research behind them . I am going to have my labs done again on March 6th and I will let you know if I see change in just a week of doing this. I started the raw diet yesterday. I have read reports of numerous people that have helped their bodies heal themselves from all kinds of problems.
I noticed that many writing in the Blog complained of stiff veins and I do know what can help. If you have interest in following my results or have questions feel free to email me. I never realized this disease existed and I am grateful to find informative information. The Blog has been most helpful and I thank you all for posting. verythankful@gmail.co

Fri, March 2, 2012 @ 5:50 AM

222. Paul wrote:
I have the single mutations C282Y so I guess this means I am unlikely to have Haemochromotosis, my symptoms are fatigue and lethargy, afternoons I often fall asleep. I have a ‘high’ iron level (not sure which or how high) which is why I was referred to Hepatology so it must be a concern.

Hepatology gave me the gene test above. I have had a fibro scan on my liver, scan stiffness 8.2? and interquartile range KPA 2.9? Not sure what that exactly means?

I have had had an ultra sound which has shown cysts on my liver (I believe about 1cm) is this bad?

No biopsy.

I am 50, over weight - BMI about 30ish I have lost a stone in the last three months, but seem to be finding it harder now to lose anything.

The hospital I think will say I have a fatty liver, to shift weight and they will monitor.

Any advice or questions I should ask would be great, do I need a biopsy? Should something be done about my iron? What do the readings mean?

I am a male born in England with an Irish Grandmother who died at 72 of heart failure.

Thanks for any help, feeling very ‘low’ at the moment!

Paul

Thu, April 12, 2012 @ 9:45 AM

223. Paul wrote:
Re above: Just got my ferritin levels = 527 and Saturation 57.8%
Thanks for any help/views/questions I should ask,
Paul

Fri, April 13, 2012 @ 5:40 AM

224. Adele wrote:
My husband was diagnosed with hemachromatosis about 2 years ago. While he is stable right now (he went for weekly phebotomies for about a year and now just goes every 6 weeks or so) He gets really cold at night and can't seem to warm up, even when he's got extra blankets including a feather duvet. Has anybody else had a

Sat, April 28, 2012 @ 10:00 PM

225. yeah wrote:
I have a question that doctors still can't answer. I drain energy from my partner and the pain from my body drains into his body, and it is a painful process. But my pain is gone after a little while as long as we don't stop touching each other. This happens within about 20 minutes of us touching. Even my children notice it when we are in a small space where our knees have to touch for awhile. They describe it as it feeling like a needle is poking them. Is iron the culpret?

Mon, May 14, 2012 @ 8:45 PM

226. randy wrote:
does anyone know of a place to donate blood in Tn. that doesn't require a script from your dr? i have recently moved into the area and my hematologist is out of state. i have kept track of my ferritin,sat, tibc etc. and know what my frequency at this point should be after doing it for 15 yrs which is every 4 months. even someone that will charge for the service would be fine. i can't understand why H.H. hemo paitents shouldn't be traeated like any other donor. FDA says you only need a script if donating sooner than an 8 wk interval otherwise blood banks can accept your blood as long as they mark it as coming from a person with hemochromatosis

Thu, May 17, 2012 @ 11:15 AM

227. Catrina wrote:
Hi, I feel silly asking for advice when my number are low, but I have a family history of hh. I had the genetic testing done and was found to be hetrozygos for the Hfe c282y, so believed that I would have no iron issues. In the past 4 years, my serum iron has risen from 58 to 208 and my saturation level has risen from 36 to 58%. I do not have elevated ferritin level, but they did rise from 54 to 78. My doctor just said to avoid supplements and stay off red meat. I am a 42 year old premenopausal woman. They did not run any liver function tests, should I ask for them? Also my Dad died at 54 of what we now believe to be hemachromatosis related embolism and liver cirrhosis. Based upon those of us tested, he would have been hetrozygos C282y also. He also had in one of his direct cousins family, 4/6 brothers diagnosed itch hemachromatosis 2 died before diagnosis.

Am I being overly concerned?

Thu, June 7, 2012 @ 6:16 PM

228. Suzanne wrote:
My daughter is 17 and an athlete. She had Mono in February of this year and had recovered well. She had recently started conditioning to run a marathon with Team in Training. She had been running almost daily and doing the insanity work outs. With in a 3 day period she couldn't run without feeling dizzy and having trouble breathing. He tests have revealed she is now iron deficient. Her iron was 13.7 in march, was 8.8 last week and is now 7.9. Her dietary iron is high. We are to see a hematologist next week could any one help me with what intelligent questions I need to ask. Has anyone had a situation similar to this and can tell me what there experiences have been. Thank you for any help

Sat, June 16, 2012 @ 5:39 PM

229. Christine wrote:
I had phlebotomies every two weeks when I was first diagnosed, and now that my ferritin is down to 50 I am on maintenance to keep it there. The amazing thing I noticed is that my cholesterol dropped from being high to being "optimal" in both numbers and ratios. Could this be a result of the phlebotomies? I am 51 years old and have not changed my diet too much (was never a big red meat eater).

Thu, June 21, 2012 @ 2:31 PM

230. Michelle wrote:
August 2011 I was diagnosed with HH. I was 46, not overweight and the only major issue I ever had was grave's disease diagnosed at age 25, take thyroid replacement and have been fine. Approximately some time in 2005 I noticed I would start dropping things and started having terrible joint pain, mostly in my first and second finger could not make a fist. So, I go to a Rheumatologist and he thinks it could be carpel tunnel or rheumatoid arthristis, because of all the computer work I do I figured it was also probably carpel tunnel. After many x-rays he tells me I have degenerative disk disease mostly in my neck, along with hyper-reflexia. He refers me to a Neurologist. The Neurologist does many test including a EMG and concludes I have radial neuropathy in my left arm along with degenerative disk disease as well as mild cervical stenosis. Being very active as a child and a adult (did a lot of running) this really came as no surprise to me. So.....now starts all the anti-inflammatory drugs. During this time I also notice that I'm extremely tired but being in the car business I worked 55 to 60 hours a week. But this kind of fatigue was not normal and not what I was used to. So I go see my primary care physician, of course he says I'm just over worked and maybe if it gets worse I could participate in some kind of sleep program (who has time for that?). So back to work I go and my joint pain gets worse so does my fatigue and I find myself crying alot for no particular reason. I go back to my primary care physician begging for him to find out what was wrong with me. He does blood work, just like the Rheumatologist and Neurologist. Everything looks normal except my liver enzymes' are slightly elevated. No big deal to my doctor's, must just be because of the NSAIDS I was taking. He suggests I try anti-depressants, I tell him no. Now within the next 5 years there are many trips to my primary care physician, rheumatologist, neurologist, a orthopedic doctor and many cortisone shots. April 2011 one evening after work all of a sudden I get a high fever 102 and pain on my right side, I go to the emergency room. As they are doing the ultrasound the girl asks "do you have liver problems" and of course not really knowing much about the liver I say no. They admit me for 3 days and do 2 ct scans and tell me I have possible cirrhosis and need to follow up with a gastroenterologist. I see him twice and he is still baffled by what is going on because the only problem is the slightly elevated liver tests. Finally in July 2011 he say's I'm going to try one other test, a blood test for hemochromatosis and wilsons disease. I get a call right away, my ferritin is 3037, saturation is 98%. DNA test comes back positive. Now on to the liver biopsy. Hepatic iron index is 10.4, HIC is 26906 dry weight and of course 4+ iron. Moderate fibrosis.
I start twice weekly phlebotomies, not sure how many I've had so far because some of the time my HH is too low I have to wait another week. For me the phlebotomies are rough, I'm kind of small and they take 500cc every time. My ferritin is down to 440 and saturation is 85% which is great but unfortunately 3 months ago I developed diabetes.

Heres what I want everyone to know...YOU know your body better than anyone else. If you feel something is wrong research research research and demand demand more tests...
One statement almost every physician made was "but you look fine". If only one of those physicians would have ran an iron panel maybe just maybe this wouldn't have progressed so far. And just because I'm a female and 46 doesn't make me exempt from this disease.

Good luck to all.....

Thu, June 28, 2012 @ 9:26 PM

231. Renee wrote:
Hi, I have a concern over some lab results I just received and am lost on what to do. My physician does not have any answers for me and not sure what is going on. I have not been feeling well for some time, body aches & pains, knee osteoarthritis, hair loss, no libido, irritable, brain fog, itchy skin.......the list goes on. Anyway, I don't think I should feel this way at 54 years of age. I am scared in the fact that I feel this way now, what is 60 or 70 gonna feel like? Anyway, here are my labs: Total Iron 91 mcg/dL; TIBC 236 mcg/dL: % Transferrin Saturation 39%; Ferritin 670 ng/mL. So I am storing iron, yet my iron level is normal, but my TIBC is lower. I was told I do not fit the criteria of Hemochromatosis. So what is going on? My CBC was normal, my Chemistry Panel normal, Cholesterol normal, Liver Panel normal except for Bilirubin was at 1.3 mg/dL (slight elevation), Kidney function normal, Vitamin D level low @ 27, Creatine Kinase slightly evelated at 184 U/L, all the following normal: Sed rate, uric acid, folates, CRP. I do have Hashimoto's Thyroiditis but all lab values normal. I am being referred to a Rheumatologist (again) and a Hematologist, in the mean time, any suggestions, any thoughts?

Thank you!

Mon, August 6, 2012 @ 7:33 PM

232. Renee wrote:
P.S. I failed to mention that I had a hysterectomy at the age of 29. That is when I found out I was hypothyroid. Could the early hysterectomy cause the stored iron over the years since I no longer experienced menstrual cycles?

Mon, August 6, 2012 @ 7:42 PM

233. Suzie wrote:
Celiac disease and anaemia

I've only just found this site - what fantastic information. I've suffered with iron deficiency anaemia all my adult life, my ferritin was around 3 and 4. I have taken 600+ mg iron supplements for over 10 years and have just had my first iron infusion. I have microcytic, hypochromic blood cells. I was told it was due to heavy menstrual cycles, it wasn't.

A few years ago I was diagnosed with celiac disease - which is the cause of my ongoing anaemia. I can't absorb iron in food. Celiac should be considered when presenting with anaemia and tiredness. Anyone with bloating (or GERD or gall bladder problems) please get a blood test for celiac disease. It would have saved me all this if done at an earlier stage.

In the hospital I was with HH patients - we can learn so much from each other regarding diet - I need more red meat with tomatoes and vit c (and no tea/coffee) in one meal - quite the opposite of HH.

PS Have HH ever tried a vegetarian or even vegan diet?

Sun, August 12, 2012 @ 1:50 AM

234. Scott wrote:
After going to the doctor for another reason - they did some blood tests and one was for iron levels and the result came back that I had low iron levels and looks like anemia
heres the catch - I dont show any signs no pale skin and no tiredness. I had a fecal test down a while ago and nothing came back. Now the doctor wants me to go through with a colonoscopy to see if anything is happening inside.

The last blood test was close to 10 months ago and I have been feeling fine for years

could there be another reason why my iron levels were low

Sun, August 19, 2012 @ 8:53 PM

235. HiAll wrote:
Everybody, Get your ------------Vitamin D----------------- test done.

Doctors usually don't do the vitamin D test. But most of the symptoms to you All may be vitamin D deficiency. (fatigue, pain in bones and muscles, feeling cold, depression,anxiety and many more) . Some may have have all or some of it or some (including others). Looks like I have been having Vitamin D deficiency for the long time my doctor keeps on doing other tests but had had nothing and I suffer a lot and now I am <4 vitamin D.

Please, Ask your doc to do Vitamin D test. Help yourself.
Learn more about Vitamin D deficiency on Internet.
Hope All will feel better soon!

Sat, October 6, 2012 @ 1:00 PM

236. Fred wrote:
My girlfriend who is 27 was diagnosed a few weeks ago. Her feritin was 511 and she now has to go once a week to draw blood. Once it's down the doctor said she will not have to go as often. It is hard to find a diet menu of what she can and can not eat. We really want to know if she has to stop eating certain things altogether Redmeat is out we know not to eat that. Some one please help me and my girlfriend understand the diet system. Does she have to stop eating certain things all together? If so, What?
Thank you for your listening and I hope someone out there can help us understand.

Wed, November 7, 2012 @ 3:03 PM

237. Kore wrote:
Wow. It's amazing how little doctors know and how much faith people put in their hands. And they have the nerve to be so arrogant when you're inquiring about your health, poor little things spent so much time in med school that it gives them the right to screw around with our health.

Mon, December 10, 2012 @ 2:09 PM

238. J.R. wrote:
Due to a medical problem, I have been having a plebotomy done in a laboratory and they can do the ferritan count there. Then I request that I be able to have my own blood to take home to dispose of it myself. They refuse to allow me to take it with me. Why?? I would like to do my own bloodletting so I can dispose of my blood. How can I do this myself.

Sat, December 29, 2012 @ 7:28 PM

239. Gladys Quintal wrote:
My daughter was anaemic from the age of 7 through puberty. She is now 20 and her latest blood tests are a bit confusing:

iron 20 (range 7-24)

transferrin 44 (range 20-40)

trans sat 29 (12-44)

ferritn 25 (20-180)

Her iron is high/normal, transferrin high, saturation normal and ferritin normal/low.....

Sun, February 3, 2013 @ 11:54 PM

240. Tony Mitchell wrote:
I have haemochromatosis diagnosed 2.5 years ago with ferritin at 3600. Unfortunately I wasn't diagnosed until my pituitary was failing which prompted my doctor to check my bloods. It showed my liver was in trouble with 30% function at the time and portal hypertension. I also had established osteoporosis. Luckily after 2 years of hard work on my food intake my portal hypertension has gone and my testosterone has risen from .02 to 6.6
Now I have been overbled into avidity, luckily after a trip into hospital from having some kind of fit my wife discovered iron avidity online and I changed doctors to one who understood this condition. My ferritin is 13 two months after my last phlebotomy, my haemoglobins had only just gone below 130, so I dont think I was that low.
My question is how long will it take for this horrible feeling to improve/recover?
I was also wondering do NSAID's change iron absorption ? I was on NSAID's for muscle and joint pain for 6 years prior to diagnosis.

Sun, February 17, 2013 @ 2:20 AM

241. Pam wrote:
Because everybody who has this condition, experiences symptoms differently, it is too hard to say. I do not believe Nsaids change iron absorbtion per se (non-professional opinion), however with a ferritin as high as it was, did you have a liver biopsy??? It is thought that ferritin levels over 1000 can indicate cirrhosis which means it is extremely sensitive to medications since they are filtered through the liver and I would definately want to make sure a gastroenterologist with a sub-speciality in hepatology is following me. A hepatologist would be the best to advise safe medications for your particular situation. Hope you feel better soon.

Mon, February 25, 2013 @ 4:59 PM

242. Karen wrote:
Can vitamin c (without taking oral iron supplements) release or help the absorption of stored iron in the body?

Wed, April 24, 2013 @ 9:33 AM

243. Rachel wrote:
I cant seem to improve my iron absorption and whenever i viist my GP they tell me everything I experience is to do wiht the menopause! I am 50 and not suffering especially from menopausal symptoms. A few months ago my ferritin was 8. After a couple of months it went up to 24 but i find the iron diffcult to tolerate and i have reduced from 3 pills dialy to just 1 or 2 and now feeling very tired and frequently dizzy.
I tested positive for rheumatoid arthritis (blood test) but it was a weak-positive and the GP said she didnt believe. I had another blood test and that was still in the RA category but much lower and almost borderline for RA. My GP says that inflamed joints are menopausal. X-ray on hand shows severe arthritis in thumb area but GP says that is just osteo arthritis exacerbated by menopause. I am also wheat intolerant (althouhg GP wont let me be tested to prove that). I know that if I avoid wheat i suffer no IBS symproms and my joints are not as inflamed. I cant bear the thought of going to GP again and being told that I am menopausal and need to get over myself. Is there a connection between this low ferritin, weakly positive RA result and the wheat intolerance? Feeling like this si a losing battle as I am obviously not absorbing iron and just exhausted and dizzy all the time. I have always had an iron deficinecy problem and years ago was tested for thallasaemia as my heritage is Spanish but this test was negative. Any advice?

Wed, May 29, 2013 @ 9:46 AM

244. Rachel wrote:
I can't seem to improve my iron absorption and whenever i viist my GP they tell me everything I experience is to do wiht the menopause! I am 50 and not suffering especially from menopausal symptoms. A few months ago my ferritin was 8. After a couple of months it went up to 24 but i find the iron diffcult to tolerate and i have reduced from 3 pills daily to just 1 or 2 and now feeling very tired and frequently dizzy.
I tested positive for rheumatoid arthritis (blood test) but it was a weak-positive and the GP said she didn't believe it. I had another blood test and that was still in the RA category but much lower and almost borderline for RA. My GP says that my inflamed joints are menopausal. X-ray on hand shows severe arthritis in thumb area but GP says that is just osteo arthritis exacerbated by menopause. I am also wheat intolerant (although GP won't let me be tested to prove that). I know that if I avoid wheat i suffer no IBS symproms and my joints are not as inflamed. I can't bear the thought of going to GP again and being told that I am menopausal and need to get over myself. Is there a connection between this low ferritin, weakly positive RA result and the wheat intolerance? Feeling like this is a losing battle as I am obviously not absorbing iron and just exhausted and dizzy all the time. I have always had an iron deficinecy problem and years ago was tested for thallasaemia as my heritage is Spanish but this test was negative. Any advice?

Wed, May 29, 2013 @ 9:51 AM

245. Ezra wrote:
Im a 25 year old man, i recently took blood tests at my gp who told me i mite have haeomchromatosis, i just took another blood test and am waiting on genetic tests or something along those lines. i have stopped taking multivitamines with iron in them although from what i'v read your diet plays only a small role. I am a bodybuilder and take creatine and it has occurred to me that creatine comes from red meat. seeing as red meat is high in iron i am wondering if taking creatine might have an effect on blood test results etc or have a direct influence on something like haemochromatosis. I have tried to look for info on the issue but no such luck as of yet. Could anybody shed any light on the issue for me?

Sun, June 2, 2013 @ 12:12 PM

246. John wrote:
Hi Rachel,

I actually had the opposite problem (high iron), so let me tell you some things I know that can increase iron asorbtion.

First, take vitamin C with meals. That will bump up the amount of iron absorbed. Sugar also can increase absorbtion, and although I wouldn't recommend adding sugar to your diet, maybe increase fruit intake.

Heme iron is better absorbed than non-heme. So up your Red Meat intake. Maybe try dessicated liver tablets instead of iron tablets.

Alcohol is another thing that increases iron absorbtion. So, do with that information what you will.

Things that inhibit iron absorbtion are tannins and phytate. So stay away from soy, grains, and tea. Coffee can also reduce iron absorbtion. Calcium is also known to inhibit iron absorbtion (from both heme and non-heme, others just inhibit non-heme), so avoid calcium supplements if possible, and drink milk away from other meals.

There could be a connection between the wheat and the RA. I've heard annecdotal reports of wheat causing joint pain. Wheat can be super problematic as a food anyway, so no harm at all in avoiding it. Most other foods are way more nutritios anyway, and there's any vitamin or mineral in wheat that can't be better attained from some non grain food.

Fri, September 13, 2013 @ 10:34 AM

247. John wrote:
Gladys- Anemia can happen in the face of high or normal iron as well. Iron deficiency can certainly be a cause, but it isn't the only one. Your daughter's iron levels actually seem pretty normal for a woman of her age. If her hemoglobin is low, I would think it might have more to do with a B vitamin deficiency (like B6, B12 or folate). You may want to have those levels tested, and also try a good B-complex. Red meat is also good, cause it has both the heme iron and B vitamins that help to make hemoglobin.

Fri, September 13, 2013 @ 10:49 AM

248. Jack-C wrote:
Good afternoon to all, and thank you all for your info/input.

I am a very healthy wm, 44yo, 6'1", 175lbs.
I eat fruit, salads and fish/chicken, watching my iron intake on every item I ingest.

I was diagnosed one year ago (9/12), with a SF of 4,000 (3987).

My hematologist suggested waiting a year before checking my numbers because they were extremely high.

I have had a liver biopsy, 33 percent scarring, and use IP-6 daily on an empty stomach.

I have had 47 phlebotomies in one year, and just got home from having my blood drawn to check SF. Dr says it will be a week to 10 days before results.

Starting with a SF of 4000, what should I expect my numbers to be after year of weekly phlebotomies?

Also, has anyone used/tried Quercetin as an added natural chealator? (Tom G?)

Finally, if HH people could share their original numbers and time/number of phlebs to get them to maintenance, that would be greatly appreciated.

Thanks to all. J

Tue, September 17, 2013 @ 4:49 PM

249. John wrote:
Jack-C- That is a very high starting ferritin number. The most common estimate I see is that a unit of blood removed reduces ferritin by 30. Using that, you would have reduced it by 1410, giving you a current ferritin level of 2577. Other estimates say anywhere from 30-50. Using the upper end, that would be a reduction of 2350, giving you a ferritin level of 1637. I would tend to think the upper estimate would be more applicable in your case.

Also, it seems when people start phlebotomies, their ferritin drops quicker than the standard math would suggest. My guess it that the body wants to unload excess iron, it just can't, and once therapy starts, overloaded iron reduction mechanisms become more efficient. Inflammation could have also inflated your number.

I can say that, regardless of the mechanism, IP6 does help to lower ferritin. Diet, alcohol and supplement can also affect your number.

When I found out I had iron overload, my ferritin was 440. After 3 months using IP6 and doing only 2 phlebotomies, it was down to 293. Extrapolating that IP6/Phlebotomy number to your rate of blood removal, it would suggest a ferritin reduction of 3528, which would give you a ferritin of 459. My guess is that your ferritin will be under 1000, but probably still over 500.

By the way, after doing 7 phlebotomies (switching to a monthly schedule after the first two, and dropping the IP6 after 3 months), most recent ferritin was 87.

Wed, September 18, 2013 @ 10:42 AM

250. Jack-C wrote:
Thank you John (249) for your input. I love your numbers, and told myself I would be happy with anything under 1750. I will update numbers for all, as a reference, once I get them back.

I also have been reading quite a bit about benefits of wheatgrass (organic) with regards to chelating iron from the body in a natural state. Has anyone had any luck with regards to this natural approach?

Doctor gave me the thumbs up to begin a daily pill of all natural, 500mg of Quercetin in the morning on empty stomach.

I welcome all feedback.

Thanks to all. J

Wed, September 18, 2013 @ 3:18 PM

251. Jack wrote:
Just got numbers back...went from 3987 to 243!

All my other numbers are in line with the exception on Iron Sat, still high, 88 percent.

Any thoughts???

Jack

Wed, October 9, 2013 @ 7:49 PM

252. John wrote:
Whoa, nice! That is a fantastic improvement. Probably means you can slow down the rate of phlebotomies. My guess is that initial phlebotmies removed a hgher amount of iron cause you were so saturated, and that IP6 helped you out quite a bit.

You did the Iron Panel fasting, right? Eating doesn't really affect ferritin, from what I understand, but serum iron (and therefore TSAT) will go up and come back down normally, kinda like blood glucose, right after eating. So those numbers could be a bit inflated if you didn't fast for a complete 10-12 hours (remember, there is some iron in every food).

Transferrin is a carrier protein, and the main one is used to take iron safely to various parts of the body. Your body has been making Red Blood Cells like mad in the past year. In fact, you've made enough blood for 6 people! It's probably been moving that iron around (like, say, from storage in the liver to bone marrow to make new red blood cells), so that could be a reason it is a high percentage. So the pathways that iron travel may be a bit congested, like a freeway at Rush Hour. As your treatment slows and you approach near iron deficiency, I bet that Tsat number will fall right in line to the 30-40 percent mark.

Overall, outstanding progress!

Thu, October 10, 2013 @ 9:43 AM

253. Jeff wrote:
I just had the iron blood panel done and my serum ferritin is 558. I have had significant
joint pain for years. What is the best way to bring the serum ferritin down to a normal range.

Tue, October 15, 2013 @ 7:35 AM

254. Nan wrote:
what would cause going from being diagnosed with hemochromatosis requiring several blood draws and watching what I eat to borderline Anemia after almost 15 +years ???
All testing so far cannot give me an answer and my doctors are stymied.
Could having one Kidney be a factor ?

Thu, November 7, 2013 @ 1:16 PM

255. John wrote:
Jeff- Phelbotomy is the best way to bring it down in the uncomplecated patient. You could also add some IP6 or lactoferrin as supplements while trying to get it down, along with reducing high iorn foods (favor eggs and milk over red meat, and be wary of iron fortified grains, for example).

Nan- 15 years is a long time. Possible that you were overbled, or that you picked up an intestinal parasite. Were you on an aspirin regimin? Did you check you B vitamins? Having one kidney could be a factor, although I don't know how it would affect iron levels. Here's a thought- Heme iron is more absorbale than non-heme. Alcohol, sugar, and vitamin c all promote iron absobtion as well. On the other hand, things like tea, phytates in nuts and grains, and calcium inhibit iron absorbtion. It's possible that you swung your diet from one extreme to the other and (along with treatment) made yourself boderline anemic. Could be something as simple as going from being a heavy drinker to being a non-drinker (if you had to give up alcohol as a result of losing a kidney, for example). Just a few things to consider.

Mon, November 18, 2013 @ 9:25 AM

256. carol wrote:
Waiting on a diagnosis of hemochromatosis...sounds so scary....have had arthritis for ars...now have big sore index knuckles.which is why I went to doctor....immense fatigue..crazy sleeping habits..stay tuned for results when I get them..blood letting is my worst nightmare..cannot tolerate needles..many bad experiences..

Wed, January 8, 2014 @ 10:03 PM

257. Brandi wrote:
I have just above high normal iron saturation and TIBC, but my ferritin, when I don't supplement is at 6.7. Because if the consistently high total iron and sats I was tested for the mutation for HHC, which the hematologist said I had. My concern is, when I supplement to increase my ferritin, my saturation goes up even higher (H&H always within normal limits). I haven't found anyone locally (Atlanta, Georgia) or even almost locally who has a clue of how to help me, or even what the MOST important thing to watch is. Is it MOST important that my saturations don't go way high so my body doesn't start storing iron in unhelpful places? Is it most important to get my ferritin up so that even if my saturations are a little higher that isn't the most detrimental of the combo platter? I feel a little confused because most of the information I find about iron avidity is post-phlebotomy, but that isn't the case with me.

I don't feel any better/worse than I did when I heavily supplemented with heme iron and my ferritin went to 23. (but was concerned about sats creeping up towards 70). Thanks for any help you can offer. I see other folks' numbers and am thankful that I may well have caught this in an early stage, but sure am having a challenge finding help! Thanks!

Sun, January 19, 2014 @ 11:45 AM

258. John wrote:
Brandi,

Your ferritin would indicate that your iron level is low, but your saturation is high. FIrst question- did you do the test fasting? If not, that could explain the high saturation, and maybe your iron is low all over. Also, did you make sure to NOT supplement iron before the test? Fasting is usually about 8-10 hours, but an iron supplement might throw that off. Maybe halt any supplementation for at least 24-48 hours before the test. Also, did you have your hemoglobin tested? You can usually donate blood if it's above 12.5, lower might indicate a further problem. Could be that your B vitamins are low (B12 is necessary to make hemoglobin, as are other Bs), so maybe your Tsat is high because your body wants to make more hemoglobin, but doesn't have the other necessary vitamins to complete the process. In that case, a B comlex might be the thing to help you out.

Fri, January 24, 2014 @ 9:25 AM

259. Renee wrote:
I have recently had blood work done with the results being high hematocrit (46.8) yet low iron saturation. All other results, including hemoglobin, were within normal range. My physician is making a referral to a hematologist for further analysis. What could result in these extremes / inconsistencies?

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