Iron Disorders Institute:: Iron Avidity

Iron Avidity

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.

Posted on Friday, February 19, 2010 by Cheryl Garrison

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49 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!
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 :)
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).
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.
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...
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
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.
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
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!
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.
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
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.
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.
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?
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??
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!
May 20, 2010 @ 2:13 PM
17. Anna wrote:: Any knowledge on how B vitamins affect iron loading?
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.
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.
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?
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....
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.
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?
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.
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.
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! :-)
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)
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.
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
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!
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
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!
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????
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?
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.
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?
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?
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
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.
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!
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.
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.
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
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.
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.
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.
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)
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!
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.
July 29, 2010 @ 9:48 PM

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