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64 comments (Add your own)

1. wrote:

Sat, December 19, 2009 @ 8:44 PM

2. carolyn richey wrote:
I was diagnosed with hemachromatosis 2 years ago. I had to give blood every week for over a year then 2 times a month. I have finally got all my levels down. My concern is for the last 6 months my ferritin levels have been at 9-15. My doctor still tells me to give my blood monthly.... Another concern I have is I started craving crushed ice about 7 months ago. I go through almost a 10 lb bag a day. I told my dr and he just blew it off. I also started having restless leg syndrome a few months ago. Today I went to give my blood and my hgb was 11.7. I haven't had this low of a hgb in years. Since Sept my hgb levels have been 18 then 14 and now 11.7. What does this mean. I have read that eating ice can cause anemia. Does anyone know anything about this? I am seeing my dr. tomorrow to run some labs. Please respond if you have any info. thanks

Mon, December 28, 2009 @ 3:32 PM

3. mckohtz wrote:
Giving blood should slow to 3-4 times a year if you have a Hgb reading of below 12.5g/dl. tell your doctor!

Tue, February 23, 2010 @ 10:04 PM

4. mellyhudel wrote:
i have pernicous anemia and have had to get iron infusions for it. my hgb was three, and i was told by my doctor i'm lucky i didn't die. the symptoms you are describing are the same as what i went thru. craving ice or wierd things is called pica and it's a side effect of anemia. i had a physical compulsion to eat ice and salt and when i can't get it i get very cranky. i also get very severe muscle cramps, and it feels like my entire body ties up in a knot.

Sun, March 28, 2010 @ 9:54 PM

5. calicatt wrote:
doctors need to to understand that pica is very much a real symptom of anemia. i too would consume bags of ice and sit in front of a small space heater,because i was so cold from already being anemiac. i

Thu, May 6, 2010 @ 10:16 AM

6. Debbis S wrote:
I recently had labs done and my ferritin levels were 420. My doctor is waiting 3 months to re-test. Does anyone know if this is the normal process for diagnosis or should I be getting a 2nd opinon?

Mon, July 19, 2010 @ 4:02 PM

7. Chris wrote:
@Debbis,

I was recently diagnosed hermochromatosis. I have a ferritin level of 1033 ng/ml norm of [22-322].

Were there any other abnormalities in your test results?

Wed, August 25, 2010 @ 4:57 PM

8. MS wrote:
Been feeling fatigued for 6+yrs. Tested for almost everything. I have a ferritin level of 720. And had a recent liver biopsy, results are a 3+out of 4, for the iron stores. Blood iron and liver enzymes are within normal range. Tested negative for hemochromatosis. Any suggestions until they figure this out. Regarding diet, nutrition, and/or any other options I should be pursueing?

Fri, November 12, 2010 @ 10:34 PM

9. Norma wrote:
My iron has always been low but no doctor paid much attention to that . Had heart attack because of that. Does anyone know what the symptoms of anemia connected with an inflammatory disease are as I also have Fibromyalgia. Thank you

Tue, November 30, 2010 @ 4:19 PM

10. Shawn Guiles wrote:
I have hemochromatosis. I have had symptons for years but they didn't diagnose me until recently. I have one C282Y and one H63D, they both mutated. I was a very strong tough 27 year old husband and father. This has brought me to my knees. The problem I have is no one acknowledges the joint pain I have. It is intense. I can't work, I can't play with my son. I ride the couch everyday. I have been giving blood weekly for the last 3 months with no relief from the agony. Does anyone out there feel as I do?

Mon, December 6, 2010 @ 7:03 PM

11. DEBRA CRIPPS wrote:
I was recently dianoised with hemochromatosis. I have to get the weekly blood draws and it seems the joint pain has got worse since we started this. I have two C282Y genes. I had my secound blood draw and i got a severe migraine that has lasted for 5 days, has anyone else experienced this? Also my family is in denial of this diagnoises and refuse to get them self tested. As for you Shawn i already feel some joint pain and am praying to make it through without getting bed ridden as i two have kids to raise.

Sat, January 8, 2011 @ 10:53 PM

12. Cheryl wrote:
Was diagnosed with hemochromatosis over 11 years ago, my ferritin levels were close to1000, my blood was so thick, that my O2 saturation levels were 42%. They admitted me to the hospital & ran every test possible including liver biopsy which came back positive for 4+ for iron stores & stage 1-2 cirrhosis. Then they did a DNA test for HH it came back positive two C282Y genes. Then the phlebs started, after the first 10 I had no more veins, they tried several ports after three staph infections, we went with an AV fistulas.( artificial vein) in the arm. I have restrictive cardiomyopathy , no thyroid , and yes the pain can be the worse.. But I am a lot better today than 11 years ago...each pleb is different, some are fine other times it leaves me exhausted .. Good luck everyone..

Mon, February 21, 2011 @ 8:52 PM

13. Lbrient wrote:
I have been having problems with my knee and lower back. Plus my hair has been falling out for about a year and feeling fatigued. I have had Thyroid problems for about 9 years first hyhper now after treatment I have hypo and am on synthroid. I thought that was maybe why my hair was falling out, I said this to my Endo and he didn't want to hear it he said my blood work was coming out fine for my Thyroid so it had nothing to do with it. So I had blood work done for insurance purposes and they told me my iron level was elevated. So my family physician did more blood work for ferritin storage? Then he suggested I see a oncology hemotologist. Then he did blood test and told me my level was just 70 and it should me under 50 but I did not have hemachromotosis. But I tested positive for 2 copies of the c282y mutation of HFE. I am not really sure what all this means. He still wanted me to do a bleeding and he said I may only need to do one a year. I go this week to be checked again. He said there would be no liver or other organ damage because my level was only 70 and there were alot of people that had been over 1000 so I didn't have to worry. I am worried. I don't understand the whole test results and I am wondering if this is what had been wrong with a couple of my family members that died of heart and diabetes and Lymphoma and diabetes. But the blood doctor told me that the liver would be the first organ affected and I don't know anyone in my family that has has liver problems. Is there anyone that can explain this type I have better to me? Thank you.

Sun, March 6, 2011 @ 11:48 PM

14. Talene wrote:
Hi My name is Talene and I am a dietetic intern. I am developing my own case study presentation on the disease state of hemocromatosis. My father has this disease as well but I was hoping to find more informaiton and personal stories from other individuals to incorporate into my paper.

Is anyone out there willing to share their story with me? Your name can continue to remain anyomous, I just would love another story to add to my paper.

Please email me back at tkachigian@gmail.com. I would love to hear from you,
Thank you

Wed, April 27, 2011 @ 1:45 PM

15. Aimee Halpin wrote:
http://theburnedhand.wordpress.com/

This is my story on fighting hemochromatosis.

Wed, May 4, 2011 @ 6:42 PM

16. lorraine wrote:
my body doesn't make iron anymore,get iv iron every other week.but the last 2 times it doesn't seem to help like it did.my restless legs get worse,shortness of breath,chest pain.cravings for sweets then salty,strange cravings(not ice,or stuff.pica) muscle and joint pain(unsure if connected)tired,depressed.

thanks for any help

Fri, May 6, 2011 @ 2:48 PM

17. Loretta wrote:
We were just recently told that my husband has high iron levels. Still trying to figure out what is what. He went in with symptoms of abdominal pain on the left side. They ran blood work and this was their results. Im concerned, one because I don't know what this fully means for him other than he may require having to give blood. Things that I notice with him, whether related or not, he always seems so tight chested, meaning he coughs a lot like there's always a frog in his throat. He's not a smoker, and is very healthy otherwise. He has complained for the past 4 months of upper adominal pain just below the rib area on the left. He has had loose bowells now for that time period as well. To me he seems like he's lost weight, he's always had a great build, but is now looking like he's losing mass. He doesn't think so. He's worried, his mother died of Lukemia and his father has dealth with Prostate cancer. So there is always concern that he too would get cancer of some sort. Can this lead to cancer. Do I need to be concerned? Any reassurance out there? I was told his Ferritin was at 444 His trans ferritn at 1.71 Iron range at 23.9 what does this mean to me?
Help.
Loretta

Thu, May 19, 2011 @ 3:34 PM

18. Connie wrote:
Lorraine,
Your experience sounds like my daughter's. She also has iron deficiency anemia that has been long standing, However, she has only had one round of iron infusions (5 infusions-one/day) and instead of feeling better like everyone said she would, she says she feels worse than before. Almost a year ago, she had a low normal cortisol level and symptoms of Addison's disease which have gotten worse over the last year. Salt cravings are a symptom of Addison's disease as well as extreme tiredness(fatigue), muscle and joint pain, shortness of breath, muscle cramping as well as others. Look up Addison's disease online and see if you don't have the others as well. Many doctors don't even think of Addison's disease as a possibility. I am hoping to get her retested soon. Hope this helps.

Mon, May 23, 2011 @ 10:33 PM

19. Lorna wrote:
Connie
I am homozygous C282Y but 4 years ago became severely anaemic (due to heavy periods) so GP gave me iron tablets but before I could finish the 2 week course I collapsed and was taken to hospital where I was then diagnosed with adrenal insufficiency even though I also had a low normal cortisol level. I have been taking hydrocortisone steriods (25mg/day) ever since and feel great. No more salt cravings, tiredness, muscle weakness, dizziness or nausea etc. unless I overdo things or get an infection and then all I do is go to bed and take extra steroids until I feel better. However, I do have to wear a MedicAlert bracelet as things could get serious - so please have your daughter re-tested!!!!
When I was in hospital the Doc said I was too poorly for it just to be the anaemia and then after the Synacthen test to check for Addison's Disease he said I was very lucky to be anaemic as it brought to light the adrenal problem!

Good luck x

Sun, June 5, 2011 @ 2:03 PM

20. Dani wrote:
Ms
I hope you return to the forum. High ferritin +increased iron storage in the liver can be a result of a hemolytic anemia such as Thalassemia

Fri, July 8, 2011 @ 1:03 AM

21. Kathryn wrote:
In 1996 my Rheumatologist did a blood test on me and sent me to an oncologist/hematologist because my blood levels were so low. It turns out that I have iron deficiency anemia due to not absorbing iron. My doctor believes it to be caused by my Systemic Sclerosis/Scleroderma which I have had for some time. I started out having 2 iron infusions a year. Now, it is August, and I have already had 5 infusions this year. I still do not feel well. I fall asleep anytime I sit still, have restless leg syndrome, severe fatique, cramping and just don't feel well in general. My mother went through this same thing before she was diagnosed with leukemia. One of the things they found was that her kidneys and liver were not producing a hormonne called EPO. She now has infusions with EPO in them. She was told without the EPO the iron infusions would do her no good. I wonder if I have the same problem since the iron infusions don't seem to be working for me anymore.

Sun, August 7, 2011 @ 3:53 PM

22. Jan wrote:
I was diagnosed with hemochromatosis 2 weeks ago. Ferritin level is 2380 and trans sat is 95%. and positive DNA test. I am scheduled for a liver biopsy next week and start phlebotomies in a few days. (liver enzymes slightly elevated). I am a 46yr old woman who works over 50 hours a week, used to love to golf, played the piano, and jogged as often as I could. I never smoked, watch what I ate and pretty much lead a healthy life style, never liked lying around on the couch. Approximately three years ago everything changed, I started have symptoms, pain in my hands, arms,neck. Extreme fatigue, heart flutters, hard time concentrating, confusion and many other symptoms. I was never one to go to the doctors, mostly because of my time restraints. But if I could go back in time I would demand these doctors take me seriously and run more tests. Because of these physicians not paying attention to my symptoms and only relying on routine type tests, my chance now of no organ damage is much less. And who knows how much time they took off my life. I know my body and I knew something was wrong. I kept telling my friends it felt like my body was being poisoned. (That is the best way to describe the way I feel). I live in Pittsburgh Pa and we are supposed to have some of the best doctors in the world and I can't believe how little the doctors I have seen know about this disease. If we had physicians who would treat their patients like people and not numbers, more people could be properly diagnosed. If any body has symptoms of hemochromatosis I would tell you to go to some kind of specialist gastronologist or hematologist. Primary care physicians seem to be clueless. I did a lot of research by getting copies of my blood results from the hospitals and researching over the internet. Knowing the results of the DNA tests have atleast giving me the reassurance that my symptoms are real.

Sat, August 20, 2011 @ 9:21 PM

23. pat wrote:
My son who has been suffering for many years with an undiagnosed illness has low ferritin and low transferrin but normal iron levels. I am looking for information.

Wed, August 31, 2011 @ 10:37 PM

24. Bridget kraemer wrote:
I have just been dignosed with lron deficency amenia. I had gastric bypass 7 yrs ago and can't tolerate any vitamins. For the last 4 years i have had stabbing in my bones mostly legs and arms now pain is in my ribs. I am still undignosed for any illness and i even went to the mayo clinic in florida for 8 weeks on and off. Still nothing. Findings 2 oblong bands in the spinal fluid not enough for dignosis of MS. Something with the blood work they thought it may be an andrenal problem but no luck. Then blood work show evidence of stiff person syndrone but emg not clear enough. Did do a skin biopsy back at my neuro which found positive for small fibre polyneuropathy. Once had bloodwork with ANA of 640. they thought it was lupus but still no luck. Best part is 15 yrs ago i went blind in one eye and 24 hrs later i was blind in the other eye. Still no dignosis for that. I stayed blind for 3 months and taking steriods which my vision returned after 3 months iv steriods. Now this anemia. Can anyone help me or have been through this ever..GOD Bless

Sun, September 4, 2011 @ 7:02 PM

25. Bernice wrote:
I have been dignosed with Ferratin overload of 350. I know this is a Protein stored in the liver but what else can I do to prevent this and what does this mean for long term health. anxious to know.

Sat, January 28, 2012 @ 5:46 AM

26. Robin wrote:
Both my 23 and 24 year old daughters have Hemachromatosis. I am concerned with the lack of knowledge about HC in reguards to the medical profession including specialists. Even though they had high transferrin sat levels, high iron and high ferritin I had to push for them to be tested for HC.
My youngest daughter has hypothyroidism and is on synthroid. Her hematologist says there is no connection between HC and hypothyroidism. I don't believe this to be true as she is also the same doctor that says her transferrin saturation at 94% is nothing to be worried about and that only her Ferritin level (which is also high) is the main concern. Both daughters also suffer from migraines.
Are there others of you with HC that were diagnosed with hypothyroid at a young age? How about migraines at a young age along with HC?

Sat, February 25, 2012 @ 8:22 PM

27. patrick wrote:
just been diagnosed with haemochromatosis gene, as a carrier,can anyone explain, what does this mean, don,t really know much yet about this, my doctor say,s i will need blood test twice yearly, .

Tue, March 20, 2012 @ 5:28 PM

28. john t. wrote:
Several years ago my primary care doctor told me that my iron level was elavated but she didn't tell me that it was dangerously high (1700 to 1900), I found out last year just how high it was from another doctor and he sent me to a hematolgy doctor where I've been giving a unit of blood every two weeks now and my ferritin level has come down to the 800's. They say I tested negative for hemochromatosis but I have a majority of the side effects from this disease but they do say that i have iron overload, which has basically the same side effects. I also have a lung disease called idiopathicpulmonaryhemosiderosis & I've contacted the National Library of Medicine and they said that the two are related or that my iron overload can be or is a result of my lung disease. The bottom line is that I will have to have my blood levels checked for iron overload & have phlebotomies on a continual basis for the rest of my life

Wed, April 18, 2012 @ 12:42 PM

29. john t. wrote:
I need to correct my message in regards to the national library of medicine, they said that my hemsiderosis is arbitrarily different from hemochromatosis and referred me to a national lung site where they made the correlation between my hemosiderosis & me having iron overload.

Wed, April 18, 2012 @ 12:53 PM

30. Caro wrote:
I've been bloodletting weekly for 6 weeks, I was hoping my iron levels would go down by now. I feel sick all the time and I've been getting a lot of pain in my joints, mainly my legs, hips and back. I was wondering if this is going to settle down? I also have been drinking more than I usually would ... since being diagnosed actually, is this bad? Im on 33, I'm bit worried that I will stay sick and never get to travel or get married ...

Fri, August 3, 2012 @ 5:32 AM

31. Atlegang wrote:
I'm very grateful that we know what's wrong, and I'm looikng forward to feeling better. I know that there's a reason for whatever has happened in the past, and I'm happy that I'll be able to be more present as a wife, mother and friend in the future:)

Sat, August 18, 2012 @ 8:07 AM

32. Tracy. uk wrote:
I was diagnosed with heamochrimatosis in May this year, my crediting levels were over 1200, I was extremely tired and exhausted all the time,and developed joint and hip pain so sever I could barely walk, the pain radiated from my hip around to my right side abdomen under my ribs, I had every blood test available but this did not show anything. I felt so ill. I had a scan that showed enlarged liver and then an iron test was done which did eventually confirm HH. I have had weekly venesectins since then and my ferretin level is now down to 42. I am still tired and have the hip pain, but do feel better than I did. My family are having the genetic tests done now.

Sun, September 16, 2012 @ 4:16 AM

33. Molly wrote:
I am a 45 year old female and have been anemic off and on since 2006 when I had a PE in my right lung. Ever since then my HGB levels have been 15.4 or higher and 13.5 for a woman. When I had my last Iron level checked it was 19 and the lowest level is 37, so I had IV infusions for 6 hours. My question is when your Iron level is at 19 then shouldn't your HGB levels be lower also? When my Iron level was 19 my HGB level was 15.8, still higher than it should be normally.

Sun, September 16, 2012 @ 7:03 PM

34. Hannah wrote:
I have recently been diagnosed with iron deficiency anemia (from suspected gastrointenstinal bleeding) and have haemaglobin levels at 94 (115 is the lower limit of normal for female) with ferritin (iron store) at 6.7 (usual lower normal limit is 20). The best news is that I now have an explanation for the 18months of chronic fatigue, restless legs.. and pica - the pica was the one that stumped me because I had never heard of it before I experienced it; and I would never have believed that anyone could willingly eat non-food until I did! The pica I have is for chalk and I have had this extremely strong drive to eat as much as I can all day and every day. I am now on a trial of ferrous fumarate ta 200mg (65mg Fe) three times a day for three months. Hopefully this will cure the pica.

Tue, October 2, 2012 @ 2:56 AM

35. Denise O'She wrote:
Hi
I'm 48 and female. I had a blood transfussion in May as my hb level was 6. I was diagnosed that I had prenicious anemia in Oct and was given vitamin B12 injections. My iron serum level was taken a couple of weeks ago and this was 3, I'm not sure if this is low and don't really understand the tests, am waiting to see a doctor. I seem to be intolerent to iron as iron tablets and liquid make me really ill and am a strict vegetarian, not sure if I should be worried, I do feel as though I'm going to faint all the time but have a young family and work full time so am very busy.

Wed, December 19, 2012 @ 6:58 AM

36. Holly Hunton wrote:
My daughter, who is now 18, has struggled for 6 years with chronic, debilitating fatigue that was finally diagnosed as a combination of insomnia, periodic limb movement (nighttime restless leg syndrome), and bruxism after 4 night/day sleep studies and trials including 20 drugs--none of which were effective. Along the way, she developed migraine headaches. She describes having food cravings, which vary but include both sweet and salty foods. She's never had pica. She also has OCD. Her symptoms made it impossible for her to attend school and she has become depressed after being told last week by one of her doctors that she should "accept her symptoms and learn to live with them!" She is devastated. Her recent bloodwork showed a Ferritin level of 26, which is way too low for periodic limb movement. I don't have the rest of her results with me, but I do know that her Hgb, Hct, MCV and Sed rate were within normal limits.

When she took iron supplements for 4 months in the past, she couldn't get her ferritin level higher than 70. Her doctor wanted them above 150...

Any help anyone can give is most appreciated!!! She won't be able to work or have a family if her current condition isn't made better.

Tue, April 16, 2013 @ 12:47 PM

37. Philip Brumpton wrote:
I have heredity Hemochromatosis. I started with burning sensations in my legs and pins and needles in my face and lack of energy. My ferritin levels had reached 475. after phlebotomies I eventually got down to 58, the sensations went when below 90 serum ferritin.
I had nearly 5 months of great health and no symptoms of burning & tiredness but levels increasing each blood test. the burning. pins and needles and tiredness have returned at 90 serum ferritin. I am now 101 serum ferritin.
The UK has guide lines of normal for men 50 -150 where as the USA has levels are
25 - 75. I am seeing my specialist next Thursday as at present he says I don't need any blood off. Can anyone explain why the limits are different, or is it just the Uk that tries to save money. quality of life is what I am after.
I am 68 years old

Sat, September 21, 2013 @ 2:22 PM

38. Carmen wrote:
I have dealt with low iron on and off for years. Recently while running for a train during my commute, which I do daily, I had severe heart palpitations and shortness of breath. I run for trains a lot and this was a short run so this concerned me. I literally though I might be having a heart attack. It got better after a few minutes but began to return over the next few days during any exertion. I had previous been going to the gym regularly 2 x per week. I had another doctor that I see for weight management tell me that my iron was low and I should take supplements and that I would have a hard time losing weight with my iron so low. My fatigue, which is something I have just learned to live with, got a lot worse. I need a nap every afternoon after my evening commute. I finally went to the ER (I had been taking iron 325 a day for about 1 1/2 weeks at this point) and they told me my iron levels were low and recommended I see a hematologist as well as begin taking oral iron pills 3 x per day, 325MG. It took 6 weeks to get an appointment with the hematologist and she has recommended an iron transfusion for which I am scheduled for this afternoon. My Iron at the first doctor from just the finger prick was Trans Ferrin 286, Ferratin 2, Iron 7, Iron Sat 2 and IBC 373, if this makes sense to anyone. At the ER my RBC was 4.95, HGB 8.6, and HCT 30.9, MCV 62.4, MCH, 17.4, MCHC 27.8. My thought are that these don't seem life-threatening after the research I have done. Many of you have much lower levels. And I have always hovered at borderline anemia my adult life. Why the sudden heart palpitations, shortness of breath, and extreme exhaustion? And how do I keep this from reoccuring. I suppose many of these questions will be answered over the next few months. Along with my transfusion today, I will be getting a colonoscopy, endoscopy, and have a follow-up with Obgyn. I also have had a severe craving for sugar. I have always loved chewing on crushed ice and oddly I love the smell of household cleaners, Like a LOT. I wonder if that is related too? I will update with what I discover along the way as I can see I am not the only person suffereing. The hardest part is that I don't have a gaping hole or anything and this is completely invisibile and me being a 42 year old mother of 4 and I work full-time about 45 hours per week with a hour plus long commute. I don't have time to be tired. And frankly people get really tired of hearing how tired I am. They just connect that with being lazy. That I am not. But I would really like to be at my best to deal with my already very busy life. Any comments, suggestions, advice are sincerly welcomed.

Fri, March 14, 2014 @ 10:45 AM

39. Darlene wrote:
I was diagnosed w/hereditary hemochromatosis in 1997. A sister is 75 years old and
has been told "not to worry as her ferritin level is just over 100." She has heart problems as well as joint pain and circulation problems. Does she need to see an oncology/hematology specialist? All suggestions will be read. Thank you! Yes, my hematologist keeps my ferritin level below 50 rather than what the general practioner was keeping me at (between 250 - 300). Patients must educate themselves as I did and that is the only way I got referred to a specialist!

Sat, June 21, 2014 @ 12:11 PM

40. Penny wrote:
my story is similar to yours Carmen- except that I'm a
25 years older - my anemia resulted from combination of medications
causing gastritis - ferritin at 6 . have had second iron infusion
and wondered if anyone feels significantly increased pain and fatigue etc
after infusion. I have fibromyalgia and arthritis and developed whole new pain
issues as the anemia progressed . Mostly I was wondering about how do people feel after infusion. I expect if I rest some tomorrow, I'll get back to normal levels of pain etc.

I understand from researching here that myalgia etc occurs for some after the transfusion. Maybe I just want so desperately to feel better than feeling worse for awhile
takes adjusting expectations and attitude. Reliable information and feedback from others always helps to make the quarter turn and see things differently. Wonderful web site thanks.

Tue, June 24, 2014 @ 8:59 PM

41. Gisela H. Lepore wrote:
I am so confused.
In the fall of 2010 I had blood tests done and as a result the doctor called me into his office to explain that I was a very sick lady and literally walked me to the hospital, no nightgown, no toothbrush, nothing. My hemoglobin was 7 and I got 2 blood infusions. I had to stay over night they brought my hemoglobin up to 10. I was given oral iron to take but nothing was done to find out why my numbers were so low.
Over several months the oral iron seemed to keep my Hemoglobin within the normal range but then it dropped again. I had moved and was now seeing a different physician. She ordered a colonoscopy and endoscopy which came up normal and showed nothing that would relate to my loss of iron. I do have a hiatal hernia which I knew about for years. This Doctor wanted me to have surgery because it could be the problem. I refused to have major surgery simply to rule something out. That did not go over well to say the least.
I continued with the oral iron for a few months but became all of a sudden very weak. Shortness of breath and fatigue were so bad that I could literally not work. During that time I saw a Hematologist, a Cardiologist and a Pulmonologist, they all did all kinds of testing. Then I was scheduled for several iron infusions to which I ended up with am extreme reaction. So the Hematologist canceled them and put me back on the oral iron. I still knew nothing about my condition.
In 2013 I moved to Oregon. Same situation, different Doctors. An other colonoscopy
and endoscopy plus some camera test for the small bowels. My Ferritin level had dropped to 9 and we started again with iron infusions ordered by a Hematologist although my primary physician does not feel they are necessary. This year alone I have received 15 iron infusions. I am 66 years old and when I asked if I would have to keep on taking these iron infusion I was told possibly.
I have researched all I can. Is there anybody out there who has had a simular situation.
Any advice is greatly appreciated.

Mon, December 1, 2014 @ 7:57 PM

42. Ingrid wrote:
Dear Carmen,
your story in many ways resembles the experience of my husband. He also is scheduled to have similar testings. We would love to hear how you fared. Hope you will read this message. Thank you.

Mon, December 29, 2014 @ 4:07 PM

43. Kiki wrote:
Hello Carmen,

Your story sounds just like what I went through two weeks ago, but I am 50. The MD says my ferritin is low, but is more concerned that my hypothyroidism has gotten worse. So I am taking a bit more synthroid than before, and an iron supplement. But like yourself, I have heavy fatigue after exercise and am starting to worry about my heart. I also now have heavy periods which I thought was menopause but my MD says could be due to the thyroid problem. How have you been?

Warm wishes to all,
Kiki

Mon, February 2, 2015 @ 11:34 AM

44. Faye wrote:
Carmen,

I went through the same thing. After a ridiculous series of events, I had surgery for my hiatal hernia. Behind the hernia I had bleeding ulcers and strictures. Since the surgery, I have had not had to have a single transfusion or iron infusion treatment. My hgb level has been normal ever since.

Fri, May 1, 2015 @ 10:04 PM

45. Thandi wrote:
I have anemia i have been running looking for help here are the signs i have tired eyes,abnormal heartbeat,mild headaches,muscle tension and chest pain my ears are paining i need some advise plz its been three months now

Wed, June 3, 2015 @ 9:10 AM

46. Shaun wrote:
I am a 29 year old diabetic. I give blood every 56 days and have done so for around 6-8 months Maybe a year. Each time I get my iron levels checked before the donation it has read close to the maximum amount you can be at before they refuse your donation. It has actually increased every draw with this last draw being 19.6. I'm a very fit person and track all my food and I eat very low amounts of iron. I also get labs done every 2 months or so and for about a year my liver enzymes have been elevated and my hematocrit as well. Hematocrit reading 2 weeks about was 52.5. Now my question is does this sound familiar to people with hemochromatosis ? I'm going to go to the er dr tonight because my fatigue is unbearable. Just a little feedback on whether this sounds like symptoms others had or if this doesn't sound like hemochromatosis. Thanks

Wed, June 3, 2015 @ 1:57 PM

47. Katie wrote:
I was recently hospitalized with severe iron deficiency anemia. My hematocrit was 5.6 and my ferritin level was 1. Everyone was astounded at how I was living such a normal life, full time work as a CNA. I received 8 iron transfusions and my hematocrit is now at 8.3, but I don't feel any different from before. I even feel more tired. My doctor suspects I cannot absorb iron and has sent me for a full GI workup.

Sat, July 4, 2015 @ 10:16 AM

48. Lesley Kite wrote:
I was diagnosed with hemochromatosis in April 2015. I went to a holistic doctor, my gynecologist, and told her I was SooOoo tired, my skin was unhappy, and I hadn't been on birth control for two years and nothing was happening. She ordered a complete panel of my blood, and my ferritin was 416. She had me go back and re-test my iron levels to be sure, and the first test proved correct. I next went in to the lab for genetic testing and was diagnosed with hemochromatosis. If you haven't got this test- do it. And I paid out of pocket since I didn't have health insurance at the time, and it was around $300 in California. I have been seeing a hematologist now who is not very helpful. I asked her what I could do to help my disease, and she told me not to eat high iron foods.... Duh!!? I went back to my holistic doctor and she explained to me that iron is pro-oxidation, so anti-oxidants are really good for us. I was buying a daily vitamin from her office and she said that was really good for anti-oxidants: Metagenics PhytoMulti daily vitamin WITHOUT IRON haha. She also told me to take a daily liver support since the liver is the most affected organ. I paid $35 for each bottle and there's 60 in each bottle. DON'T buy cheap vitamins- they aren't helpful and put a bunch of crap in you that your body can't break down! If you can- go see a holistic doctor! Worth the money and much more knowledgeable and helpful than these Western medicine doctors!

Wed, September 2, 2015 @ 10:52 AM

49. Tonya wrote:
My 13 yr old daughter has been suffering for several weeks with left upper quadrant abdominal pain and severe fatigue. Ultrasound was normal as well as all labs except for a low ferritin. Ok, so we can take something to hopefully correct that but her abdominal pain is still unexplained. Her pediatrician is referring us to a GI doctor. Any suggestions on what may be causing the pain or any tests I should recommend be performed.

Tue, September 8, 2015 @ 4:45 PM

50. Ron Moore wrote:
OMG! I thought I was going crazy. I was diagnosed with Hemochromatosis over 20 yrs ago. And have never been treated. I had to go to ER Tues, with chest pains, SOB, chronic joint pain, sweats, liver pain and a killer migraine headache. I didn't ask or don't remember my ferritin level was but he said it was critical, and they took a pint. Now I have to give 500 ml 1 to 2 times wk. I'm glad I found this site. This explains all my health issues.....

Thu, September 17, 2015 @ 9:59 AM

51. Elize wrote:
Feel very weak ongoing bruised feeling in rib cage bone pain legs feel weak and lower back nauseas dizzy.

Mon, October 12, 2015 @ 2:06 AM

52. Elize wrote:
Bruised feeling in ribs nausea dizzy weak

Sat, October 17, 2015 @ 12:18 PM

53. william sonny wrote:
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Thu, November 5, 2015 @ 5:44 AM

54. Julie wrote:
Three years ago I was hospitalized because my hemoglobin was at 2.7 the doctor's never found the cause for this and that has bothered me for 2 years, I would really like to know what caused it, there was no bleeding of ant kind so I have no idea what caused it. It's been good ever since then. Anyone have any idea why this happened?

Thu, November 26, 2015 @ 11:50 PM

55. Elize wrote:
Please have this upper left side tearing stinging pain nauseas dizzy bruised feeling in chest constantly frog feeling in throat.

Sun, January 24, 2016 @ 9:57 PM

56. Marilyn Costello wrote:
I am 72 years old. There are so many comments here that sound just like me. I have been ill for over five years. I have fibromyalgia and iron deficiency anemia. My rheumatologist discounted lupus. I have slowly gone down hill over the five years. I have seen my PCP, a Pulmonary Specialist, Hematologist, Endocrinologist, a Rheumatologist, Gastroenterologist, Allergist and Cardiologist to find out why I am severely fatigued, extremely week, have extreme nausea, undergo dry heaves and vomiting, have heart palpitations and profusely sweat just to walk 10 feet or shower on a stool. I have seen some of the doctors several times and have had numerous tests from all of them. Every thing was normal. I have been a couch potato for most of these years. I went to the ER a week ago and collapsed. I was cared for by a doctor of internal medicine who literally saved my quality of life. I have severe iron deficiency anemia--my hemoglobin was 7.8 and hemocrits were 23. I am not yet educated enough to understand the terms regarding iron lows and highs. I will surely learn soon. The doctor gave me one unit of blood that increased the hemoglobin to 7.9. I had two more units of blood that seemed to bring me feeling normal again. I take two 325 mg of iron twice a day, will have another endoscopy/colonoscopy to find out if I am bleeding internally. I may be one of the people who do not absorb iron in which case iron will be infused. The hospital doctor said I am still "two pints short" (I am living on 7 units instead of 9) but hoping my body will replace the blood cells (2 units) by themselves with iron and diet. I am keeping a very close watch on myself. I can now walk, shower and do short tasks with no problems. I know it was the blood transfusions that did the trick.

Sat, February 13, 2016 @ 6:06 PM

57. Gaylene Jones wrote:
lve been diagnosed with anemia my iron levels where 3.3 just what to know if anemia causes burning and joint pain in feet.

Mon, May 23, 2016 @ 5:50 PM

58. Elize wrote:
Hi please I have this tearing stinging raw tight full feeling in chest nausea dizziness weakness. What can it be.

Mon, June 27, 2016 @ 12:54 AM

59. Vanessa wrote:
I am a 47 year old female and have been healthy all of my life thus far. About 4-5 months ago I started to have heart palpitations with red wine and then progressed to other alcohols. I assumed that maybe I had developed an intolerance to alcohol. Then these heart palpitations started to occur randomly during the day. I would come home from work and go straight to bed just to be done with the uncomfortable feeling in my chest. I have been to Emergency twice and all heart tests were normal, have had an ecg, echocardiogram, and wore a 24 hour halter monitor. All normal. I feel short of breath on some days and these heart palpitations feel more and more like a heavy discomfort in my chest. Saw a physician the other day and my Ferritin levels were 6. He believes that my issues have been because of this so he has me on Feramax 150 mg three times a day. I have been only taking it twice a day because I feel uncomfortable taking that much iron. He also suggested that I start my birth control pills again due to heavy periods from being off of it. Coincidentally my symptoms have started around the same time that I have been off the birth control. It has been 3 days now since I have been taking the iron and birth control and I am hoping for some reprive from these symptoms very soon and am hoping this is actually what the issue is. If anyone else has this issue can you tell me how long it has taken for symptoms to resolve.

Sat, July 9, 2016 @ 7:36 PM

60. Kym wrote:
Diagnoised with Heriditary Hemochromotosis several months ago. Have gone through somewhere around 20 blood draws over the past few months. Ferriitn level was almost 800 and is now under 300. I told my doctor about my joint pain and he said it is not caused by my disease. Really? I take it the profound sweating isn't either. I am scheduled to see a Rhematologist soon, just to rule out other causes of the joint pain. It is very apparent that Doctors are less knowledgible about this disease than they are willing to admit.

Just want educated answers from a doctor that cares.

Wed, August 31, 2016 @ 12:25 PM

61. Brittany wrote:
I was diagnosed of hepatitis in 2012 and I have tried all possible means to get cure but all to no avail, until i saw a post in a health forum about a herbal doctor from South Africa who prepare herbal medicine to cure all kind of diseases including hepatitis b virus, at first i doubted if it was real but decided to give it a try, when i contact this herbal doctor via his email, he prepared a herbal medicine and sent it to me via courier service, when i received this herbal medicine, he gave me step by instructions on how to apply it, when i applied it as instructed, i was cured of this deadly virus within 18-20 days of usage, I am now free from the virus, i was tasted negative. Contact this great herbal doctor via his email drlusandaherbal(at)gmail(dot)com or website on www(dot)drlusandaherbals(dot)weebly(dot)com Goodluck

Fri, October 21, 2016 @ 7:17 AM

62. Laura Parsons wrote:
I was diagnosed with hemochromatosis July 2016 after several years of mis diagnosis I am finally having the therapeutic phlebotomy I had a blood draw yesterday and had the worst headache this was my 5th time, my ferratin levels are over 1700. Does anyone else have horrible headaches after blood draw.

Thu, October 27, 2016 @ 10:21 AM

63. richrad wrote:
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Dr.maduka who cured me from wake erection did the test and I was
confirmed positive, I was so confused because my son is just too young
and I need to be there for him, so I tried all means to make sure I
will be there for him, I saw a blog where Dr. maduka cured
Herpes,hiv,cancer,Emphysema. etc with root and herbs, I contacted him
through his email and i explained my problems to him, and he assured
me of herbal total cure, he did what he has been doing for other
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Sun, November 20, 2016 @ 6:53 AM

64. Margaret Rollinson wrote:
Hi ....for the last 5years....yes 5years I have had muscle pain,I'm on 200mg of maxitram a day,neck stiffness,shoulders spasm,top of back feels knotted most of the time,coldness makes it worse,reaching up or light lifting tightens the top of my body up.I have been anemic for this amount of time,they tell me I'm anemic and I have a underactive thyroid gland.When I have my period I feel like lying in bed for the 2whole days,with exhaustion but the pain has gone,no stiffness,but then my period gets lighter the pain gets much worse.My hands are very itchy at night,they burn terribly,But its this pain I constantly have as if I'm carrying bags of coal on my back,I feel I'm going crazy.......can anyone relate to this pl.

Thu, November 24, 2016 @ 8:11 PM

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