25 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

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