Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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Gastrointestinal System
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Headaches

cloudone
cloudone

Hi new here


I became ill in 2015 with all sorts of gastrointestinal problems I lost my gallbladder in 2016 while they were in there they biop the liver and found stage 4 iron and also fibrosis and something else . They said in report heavy iron deposits and recommended testing for hemochromatosis. Doctors were reluctant to test for but made them. I was suffering from severe fatigue,headaches,pain in hands,arms,joints,and problems with going to the bathroom. I have HH double mutated genes. I had levels over 1300. They started phlebotomy the end of last year at a 6 week to 7 interval. A few months later increased the frequency to 4 then they increased again to 3 week intervals. I am disabled because of a back injury that was severe so I am screwed together. My numbers are coming down but I still just pass out every now and then about twice or more a week. Have to live on laxatives and the abdominal pain sucks.Now at my phlebotomy my hemoglobin has been on the rise. The doctor is at a lose. 


Loving life at this point!


CuriousAbouttheScience
CuriousAbouttheScience
Sounds like a rough go of it. I’m thinking of you and hoping it improves.
Cap6
Cap6
Just a thought but you may want to be tested for celiac. Gasto, bathroom, tired, pain...... All symptoms.
LizaK
LizaK
Hey guys,
Just been diagnosed yesterday. I have been having cluster headaches for years. Always thought it was migraines, I wonder if they are related to HH.

I havent started treatment yet, still waiting on the doc.
looney1
looney1
Pretty sure you should be tested for porphyria too with those symptoms. It's quite serious and a form of it can be caused by high iron levels. Good luck
cloudone
cloudone
Thank you for all your thoughts. They haven’t tested for anything else yet. My doctor has worked backwards on my phlebotomy from 8 weeks to 3. I am still high and also suffering from short term memory loss. The bad headaches have become less frequent but I still have to use laxatives. Now he is panicking and wants me to see a hematologist. The Red Cross numbers don’t match the labs and now my a1c ,I think is it, is messed up. They just ordered more labs for me . My last one was in October. They Forgot!
Pudding80
Pudding80
cloudone,

Your situation sounds worrying and I am sorry things are so difficult for you.

Are you under the care of a haematologist? The consultant who has helped me the most is the haematologist.

She has overseen my phlebotomy treatment over the last 3 years and my serum ferritin level has gone down incrementally to under 50 and she likes it to stay under 50.

I was diagnosed by a gastroenterologist following a gallbladder scan. When my ALT level returned to normal I was discharged from his care. I hope you continue to see a gastroenterologist if you have ongoing problems with your liver.

I live in London and the treatment here seems to be very good. Some people who post on this site don't seem to have such good care elsewhere in the UK. It seems very unfair that appropriate treatment depends on where you live.

I hope things become more tolerable for you over time.

Christine
cloudone
cloudone
I just got referred to one and she has been trying to get all the records from the gastroenterologist. She seemed concerned that it took so long for it to happen. Everything was done backwards compared to how other countries deal with it. Most of my doctors don’t even know how to deal with it. They were even saying my abdominal problems were not part of the disease. The hematologist said it certainly is a great part of it. So I see her in February toward the end of the month unless they can get me in earlier. She ordered more blood work at a different lab. Now I wait.