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Di57
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I have just been diagnosed with Hemochromatosis after several years of trying to find out why I'm so tired along with other problems. I finally went to a GI Dr. that ran the test. I saw a hemotologist today, having a colonoscopy this week, a liver biopsy next week along with an MRI. At least progress is finally being made. I get mixed opinons from Dr.'s as to which of my symptoms are as a result of hemochromatosis. If anyone can tell me about their experience please let me know. Thank you, |
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veejay
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HI i have also just been diagnosed with Haemachromatosis , and have had several blood tests for major diseases, all came back clear, my Dr is puzzled, i have now been referred to gastroenterology, i didn;t know this was connected with HMC as my twin sons were diagnosed 10 years ago,and didn;t go to GI, and were told parents were only carriers, i insisted on a test anyway, which was normal, I went this time for a test for Anaemia, and was shocked to be told it was probably HMC,ALL OTHER TESTS WERE I WAS TOLD NORMAL, NO ORGAN DAMAGE ,NO MAJOR DISEASES, I had a colonoscopy 2 years ago that was normal, i hope i dont have to have another, If you have one DO insist on sedation, i was not sedated enough. Post edited by: veejay, at: 03/16/2008 05:41 |
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rowblay
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I was dealing with the same thing. My P.C.P. had a notion that Hemochromatosis may be a possibility after months of testing and re-testing (orignally had a physical done). I was sent to a Gastroligist, then a Hemotologist for my Ferritin updates. Eventually I dropped them all (because of constant cost of blood tests) and went to National Institute of Health for treatment for free.
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veejay
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Hi, Ihave to go for my results next week, I had a liver biopsy last week which was not half as bad as i expected, it was virtually painless, just a bit uncomfortable, you dont say what age you are, I was told by the dr at the hospital that there are 5 types of HMC,i was told a lot of iron supplements can cause high ferritin, also heavy alcohol intake, i dont drink and dont take iron suuplements either, also if you have iron overload vit c makes it worse,I am lucky really that we have the NHS here i am assuming you are in the US, I hope you are getting it sorted now, i have been seen very quickly here, please keep in touch and keep us updated,regards Jean--PS please feel free to ask me anything else you feel you need to know |
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veejay
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Hi, just a short note to ask if you are any further on with tests etc,? i had a liver biopsy last week, go for resulst next week, you dont say what age you are, I was told i would need blood taken every week until my levels got down to 50, do you know how high yours were? I didnt really have any symptoms as far as i knew, but i came down with bells palsy over a year ago, and i was extremly tired with that, so i didny think there was anything else wrong because after the BP i started to feel less tired, if you need to ask anything else please do, but you may be far ahead of me now if you have already had all those tests, and got your results, best wishes Jean |
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Di57
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Jean, I'm 57 and have hereditary Hemochromatosis with both genes of c282y. I had the biospy and it was painful for me; probably due to the inflammation of my liver. I used to have a drink once or twice a week and that's all but now never. I was told once a week is ok but I don't want to take a chance since my dad died of liver cancer; now we know he must have had the HH since my was inherited. They didn't know much about when he died. I also have not taken iron or vitamin C supplements. By the way, I'm from Louisiana. Thank you for any help you can offer!!! |
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veejay
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but i dont know if it can only come from one side of the family, as i understood it was as i said between parentsHello agan, nice to hear from you so quickly, i haven;t got the results yet of whether mine is genetic or herditary, my twins were diagnosed at about 20 years old, due only to me reading about it in a magazine and recognising the symptoms they had, and they were told it was caused by a faulty gene between their parents, but i asked my gp for test, she wasnt too keen to do it but agreed, it came back clear , the twins dad also asked his gp who refused point blank, as he said there is no way you will have it, however he is now going to ask for the test again, my mothers side ofthe family have lived to a great age most into the 90s and some even to over 100,which i am sure would not be the case if they had it,[ my mother died last year aged 97 i dont know anything about my fathers side as i never knew him, Iwas told that the older you are when you were diagnosed was not as bad as if you were 15 or so,I think it is terrible that routine tests are not done for this, as my boys were told it is often not diagnosed until after death, maybe like your father, Are you having treatment for it / eg; blood taken?what does both genes o282y/ i have not been told yet
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veejay
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SORRY SOME SENTENCES HAVE GOT MIXED UP WITH OTHERS HOPE YOU CAN MAKE SENSE OF IT jean |
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Di57
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My understanding is that if your children have it then both parents had to have at least one gene as a carrier. The twins father must find a Dr. to run the test because they (as I understand) would have genes from both of you. Genetic and hereditary is one in the same. My mother is 85 and active, her mother died at 96 but my mother is a carrier. Yes, I'm having phlebotomies but not pleased with Dr. because she doesn't test me before Phle.'s except for occasionally and that's not good. Dianne |
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veejay
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Hi Dianne, I have been in touch withthe twins father[we have been divorced a long time] to tell him of my situation, as i too think he should be tedted, It was my understanding too, that both parents must carry the gene, but we were told we [parents] would definately not have it if we were carriers, It is all very confusing, My GP cant understand why i am pesenting with this now, Also when i was a lot younger i must admit, [and pregnant] i had to have iron injections for a week, with the possibility of a transfiusion, which i didnt need in the end, but i cant see how you can go from anaemic to iron overload, my older children to a first marriage seem ok, and my daughter has been tested, but so was i when my twins were diagnosed, and i was clear then too, my sons are 36 next month, and have regular blood tests, before having blood taken, So no it isnt right that you are not tested regularly, Iam in touch with another lady on a different forum, and her levels were over 600 and her DR says that is right for her, but she is going to insist on more tests i think,Have you been told anything regarding your mother only being a carrier, or is it possible that she could have been a sufferer too? just wondered if you had been told anything like that,Idont drink alcohol, or take iron, so i am puzzled |
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