Haemochromatosis maintenance phase
Posted , 3 users are following.
Hi folks. I've just reached my maintenance phase after a year of weekly venesections. My ferritin level was 2000 at the start. It's now 38!!!! On average, how quickly does the level rise? I'm going to have six weekly venesections now as a blood donor. I'll have my level tested every 4-6 weeks initially..just to see how the levels go. I'm hoping to maybe be able to donate blood maybe just 4 times a year eventually. The hospital said I must keep my level below 50. The Haemochromatosis Society say it can be a 100 or less. I feel totally fine. No organ damage. I do have joint pains in my hands..but will have to live with that. Any comments, suggestions welcome. Thanks folks. Mike.
1 like, 5 replies
deidre74971 mike80628
Posted
mike80628 deidre74971
Posted
Wow! That's amazing. Does he eat normally, ie red meat from time to time, drink beer or wine occasionally, or does he have a strict diet now? I'm just amazed that he's not given blood in three years. I'd love to be able to be the same...having said that, even a couple of times a year would be ideal for me. What is his ferritin level now? How much has it gone up since being in maintenance? Is he 282y homozygous....
deidre74971 mike80628
Posted
Yes Mike he eats what he wants red meat etc but not liver or spinich he drinks wine or beer when we go out his ferritin level is 54 which has gone up for the first time in 3 years from 27 but he is on a drug at the moment which has effected him which they are not worried about as they have changed the ballpark from 50 to 100 now and he is full blown C282 he is haveing anothe blood test in 2 weeks time i will let you know how he gets on they say if it is the tablets they would still venesection him as you can't neglect the problem , have you checked any children for the C282, good luck
mike80628 deidre74971
Posted
That's amazing..by the way, spinach is totally fine to eat..the iron can't be absorbed at all! Read up on it..I've forgotten what it contains, but the body can't absorb any iron from it, which makes it a good food to eat, as it prevents iron absorption generally.
I've been too afraid to enjoy red meat in case levels shoot up again....but in time as I monitor my levels I hope to start enjoying some again....I have no kids, but my brother was tested...he's fine. Well, keep me posted, and thanks for the message....Mike.
Mrs._Z mike80628
Posted
Hi Mike, Remember we are all different with this condition. I reached my level of 41 in early February after less than six months of weekly venesections. So I have not done anything since then and was at the Dr. yesterday. My number went to 91 and the Dr. is suggesting just one venesection and be checked in 3 months. If I can build up the courage to become a donor, I may contribute more often, but the Dr. wasn't concerned and said you need to expect it to increase regardless of your diet etc. I also found that the Dr. will have to write a prescription in order to donate blood as some do not want out blood. I also have an order to have a new MRI test that examines the iron deposit in the heart. I have already had the MRI for the liver and other organs which resulted in only some iron absorption in the liver but no damage. Good luck to all and it will be interesting to see how others fair under the maintenance program.