Help! Feeling scared about the future

I have haemochromatosis as well. My ferritin levels are reasonably low. Initially they were a bit high but after a year of venesections, they were down to a reasonable level. I then had about 18 months before they rose significantly again this year. After a few venesections, the ferritin levels were back down to a reasonable level. However, the last year has seen me become tired to the point that I need to have a sleep for an hour to overcome the fatigue. I have tried to reduce the sleeping time but need it. If I try to fight through the fatigue, its like running a marathon for that hour or two that it takes. Unfortunately, taking a sleep at 7pm is no longer an option for me. I also have two boys with autism and this is challenging. I get up at 7.30am, I get the boys dressed, fed, washed and ready for school, I go to work, I come home and spend from then to at least 11pm  trying to accomodate their needs and clearing up after them. Last night it was 12.20am when I got finished - when I could relax. It is so tiring and when I mention it to people, they either dont believe me, dont accept that I am fatigued, dont recognise autism or else they just shrug and dont care anyway. I include medical professionals in this. The only thing that I do that sometimes works is vigorous exercise. I have an exercise bike and use it for about 18 minutes. I also load up on caffeine to try to stay awake. People have asked me to check my vitamin B12 levels but they are okay. That might be worth checking out. Also, someone has suggested taking guarana. I hope this helps. Also, the British Haemochromatosis Society have a Facebook page and its good for information and moral support:

http://haemochromatosis.org.uk/

My understanding is that iron levels rise slowly. Its not that your ferritin rises from 50 to a catastrophic level like 2000 in the space of a few months or even a few years. I could be wrong about that. If your ferritin levels are around 50-100, I am told that it is unlikely that they will rise significantly in a year. I suspect they might rise to 500 if you are unlucky. From then point of view of reaching an iron overload level that causes damage to the liver and other organs, I am told that levels spiking at around 500 will not lead to that. Ferritin levels need to be much much higher and be at that level for a considerable time to cause the liver damage etc. Thats my understanding. I may be wrong - please ask your GP. I presume that it is the organ damage that most worries you. As regards the fatigue, it would seem that vigorous exercise works for me a bit. As does caffeine.

I wish you the very best

Aidan Kelly

Shaziebabes, just get it confirmed with a gp that your iron levels are unlikely to rise dramatically to dangerous levels in a short space of time. Vitamic C apparently also speeds up iron absorption. As for depression - I have been dealing with it for about 3 years now.

Hey there, my husband has HH and at the time of diagnosis his ferritin was 4053. He has had several symptoms related to the overload. Depression, anxiety, arthritis, cirrhosis, night sweats, among others. He has been having weekly phlebotomies for 18 months and his ferritin is down to 650. His mother and brother also have HH. Organ damage begins when ferritin levels get above 1000. His brother was at 1100 at the time of his diagnosis and he has no organ damage. I wouldn't worry as it takes about 3 months for levels to rise more than 100 and a phlebotomy can drop it by 50 to 100 each time. Stay away from iron and vitamin c and drink tea, coffee or milk with meals to reduce iron absorption. Take b12 and get extra rest. My husband has stage 4 cirrhosis and is in the process of getting on the waiting list for a liver transplant. He is 38 years old. Feel free to ask anything you would like. Take care.

Hi you sound really stressed please don't be once they get it under control you will be fine....a best friend of mine her daughter has it when the iron is up they take a pint from her...other than that she lives a full and happy life hope this helps chrissy

 

I should start out by saying that when I was diagnosed I was 21 years old and my ferritin level was only at about 600 so this might be a completely different scenario than yours -- but I recently moved and the new hematologist that I saw gave me a really awesome prognosis. Mine was caught very early and the venesections/phlebomoties that I had made my levels down to under 50. The last blood test I had was back in June and at that time my ferritin level was only at 48 (before that I had a test in March and it was at 40). The hemotologist told me that he suspects that because of my age and because I will be menstruating until I'm about 50, and with the speed that the iron is absorbed in the body, I may not even need venesections until I start menopause.

The reason for that is because of how slowly the iron is pulled from my blood and deposited elsewhere throughout the body. If you have been de-ironed to a reasonable level there is no way in hell that it could climb to a dangerous amount within 12 months. DON'T WORRY. I understand why you would be anxious about it, however, as I'm an anxious person myself, but try your hardest not to. I'm sure your case must be similar to mine (in terms of your levels) since your doctor is doing checkups so infrequently. It's been caught and it will continue to be dealt with as need be and that's all you need to concern yourself with.

You have to remember that it took literally YEARS for the ferritin to climb to the level that it was. For me, it took 21 years to climb to 600. So don't worry!