Help! Feeling scared about the future
Posted , 7 users are following.
Hello all, I'm new to the forum and am looking for some advice. I am 44 years old, female & was diagnosed with Genetic Haemachromotosis by accident two years ago. I had complained of tiredness to my Rheumatologist (I also have Psoriatic Arthritis) and he thought I may be anaemic- quite the opposite as it turns out! I had no idea this condition existed. I saw my Haematologist & he said that although I had the genetic disorder, I wasn't significantly overloaded & he would see me again after a year. Last year I went, all was still settled & I was left for another year. I went yesterday & was told that my ferritin and transferring iron levels had both gone up and if they rise again next year I will have to start Vinesection . I have followed all the dietary advice, lost a little weight, don't drink alcohol & am feeling so scared about this getting out of control. I gave convinced myself that I am going to get cirrhosis or some other major complication because I have no control over this. I'm terrified about the future & that I won't be there for my kids. Why do they leave things so long between testing? What if my iron gets to dangerous levels before next November?
3 likes, 15 replies
aidan shaziebabes
Posted
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 aidan
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aidan shaziebabes
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shaziebabes aidan
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angela28253 shaziebabes
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shaziebabes angela28253
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angela28253 shaziebabes
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shaziebabes angela28253
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chrissy78668 shaziebabes
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shaziebabes chrissy78668
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megan36105 shaziebabes
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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!
shaziebabes megan36105
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megan36105 shaziebabes
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And no, your levels definitely won't be high if they're leaving you for twelve months at a time. Have you asked for a printout of all of your test results? It might make you feel better if you physically have the proof in front of you- that's what I did.
Flangies megan36105
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megan36105 Flangies
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I took this from the CDC website: Hemochromatosis patients are susceptible to infections with Vibrio vulnificus and Salmonella enteriditis; raw shellfish can contain these bacteria.
I've also heard that what happens is that bacteria feeds in iron-rich environments, which is why people with haemochromatosis are more susceptible than other people.