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

15 Replies

  • 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

    • Posted

      thanks so much aidan, you seem to be really well informed. It is reassuring to think that my levels cannot raise dangerously high within twelve months but I feel a bit like a time bomb - does that make sense? I too get very tired and struggle to continue to work but obviously I want to just get on with life. i aslo have two children and have to be on the go all the time. I am a very anxious person, also have had depression several times and it seems this also could be compounded by iron overload. Ive been looking at specific iron reducing foods this morning and I am going to be adding certain things to my diet to see if they make a difference as well as drinking lots more green tea! I have an excercise bike so im going to dust it off and have a go. thanks very much for your response and good luck to you 
  • Posted

    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.
    • Posted

      i will, im seeing GP next week. I read about the vitamin c thing this morning along with lots of other strange facts about this condition. Apparently Turmeric is good?... Depression stinks!!. Hope you are feeling better soon 
  • Posted

    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.
    • Posted

      My goodness, it must be a terrible time for you, waiting for a liver transplant for your husband. I was ok yesterday...I just thought well, if they were worried, they'd start venesection straight away, not leave it another twelve months, but as is so often the case, the more I've thought about it, the more anxious I have become. I'm a bit cut off from people at the moment as I'm off work after having had knee surgery so all this time to myself is allowing me more worry time. Any way, I can't believe that this condition isn't more well known. I really hope your husband gets his transplant... I suppose it's like asking how long is a piece of string ? All the very best to you & your family and thank you for your advice 
    • Posted

      I thought the same thing, how could this have gone unnoticed for so long and why isn't ferritin testing done in a regular blood work up annually? By the way, we are in the US, I forget most people on this post are from across the pond! It is just so wonderful that we have the internet to bring us together. We are taking things one day at a time and counting our blessings. Having a support group will help with the depression, I have my mother in law who is going through this as well for support. She has suffered for many years with out knowing the cause. She has diabetes related to HH and she had a difficult time with phlebs so they put a port in her chest that goes to her heart. I am always listening if you need to talk. I got a book, the hemochromatosis cook book, and it has several tips for food combinations. I found it very informative.
    • Posted

      Thanks angela28253, it is good to know that none of us are alone in dealing with this condition. Ive told my family & I've told a few friends but they don't understand how worried I am. Luckily my sister has been tested & is clear but my ex has been found to be a carrier so my kids may possibly have inherited it. I feel pretty lousy about that. Anyway, I'm on a mission to do everything I can to keep things under control but if I need venesection I'll just have to go with it. Sounds like your mother in law is having a tough time as well. I've seen that cookbook advertised and I might ask someone to buy it for me for Christmas. Thanks again 
  • Posted

    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

     

    • Posted

      Thank you chrissy78668. My mind is running away with me I think. Need to keep things in perspective x
  • Posted

    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!

     

    • Posted

      thanks so much for your reassurance and Im really trying to keep things in perspective. I suppose my levels cant be that high if theyre leaving me for twelve months. Have you adjusted your diet at all? 
    • Posted

      Other than the obvious (no raw shellfish, don't go overboard on red meat, no iron or vitamin c supplements) no, I haven't changed my diet at all. I was told that I didn't need too, actually, by both of my specialists that I've now seen. They both told me that there wasn't much of a point considering how slowly the extra iron is absorbed through my body. Plus they said that they wouldn't want me to deprive myself of any nutrients that I might need.

      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.

    • Posted

      Megan when you say raw shellfish what are you talking about?
    • Posted

      I mean things like raw oysters or shrimp, stuff like that. (Although to be honest I also avoid sushi if it contains fish that hasn't been cooked just to be on the safe side because I'm an anxious person).

      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.

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