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Maintenance Program for Hemochromatosis

Posted , 11 users are following.

Mrs._Z
Mrs._Z

After reaching the required level of 50 or below, I was told I didn't need to be tested for 3 months.  Was wondering if anyone on the maintenance  

program has had to have more phlebotomies or has it remained a constant at lower than 50?

1 like, 32 replies

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  • zach76568
    zach76568 Mrs._Z

    Posted

    I go about every 4 months for a phlebotomy. Been doing this for over ten years. You want to maintenance it to stay around 50. Everyone is different, but that's what works for me. After about 4 months it starts creeping up. And when I say up , maybe 60-70 ferritin
  • mike80628
    mike80628 Mrs._Z

    Posted

    Hi. Those I know in maintenance now when tested are usually between 80 and 200...and as normal range is up to 3 or 400, then that's fine. Treatment phase gets us right down to 50, and then becoming a blood donor 3,4 or 5 times a year keeps us in that normal range. If a blood test comes back and you're over that level, then just pop to hospital for a couple of extra phlebotomies....it seems that most get by with 3-4 a year.
  • haircrazydaisy
    haircrazydaisy Mrs._Z

    Posted

    Thanks for posting this question. I'm into my 5th month post phlebotomy/venesection. My level was 14 after my last venesection. At 3 months it was only 28 so the consultant said to wait 3 months for another test & I will see her every 6 months from now on unless there's a problem. In the mean time, she has completed a form for me so that I can donate blood. I'm hoping to donate every 3 months & then not have the rise in iron levels.
    • mike80628
      mike80628 haircrazydaisy

      Posted

      That all sounds great. Have you changed your diet in anyway, or do you just eat things in moderation....
    • haircrazydaisy
      haircrazydaisy mike80628

      Posted

      Hi Mike, yes, I have changed my diet. I always found it hard to digest red meat so have almost totally cut it from my diet. Always hated liver so that wasn't a problem. I sometimes have a bit of chicken but always have dairy if I eat meat - maybe a glass of milk with or yoghurt after the meal. I drink copious amounts of tea! I eat fish but, again, make sure I have something dairy with it. So, dairy with meat - if you eat it : tea or tannin rich drinks with iron-rich veg. I eat lots of nuts & blueberries.
    • mike80628
      mike80628 haircrazydaisy

      Posted

      Hi crazy Daisy! Yeah, I'm trying to do the same diet wise...I take calcium tablets as well before a meat meal. I eat loads of canned sardines now...full of calcium. I take IP6 every day...read up on it. An amazing anti oxidant, one of the most powerful, and a natural iron chelator. Have heard good things about it from other hh patients. As well as drinking tea, I also take green tea extract every day. Having a BBQ today...some chicken and sausages....so plenty of milk for me! Then a few beers later! 😃
    • haircrazydaisy
      haircrazydaisy mike80628

      Posted

      Interesting - I'll look up that supplement - not heard of it before. Enjoy the sun! And the BBQ :-)
  • deidre74971
    deidre74971 Mrs._Z

    Posted

    My husband started his treatment 3 years ago and they got him down to 30 and he has check up every 3 months and has not had a phlebotomy for 2 and half years his readings are from 28 to 32 which is great  so everyone is different never heard of this disease before but hearing more and more people have it, I wonder why as sometime there is no signs my husband didn't just had a good doctor
    • mike80628
      mike80628 deidre74971

      Posted

      Wow...that's amazing! It really is such an individual condition. Did your husband really change his diet, or just kept it fairly normal? I've cut out all red meat, eat less, and take calcium and tea with most meals to prevent iron absorption. I still enjoy a wine or beer at the weekend...so still able to enjoy life.
    • deidre74971
      deidre74971 mike80628

      Posted

      no Mike my husband has just carried on as normal ,only thing i don't let him have is liver its not what you eat it's what you produce have you had a genetic test and family
    • mike80628
      mike80628 deidre74971

      Posted

      I've had the test. Homozygous 282y gene. My brother is fine. Having weekly venesections for a year now...level is now under 200. In process of registering as a blood donor with letter from my consultant. Few more venesections at hospital to get me down to 50...Luckily, I've had no organ damage, but have some damage to knuckles in right hand...pain has pretty much gone, but lost a little agility in the fingers. All well generally...starting running again soon...
  • karen2006
    karen2006 Mrs._Z

    Posted

    Hi I have my bloods checked every 3 months. I've been ok for nearly 3 yrs, so am happy. Has crept up slowly to 74 but is ok. I have a yearly check up
  • Mrs._Z
    Mrs._Z

    Posted

    Thanks to everyone for your encouraging posts.......I am scheduled to be tested in June which is my first test since reaching 38.  I too have not had red meat since being diagnosed and have tried to follow a low iron diet.  Once I have more time under my belt, I'm hoping that I can maintain a low level as some of you have stated.
    • karen2006
      karen2006 Mrs._Z

      Posted

      Hi, don't cut out everything with iron in it as you will become anemic. You can have red meat but not every day. I tend to have porridge for my breakfast but will have my favourites which contain a small amount of iron in as a treat. Just be sensible and don't over do it and you will be ok. I haven't had to have treatment in nearly 3 yrs.

  • jwrhn1951
    jwrhn1951 Mrs._Z

    Posted

    I don't worry to much about the numbers it's how I feel that determines how often I have a phlobotomy. For me it works out to every 2 months or so. My hemoglobin stays between 16-17.5 and the hematocrit  around 50, and my Ferritin is between 20-30. 

    I was having the Ferritin done every 3 months but for the last year or two sometimes I'll get around to it every 6 months or more. They just check the hemoglobin when I do a phlebotomy now and so is long as its over 16 I never worry.

    So I would say listen to your body and don't get to concerned about the number as its not the same for everyone.

    • haircrazydaisy
      haircrazydaisy jwrhn1951

      Posted

      Are you in the US, jwrhn? My brother is & I know he has the power to decide when he has a phlebotomy. I think doctors are more controlling in the UK. It all seems to be determined by iron levels rather than how you feel. Anyone in the UK with a different experience??
    • jwrhn1951
      jwrhn1951 haircrazydaisy

      Posted

      Yes I am in the US. So I am unfamiliar with how things are done in the UK. However, I have got to know a number of folks on this board and from what have gathered it is possible to change doctors there.

      Personally I would be very uncomfortable seeing someone who based the frequency of phlebotomies on Ferritin level alone. I think what ever country you are in you must be your own advocate espically with hemochromatosis as so few physicians know very much about it.

      In my case I have organ, joint and vascular damage so the MD's  may be more conserned with keeping the ferretin low but as I say, personally I'd always trust how I feel rather than some number and I'd find a doctor who agreed with that approach.

    • mike80628
      mike80628 jwrhn1951

      Posted

      Hi. It's Mike here in the UK.

      It's pretty much the ferritin level we go by in the UK. Once diagnosed, we have weekly venesections until our level is 50. Then, we become blood donors where we go from 2-6 times a year, some people less often, maybe some more frequently. We pretty much monitor our own ferritin level by seeing our doctor a few times a year to arrange a blood test. If levels are a little high, we pop back to the venesection unit in hospital to have a couple of extra venesections...but normally becoming a blood donor does the trick. I've had weekly venesections for nearly a year now. I started at level 2000! I'm at 200 now. I'll soon finish the weekly treatment, and become a blood donor. Luckily, my only symptom was some arthritis in the right hand...though still stiff, the pain has gone. Organs are all fine.

      Mike.

    • jwrhn1951
      jwrhn1951 mike80628

      Posted

      Hi Mike

      Thanks for the UK info. My Ferritin was around 2000 when I started also. I'm homozygous H63D and they kept telling me there must be something else going on because H63D's are not supposed to load iron. Took a liver biopsy showing NASH and 3+ iron deposition and a brain MRI showing microvascular disease with iron depsition and ultrasounds of the joints showing psuedogout  arthritic deposits and a EKG showing atrial tachycardia for them to start the phlebotomies as they finally came to the conclusion the iron might be killing me, so they hurried up and had me do 2x week for about 4 months then weekly for a couple of months and 6-8 times a year for the past few years. Needless to say I've learned the need to advocate for myself. 

      I've since had nueropsyh testing which suggests  I'm in the early stages of cognative decline which is likely to lead to full blown vascular dementia within 10 years due to the damage caused by the iron build up over the years.

      So I'd suggest that everyone with hemochromatosis must be their own advocate and never let a MD downplay the potential severity and  harm caused by the disease ,.

    • mike80628
      mike80628 jwrhn1951

      Posted

      Hi...wow, that's a lot to take in. I agree with you with being my own advocate. I already feel it's me taking control of my treatment and telling medical staff what I want and need....I'm quite shocked to hear of all your symptoms. I've had a range of scans and tests, and they've all come back clear. I'm glad I had an on the ball doctor who decided to test my ferritin iron after I went in with a painful hand. Had they not tested me, it could have gone on for a few more years, by which time much more serious damage would have been done.

      The medical profession over here needs to be so much more aware of this condition, as so many people are still being diagnosed far too late.

      I hope that now I'm in maintenance phase, I'll be able to keep my levels normal, and go on to live a normal life with no further complications.

    • haircrazydaisy
      haircrazydaisy jwrhn1951

      Posted

      Hi jwrhn,

      Sorry, I had to leave a short reply earlier as had to dash out.  I agree with your comments about having to take control of your own treatment.  The tricky thing in the UK is that the doctors are in control of the purse strings (unless you have private healthcare).  I told my hospital consultant that I felt I may be loading iron again and was made to feel like a hypochondriac - I was told that my iron levels are still low and I can't be loading again, yet.  

      Sorry to hear about all of your problems.  A warning to us all.  

       

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