Does anyone here also have hypothyroidism and high iron / hemochromatosis?

I am expecting to have to iron removed via blood letting once a week and wanted some advice regarding remaining stable on my thyroid meds.

I take Levothyroxine 50 mcg daily and Liothyronine 20 mcg daily.

Do you have any advice on supplements that will help me to recover haemoglobin levels and stay healthy?

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16 Replies

  • Hello Faith'

    I may have heamochromatosis - very high iron count and recently diagnosed with hypo, but not via the nhs. I am taking Erfa (NDT) and would not take Levo when there is a natural and tried and tested alternative available. There is a website which is really into haemochromatosis - just google it and see x

  • Hi Sheenah,

    Thanks for your reply.

    Hypo can be a symptom of hemochromatosis, as I understand it. Good for you for going down the natural route re your thyroid.

    I've seen the websites and forums re hemo but wanted to see if anyone here has it due to wanting more specific thyroid advice whilst having phlebotomy. Fingers crossed that there is someone here that has experience.

  • My iron levels were very high when I first started having thyroid problems. I was tested for hemochromatosis but didn't have it. Then I had to have half my thyroid removed & went borderline hypothyroid & my iron levels went dangerously low & I now have to take high iron tablets everyday. So, make sure you are tested regularly to make sure your levels of iron remain constant.

  • Thanks for replying Jillyana. It's interesting what you've said and it makes me wonder how the iron came out of your body as there isn't any way for the body to get it out without blood letting or chealation. Perhaps it was down to being a women if you know what I mean. Did your Dr have any explanation for it?

  • No, my doctor was puzzled. I think it was my body not absorbing iron due to the hypo issues & it just used up my supplies. I'm past the menopause, so that isn't the problem. My ferritin count went right down to 8 a few years ago & even though I take daily iron supplements, the most I manage to reach is 30.

  • That's fascinating! Have you seen any specialists for it? You may have an underlying condition. Your Dr is giving you iron pills to treat the symptoms, but there is a reason your body is losing iron. If you're past your menopause then there isn't any way out for the iron unless you have internal bleeding or are perhaps a top athlete. I would be really interested to know what happens if you decide to push to see a specialist about it and have an investigation. Your stools are not black and tarry are they?

  • I do walk for miles each week, so would lose iron that way. My ferritin reached over 300 when I had too much iron. It's now around 30 but the pins & needles have stopped since I've reached over 8. If I don't absorb iron in the way I don't absorb calcium, then it's bound to deplete over time.

  • Are you sure that's the reason? In my understanding, walking would not deplete iron stores - how did you come to that idea? I walk for miles and miles too and have high iron. It's my understanding that iron does not deplete hardly at all under normal conditions, only via bleeding and athletic exercise regimes.

    Do you take your iron sups well away from food (2 hours before and 2 hours after eating) as the other minerals compete with it, and away from calcium, as calcium (milk etc) blocks iron absorption? Do you put lemon on your food to enhance iron absorption? Cook meats with acidic foods, like tomatoes and vinegar to aid iron absorption?

    I'm so interested in what's happening with you, I wish I could find out to see if I can copy your regime, maybe I could lose a little too.

    Does it affect you anaemia wise?

    Anyway, I guess if you feel well and don't want to have an expert look into it, the number one thing to do is to avoid stress and so if you're chilled about it then that's brilliant.

  • Yes, I do all those things to absorb iron. I read somewhere that walking for miles on concrete will deplete iron levels. We used to live in an old house which had the old style water pipes, so maybe that increased my iron levels. No, I'm not anaemic, just low in ferritin. My GP isn't bothered by my condition, it's something I keep a close eye on, as I don't want my hair coming out in handfuls again as it did when I was very low in iron.

  • Thanks for getting back to me jillyana.

    It's good to hear that you are not anaemic and so your iron levels must be ok, just your storage is not so good.

    On the bright side, you're at less risk of infection and cancer, so that's wonderful.

  • I think you should consider the timing of your T3 dose. If you take it before the blood-letting you will lose some of it so may feel washed out and tired before it's time for your next dose. Also you may find some of your other Vitamins become depleted, so it might be worth taking a multivitamin (without iron!).

  • Thanks eeng, I will do that. What about T4, do you think I should up my dose before or after? Any ideas?

  • You should limit your vitamin intake as it causes higher iron absorption.

  • There are at least 13 vitamins for humans.

    I think you could be very helpful by telling us which ones, and why. I can't believe that they all do - unless simply being replete with all vitamins helps with absorption over being deficient?

  • My last 2 blood tests were showing high but not high enough for me to have treatment .MY Gp said they will be keeping an eye on me . I have been Hypothyroid for over 10 years ,last TSH was 0.37 . Good luck with your treatment Faith !

  • Hi motherelle,

    How do you feel about your Dr sitting and watching? I understand that high iron is not a beneficial state to be in, even slightly high. It causes oxidation in the body and slowly causes tissue damage and ageing - age related diseases like alzhiemer's and dementia, but earlier than usual. Not to mention other problems like rheumatoid arthritis, and so on.

    If your ferritin is over 200 (I think that's the earliest they will treat you) along with the other iron blood markers, I believe you are at a level for blood letting and should insist on seeing a haematologist. You can also ask for a genetic test to find out if you have hemochromatosis.

    Are you still having high iron foods?

    Have you thought about donating blood to lower the iron levels. Most people feel great after getting rid of some of the iron.

    Also, having metal toxicity hinders the conversion of levothyroxine t4 to t3, so your iron levels may be a contributor to your thyroid problems.

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