Ferritin

Hi, I have managed to get my ferritin up to 130 and Tsh 0.44 and am starting to feel better (If anything at times a bit over replaced).

Gp hasn't said to stop the iron - it's gone up very quickly from 55 in dec, 80 in March and 130 now. 400 mg a day. I've only recently stopped getting restless leg symptoms. But clearly don't want to go over in iron!

What would you do? I've been told to keep taking the iron. Maybe test in 3 months?

12 Replies

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  • Thank you for posting, v v v interesting. At what level do you think the RLS stopped? How long did you have it for?

    I don't think that there's very clear science on this yet. You clearly have managed to get your iron up to a point where there is enough in your system for your brain fluid (which I read gets iron last) to get enough across the BBB. Fantastic result. As you probably know, in the UK they stop the supplements once you are over a ferritin of 50 or 60. But Johns Hopkins recommends going on till you get much higher than that, from memory 110, but it's on their site if you check, and your experience suggests JH is right - as I would expect.

    Definitely you should test in three months, whatever you do, but do you think, given that 130 is quite high, you could try just eating lots of iron rich foods (ie meat) and go back on the pills in three months if the test shows it has dropped, or earlier if your RLS is returning? Or halve the dose?

    What's your own instinct? I would say, but I warn you this may be crazy, that if your body is reluctant to swallow the pill when you sniff it, you should definitely stop. If you sniff it and your body goes "yey!" then swallow. Your body knows a lot more than science does at the moment.

  • Hi, I'm not sure, I've got a lot of muscle damage so feel the rls is linked to the recovery of this in my case.

    I lost muscle due to issues with thyroxine, possibly being on sertaline and just carrying on through huge pain with a small child! The rls started badly when periods restarted, they were very heavy, 2 years after baby (I was bf). But of already been very de conditioned and apparently have hypermobility syndrome which gp thinks means collagen can be affected more?! But tbh I think it's all iron and thyroid and pregnancy/ period hormones.

    I think it's only this last period so at this level of 130 I think rls has stopped; it was triggered by alcohol at times and I had several drinks on Monday for the first time in a couple of years and coped, fatigue wise and rls wise.

    But it bothers me my aunt had heamachomatosis and my levels were never particulay low but I had bad symptoms!

    VERY good point re pills and feeling sick - I stopped taking multi vit pills yonks ago as started puking them up. I'm not getting that at all with these. Gp seems to say stay on them....

    I'll prob check in 3 months.

  • This is confusing as they're obviously thinking I need to stay on it OVER 90 - unless they think it's all psychosomatic?!?!

    I've found it all very distressing as I've been so disabled and the numbers don't make sense to the symptoms ie you'd expect much lower results.

  • I mean - keep me happy with the iron as if it's a placebo?!

  • Periods were heavy and you'd just had a baby - I've read a lot of the research on RLS because my son has it badly, his ferritin was below limit - your case would fit perfectly with the research. Autopsy studies and imaging, the kinds of illnesses linked to RLS - they all point to low brain iron being the cause. And that's what Johns Hopkins says too. Thanks so much for that info, You show some people may have to go to serum ferritin 130 before it alters - very, very interesting.

    The alcohol thing you mention is interesting too.

    Hypermobility - another area where science has no idea what the cause is. Vitamin D deficiency in early childhood I might guess could be linked in. My son was hypermobile in childhood but has lost that now - there's clearly a lot of interlinked deficiencies and avalanche effects...

    Congratulations on beating RLS.

  • I do think being on a bit too much thyroxine may have interplayed and I don't know what effect being on an ssri had, but the rls didn't go until the iron was up - thyroxine right at same time.

    Do you have links to john Hopkins and brain blood levels?

    It was interesting that I had very foggy head when it was at its lowest for me.

  • SSRIs should not be prescribed to someone with RLS, makes it worse. I hope your dr took you off it the moment you mentioned the RLS.

    Johns Hopkins on RLS and iron... this whole site is v g I think

    hopkinsmedicine.org/neurolo...

    Treatment with iron is here

    hopkinsmedicine.org/neurolo...

    You will see their goal is to get ferritin above 100 (much higher than in the UK - they will be right.)

  • Hi, I didn't have rls before the ssri, just recovering from low thyroid and I now know spd/ hypermobility pain and ferritin of 50 which I now know isn't good for me personally. Yes we started coming off when the muscle stuff got bad.

    Thanks got links, I found them through Google and found it very helpful. And interesting too.

  • Interestingly I feel less hypermobile as I'm gaining muscle strength and mass. Which is the treatment for hypermobility in joints etc really (physio etc). I also started taking extra vit d and calcium, vit c to help iron and just berrocca for the b vits.

  • Haggisplant, Ferritin half way through range is optimal but it won't hurt if you are higher in range. Perhaps reduce the dose or amount of tablets you take but do retest in 3 months.

    Improved ferritin has probably improved absorption of Levothyroxine. If you feel over replaced reduce dose slightly, 12.5mcg daily or 100mcg a week.

  • Thanks clutter, it does seem to have had a boosting effect, thyroid wise, probably supports conversion?

  • sciencedirect.com/science/a...

    is one of the brain imaging studies - there's a lot more on pubmed on this.

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