Anyone else been ok on Levo for years, then it stops working?

After RAI treatment in 1989, I took 150 /175 Levo for 25 years, and felt pretty good, apart from libido being zilch. Then wham in 2014, I felt so ill I was housebound some days. Finally started on T3 in May 2016, and my life has come back !

Has anyone else experienced this? Levo just not working any more? And why would it do this?

16 Replies

  • In a healthy person the thyroid produces T4 and T3. T4 is converted within peripheral tissues and organs of the body into T3 (the active hormone). When the thyroid is destroyed by RAI, or is removed altogether, the thyroid's contribution to the T3 in the body is lost, and so all necessary T3 must be created by conversion from T4.

    If you convert T4 --> T3 well then Levo (which is T4) is an acceptable substitute for a working thyroid. People tend to get less good at conversion as they get older, so in your case your T3 levels probably dropped and you started to feel ill. T3 can give people their lives back.

    There are some people who are never good converters of T4 to T3 and they are the people who are likely to end up on this site.

  • You wouldn't have any articles that I could download regarding conversion issues and in particular relating to age. I'm composing a letter for my GP and I need as much paperwork as I can get to support continuing being prescribed a measly amount of T3.

  • mischa You know, until you asked that question I had never questioned the idea that the thyroid became less efficient at producing T4 and T3 and that conversion worsened as people aged.

    Now I'm beginning to wonder if there is any evidence for it. Have doctors seen mild thyroid issues in thyroid function tests in previously healthy older people and just assumed this was "natural" and "normal" when in fact it was a sign of thyroid dysfunction that needed treating? It wouldn't surprise me if this had happened.

    And in people who have already been diagnosed with thyroid problems, if their T3 lowers is this assumed to be part of the ageing process as well? Or since doctors rarely test Free T3 maybe they have never even noticed if it gets worse?

    So, sorry, but I can't help you with links proving that conversion gets less efficient as people age. (Although I'm not saying that the evidence doesn't exist.)

    Perhaps helvella might know some good links.

    The one thing I can suggest is that you maintain optimal nutrient levels, and if the worst comes to the worst, you could buy your own T3 online and dose yourself how you like. You would need to write a post asking for people to PM you with reliable sources for non-prescription T3.

  • There have been quite a few papers which question TSH and thyroid hormone levels in older people. I can't make up my mind - nor do I have any links to hand.

    Worth looking at PubMed.

  • Thanks helvella. I will search on the internet and see what I can find.

  • Here is a link to PubMed which asked for papers containing the terms "TSH" and "geriatric":

    Returns 102 hits of which at least a few appear relevant.

  • Thank you for getting back to me.

    I know I've seen it somewhere, probably on the internet, that one of the factors of the conversion problem was age related.

    But as you say not enough screening, and in particular, the importance of testing T3.

    Yes, you are quite right as since I've got my vits, etc up to scratch, I am converting a lot better.

    I do buy my own T3 to make up the shortfall of what I am prescribed. I'm beginning to think if it's worth the prescription as T3 that you can buy is very inexpensive compared to NHS T3. It's just that I've become bloody-minded about it. They won't say you're not getting it because it's too expensive but rather, it's harmful to your health and particularly at your age! Which insults your intelligence because as far as I'm concerned, it is a lot more harmful not to have sufficient thyroid medication. I'm still getting a reduced dose on the NHS but I believe it's just a matter of time before they say no more. And I would rather give them a fight before-hand.

    I do have some paperwork that Clutter kindly posted which I will print off and attach to my letter.

  • I felt like this a few years back but my lord tests suggested otherwise. Intact they said I was overmedicated and have reduced my meds I have by hypo for well over twenty years and then some before medicated. I'm pushing for and endo now to see if t3 will work for me.

  • They said I was a bit over medicated, high 4 and extremely low TSH. But I still felt hypo, more and more so, to the point where I was housebound some days.

    Then I checked all my results with ranges over the past few years. The T3 results were always at the bottom or below, so I asked to try T3. Two endos were against it, but one finally said my GP could give me a short trial. Since then I'm way way better.

  • Sounds like your results are like mine but my t3 was 5.2 but I was told on here I could do with some t3 as my ratio was low. I'm going to have to follow you and push for t3. I wish you all the best it's a shame we have to wait so long before we are listened to

  • I took it for about 6 months and it did nothing. I am one of those people who feels best when my t3 is slightly above range but doctors freak out at that.

  • Lol mine too x

  • veryangirl44, I had a few weeks supply from GP, but then he wasn't allowed to prescribe any more. So I've got mine from Greece. Just over 1 euro per box, NHS cost £250 per box. Madness.

    People on this forum are so knowledgeable, I've got a huge amount of good advice here.

    Do you know what ratio is advised for T4 / T3 results?

  • No sorry but on my posts seaside sue told me mine if you go to my previous posts.

  • The price of the t3 is absolutely rediculous. I wish as patients we had more say

  • I got t3 a while back but stopped taking it and I guess that's the same as t4 price wise it's silly. You can walk into a chemist in Greece and buy them over the counter. It's the pharma company here in the UK ripping the nhs off though.

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