TSH 0.01 - does it matter?

I've been seeing a consultant in endocrinology for the past 9 months. In this time she has upped my dose of levothyroxine form 25mcg to 100 mcg (& I also take 10 mcg T3 at my urging), and my T4 has increased from 9 to 18 and my T3 from 3.4 to 5.5. My TSH has gone from 1.86 to 0.01.

I understand that taking meds will render the TSH value irrelevant, but I'm also concerned that my own system will be permanently reliant on this external source of hormones. I'm concerned I might be taking excessive meds which could lead to post-hyperthyroid central hypothyroidism.

The consultant is herself baffled as to the cause of my hypothyroidism. My bloods suggested a secondary condition but an MRI scan of my brain showed a normal pituitary, and I have no antibodies present. The last letter talks of a possible 'sick euthyroid phenomenon' and that in 6 months to a year I come off all meds. But my understanding is that by this time (if not already) my HTP axis will be permanently suppressed.

I'm feeling much better since being on T4/T3, and even my bowel is operating again (my constipation bothered me equally or more than the insomnia/lethargy/cold/hair-loss etc). My energy levels are normal-enough, my mood stable-enough. I might be tipping the other way - raised heart beat and occasional palpitations. Also, unlike my understanding of a typical hypo, I've never put on weight, am slight/slim and always been cold (temp still below 35) and of anxious/edgy temperament - a typical vata constitution.

So, my question in short is shall I just come off meds? Or reduce them, and if so, by how much? The consultant was away for the summer and her stand-in seemed totally non-plussed by my results, suggesting I reduce them, then changing his mind, then suggesting I come off the T3 as they're so expensive. I came away feeling very much a cog in a machine, a dysfunctioning one at that, so any advice would be much appreciated.

8 Replies

  • If you feel well, I think you should stay as you are.

    'post-hyperthyroid central hypothyroidism', is that a real thing? You were hyper? And now you're hypo? Have you had your antibodies tested? You could have Hashi's.

    Alternatively, have they considered a problem with the hypothalamus, rather than the pituitary?

    If you are hypo, as I see it, you will always be dependant on thyroid hormone from an external source, anyway. Were you hoping to come off them at some point? It's very rare that people can do that. I certainly wouldn't want to try it!

  • Thanks so much for your prompt reply, greygoose. I read about phch in a book called The Thyroid Paradox and it tallied exactly with what my actupuncturist has been telling me for a while, and it makes a kind of sense to me: I had an extremely stressful year before the onset of hypo symptoms, anxious and sleepless 24/7 and lost weight if anything. It was suggested, as I've since read in the book, that it's likely I was hyper, so my thyroid was suppressed to 'help me out', reach homeostasis, rest etc. I don't know how much this makes 'medical' sense - I'm just someone trying to cope with a set of symptoms, reading up on it and being advised whilst battling brain-fog and poor retention - not the best way to do research, but my only way right now!

    And, no, don't think hypothalamus was considered unless it was scanned along with the pituitary (would it show up in same imaging?). I was told my brain was fine. And yes, the consultant repeatedly tells me I should be able to come off as there is no reason for the condition, including no antibodies, auto-immune disease etc.

  • I don't think your body helps you out by making you hyper. That would stress you even more. It usually lowers the T3, by converting more T4 to rT3, to force you to rest.

    I don't know what they see on a scan, because I've never had it done. Sorry.

  • Hi vivo, if you are female, low progesterone is often suggested when having problems. This short video regarding prolactin points this out.

  • thanks Heloise. My prolactin measured normal in may (316mn/L, range 102-496) . Not sue from video whether this means my progesterone/dopamine is therefore normal? Or are these separate tests I can ask for?

  • Oh my goodness, please don't come off medication. I've been the same as you for 45 years......no weight problems and no antibodies . I started with a myxoedema coma.......15 years later I was told by new doctor that as I had no antibodies I should not be taking them and was weaned off without blood results only to be near coma again. I've had good years and bad years and never really felt OK unless on a high dose......so if you feel ok just stay as you are.

  • There are lots of reasons for low thyroid conditions. Read this link from another forum :


    One of these days I intend to buy the book the information comes from!

  • I think your TSH of 0.01 might matter, I believe that is suppressed. I recently saw an endocrinologist who observed that I have osteopenia and said this is worsened (even caused by) suppressed TSH and I believe this is so regardless of whether the TSH is suppressed as a result of too much T3 or too much T4.

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