I went to see the Practice Nurse for something unrelated and asked in passing the last blood results which I had been told were 'normal' . When I asked for actual numbers I was told that my TSH was 0.01 with a note saying 'Normal for this patient' and my T4 reading was 14.1 The T4 seems low with a suppressed TSH reading and I still have lingering hypo symptoms. My levo dose is 75 mg daily, but she said Doc would be reluctant to increase dose with such a low TSH reading. Any advice would be appreciated.

10 Replies

  • Hi Valjo, do you have another auto-immune illness. My son has Hypopituitarism with Septo-Optic Dysplasia and his TSH is always low because of this. Hope you find the answer. I believe they should always go by your FT3 if this is the case, although they have never done this with my son and his FT3 is 4.5 (3.1 - 6.8) which is a bit low. His temperature and BP are good though.

  • I am hypo following RAI about 12 years ago. I wish to goodness I'd not had it done. Haven't felt 100 per cent since! I handled it much better when I was hyper because I could always tell when my thyroid went into overdrive and sought treatment. A few weeks later I would be back to normal and after a few months medication I was able to come off it until the next time, usually about 2 years later.

  • I had a sub-total thyroidectomy, but also wish I hadn't had to. I was 14 weeks pregnant at the time and things went very bad, so had to have it done quickly.

  • Hello there. I believe it is normal to have a low TSH when you are supplying the body with T4 hormone. The pituitary no longer has to tell the thyroid to make T4 so it stops doing so. This is normal. I have read many anecdotal reports of feeling great on TSH low as near zero!! When I take meds my TSH goes to 0.14 but I feel better as my fT4 and fT3 go up!

    Your ft4 is in the okay range. You wont get a doctor to say any different. I would say optimal is 17-25.

    You do need a more full thyroid profile to find out what is happening.

    Free t4, freet3, TSH, TPO, TgAb, TSH and reverse T3 all done at the same time.

    If your doctor hasnt done these, or wont, then you can order them all from Blue Horizons. Post again if you want support picking the tests.

    It could be that you simply need more levo to push your free t4 up. This would assume you are converting ft4 to ft3 and it is being uptaken by your cells.

    It could be that the ft4 you have is being made into reverset3 instead. This would result in low ft3 and low ft4 and hypo symptoms.

    You say your t4 reading is 14.1 is that free t4 or total t4? You need to free t4.

    Hope thats a little helpful

    PS, if you have a hypo-pituitary then your TSH would have been very low BEFORE you started levo. Was it? Even if it was it doesn't necessarily mean hypopituitary, but could be an indicator!

  • Thank you for advice. I think the NHS lab only does my T4 because my Tsh is so low, so there's no chance of more in depth tests! I am thinking about having a full thyroid profile done, after we've been on holiday, which is next week. As I told j-Bee I'm hypo because of RAI so I don't know how that differs from Hashis etc with regard to reverse T3 etc.

  • valjo18, I've read somewhere (may try to dig it out) that some people who've had Graves permanently have a suppressed TSH - it effectively becomes meaningless. So it's not a reliable thing for your doctor to base his dosing on. Ranges for that FT4 would give you a better idea of whether you're on enough levo - I would suspect not, actually. An FT3 result would be even better.

    Let me see if I can find the article, because then you could perhaps educate your doctor... :)

  • I'm sure I read something easier to understand than this - but it's a start...


  • Not a research paper but hopefully easier to understand!


  • Thank you, very enlightening. Docs think that prescribing levo after RAI is sufficient but it clearly isn't. I think I'll get full thyroid profile done and then approach doc again - for what good it will do!

  • Jazzw , this is interesting . I have always suspected that a lot of my problems stem from RAI .

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