How quickly will my TSH rise when stopping T3?

Saw the Endo at my local hospital yesterday.

Current status/previous history:

Previous Graves, RAI 2006.

Hypo blood results from May 2014. Private BH test Feb 15, self treating after GP refused to prescribe Levo. Started with Thyroid-S, moved to T3.

Current dosage 50mcg once a day (nightime) and adhoc extra 25 mcg once or twice a week.

Nhs Endo wants T3 stopped and blood test done next Wednesday, with phone consult next Friday morning.

She will not use Jan 2015 GP blood test results to confirm hypo status, but is using GP results from June when T3 was 9.90 (3.8-6.8) and wants to see baseline reading before deciding what to do next....

I assume my tsh will not rise to over 4.6 by Wednesday, am I right in thinking it could take months to rise?

Exasperated don't even begin to describe how I feel.

8 Replies

  • I'm not clear on why you are seeing an endocrinologist. You are self-treating so why do you have to do what your endo demands and what were you hoping to achieve by seeing one? That question sounds a bit nasty but it isn't intended to - I'm genuinely curious!

    I self-treat. I knew I would never agree with my GP on thyroid treatment so I told her that I would do my own tests, treat myself, and I didn't want to be tested by the NHS. My GP was fine with that, and my thyroid never gets mentioned now.

  • Oh, and the question you asked...

    I gave up thyroid meds last year for several months. My TSH never rose to anywhere near what it was before I started treating myself despite being off meds for about three or four months.

  • Not nasty at all! Very Valid. Please know I thought she (the endo) could engage in some wool pulling, til she realised I knew what I was talking about.

    After my last private BH blood test showed raised antibodies, I saw the GP and asked to be referred to an Endo. I was also suffering from leakage from my breasts and wanted it checked out because the women on my father's side of the family have had pituitary tumors, thyroid issues and fibroids resulting in 3 aunts having to have hysterectomies. ( I have a fibroid too) It could all be relatedm then again it couldn't, so I wanted to speak to an Endo who could help with testing just to make sure there isn't another reason why I am Hypo. Both my Grandmothers have had Thyroid issues, including one with Thyroid Cancer.

    Don't get me wrong I am happy to self treat, but at the same time if my hypo is caused by something else, maybe it's good to be seen by the hospital and have those type of things ruled out.

    She (Endo) frustrated me greatly. But I never let her get me, she said at one point I can see you are distressed, I disagreed. She really wouldn't want to see me distressed, I said I was frustrated and wanted answers.

    She said I was negative for Addison's, who knows when that test was performed????

    And from your other post, I think to be honest I already knew that my TSH will not rise in 6 days. The woman is a fruit loop. Gav me some ficticious crap about how T3 is never prescribed by the NHS, the the DIO2 gene is a misnomer and that everyone converts T4 to T3.....I'm lucky you see, being blonde, I can tilt my head to one side and look dumb with utter incredulity written all over my face suggesting what tripe you just wasted your breathe on doesn't compute with me.

    What I did find very interesting, if a little scary is that based on the MRI done Summer 2014, I could see the letter, and I'm good at reading upside down, so i start reading and then I turn my notes round. I have a large lesion on my liver and a cyst on my ovary, I say to her why hasn't anyone told me about this, she said most people have them it's nothing to worry about.

    I can't even begin to fathom how long it would take to get TSH back to over limit so she can take the treatment further, I wouldn't function at all.

    Thank you for your post Humanbean, much appreciated and validates what I suspected :-)

  • The Blood tests to be done next wednesday are: (for my records as the form will go to the blood lab)

    Vit D







    Free T3

    LH & TSH

    Monomeric Prolactin



    Thyroid Function (TFT)

  • KT304, T3 has a shortlife of 3.5 days after last dose. I don't think 3.5 days is long enough for a baseline TSH result. Thyroidectomised Ca patients are taken off T3 for 2 weeks prior to RAI to allow TSH to rise >30.

    NHS do prescribe T3. I've been prescribed T3 only and have been prescribed T3+T4 for 22 months. Some CCGs have prohibited prescription of T3.

  • Hi Clutter, thanks for responding, I took my last T3 dose of 50mcg Thursday 12th Nov 10pm, so 5.5 days? Nowhere near 2 weeks :-(

    Edit to add: Not sure what CCG my local hospital falls under....

  • KT304, You don't need 2 weeks, 5.5 days should be enough to see some upward movement in TSH but not necessarily baseline.

  • Thanks Clutter, understood.

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