How long until TSH comes back up and some other academic questions

Hi, could someone please help me by answering a few more questions:

1. Having had my t3 stolen by my GP 6 weeks ago how long will it take my for bloods to start showing hypo problems again, TSH stop being supressed etc? I want to get it tested before self medicating as I can feel myself getting iller and iller, but want to make sure my GP can't argue I'm fine on no t3 and 50mcg less of thyroxine. Will it be too soon to take bloods this week?

2. How much t3 does the body actually need and since it has a half life issue should the dose ideally be split. I was on 20mcg, but because of my M.E and people's suggestions that more thyroxine will resolve my M.E (I wish!) I am considering self medicating with more t3 than I was on before.

3. Is there any point taking t4? If your body isn't converting, hence the need for t3 what is the purpose of taking t4?

4. Does ones TSH every stop of its own accord, does anyone ever naturally stop producing TSH, hence stop stimulating thyroid production.

5. My voice has gone a bit husky and my neck feels very solid where the thyroid gland is, is this just psychosomatic induced paranoia on my part or is there any evidence that this is an indicator of my thyroid struggling now the wicked witch has stolen my medication (no disrespect to good witches meant!).

Anyone who can chip in or answer all these questions please do, all help gratefully received.

Thank you

11 Replies

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  • Sulamaye,

    1.The fact that you are having hypo symptoms indicates your TSH has risen because your FT3 has dropped. Definitely get a thyroid test this week.

    2. I was prescribed 3 x 20mcg T3 as a suppressive dose post thyroidectomy. FT3 will ideally be in the top 75% of range although some people like it to be slightly above range. Most doctors freak if it's over and attempt to reduce meds. On T4/T3 combination I was recommended to split dose when I increased above 20mcg T3. It is individual and personal however, with many preferring to take T3 in one dose. I didn't notice any difference.

    3. I couldn't tolerate T4 only but do well on T4/T3 combination and prefer it to T3 only. I like the security of having a T4 store to draw on if I'm unable to take T3 for any reason as I'm totally dependent on oral hormone.

    4. People with hypothalmic or pituitary dysfunction may have impaired or no TSH. TSH set point doesn't always recover in patients who were hyperthyroid or whose TSH has been suppressed long term. My TSH rose to 107.5 when I stopped thyroid meds for 4 weeks and was 0.16 4 weeks later on 100mcg T4+25mcg T3.

    5. I doubt it's psychosomatic induced paranoia. Your thyroid gland swells to attempt to produce the T3 your body needs now the wicked witch has stolen your hormone replacement.

  • Thanks for your comprehensive reply clutter I really appreciate it, will be booking my bloods come Monday morning and look forward to self medicating soon until I can either get a referral to an intelligent endo or find myself a new witch!

  • Research your endo carefully before asking for a referral, Sulamaye. There are a lot of frogs out there.

    email louise.warvill@thyroiduk.org.uk and ask for recommended endos in your area. You can post a question with the name of the prospective endo and ask for comments via private messages.

  • Thanks I've had one suggested by pm here, but he's not in my area, 60 miles away, was also told not to name him in post so is it ok to do so as long as opinions PM'd. I will email Louise too to see if anyone sympathetic nearer.

  • Yes, that's fine, Sulamaye. It's also ok to post asking for recommendations in your area as long as replies are via PMs/

  • I take my dose of T3 once a day and am well.

    This is a helpful link which you may not have seen before:-

    web.archive.org/web/2010103...

  • You are already in dire need of thyroid meds ...ie T3

    It only takes hours or days to leave the body and theres no point taking T4 since if you cant convert it you will simply make reverse T3 which labs tests on NHS do not differentiate

    Theres ample research that when on adequate T3 or NDT the TSH can easily be undetechtable

    Its the most basic biochemical fact

    T3 satisfies the pituarity to thyroid feedback loop and shuts down production of TSH

  • I would say there's absolutely no point in taking T4 if you can't convert it. I'm on T3 only, couldn't take any form of T4, feel much better without it.

    I take my T3 - 100 mcg - once a day, at night, sublingually, and I'm fine with that. It doesn't stop me sleeping and I don't have any moments when I feel it's lacking.

    How much one should take is a very individual thing. There are no hard an fast rules, don't care what anybody says! Ours T3 needs depend on so many things. I think I need quite a high dose because I was untreated hypo for 50 years, and very undertreated for six more years. But I have no scientific proof of that. It's a question of feeling.

    If I were you, I would start self-treating now, never mind waiting for a blood test! You know you need it because you feel worse since you stopped it. The basis of thyroid hormone treatment is to increase the dose until the patient feels well! Never mind the blood tests!

    Hugs, Grey

  • Thank you, but the prob is if my GP gets a tsh suppressed reading I'll never have a hope of arguing for my liothyroinine sodium back, she needs to see that what she's put me on is crap. Only a few days more. It's very hard with the M.e in the mix too to know what's what, my health has plummeted and some of that is no doubt lack of meds but my health can do a u turn for no reason as well and go up for no reason too. It's all very confusing.

  • That sounds like Hashi's!

    I'm pretty sure you're going to find that your m.e. is actually a hypo symptom, not a seperate disease. It's a diagnosis doctors tend to hand out when they can't be a***d to find out what's really wrong - like, you aren't on enough thyroid meds!

    Hugs, Grey

  • Yeah, I can hope that's it, but anyway what hope have I when they cut what I am ? Ahhhhhhhh!!!!!

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