TSH supressed following T3 treatment

[patchworkcat]

Hi I have been hypothyroid for over 6 years , since I was 19. After 3 years of levothyroxine not really helping and recurrent increases of dose I bought T3 from Mexico. Having had a break in supply twice and not feeling very happy not having the medical profession backing my action and importing my T3, I decided to go back onto Levothyroxine and try and get T3 on the NHS. My blood results after 6 months of T4 are TSH 0.01 ( 0.2-4) and T4 20.5 (11- 22.6). The consultant wants to decrease my Levo even though I feel awful, because my TSH is so low, but it has not increased since I came off T3. It is possible that TSH sometimes never recovers as she said it wasn't possible? Thanks everyone

[diogenes Remembering]

Im a word yes! If you have been for a while on a treatment that has suppressed your TSH, and you change treatment, your TSH may take months, years or not change at all to revert to "normality" (ridiculous word). The phenomenon is well known eg when coming down from hyperthyroidism. It's called "hysteresis" in scientific terms, that is a delay of unknown length before the measurement changes.

[Hidden]

I think you need to see a helpfull endo who will give you a private script to cash in in Germany.

[radd]

patchworkcat,

Yes, I was on Levo for four years with a very low TSH, trying to unsuccessfully feel better. My TSH has never recovered and I read this to be because of a down regulation, meaning less thryoid hormone would be required to raise it than the amount that can achieve well-being.

Many on the forum suffer this and require very low or suppressed TSH to function well. Medicating T3 is also known to produce low FT4 results.

[SlowDragon Administrator]

Just testing tsh and FT4 is completely inadequate

Endocrinologist should be testing vitamins, FT3 and antibodies....she's may be only a Diabetes specialist

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or especially after T3 is withdrawn

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

We ALWAYS recommend getting full Thyroid and vitamin testing BEFORE seeing any specialist, but especially if paying to see one privately

Roughly where in the UK are you?

Email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3

thyroiduk.org.uk/tuk/About_...

20% of hypothyroid patients can not manage on Levothyroxine alone

[Judithdalston in reply to SlowDragon]

Slowdragon, see that you have said ‘low vitamins levels common... especially after T3 withdrawn’. Can you tell me why etc? Is this true of complete removal of T3 or equally true if say dose goes down from 75 mcg T3 only to combo with levo. of 25 mcg T3?

[patchworkcat in reply to SlowDragon]

Sorry for late answer, yes always leave at least 24 hours before testing. No her speciality is not thyroid, but I have stayed with her as she said at first visit that she would consider a T3 NHS script and I know these are rarer than hen's teeth!

[SlowDragon Administrator in reply to patchworkcat]

So you need to get FULL Thyroid and vitamin testing privately

Just testing TSH is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get results and ranges

TSH 0.01 and FT4 at 20 does not show over medication, it only shows inadequate testing

[Hidden]

Just to comment on your question about the TSH never returning to "normal" (in range): yes, I believe it's possible. At one point, I was so fed up with doctors urging me to go back on T4 only (I've been on NDT for the past eight years) in order for my TSH to "normalise". I just decided to go back on T4 only and take a dose that used to keep my TSH well in range (around 1.5): 150 mcg daily. But eight weeks off NDT did nothing to normalise my TSH which came back as suppressed as ever: <0.01. So I just said to myself "the h--- with it" and went back on NDT. I'll never let doctors bully me into going back on T4 only ever again.

Of course, most doctors freak out at the sight of a suppressed TSH, and if they then hear that you take something non-conventional such as NDT, they'll immediately tell you to go back on T4 only.

But I don't understand why I need a measurable TSH. As far as I know, the TSH's role is to stimulate the thyroid gland to produce enough hormones to maintain normal metabolism. My gland is damaged and cannot respond properly to the TSH's signals anyway. I'll always get the hormones I need from NDT, not from my own gland, so I fail to see how the lack of TSH can harm me in any way...unless the TSH has other, less-known roles in the body...?

Anyway, I have stopped worrying about my TSH, and go by free Ts only and symptoms to decide if I need an increase on decrease in dosage.