Question for you 🙏

[SarahJane1471]

Just a thought I’ve been having (dangerous I know 😎) . My TSH is underrange and FT3/4 are still low in range despite 125mcgs of Levo. Conversion is good. Vits are optimal.

If my pituitary isn’t “calling” my thyroid to work at all because Levo is replacing my FT4. Does that mean if I reduce my Levo and therefore raise my TSH a little to start calling my thyroid to work, that it will start producing T4 alongside the Levo?

I don’t have Hashi. But I still feel utterly sh.t. !

I’ve tried the progesterone route to see if that will help get my thyroid working again but that just made me more anxious 😬. So I stopped that.

Tried vitamins. Nada 👎.

Feeling like I’m running out of options.

[PurpleNails Administrator]

Presumably you started levothyroxine because the thyroid didn’t respond to the TSH signal.

Has your TSH alway been normal / low?  Do you have central hypothyroidism? 

Taking external replacement reduces the signal & therefore the requirement for thyroid to be stimulated (the replacement - “replaces” hormone doesn’t top them up)

Unfortunately it not possible to tell the feedback mechanism how it should be responding the TSH behaves all by itself & doesn’t often doesn’t behave as it should. 

Sometimes nutrients lower TSH - sometimes previously being abnormal causes TSH to be sluggish.  HPT axis becoming down regulation after period of hyperthyroidism is well known.  My TSH has been 0.01 for nearly a decade,  never seen a normal reading in my record. Doesn’t respond to low levels. 

If the HPT feedback loop is healthy & functioning normally, with enough time It’s possible when the FT4 & FT3 are left low enough for long enough time the TSH rises enough to stimulate thyroid more & more.  It’s not instant in fully functioning & healthy individuals.  Once the HPT axis has bee. interpreted & your thyroid is failing you’re never going to produce enough to meet requirements.  

[SarahJane1471 in reply to PurpleNails]

thank you. I think I understand what you’re saying 🤪. Basically thyroid and Levo won’t work “together”. It’s either thyroid OR Levo ?

Yes my TSH has never been very high. Just FT3 low and FT4 under range. Blood test were done for Central but apparently came back normal. I’ve never seen an endocrinologist as I’ve not asked. Just used this group for knowledge. I would need to see one in Bath and there are none in the ThyroidUK list in RUH. They all seem to be Diabetic specialists.

I’m just stuck about what to do next. I’m going to do MMH bloods on Monday. I can’t afford a private endocrinologist so was just hoping for some ideas from the group 🤷‍♀️

[PurpleNails Administrator in reply to SarahJane1471]

In some it’s possible to still have high TSH AND take levothyroxine. (They need an increase) But in your case (& many) it is either a higher TSH or levo.  

  As you have negative thyroid antibodies and TSH has always been low it does seem as if central hypothyroidism could be the cause.

You could ask for thyroid scan to see if there is any apparent cause of primary issue with thyroid but without a reason to request will likely be rejected. 

After all - all Hypothyroidism is treated the same.  

“Blood test for central”. Normal- What was tested? The test for endocrine system complex  Were ALL the pituitary hormones tested.  Any imaging of pituitary / hypothalamus ?  Was Thyrotropin-releasing hormone (TRH) ever tested? This causes the pituitary to release Thyroid-stimulating hormone (TSH).

[SarahJane1471 in reply to PurpleNails]

July 2021

Free androgen 2.3 (0.2-3.6)

Serum Sex HBG 101(27-128.0)

Prolactin 346 (<700)

Serum insulin-like Growth factor 13(8.1-26.3)

That’s the tests.

If it is central it would be treated with Levo aswell ….. I think

[PurpleNails Administrator in reply to SarahJane1471]

interesting

As TSH gone down is does show capability of responding to thyroid levels. Just not a the correct levels.

[SarahJane1471 in reply to PurpleNails]

yup 🤦‍♀️. Do I go up from 125 to 150mcgs? My weight keeps going up (3 stone in 4yrs) over 92kgs now. Stopped work from exhaustion 🥹. Dr probably won’t agree to raise because of well below range TSH

[PurpleNails Administrator in reply to SarahJane1471]

you’ll have to point out your TSH was always low - where are your FT4 & FT3 at?

[SarahJane1471 in reply to PurpleNails]

July 125mcgs

TSH 0.04(0.27-4.2)

FT4 17.3(12-22)55%

FT3 4.7 (3.1-6.8)43%

Reduced to 100mcg due to hot weather making me jittery

Sept

TSH 0.1(0.27-4.2)

FT4 16.7(12-22)

FT3 4.78 (3.1-6.8)

Back on 125mcgs since 1/11/22. I will retest next week with MMH.

[diogenes Remembering]

In the good old days when patient presentation was just about the only way of determining health on thyroid treatment, there was a powerful test that could instantly distinguish primary and secondary hypothyroidism. It involved an injection of TSH release hormone (TRH) and taking a blood sample after a correct time to measure TSH. If primary hyperthyroid, then TSH would spring to a much higher value than at base. If secondary, then TSH wouldn't rise much if at all. I think this test is still done, but I'm fairly sure a lot of doctors don't know about it. You could ask your doctor if you could have the stimulation test to determine what problem you may have

[SarahJane1471 in reply to diogenes]

Thankyou. I’m a conundrum. TSH going down fast with hardly any increase in FT3/4

I’m assuming it would be treated the same way….. with Levo🤷‍♀️