Under Endo: I’m under an Endo for my under active... - Thyroid UK

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VanessaB profile image
8 Replies

I’m under an Endo for my under active thyroid as when I’m on thyroxine my Tsh has to be totally suppressed for my ft4 to get even above 14 range (12-22)

So Gp referred me to Endo so basically he could take the blame.I’m on 100 thyroxine and 20mcg of T3

Anyway after my last appointment 6 months ago Endo asked me to do bloods so he sent me the form and results went straight to him.

I had my appt today Endo asked how I’d been feeling I said I said I still felt tired and he said let’s see what your last results were and basically my Tsh was 26 😳

I feel a bit miffed that after my last bloods he didn’t ring me to increase doseage he said he just presumed I wasn’t taking meds properly and would see with these results.

He hasn’t increased my dose yet he said he will after my blood tests.

Should I have got him to increase straightaway?

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VanessaB
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8 Replies
greygoose profile image
greygoose

Did he do FT4 and FT3 at the same time? When did you have your last test, and what were the results? Rather strange to have a TSH that high given your dose.

VanessaB profile image
VanessaB in reply togreygoose

That was after my last blood tests so 6 mths ago.Since being on thyroxine my Tsh has never been that high.

I was on 275mg of thyroxine before going onto T3 as well.

When it was 3 I had awful symptoms so I don't get how it was so high and I don't feel too bad.

greygoose profile image
greygoose in reply toVanessaB

Well, it could be a false high. It happens. There are certain antibodies that skew the test. So, rather than increasing the dose, what should happen is that the endo orders a new test, with FT4/3, from a different laboratory. Changing the dose just according to the TSH is wrong, anyway.

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH is completely inadequate

Are you taking levothyroxine and T3 everyday and always on empty stomach

Which brand of levothyroxine and which brand T3

Always test early morning and last dose levothyroxine 24 hours before test

Do you normally split T3 as 2 or 3 smaller doses spread through the day

Day before test always split as 3 doses. Last 5mcg dose Approx 8-12 hours before test

What vitamin supplements are you currently taking

Essential to test vitamin D, folate, B12 and ferritin too

False High TSH can be due to mouse 🐁 antibodies!

ncbi.nlm.nih.gov/pmc/articl...

Lalatoot profile image
Lalatoot

The TSH doesn't seem right given your dose but he and we would need to know ft4 and ft3 results as well to get the full picture. They should have been tested too.I wouldn't change doses until a second lot of tests had been done to confirm those results as the first lot of tests might have had some testing problem throwing up false results.

Arkenstone profile image
Arkenstone

The high TSH does seem strange, considering your first statement “when I’m on thyroxine my Tsh has to be totally suppressed for my ft4 to get even above 14 range (12-22) “. To be honest, I did not understand your statement “ when I’m on thyroxine my TSH has to be totally suppressed”. I am trying to ascertain this statement - are you saying that the Endo has informed you that when you take your thyroxin ( which dose ?), for you to get to range you will need a higher dose of thyroxin which may then cause your TSH to be suppressed?

Do you know if your condition is Central Hypothyroidism or otherwise?

Best to keep records of your previous blood tests to check if this is a one off anomaly. Greygoose is right, in my experience changing dosage just by looking at the TSH is not a good idea.

VanessaB profile image
VanessaB in reply toArkenstone

When I was taking Thyroxine only the reason I was on such a high dose was that my ft4 only ever sat in the lower end of normal.And that was with my Tsh suppressed. I ended up seeing an Endo as my ft3 was low and my ft4 was low but my gp said I was overactive as my Tsh was 0.01

When my Tsh was 3 my ft4 was really low. And I felt dreadful.

Which is why I don't understand Tsh being so high and not feeling too bad.

humanbean profile image
humanbean

Whatever the reasons for your results I'm shocked that the Endo could have just assumed you weren't taking your tablets properly and left you with a very high TSH without following it up with you and your GP.

Why do they think it is alright to leave someone apparently very hypothyroid and just shrug their shoulders as if it is just the patient's tough luck and their own fault?

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