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Thyroxine

18 replies

Sofabitch · 07/09/2017 16:47

Hey.

I've been stable on 250mcg of levothyroxin for 12 yesrs but my last blood test results have come back with tsh 0.01 and t4 of 17.8

i have no obvious hyper symptoms.. in fact i've been so tired I thought it was likely to be hypo.

I've had a total tyroidectomy with radioactive iodine so there is no way my own throid is producing anything.

Any one know what might be likely to have caused a shift ?

OP posts:
Amber0685 · 07/09/2017 16:53

Very unlikely as you have been stable for so long but could you have mixed up how much you were taking? Have you been taking the same brand tablets? Have you started or stopped any other medication? Have you lost weight? Can you think of anything that has changed?

Looksprettybad · 07/09/2017 17:06

Thats the same as my bloods and I'm well on that (on t4/t3 combination). As long as your ft3 is in range, it's not a problem. If ft3 is high, you'll be going hyper, but your ft4 isn't very high so I doubt you have very high ft3. In fact it might be low, which wil make you tired. Have you had things like iron, vit D and b12 checked to see if that might be causing tiredness?

startravels · 07/09/2017 17:21

You need to get your t3 checked. My sister has had a TT and basically can't convert at all. Some is carried out by the thyroid and the rest in the liver. You probably have a very low FT3 and may need to consider t4/t3 treatment or NDT.

Sofabitch · 07/09/2017 19:19

No weight loss. Brand of tablet is the same. I haven't messed up a dose.

No other medication.

Think I'll go back to the gp and ask for some more tests as he wants to reduce my dosage.

They are always reluctant to test my free t3. But I'll push for a test.

OP posts:
Looksprettybad · 07/09/2017 19:26

If you can get referred to an endocrinologist, your condition will be managed better. He will be able to get your ft3 tested but your GP won't be able to. It doesn't sound as though a lower dose will help you at all, but without knowing your ft3, your GP might insist on it.

Looksprettybad · 07/09/2017 19:27

Your alternative for a speedy full test would be blue horizons. I think their thyroid 11 tests all the important things so you get a complete picture.

timeistight · 07/09/2017 19:30

TSH is immaterial after a TT abd a lot of people in your position need combination therapy of one sort it another to be well.

Wherever your TSH is, you cannot be hypER if FT4 and FT3 are within the reference range and you shouldn't reduce your dose just because TSH is low, provided you feel well.

It helps though if you can quote reference ranges with your results as they vary considerably across the country and it's where you are in the range that matters, not just the figure.

Sofabitch · 07/09/2017 19:37

They didn't give me the reference ranges.

I'll call again tomorrow morning to ask.

OP posts:
fancysquillium · 07/09/2017 19:38

I have hyperthyroidism and tsh under 0.2 is a problem, 0.01 is bad! The T4 of 17 would also be over the top of the range but it's high T3 that keeps my thyroid stuck in a sort of negative feedback loop to the pituitary. Tiredness is a massive problem when my tsh is suppressed.

When did you have the RAI? Sometimes thyroids spring back to life 🙀

fancysquillium · 07/09/2017 19:40

But I'm not on thyroxine so it's probably different.

SirVixofVixHall · 07/09/2017 19:47

0.01 is virtually zero, so not too terrible. Generally people with hypo feel well at 0.5 so you are only half a point off that. Your T4 isn't very high, in fact it is on the lower side of normal which is strange with your TSH level. Perhaps your ref range is different to mine though. Agree you need to know your T3, I'm trying to get my GP to do mine but maybe I'll do the private test mentioned above.

fancysquillium · 07/09/2017 19:52

How is virtually zero not terrible or only half a point from 0.5?!

MiniMum97 · 07/09/2017 21:57

You need to know ranges and T3. As otters have said you also need to know your vitamin levels. It is common for people with hypothyroidism to have vitamin deficiencies. Get the Blue Horizon Thyroid plus 11 or Medichecks Thyroid UltraVit. Medichecks do deals on Thyroid tests on a Thursday.

When you have them post your results on the Thyroid UK forum on Health Unlocked. You will get lots of good advice on medication and supplementing.

timeistight · 07/09/2017 22:21

TSH isn't the be all and end all. Our range for FT4 is 9-26, so OP would be about mid range, which is perhaps actually a little low. With no thyroid, or no working thyroid, she will almost certainly need T3 in some form as well,

SirVixofVixHall · 08/09/2017 13:34

fancy- 0.01 + 0.5 + 0.51. only fractionally off half a point between those two figures.

SirVixofVixHall · 08/09/2017 13:37

That should be = not + 0.51. I didn't press the shift button.

arousingcheer · 08/09/2017 13:42

Another vote for checking t3. It can be difficult to get this sorted on the nhs (the lab may refuse to do it even if gp orders the test) and low t3 can cause all kinds of suffering.
Before taking t3 in addition to thyroxine I felt like sleeping most of the day, hair/eyebrows were thin, I was constipated and fluid retention everywhere (face, torso, limbs etc).
Thyroid UK can be very helpful.

fancysquillium · 08/09/2017 17:03

I seriously have no idea how numbers work! 😳 Thanks for explaining. It's definitely been v bad for me to have tsh suppressed below 0.2 over time but sounds like it might be different once on the other side and on replacement hormone.

Am surprised t3 isn't tested, mine is along with the usual plus TRab but I have a problem of making a lot more than needed.

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