Endo appointment tomorrow - any ideas?

[London3891]

Hello, I've posted about this before but thought I'd just see if anyone has any new ideas.

I've been treated for hypothyroidism (autoimmune) for the last two years and have had on average one appointment a month - which in some ways is lucky as I know many people struggle to see specialists, however, I don't really feel like I'm in a better place than when I started.

Initially I responded to levothyroxine (TSH came down, free hormones went up) but ever since I've been on a trajectory of upping my dose, seeing my TSH fall AND seeing my FT3 fall as well. I got to the point where I was taking 160mcg levo / day and my TSH was undetectable but T3 was still under halfway through the range. Several members made helpful suggestions which I explored, including getting pituitary tests (all came back normal), but now my T3 is the lowest it's ever been and my TSH is still suppressed (currently on 150/day). I've had the whole raft of hypo symptoms back again (poor sleep, back ache, SIBO relapse etc.) so I feel convinced I'm under-medicated, but I can't understand why my TSH isn't higher as a result. I know TSH isn't the be-all and end-all, but wouldn't I still expect it to be above where it is now for these hormone levels?

TSH: 0.02 (0.3 - 4.2)

FT3: 3.1 (2.4 - 6)

FT4: 13.9 (9 - 23)

(B12, Folate, Ferritin and Vitamin D are all nicely medium-high in their ranges).

To try to explain my concern to my endo, I charted my results over time...but not convinced it will get me anyhere. Any suggestions about what I can ask for in my apopintment tomorrow would be gratefully received!

[greygoose]

Yes, you would expect the TSH to be higher than that. A pituitary problem would be my first thought. But, if other pituitary hormones are good, then it could be a hypothalamus problem, because the hypothalamus has to signal the pituitary to make TSH.

However, as you're on thyroid hormone replacement, the TSH is irrelevant, unless you have an endo that is obsessed with it, like so many of them are. And, of course, it will mean that your conversion will be poor. But, at the moment, you are under-medicated on levo. Your FT4 is only 35% through the range, not even euthyroid. And hypos usually need it higher than euthyroid levels. Your FT3 is 19.44% through the range, so your conversion isn't brilliant, but you don't really have enough T4 to convert.

Before suggesting you ask for an increase in dose, I'd just like to check that you do take levo on an empty stomach, either two hours after eating, or one hour before, and two hours away from most other medication/supplements - four hours for iron, magnesium, calcium, vit D, PPIs and oestrogen?

And you do leave a gap of not longer than 24 hours between your last dose of levo and the blood draw, and have the blood draw early morning?

[London3891 in reply to greygoose]

Thanks, greygoose. Do you mean that if I have a hypothalamus issue, it doesn’t really matter because I’m on hormone replacement?

My endo isn’t completely obsessed with TSH, but she does have a problem with it being undetectable. And if I up my dose any further, that’s what happens. I already feel like I’m taking a lot for a very poor hormone output.

Agree with you that conversion doesn’t look great at the moment, but this seems to fluctuate. The last few blood tests gave me much better ratios…T3 seems to have disproportionately plummeted in the last month following the reduction from 160 to 150 Levo.

Yes, I take Levo on empty stomach at 7am and don’t eat / have coffee until 8, and no supplements until 9 (and iron, magnesium, vit D in the evening). Blood draw is always at 8am, so 25 hours exactly after last dose, but this has been consistent over last two years so I think results show something in my body is stopping me raising T3.

Thanks so much for your thoughts!

[greygoose in reply to London3891]

Do you mean that if I have a hypothalamus issue, it doesn’t really matter because I’m on hormone replacement?

I mean, the main problem with that sort of situation is getting a diagnosis, because doctors are so obsessed with the TSH. But, you have your hypo diagnosis, so that bridge is crossed.

I already feel like I’m taking a lot for a very poor hormone output.

You are. That's why I asked those questions. But, you need what you need. If you have an absorption problem then you need to take a higher dose.

T3 seems to have disproportionately plummeted in the last month following the reduction from 160 to 150 Levo.

Because you are now under-medicated.

I think results show something in my body is stopping me raising T3.

Yes, your low TSH. But there's not much you can do about that.

[London3891]

Ok, thanks for explaining. I’ve never really thought I had an absorption problem, as if the Levo wasn’t getting through, I assume my TSH would be higher. Plus, I take liquid which should make absorption easier. Also, as I previously had higher TSH with higher thyroid hormones, it doesn’t seem to be a straightforward case of undermedication… will see what comes out of tomorrow’s appointment. Thanks again 🙂