Honeymoon period over- not feeling well at all. Could it be gluten?

[msmono]

My lastest test results are attached. My endo raised levo from 50 to 100 as id started feeling unwell again after initially feeling very well. I went to 75 initially but have been on 100 for 2weeks and don't feel any better. I haven't got quite the same exhaustion i had prior to diagnosis but my bones and muscles really hurt, i have awful mouth ulcers and i feel like I've got a bad virus. I have been eating full-gluten for 3 weeks because i want to do a coeliac test - could it be this? Next thyroid test not due for another 4 weeks! Is it worth me upping my levo a bit more just to see if that has any effect? (Have been taking iron, b12, magnesium and vit d)

[SeasideSusie Remembering]

msmomo

What dose were you on when that test was done?

How long had you been on that dose?

I went to 75 initially but have been on 100 for 2weeks and don't feel any better

It takes 6-8 weeks for the full effects of a dose increase, maybe you aren't giving it long enough.

There are no reference ranges showing with those results so we can't fully interpret them, but your TSH is saying you are undermedicated and I'm guessing your FT4 and FT3 are quite low in range.

What are your results for Vit D, B12, folate and ferritin and what doses of supplements are you taking?

[msmono in reply to SeasideSusie]

Hi -yes those were the results before the levo was put up to 100 which I've only been on for two weeks. I haven't got recent results for the vitamins as can't afford private but they will get re-done (well some will) when next thyroid test is done as Endo has requested they be done. If I'm honest Ive been a bit erratic with the dosing as was worried that the supplements might be causing a problem. It could also be hrt interaction - is it just estrogen that can block thyroxine? I take it the hrt 12 hours apart from the levo. You may be right that I haven't waited long enough - I guess because I felt so instantly better when I started on levothyroxine back in June (albeit it only lasted 4 weeks before I felt ill again) that I was expecting the same spectacular improvement. I'm probably expecting too much here. I'm not as ill as I was pre-levo and I'm grateful for that

Thank you for your reply

[MaisieGray in reply to msmono]

It could be HRT interaction

This is diogenes' explanation of the interaction between oestrogen and levo:

What oestrogen does is to stimulate the production of several proteins in blood. One of these is the most important carrier of T4 around the blood, whose T4 the tissues sample as it passes them by. Therefore this reservoir size rises, and the T4 bound on to it also increases somewhat. But the active FT4 remains the same. This rise is only really big in pregnancy where it will double owing to to the high oestrogen levels. With HRT this effect is very small but measurable, because the level of oestrogen increase is much smaller. So the influence on thyroid is negligible.

I've been a bit erratic with the dosing

Not a good idea, consistency is required.

You may be right that I haven't waited long enough

Levo is active from the first dose in so far as doing what it is designed to do, although some will notice an effect whilst others like myself, won't. However, Levo takes around 6 weeks to reach what is called pharmacokinetically, the steady state. This is where what you ingest is in equilibrium with what your body uses or eliminates. So you can't truly judge it, until it, or you, has reached that steady state; and then you'll be able to assess from blood test results and symptoms, whether or not a further dose increase is required.

[msmono in reply to MaisieGray]

Thank you, that makes good sense. My erratic vitamin use is me frantically trying to make myself well but probably making it all worse! Have been worried about taking too many vitamins. The endo did say, change o e thing at a time and i have spectacularly failed on that score 🙄

[MaisieGray in reply to msmono]

Well it's said that experience is the best teacher, so now you've 'failed spectacularly', it's a lesson well-learnt!