Graves, low TSH low hormones

[INOW]

Hi all,

I was hyperthyroid in 2003 treated with thiamazole, Hashimoto's hypothyroid in 2015, in 2018 TSI antibodies went up again, but I was left untreated for neither one thing nor the other. Then I started having these horrible awakenings (adrenaline surges), fatigue, tachycardya… it got better with some thyroid hormone. Then MCAS appeard too.

Finally in 2022 I started combined levothyroxine+thiamazole treatment but I don't get stable, I either feel hypo or hyper. TSI were 12-14 and it took a log time decrease till 5, and then went up again (with 2,5mg thiamazole).

This Graves' is more complicated than the first time, because TSH goes down but the hormones don’t elevate like in 2003, if I don't take levotiroxina they stay near the low range. So thiamazole is hard to take, cause fatigue.

Any similar cases of elevated TSI, low TSH and hormones not rising much?

[PurpleNails Administrator]

Sometimes the TSH stops responding normally.

So the TSH should rise in response to low FT4 & FT3 but sometimes it doesn’t.

In technical terms this is called down-regulation of HPT axis (Hypothalamic-Pituitary-Thyroid).

I take carbimazole but even when my FT4 & FT4 drop to bottom of the range my TSH stays undetectable.

The usual aim to take sufficient anti thyroid to bring the FT4 & FT3 into range. Mid way is a reasonable aim. This allows doctors to monitor for increased.

Trying to lower further or going solely by TSH will likely leave you feeling hypothyroid.

If antithyroid doesn’t control levels well ie causes high / low fluctuations or the FT4:FT3 proportions are out of balance doctors look to use block & replace.

Higher antithyroid to block natural function, then a replacement Levo to restore levels.

How much levo do you take?

2.5mg methimazole is not a blocking level dose. You need something like 40mg. So that will be having a small affect to reduce production, but not block it. There are many who feel a low level such as this help to stabilise thyroid. But by sound of it you levels are still fluctuating.

Do you have TSH, FT4 & FT3 results with lab range?

[INOW in reply to PurpleNails]

Hi, thak you for the response.

Last year I took 2,5 and I had six months of TSI decrease but… increased again.

In November a new endo put me in 5mg. and 50 levo. First days I felt like the good old days, I thought I could never feel this way again, it gave me hope. Then in a few weeks tachycardya came back. Levels weren’t out of range I’m so sensitive! Then I took 25mg until the next control with the doctor. She told me to take 10mg and 75 levo but with 10 my energy is over.

So many years with no medication for TSI, it seems that now they are more rebels oops. And it seems that decrease TSH but not increase hormones, only with levotiroxine..

Date TSH T4L T3L TSI

26/1. 1,6 0,9(0,7-1,48). 2,8(1,5-3,91) 9,29(<1,75)

26/12. 0,2. 1,25(0,7-1,9). 3,2(2-4,4) 9,53(<1,75)

14/11 0,8. 0,94(0,7-1,48). 2,94(1,5-3,91) 8,44(<1,75)

30/9. 0,41 1,11(0,7-1,48) 3,23(1,58-3,91) 6(<1,75)

[PurpleNails Administrator in reply to INOW]

The anti thyroid lowers the FT4 & FT3. There is nothing to treat the TSI. That autoimmune mechanism is unknown. Doctors don’t know why it occurs or how to treat it.

It’s a case of controlling FT4 & FT3 until it naturally resolves.

Last FT4 & FT3 look low in range.

[INOW in reply to PurpleNails]

The immunosuppressive effect of Thiamazole is why doctors prescribe long-term treatment, at least here in Spain. First time on Graves I had three years of Thiamazole.

[PurpleNails Administrator in reply to INOW]

The main role of treatment is controlling levels.

My hyper isn’t autoimmune so in cases of continuous hyper which not autoimmune antithyroid is still used.

The immunosuppressive effect of antithyroid is debated. If there are unknown effects on immune system it’s secondary to controlling levels.

There are studies showing long term use helps maintain remission, but the reasons aren’t fully understood. It may not have a direct affect on immune aspect.

In UK we use carbimazole which converts to methimazole. Doctor prefer to limit use to up to18 months then offer permanent treatment.

I opted to stay on treatment long term, many choose to do so.