T3 Withdrawal symptoms

[Europe]

I was on 125 Levothyroxine for years along with 15 mcg of T3. Everything was fine until I all of a sudden developed high blood pressure in October. Got so many opinions from doctors but basically reduced the Levo and T3 to 5 mcg daily. Finally the blood pressure is under control but I have had a pain in the thyroid since end of November, on and off. It was quite bad now at the beginning of January and one doctor said to maybe quit the T3 as my T3 was in the upper range 24 hour after taking it. Even the T4 was in perfect range with less medication.

Today is the 5th day of no T3 and my skin on my face feels so dry all of a sudden. Just started yesterday and I feel like I have a dry mouth. Is this normal after stopping T3?

At the moment I feel like no matter what I do or try I just don´t feel right. Having high blood pressure is horrible, so is having a pain in the thyroid and also this feeling of dry skin / dry mouth. Without any scientific background it feels like the T3 keeps the thyroid in a calm (sleeping) state and once you stop the T3 the thyroid sort of kicks into action again and produces more hormones, maybe that´s why I have pain inflammation?! So frustrating but I will get there eventually.

[greygoose]

You have Hashi's, so that in itself could explain everything you're experiencing right now:

- the sudden high blood pressure (FT4/3 levels rising due to an immune system attack on the thyroid)

- pain in the thyroid (thyroid swollen due to attack)

- dry skin and mouth (due to excess hormone being used up/excreted without the support of your usual doses of T4/T3 to keep levels up)

You are sort of right about the consequences of stopping T3. But the T3 doesn't keep the thyroid calm, exactly. What it does is reduce TSH production by the pituitary. Without the stimulation of the TSH the thyroid cannot make hormone, so it does 'go to sleep'. Stop the T3 and reduce the levo and the TSH will rise and start stimulating the thyroid again. The thyroid will the do what it can. But I don't think that would account for the symptoms you describe. More likely to be the results of an immune system attack on your thyroid, due to the Hashi's.

[Europe in reply to greygoose]

I have that feeling, that the thyroid is being attacked, hence the pain. The pain only started after the high blood pressure incident and with lowering the medication.

So you think the attack started before the blood pressure went high?

So what would be the way forward? I have a feeling I must get T3 back into my system again, maybe not back up to 15 mcg but maybe 10 mcg.

In all the years of Hashimotos I don't think I have ever had an attack on the thyroid. Never had this problem.

Thank you for your answer 😊

[greygoose in reply to Europe]

Well, attacks vary in frequency and intensity, but as a general rule, they don't cause pain. Not the attack itself, but maybe the resulting inflammation.

Could be that you've had Hashi's for so long - it doesn't happen over-night - that the majority of the attacks were before you even knew that your thyroid was the problem. There are all sorts of possibilities and the chances of ever finding out the truth are pretty low.

If your high blood pressure was caused by high levels of thyroid hormone, then yes, the the attack would happen before the high blood pressure. Before the attack your levels weren't high.

The way forward is wait and see what happens next. There's nothing you can do about an attack except stop your thyroid hormone for a while until things calm down. When you start to feel hypo again, you will need to go back on your previous dose. So, yes, you do need to start T3 again if you're a poor converter. T3 is the active hormone, and it's lack of it that causes symptoms. Or too much.

[Europe in reply to greygoose]

Hi, I have figured it out finally. It was the hydrochlorothiazide medication the doctor at the emergency ward added to the list of medications. Been going crazy and feeling horribly unwell with so much pain in the thyroid. Off that medication since 4 days and I have returned from death´s door and I feel so much better. I made another post about it. 😊

[greygoose in reply to Europe]

Oh, I'm so glad you've worked it out! That must be a great relief for you. Well done!

[Europe in reply to greygoose]

As it is a diuretic it makes you loose potassium etc but also iodine which then messes with the functioning of the thyroid. It´s been a tough process but on the mend now. I just have to figure out the right dose of Levo and T3 to avoid high BP but also stay well with enough energy.

[Europe]

Well, now you gave me something new to research. 😚

In 2012, in the summer when I was fist diagnosed, I did have pain in the thyroid but it went away and never returned and since then my blood tests have almost always had the same results.

I have religiously taken vitamins and supplements since 2012 but last year I thought maybe I was taking too many / too high doses. As an example I lowered selenium from 200 to 100 and the same with some other vitamins. Could there be a connection? Since December I am back to my regular doses that have worked for years and I have also added NAC because that helped me in 2012.

This afternoon when I got home from work I took an approx. dose of 3 mcg T3. Strange thing was that half an hour later I got severe diarrhea, came on so quickly and after sweating like a ....and sitting on the toilet for half an hour it disappeared as quickly it had come on. I thought I had caught a bug in the medical clinic I work in but maybe it was the T3. The body is a mystery and how it works. 🙂

Anyway, I very much appreciate your input and I think an autoimmune attack is probably the answer to what has happened to me and the effects I am still feeling.

[Jazzw]

Could it be menopause related?

I’m pretty sure something similar happened to me—like you, on the same dose of thyroid hormones for years then seemingly overnight, things went haywire and it eventually led to a reduction in dosage. It does make a kind of sense when you realise that oestrogen has a blocking effect on thyroid hormones—so when oestrogen drops, as it does at menopause, suddenly the thyroid hormone dose you’ve perfectly fine with is now too much.

I’d suspect you still need T3–just less of it. But unfortunately many doctors are clueless when it comes to figuring out the right thyroid hormone dosage. It’s probably going to come down to trial and error on your part.

[Europe in reply to Jazzw]

I'm past menopause and on HRT since many years. Maybe something still related to that?!

Luckily where I live I have access to any tests I want, paid for by insurance or by myself, and I can get medication without prescription so I manage it myself. I haven't met a doctor yet that has understood this completely. I guess each case is very different and complex and too time-consuming to study each case in detail. You have to be your own best doctor. 😊

[mfinn]

You've had some helpful replies and I hope you don't mind me asking but is T3 now available to hypos in Spain? I always heard it was impossible to get over there and wondered how the people who needed it coped.

[Europe in reply to mfinn]

I get it from Germany. T3 still isn't available in Spain.

[mfinn]

Ah, I see. Thank you for your reply.