Stopping medication

[13vc]

I have been taking Levothyroxine 100mcgs for 5 years, recently I began to doubt that it was helping me as I had symptoms of hyperthyroidism so therefore I stopped taking this two weeks ago. Does anyone think anything serious will happen to me as a result?

[SlowDragon Administrator]

Yes, you could become extremely unwell

Levothyroxine is not a medication but a replacement of essential thyroid hormones

Blood should be tested to check levels after 6 weeks or sooner if you become very unwell

You will need full thyroid and vitamin testing

TSH, FT4, FT3 and vitamin D, folate, ferritin and B12

See GP and explain you have stopped levothyroxine and will need thyroid and vitamin blood tests

[MaisieGray]

If you are hypothyroid ie your thyroid is failing, you cannot become hyperthyroid. You can however, become over-medicated and if you suspect that you are, the answer isn't to unwisely stop taking your Levothyroxine, but to have a comprehensive set of thyroid function tests carried out, together with key vitamins and minerals. In the immediate term, you are unlikely to feel unwell and may perversely, temporarily feel better; but the longer your body is forced to manage with an inadequate level of thyroid hormones, the worse things will become. Almost every cell in the body has a receptor for the active thyroid hormone T3, including the brain, the heart, bones etc etc, so potentially the health consequences of the body being inadequately supplied can be dire. Very very worse case scenario, depending what residual thyroid function you have, you could ultimately fall into a myxoedema coma, or more accurately, crisis, and die, as low intracellular T3 leads to cardiogenic shock, respiratory depression, hypothermia and so on. This is rare but not unknown and I tell you that not to shock or scare you, but to bring home the importance of the body having consistently adequate levels of thyroid hormones to draw on.

[Lalatoot]

Please be aware that the symptoms of being hyper or overmedicated can be the same symptoms as being hypo or undermedicated. I was not aware of this and for many years I was reluctant to increase my levothyroxine as I felt hyper. In fact I was undermedicated. Last year I decided to reduce my levo gradually as I was still confused re symptoms. It was a bad decision. My face became puffy, I was jittery, suffered extreme anxiety, lost over a stone in weight and I was very hypo with tsh of 24 and ft4 and Ft3 just under their ranges. That was when I realised that the symptons I thought were hyper were in fact hypo. I was still taking levo but had reduced it by 75mcg. I gradually built it up again and now know that I kept feeling unwell because I don't convert well. I am about to start a trial of adding t3 to levo once my endos letter reaches the gp and he prescribes it.... But that is another story.

[humanbean]

One of the ways that the body copes with inadequate thyroid hormones is by increasing levels of the stress hormones, cortisol and adrenaline (known as epinephrine in the USA).

When cortisol and adrenaline increase people interpret the symptoms they get as hyperthyroid. This can lead to doctors and patients assuming the patient is over-treated and doses of Levo may get reduced. When this happens the patient gets even more hypothyroid, and their stress hormones may increase even more. Lalatoot this probably explains what happened to you too.

In some patients the adrenal glands (which produce the stress hormones) can't keep up the over-production of the stress hormones indefinitely and eventually the levels of cortisol drop through the floor. (I'm not sure what happens to adrenaline in this scenario - it is never measured - but I suspect it gets raised even more if the adrenal glands are able to produce it.) Having low thyroid hormone levels makes people feel ill. Once cortisol levels drop too, the patient will feel absolutely appalling, and may end up bedridden and they will have no quality of life.

[Lalatoot in reply to humanbean]

You have it in a nutshell. That is what happened to me. Because the endo was happy to keep me in range at the top end and because Ft3 was not tested I really had no idea of what was wrong. I now 2that I was filling the shortfall of thyroid hormones with adrenaline for many years. This includes the years before my RAI when I was on carbimazole but not optimal.

[Purpledreamer in reply to Lalatoot]

That's very interesting. I wander if that's what my body has been doing for years too. I've always said if the building was on fire I could run as fast as I could out of there. Yet I honestly don't have the energy to lift my arms to fix my hair. I never thought I could be running off adrenalin. This forum really is very interesting.

[humanbean in reply to Purpledreamer]

I've had major problems raising my arms above my head in the past. In my case it was a combination of low Free T3 and low iron that caused the problem. Once I started to make headway in fixing those I could raise my arms above my head and keep them there for a few seconds. Yippee!

[Lalatoot]

Purple Dreamer From what you have described above I would say that that is what you are doing. Once my hyperthyroidism was under control with carbimazole I never felt right and in the end I took citalopram to take the edge off the anxiety. Once I had RAI and became hypothyroid I again never felt quite right and again relied on citalopram to take the edge off the anxiety. When I went on holiday and was walking about much more and sightseeing I used to feel more edgy because I was running on even more adrenalin because my thyroid had no more to give. It was Nov 2017 I decided to stop citalopram and to see if I could balance on levo only. When that didn't work I started reducing the levo as I said. Please get blood tests and vitamin tests. Post your levels on here and we can help. Initially it is not worth getting ft3 done as your TSH may be high. Once your TSH is down to 1 or lower then you need to look at the relationship between ft3 and ft4 to see if there is a problem. Maybe with the correct dose of levo you will be fine.

[Purpledreamer in reply to Lalatoot]

Thank you x conscious I've hijacked the post - sorry. 😬

[Hidden]

It is probably quite normal to feel a lot better in the days/weeks after stopping or even starting on levothyroxine. Do not be fooled as this is a hormone, not a drug. If you need it, you need it permanently and you will start to feel a lot worse given enough time.

This illness is not cured by any drug, levothyroxine is simply a replacement for what your body no longer produces by itself, without it you could become immobilised or even die.

Alternative treatments exist which COULD improve how you feel.

[2dayisthe1stday]

Hi there 13vc

Thank you for following me! You are my first follower! 😄

I have just been reading the replies to your post..

I really have no idea what is wrong with me? Joining this forum has opened my eyes..

In my profile i professed pregablin for nerve pain seemed to be doing the trick.. Its affect a couple of days into starting one a day for the first 3 days was peculiar - i had new pains in places I'd never felt pain that subsided a couple of hours after swallowing the pill then virtually no pain though i could sense it still?! 😂 By Sunday i felt pain free 🏆 on Monday neck and shoulder blades undescribable pain until moderate relief about 30 minutes after the first pill of the day (started 2/day the previous Friday) and felt fine for the rest of Monday, great Tuesday, neck, shoulders, knees and intense pain in my thumbs on Wednesday and I'm still in pain today 😩

I have a read up on pregablin and understand it can take a couple of weeks to get the full effect?

My gp is taking a holiday right now so I'll endure until his return.

I have more information about blood tests i could do with having.. I get the idea i am following in your footsteps getting to grips with hypothyroidism (hashimotos? Not diagnosed) / fibromyalgia (diagnosed and referred to rheumatology to rule out anything else.. but cancelled due to covid-19 by the hospital)

I am so fed up of perpetual pain i am trying to help myself by turning to diet. I dropped a lot of weight very suddenly before being diagnosed with hypothyroidism and continue steadily dropping. An administrator suggested i try excluding gluten..

That's next!! 😂

TTFN