Anyone quit thyroid meds and wants to share your experience please?

[klaea]

I'm quitting levo since I never been well on it and only had slightly raised TSH when put on it. I now realise that a lot of my family members have similar results so I will try without to see if I will feel better. Before meds I was running several times a week but looking back that stopped once put on levo. Please share your experience on quitting. Did you reduce or stop all at once how did you feel?

[StitchFairy]

I did this, many years ago. I felt better at first, but within two weeks I deteriorated very badly. My GP let me try Armour instead of levothyroxine.

Stopping thyroid medication is like going on a starvation diet. You think you're fine for a while, but the reality is that your body is gradually deteriorating because it doesn't have the nourishment it needs to keep you alive and well. If your thyroid cannot produce the amount of thyroid hormone you need, then you have to take thyroid medication to stay alive and function normally. It might be a case of finding the right type and dose that works for you, by trial and error, not just going by the TSH number.

[klaea in reply to StitchFairy]

Thanks

[GreenTealSeal_ in reply to StitchFairy]

Interesting, was this an NHS gp or private?

[StitchFairy in reply to GreenTealSeal_]

NHS. But not long after the NHS would no longer fund it so I had to buy my own without prescription.

[GreenTealSeal_ in reply to StitchFairy]

Oh ok! I'm sorry NHS withdrew funding that's so crazy! Was it prescribed recently on NHS before it was withdrawn?

Sorry for all the q's but I desperately in need of an alternative to levo and want NHS to actually help and trial NDT!

[StitchFairy in reply to GreenTealSeal_]

No, this was many years ago. If you want to try it, be prepared to buy it yourself from the US. There are a handful of people who get it paid for by the NHS I think. But mostly it's refused because it's unlicensed and extremely expensive.

[GreenTealSeal_ in reply to StitchFairy]

thanks! Could i possibly drop you a private message with some questions please? if that's ok!

[StitchFairy in reply to GreenTealSeal_]

You can, but I don't take it any more so may not be much help to you 😊

[humanbean]

I gave up thyroid meds for a few months about 11 or 12 years ago. At the time I was a newbie in all things thyroid, didn't get on with Levo and so I bought some T3 online, and then massively over did it and felt awful. So I stopped taking thyroid hormones altogether.

The reason I overdid it is related to a non-thyroid problem I had at the time. I discovered that taking T3 would temporarily fix my problem for a few hours then would come back again very quickly. So, in my wisdom (sarcasm) I thought that taking more might fix me permanently if only I took enough. Then I had to stop because my heart was going crazy.

I restarted again a few months later. This time I started much more sensibly, and have been doing things "properly" ever since.

[klaea in reply to humanbean]

Thanks

[Jazzw]

Are you hoping for different responses to the ones you received a couple of weeks ago? healthunlocked.com/thyroidu...

You’re probably asking the wrong group of people. Many of us have tried to stop, with disastrous results.

[klaea in reply to Jazzw]

I was hoping to reach new people and that hopefully someone who have done this successfully would answer.

[RedApple Administrator in reply to klaea]

klaea, Anyone who has been successful is unlikely to be frequenting a thyroid support forum. They would probably be getting on with their 'normal' lives 😊

[klaea in reply to RedApple]

You are absolutely right! Didn't think of that

[Sparklingsunshine in reply to klaea]

A lot of people who frequent the forum are tough cases, those for whom Levo monotherapy doesnt work, hence a lot of us are on Levo/ T3 combi or NDT. Like you Levo hasnt made me feel great and since I started my health has deteriorated.

That said I have other issues as well so its not necessarily fair to blame it on being hypo. My health could have gone down the toilet anyway. All I would say is this time last year I experimented with my dose and cut back drastically and then stopped. I wanted to see if my thyroid could manage on its own.

Well it failed miserably. I ended up with both very low ( well below range) FT4 and FT3 and my TSH was only just in range, (0.33) so quite weird. Needless to say I felt rubbish and concluded that for me at least I clearly need thyroid replacement. I think we all wonder if we need it, were we misdiagnosed, can we do without it.

I'm strangely glad I tried it, its worth knowing that you arent taking something unnecessarily. It could be you are someone who doesnt get on with Levo on its own and needs to try something else. It certainly isnt the answer doctors think it is for everyone.

[Tina_Maria]

You have asked a similar question a couple of weeks ago. Nobody wants to feel bad, but especially at the beginning of your thyroid journey, it is tough finding the right dose and medication. And it might take a while to get to the point where you start feeling a difference - many of us have been on that journey.

Yes, your TSH was perhaps not that high at diagnosis. However, given that your T3 was quite low in range, it looks like your pituitary feedback might not respond correctly, otherwise your TSH would have been much higher initially. So definitely not a normal TSH response or thyroid hormone levels.

Imagine a person diagnosed with diabetes and this person was just over the range, where it is classed as diabetic. They get prescribed metformin to help with their glucose levels. Many people do not tolerate metformin very well and that person sees some improvement with their glucose but still feels lousy, so they think of stopping their medication. Would you advise this person to do that? Of course not, you would say, maybe you need to take this with food or you need to get a different medication/dose etc., as the underlying problem is still present.

At the end of the day, it is your decision what you do. However, some people on here have been through a journey like you are suggesting and try to advise you not to go down that road, in order to spare you months of feeling ill and to avoid other negative consequences of too low thyroid hormones.

[SlowDragon Ambassador]

your previous post shows you were not on high enough dose levothyroxine and/or needed T3 added

[GreenTealSeal_]

I wouldn't recommend but I have stopped my thyroxine. I stopped taking a full replacement dose (75mcg for me) I have intolerable histamine issues on the meds, causing severe allergy symptoms along with joint pain and cognitive issues to the point i couldn't function at all and was really unwell with random drops in blood pressure/blood sugar.

It was the same even when doing combo therapy t4/t3.

I feel crap without thyroid meds but even crapper with them...no one will help me so not sure what I'm supposed to do.

I'm about to start vencamil thyroxine to see if its better but im doubtful and hopeless really.

[klaea in reply to GreenTealSeal_]

I send pm