Coming Off Thyroid Meds – Your Experience?

[bajmon]

I was prescribed levothyroxine 4 years ago after going through the hypothyroid phase of subacute thyroiditis. Looking back, I’ve learned that starting levothyroxine in that situation isn’t usually recommended — but at the time, I just trusted the advice I was given.

Since then, I’ve had no proper follow-ups. I’ve never even seen an NHS endocrinologist, only a private one briefly. I still feel awful, can’t lose weight no matter what I try, and feel completely unsupported. No one seems to care about full thyroid panels, nutritional support, or looking at root causes. It feels like I’ve just been added to the system as another long-term prescription case.

I’d love to hear from anyone who’s been taken off levothyroxine —

Why were you put on it in the first place?

How did it happen that you were taken off?

How did you feel during the process, and afterward?

Have you stayed off it?

Did you need to support your body in any other way (diet, supplements, etc.)?

Thanks in advance — I really appreciate any shared experiences or advice!

[humanbean]

With subacute thyroiditis, whether or not you can come off thyroid hormones would depend on how much damage the thyroiditis did to your thyroid and whether or not such damage could heal and if it leaves you in the same state as you were before the thyroiditis occurred.

Given the general poor state of thyroid treatment provided by doctors, not just in the UK but also in other countries I would be reluctant to come off Levo and/or T3 but then I've never knowingly had thyroiditis.

You might find the wiki page on the subject of interest if you haven't already read it :

en.wikipedia.org/wiki/Subac...

The last few lines in the article state :

Replacement of thyroid hormone with levothyroxine may be needed in patients who develop a hypothyroid phase.[2][3][4][5] Annual followup is recommended for these individuals due to risk of recurrence and development of permanent hypothyroidism.

If you do decide to come off your Levo and/or T3 I would suggest doing it fairly slowly e.g. by reducing dose by 12.5mcg or 6.25 mcg per week, then testing levels after 6 - 8 weeks. If you feel well enough and your results are not too bad, you could then reduce dosage by another 6.25 mcg or 12.5 mcg. Then just keep going and reducing/testing every 6 - 8 weeks.

I'm sure some people would just stop taking Levo, but that would be a big shock to the system and I think getting back to a dose you cope reasonably well with would be easier if reduction was done quite slowly.

Others might disagree with my slow tactics.

[bajmon in reply to humanbean]

Hi, I would not come off it by myself and will be talking to my GP about it. As I read countless of medical studies, I know, it is not recommended to give patients Levo during ST unless they are very symptomatic which I think I was. However my private Endo didn't explain to me what Levo was. He just assumed I knew. I thought I was given medication for the illness! 4 years on and I'm still on it still feeling unwell not knowing if my Thyroid actually recovered. The lines can last for up to 2 years which in my case did. I am aware Levo needs to be taken down slowly with re-testing every 4-6 weeks. I am interested if anyone has on this forum tried or successfully has come off it.

[Jazzw]

Your previous posts would seem to suggest you’ve never been on quite enough levothyroxine. Have you ever had an increase in dosage?

[bajmon in reply to Jazzw]

I am on 75mcg and this has been increased from 50. I tried to have 100 on one day a week which made me very overactive and symptomatic. The dose isn't an issue here. Levo should have not been given during ST and if so, only temporarily. I don't have damaged Thyroid which ultrasounds have proven. I don't have Hashimoto's, I had post-viral Thyroid infection which is a self-limiting illness.

[Buddy195 Administrator]

 ockerdoc may be able to advise, as recently posted about this

healthunlocked.com/thyroidu....

[3-T1AM]

Hi bajmon. I did not have thyroiditis, but in case it helps--I quit levothyroxine after 12 years, mostly taking 200mcg of Synthroid. After 3 months my free t4 and t3 were normal; tsh was 13 (getting tested again soon). I did it slowly and haphazardly, which I don't recommend! I did not tell my endocrinologist--He's no longer the decision maker and he would never help me quit anyway. I'm in U.S. I'm much much much happier off it, but it's possible that's because i have other health issues.

[bajmon in reply to 3-T1AM]

thank you for your message. What is your condition that required meds, if I may ask. Your tsh sings very high, hope your feeling well! Mine has never went over 5 even and I was given meds for to symptoms, though symptoms as that time were for to the infection. I should’ve just been signed off from work and let to recover instead. I’m going to get tested and try to come of it slowly I think. Keep me posted.