Good morning, I have found this forum really helpful in my hypo journey so far. I now have a burning question I hope you can help with.
I did not have any obvious hypo symptoms when I was diagnosed, nor have I had elevated antibodies and my endo does not believe atrophy is present. I was diagnosed via a routine blood test (TSH over 9) when under a menopause specialist (2020) and subsequently the same happened with my GP in 2021.
I have been testing regularly and tweaking Levo dose since and added T3 in July. My endo is satisfied with my most recent results and I’m continuing where I am for 6 months before retesting.
My question is what would be the consequences of stopping thyroid meds altogether? I have felt so much worse since I’ve been taking them and my bone health seems to be suffering as a consequence effecting my quality of life. I had no symptoms before but have dutifully allowed myself to be medicated as my TSH was too high. Could something else be causing this?
I would happily start titrating downwards tomorrow, until stopping completely, if I knew my general health would not be affected by doing so. Any advice you can give would be greatly appreciated.
Written by
Flamingo60
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You could try reducing or stopping your hormone to see how you go. You have never been on high doses so it could also be that you were under medicated. It's also possible you are sensitive to some filler in the tablets.Sone (2.5%) healthy people will have a TSH above the upper limit. On the other hand studies suggest an elevated TSH is associated with reduced lifespan. It's important to get better, then you can look into other considerations.
I probably don't have anything very useful to say, but just wanted to let you know that you aren't alone with the dilemma about "where to go" with reducing a Levo dose. I've been on Levothyroxine for many years, not on a high dose. I was advised to put my dose up from 75 to 100 mg, based on my annual TSH blood test. I felt awful after a few weeks and dropped it back down again. In the meantime (see my previous post), I've found out that I have very high cholesterol and severe osteoporosis in my spine. I have other symptoms consistent both with the side-effects of Levo and thyroid symptoms. I feel like a rabbit in the headlights, trying to decide which way to go! I'm in a waiting list to have an appointment with an endocrinologist. Told that the wait is over a year....so...
Thank you for responding BizzyLizzy62 sorry to hear your story is a similar one. This is such a minefield isn’t it and even the ‘experts’ don’t seem to know what the best course of action is. By its very nature (hormones) it’s a case of trial and error which adds another layer of frustration. All I know is I felt ok before Levo and not ok since taking it, mainly joint/tendon pain but other symptoms too. I have a blood test booked for next week and then will discuss where I go next with my endo. I hope you get some help soon xx
I know it is tempting to stop thyroid medication. My aunt did and she was driving up her street and had to stop because she had no idea where she was going or even who she was. She was put back on her meds and is fine now she never misses her thyroid meds now but the doctor at the hospital lectured her and scared her
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Fed up of headaches!
really fed up with the whole thing! 
Coming off 125mcg levothyroxine conpletley 
New and fed up
So fed up with patronising doctors
