Reduce dose

[Emits]

Those of you who had to reduce your levothyroxine. Did you experience any hyper symptoms on the higher dose or did you just feel better when dose was reduced?

[shaws Administrator]

Why did you have to reduce your dose of levothyroxine.

[SmallBlueThing]

Luckily, my blood test coincided with TSH falling to 0.11 and my hyper symptoms were loss of arm strength; frozen shoulder; hand and foot cramps.

I assume it was a flare, followed by reduced output from my thyroid, so the cut in dose left me feeling hypo, with the resolving of the hyper symptoms being the only "better" aspect (nevertheless, very welcome).

I'm now back to my previous dose, feeling cold and dopey, four months on from the problematic blood test. TSH had been stable at 0.4ish but was heading for 3.0 when last tested. Roll on the summer, so I can be outside and absorb some warmth, like a lizard!

[JMHW]

Hi! I had to reduce my dose when I had terrible hyper symptoms after my GP agreed to raise it, at my request, on the basis of what I read constantly, that TSH should be low in the range, not mid-range. I had been on a dose of 50mcg daily, my TSH was mid-to-high (3.5) within the range, and my free T4 was mid-range. After reading so much about how TSH ought to be very low, I asked my GP to put my dose up to 75 mcg and within a few weeks I felt as if I was on speed, very hyper, heart pounding, high anxiety, poor sleep, etc. It was the most ghastly physical experience I have ever had.

To cut a long story short, I had to reduce the dose, now feel OK again, and the moral of the story is go with how you feel, not what other people tell you (even on this forum) about what your numbers should be! I was OK with my mid-range figures. The tests while I was on the higher dose showed lower TSH (still around 2) and somewhat higher T4 but I felt I was going mad. I now know that the way your body and mind feel will always be the best guideline to dosage, not what other people say.

[mountaingoat83 in reply to JMHW]

I also learnt the hard way that very low TSH is not a good thing for everyone! Somewhere just below 1 works for me, it seems to be a very narrow range though which is hard to stay in.

[SmallBlueThing in reply to mountaingoat83]

During my recent experience, referred to above, when my TSH had risen to 0.89 after cutting my dose, I could fall asleep standing.

In the past, when I've tried to speed up arriving at an acceptable dose (for me), I ran into a problem. So now increases are after at least eight weeks and limited to 25 mcg every other day, and my GP was surprised to be reminded that I'd gone 50 mcg past the prior problem dose without a hitch.

Nevertheless, thanks for challenging the "groupthink". I hope I'll get back on track soon and have better than my current temp of 35.8C.

[mountaingoat83 in reply to SmallBlueThing]

I think the range in which we feel good can be very small, sounds like that's the case for you too. Hope you feel better soon.

[shond2015]

My dose was reduced from 200mg to 175mg daily (November 2016) I felt worse and still do. My dose was reduced to 175 mg as GP advised that blood test revealed that being on 200mg had put me in the high range of normal - even though I was feeling great on 200mg