Had a hemithyroidectomy last July. Felt ok for a few weeks, then all went to pot. Was put on 25mcg of Levo immediately, which was then upped to 50mcg. Still having a lot of aching legs, plus some weakness in muscles. Endo decided I was having enough, so left me on 50mcg. I then saw another private Endo, who said it was "a no brainer to up my meds" - so I went up to 75mcg. I tried this for a few weeks, but things seem to get worse if anything, and I noticed on the Levo info sheet it stated muscle weakness as side effect.
So I came off everything a couple of weeks ago, and my weakness has improved. I even walked to work twice last week in the snow.
However over the weekend I have started suffering from massive muscle and nerve pain everywhere.
Where can I go now? I dont think I want to start back on Levo again, but its obvious I'm going to need some sort of hormone replacement.
I know about NDT, but it seems really complicated getting hold of any.
Any advice would be much appreciated.
Written by
NealF
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Your TSH was too high, should be one or below. Your FT4 and FT3 weren't even mid-range, so you obviously weren't on enough levo. The side-effects they list are very often experienced by people on too much or too little levo, not just from being on levo, if you see what I mean. You have to be on the right dose, and you weren't.
I take it this was a reply to Marz ? She won't have seen it because you didn't click on the reply button under her comment. But, I've alerted her now.
As greygoose said, you weren't on high enough dose.
Dose should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
Essential to test vitamin D, folate, ferritin and B12 too plus TPO and TG antibodies.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
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