Thyroid UK
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Where do I go now?

Latest results on 50mcg Levo are:

TSH 2.47 mIU/L 0.27-4.20

FREE THYROXINE 16.7 pmol/L 12.00-22.00

TOTAL THYROXINE(T4) 100.0 nmol/L 59.00-154.00

FREE T3 4.88 pmol/L 3.10-6.80

REVERSE T3 18 ng/dL 10.00-24.00

Endo has decided she is happy to leave me on 50mcg. I'm suffering with aching legs and tremors, issues with eyes aswell. Lots of Neuro symptoms really.

What do I do now? Do I source T4 online and increase myself? Do I go NDT route? Should I attempt going to see GP - although I suspect she will just side with the Endo.

Any tips or advice would be much appreciated. I only joined the club last summer after having half my thyroid out.

Thanks

Neal

3 Replies
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For full evaluation you also need vitamin D, folate, ferritin and B12 tested

See if you can get vitamin testing from GP.

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid or Blue Horizon Thyroid are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should 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

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:

Tukadmin@thyroiduk.org

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:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many especially if had thyroidectomy

rcpe.ac.uk/sites/default/fi...

Reply

This is yet another Endocrinologist who doesn't deserve the name. You are clearly underdosed on 50mcg of levothyroxine, which is a starting dose. The aim of levo is to bring TSH to 1 or lower and allow FT4 and FT3 nearer the top of the ranges.

Reply

I did have other vitamins tested and they were all OK ish, still working on them.

I tried arguing with her, and she just said I'd be t4 toxic if I have anymore.

I'd be fine paying to see a private endo, but only if I knew I weren't going to be told a load of crap again.

I might try and email TUK then and see if anyone local who could help.

Thanks

Reply

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