Thanks for support on previous question - ray of hope

[Kitty1watson]

Just an update, really, after I asked some questions about levothyroxine. I was on 100mcg but feeling no different. On the basis of a suppressed TSH last August, the "specialist" endo told me I was at risk of a heart attack and to reduce to 75mcg. Devastated, as my T4 result was 12.2 (12.0-21). GP #1 allowed me to stay at 100mcg. Last week, I saw GP#2 who said, looking at those results, I clearly need more T4 and should have had it last August. New blood test. My TSH was still suppressed (0.125 or thereabouts I think) but the T4 was 2-something (12.0-21). So VERY VERY low. No T3 tested and "never will be" according to GP#2, lab refuses because, she says, it's such a tiny minority of people with the conversion to T3 problem and that is why they will not test it unless you have an inherited problem.

I hope this means I'll get a hefty increase in T4. I have to go back and see GP#2. GP#2 agreed endo was useless given he told me to reduce my T4, but has now said I need to be referred back to Endocrinology again. I am not sure this is a good plan, given that I have been unwell for 7 years and been seeing an endo for 2 with absolutely no improvement, and, arguably, feeling worse. I just want the GP to give me the increased T4 and see how I get on. Anyway, I just wanted to thank you for your support and I hope things might improve now that the GP finally seems to be realising that I'm under- not over-medicated.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven 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 ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 or NDT don't take in 12 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)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Are you not on NDT anymore?

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

[e-mail]

Also request list of recommended thyroid specialist

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

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