NHS referral

[Runner25]

My Dr has (reluctantly) referred me to an Endo specialist through the NHS. I am worried that as he is an NHS specialist he will only have the power to prescribe Levo. You will see from my other posts that despite (or because of) being on 75g Levo I am still getting severe headaches and fatigue, usually, but not always bought on by exercise. My blood tests have all been ok, but he didn’t do T3!! Should I go private? I live in the South of the UK.

[SlowDragon Administrator]

First step is to get FULL thyroid and vitamin testing privately as NHS won’t do it

Then come back with new post once you get results

Obviously essential to test ft3, all four vitamins (and both thyroid antibodies if not been tested yet)

ALWAYS get full testing BEFORE any consultation, but especially if private consultation

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking?

Do you always get same brand of levothyroxine

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

Most local endocrinologists are diabetes specialists and waste of time

[shaws Administrator]

Endocrinologists in the UK can prescribe T3 but not all will do so due to the exorbitant cost (it used to be much more affordable). I hope yours is one who will when they realise that the patient isn't improving on levothyroxine. He might, at first, prescribe a T4/T3 combination. I hope so, as a combination has been proven by scientists to be helpful to many patients.

[Runner25 in reply to shaws]

Thank you for that.

[humanbean]

You can pay for private testing without also paying to see a doctor. Depending on what tests you choose to do you might need to pay for phlebotomy, but many tests can be done with finger-prick blood samples.

See these links for more info :

thyroiduk.org/getting-a-dia...

thyroiduk.org/getting-a-dia...

Once you have any results you could post them in a new post on here and ask for feedback. You could also opt for getting a "doctor's report" from the testing company, although not all companies provide these reports.

One thing to bear in mind when opting to receive a doctor's report is that the advice will be given according to NHS rules which might not be patient-friendly.

Patients with more experience of testing and optimising nutrients and thyroid hormones actually have a lot better grasp of what helps people to feel well than doctors, in my opinion.

There's nothing to stop you getting a doctor's report and asking patients for feedback as well.

[Runner25]

Good idea, I will do.

[Musicmonkey]

To increase your chances of a trial of T3, if that is what is needed, do your research first. Look at the guidance that applies, i.e. NICE, RMOC South, NHS England Consultation and BTA. All confirm that a trial is in order if a patient doesn't do well on Levothyroxine alone. However, all patients will be given Levothyroxine in the first instance.