How long is it taking to see a thyroid endocrinologist in secondary care?

[YvonneUP]

I’m would be interested to know for those people referred to secondary care when they are not well on levothyroxine, how long does the appointment take to get and are any of you sent to a diabetes rather than thyroid specialist.

[Slappiduck]

Hi, the NHS waiting list in my area was 6 months. I researched which Dr’s were thyroid specialists and asked my GP to refer me to him. I couldn’t wait that long so ended up paying privately and saw him the next week! Best £200 I’ve ever spent as got given T3 and feel like a human being again.

[prussianblue]

Very similar experience to Slappiduck. No regrets about going private

[SlowDragon Administrator]

Suggest you email Dionne at Thyroid Uk for list of recommended thyroid specialists. Some are NHS or NHS and private practice

One of the great advantages of a private appointment (apart from short waiting time) is you actually see who you expected to see. Not a junior "stand in" Diabetes specialist

Do you have any recent blood test results and ranges you can add here?

How much Levothyroxine are you currently taking?

Always same brand?

Are you supplementing any vitamins?

If you have autoimmune thyroid disease (Hashimoto's) have you tried strictly gluten free diet?

Before seeing any thyroid specialist, recommended to get FULL Thyroid and vitamin testing. Privately if necessary

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

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 are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

[Kitten44]

Was told I'd be referred to an Endo at last gp appt in late November. First week in January I got a call saying a constant could see me last week in January. I wasn't given an option to choose, and was pressurised to take the appointment as "you've been on the system since November", only that was the first I had officially heard about it. I thought gp had forgotten as I saw nothing on my record in December when I ordered my repeat prescription.

I'll go and see how it goes. Feeling very nervous about it in case he agrees with gp and reduces dose based on TSH alone. Will try private or self medication if so.

[TaraJR]

I've been seen in endocrinology in Norwich for 4 years (2 endos). I was told in June to come back in 6 months, but the appointment came through for January. Then it was cancelled as he was on annual leave, so it's re-booked for April. That's a 10-month wait between appointments. Heaven help me if I need my prescriptions from there.

Everyone in the department seems focused on diabetes. We've been told there is no thyroid specialist.