Appointment with Endocrinologist

[sidneymark70]

I’ve been struggling with under active thyroid for about 30 years or so. I saw an endocrinologist in the beginning and he suggested I had Hashimotos but it has never been mentioned again. I’m at the end of my tether with constant exhaustion and wanting to make the most of whatever time I’ve got left I’m now seeing an endocrinologist for the second time in my life, next week. I am using my private health care. My GP kindly wrote a referral letter admitting the NHS can’t do as much for this condition as private health care! What I’m asking is what should I be sure to tell or ask him, so I can make the most out this precious appointment please? (Does having different makes of thyroxine make a big difference.)

[SlowDragon Administrator]

In an ideal world you should get FULL thyroid and vitamin testing done BEFORE booking consultation

There’s probably not enough time now to get tested before you see endocrinologist

Was this an endocrinologist from the Thyroid U.K. recommended list?

Most endocrinologists are diabetes specialists and useless for thyroid

Vast majority of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

U.K. medics never call it Hashimoto’s

Technically it’s Hashimoto’s if there’s a goitre

Ord’s thyoiditis when thyroid shrinks and shrivels

Both are autoimmune

First thing is, do you have any actual blood test results?

if not will need to get hold of copies of ALL previous test results from at least last 5 years, to take with you to consultation

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Far too often only TSH is tested and is completely inadequate

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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 at least annually

What vitamin supplements are you currently taking, if any?

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Which brand of levothyroxine are you currently taking

Do you always get same brand

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

About 85% of Hashimoto’s patients benefit from strictly gluten free diet

If still eating gluten get coeliac blood test done BEFORE cutting gluten out

[SlowDragon Administrator]

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

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...