Advice on NHS appeal to see a consultant out of... - Thyroid UK

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Advice on NHS appeal to see a consultant out of my area.

Pumpkin81 profile image
6 Replies

could anyone give me some advice on getting a referral to a particular consultant please?

I have had problems with my thyroid since the birth of my first child 3 years ago. It was completely missed for 10 months until I was eventually hospitalised with a TSH over 150 and barely able to walk.

I have since improved a lot with levo but never got anywhere near back to normal.

After getting nowhere with any doctor I have now asked to be referred to a particular consultant in Cardiff hospital who has been recommended to me but have been told I will have to appeal for ‘exceptional funding’ due to him being in another country, I live in Bristol.

Could anyone tell me if they have been in a similar situation and whether they were successful and if so how?

Thanks in advance

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6 Replies
SlowDragon profile image
SlowDragonAdministrator

You find it particularly problematic because looking for referral from NHS England to NHS Wales

Have you got the list of recommended thyroid specialists from Thyroid UK?

Email Dionne at Thyroid Uk on a weekday

thyroiduk.org.uk/tuk/About_...

How much Levothyroxine are you currently taking?

is it always the same brand of Levothyroxine?

BEFORE seeing any thyroid specialist we ALWAYS recommend getting 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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and antibodies if not been done

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, 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 all 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

Add recent results and ranges if you have any and members can advise on next steps

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 primary 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_...

Pumpkin81 profile image
Pumpkin81 in reply toSlowDragon

Thank you very much for your reply.

I have had the thyroid eleven check done with blue horizon although I didn’t do it in the morning like you said.

Tsh 0.06

T4 total 109

Ft4 21.3

Ft3 4.28

Anti Tpo 282

Anti tga. 524

Vit D 75

B12 560

Serum folate >45

I currently take 100 mcg of levo and 20 mcg of liothyronine paid for privately and I am on a totally gluten free diet.

It is making some difference to my energy levels being on the T3 but not enough.

I want to see this particular consultant as he supports trying a T3 only trial which I am very interested in doing after reading the book

‘Recovering with T3’

I will try emailing Dionne on Monday thank you.

No one has ever suggested I have Hashimoto’s does this make any difference to how it should be treated do you know?

Thank you x

waveylines profile image
waveylines in reply toPumpkin81

Can you pop on the ranges for each blood test next to results, they vary from lab to lab. Based on the lab ranges in my area you definately have Hashimoto. Often with Hashimoto you need T3 added. You may need a further increase in T3 and your levo reduced. Your vit D may also be on the low side, difficult to say without the ranges!

As far as a referral is concerned to a consultant in wales from England am afraid I have no idea. Does he do private work too? You wont need funding for a private consultation so this may be your better route, just GP referral.

Arpeggio profile image
Arpeggio in reply toPumpkin81

Your antibodies a really high, this is what indicates hashimotos as an autoimmune condition. Excluding gluten helps significantly, if you do this your antibodies should go down and energy improved. It could be useful to get your doc to do a blood test to check for celiac before you exclude the gluten.

SlowDragon profile image
SlowDragonAdministrator in reply toPumpkin81

Vitamin D needs to be higher....usually around 100nmol

B12 and folate might benefit from a daily good quality vitamin B complex

one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

No ferritin test result?

Karen321 profile image
Karen321

If you definitely want to see this consultant then it may be worth finding out if you can see him privately in the first instance. Also get you full thyroid and vitamin levels tested privately using the thyroid Thursday discount code for one of the laboratories recommended on here. You can normally get an out of area referral in England but am not sure you will get one to another country (Wales) I have recently been given an out of area referral to an eye surgeon but it was quite difficult to achieve

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