Undiagnosed for too long

[Agitator23]

In a nutshell:

Undiagnosed and not on medication

Ultrasound scan showing autoimmune thyroiditis (not acknowledged or lost in system by GP practice)

Latest blood tests: T4 is 9% through range

Horrible symptoms

Familial history

TSH does not rise as T4 falls (TSH always within range)

I have been waiting for an NHS endocrinologist appointment since last year. Now have an appointment in November. I can't wait that long. I'm worried about damage being done. I'd appreciate advice.

Also, has anyone had any experience of Professor Parag Singhal, endocrinologist in the South West? Please PM me if you have. I'm thinking of booking to see him. (His earliest appointment is mid-May).

Many thanks!

[SlowDragon Administrator]

BEFORE booking any consultation you must get vitamin levels tested

Have you done vitamin D, folate, ferritin and B12 testing yet

What vitamin supplements are you taking

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[Agitator23 in reply to SlowDragon]

Hi SlowDragon

Thank you for your reply.

I've very recently had full blood count and vitamin levels checked. They all seem pretty good so think I can rule out anything from that perspective.

I have the list from Thyroid UK but the endocrinologists on there are not close to me or seem to charge very high rates. I was trying to find someone closer to me who charges a more reasonable rate. I can travel around the South West or around Surrey/Hampshire and South East.

I would like to be able to go to one of the private GPs on the list but I think I'm quite a complex case that might involve the pituitary plus autoimmune thyroiditis. So I think best to go to an endocrinologist who has knowledge and experience of pituitary problems.

What do you think? I know that you have a lot of knowledge.

[SlowDragon Administrator in reply to Agitator23]

So

Vitamin D at least over 80nmol

Serum B12 over 500

Folate towards top of range

Ferritin at least over 70

[Agitator23 in reply to SlowDragon]

I'll take a quick look to double check.

[SlowDragon Administrator]

anyone had any experience of Professor Parag Singhal,

Please PM only

[arTistapple]

Remember it’s more flexible to see an Endo privately by Zoom or Facetime etc these days. Endo does not need to be nearby.