Undiagnosed 1st appointment : After 6 months of... - Thyroid UK

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Undiagnosed 1st appointment

Nikki31uk profile image
9 Replies

After 6 months of back and forth to gp I've been referred urgently to endocrinology. I have no diagnosis and gp has only tested TSH which was normal although private blood tests showed my T4 was borderline. What should I expect from my 1st appointment and what tests should I expect to have. TIA

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Nikki31uk
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SeasideSusie profile image
SeasideSusieRemembering

Nikki31uk

What is the reason for the urgent referral?

If test results are in range the referral will most likely be refused, and if only TSH has been tested by GP and this is normal there doesn't seem to be a basis for referral. So is there another reason, another test which you haven't mentioned or physical symptoms? A borderline T4 from a private test wouldn't be a reason for referral either.

Can you post the results of the private test, everything that was tested, and include the reference ranges for them.

Nikki31uk profile image
Nikki31uk in reply toSeasideSusie

I have various thyroid symptoms, the reason for urgent referral is I have small lump in neck, drenching sweats, voice changes and lump when swallowing. I have appointment on 23rd July

SeasideSusie profile image
SeasideSusieRemembering in reply toNikki31uk

That explains it then. Might be looking at Hashimoto's which is autoimmune thyroid disease and very often a goitre presents.

Has GP not tested thyroid antibodies? Thyroid Peroxidase (TPO )antibodies can be tested at primary level. I would make sure that TPO and Thyroglobulin (Tg) antibodies are tested when you see the endo. If endo starts talking about overactive thyroid or Graves Disease, you will need Graves antibodies testing to confirm this and they are TSI (Thyroid Stimulating Immunoglobulin) and/or TRAb (TSH receptor antibodies).

Also TSH, FT4 and FT3.

Ask for Vit D, B12, Folate and Ferritin as well.

Nikki31uk profile image
Nikki31uk in reply toSeasideSusie

Thanks for replying, I'll write tests down in my notes. Gp has only tested TSH despite me asking for the ones you mention, I saw different gp who did urgent referral xx

SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

This showed very low vitamin levels

Presumably you have been supplementing at significant levels to improve low folate, B12 and vitamin D

Plus improving low ferritin levels by increasing iron rich foods in diet

What’s your diet like, are you vegetarian or vegan

Previous post shows extremely low Ft4

Negative for thyroid antibodies.

However 20% of Hashimoto’s patients never have high thyroid antibodies

Request ultrasound scan of thyroid.

Looking at possible central hypothyroidism

Nikki31uk profile image
Nikki31uk in reply toSlowDragon

Hi no not vegan or vegetarian and yes been, diet is good. Yes I've been supplementi g other vitamin and iron as suggested last time. Gp has not tested T4 despite repeated requests. Thanks for replying x

SlowDragon profile image
SlowDragonAdministrator in reply toNikki31uk

Strongly recommend getting full thyroid and vitamins tested privately then

Anthea55 profile image
Anthea55

That dreaded word 'normal'. What you want is 'in range' and then aim for 'optimal' which is entirely different. Sorry, just having a rant!

helvella profile image
helvellaAdministrator in reply toAnthea55

You just might find the article below (and the full paper which you can access) interesting and/or useful.

The normal range: it is not normal and it is not a range

1. Martin Brunel Whyte

2. Philip Kelly

Abstract

The NHS ‘Choose Wisely’ campaign places greater emphasis on the clinician-patient dialogue. Patients are often in receipt of their laboratory data and want to know whether they are normal. But what is meant by normal? Comparator data, to a measured value, are colloquially known as the ‘normal range’. It is often assumed that a result outside this limit signals disease and a result within health. However, this range is correctly termed the ‘reference interval’. The clinical risk from a measured value is continuous, not binary. The reference interval provides a point of reference against which to interpret an individual’s results—rather than defining normality itself. This article discusses the theory of normality—and describes that it is relative and situational. The concept of normality being not an absolute state influenced the development of the reference interval. We conclude with suggestions to optimise the use and interpretation of the reference interval, thereby facilitating greater patient understanding.

dx.doi.org/10.1136/postgrad...

pmj.bmj.com/content/94/1117...

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