Endo advice to GP.....

[Spritze]

I am undiagnosed and GP is perplexed by TFT results so has asked for advice from an Endocrinologist which I attach - I hope it is readable .

I have many vague symptoms (fatigue, sore muscles, sinus, loss of sense of smell and distortion of smell, memory, low stamina, poor concentration) which may or may not be thyroid related but both my mum and aunt have Hypothyroidism. I am waiting to hear if they can tell me what caused theirs.

Disapointingly my GP wrote that I wasn't really symptomatic ! 🙄

Thyroglobulin and Thyroid peroxidase antibodies both normal. Vit D, Ferretin, Folate, B12 all good when last tested Oct 2022.

Results so far (all using same range)

May 2022 NHS test TSH 2.4 (0.27-4.2) T4 Not done T3 Not done

Nov 2022 Private test TSH 0.96 T4 11.4 (12-22) T3 3.8 (3.1-6.8)

Feb 2023 Private test. TSH 2.16 T4 11.2 T3 3.6

Aug 2023 NHS test TSH 1.4 T4 11.7 T3 3.9

I would be interested mostly in peoples thoughts on the reply from the endocrinologist regarding assay cut offs ....is it a fair response given the results ?

Many Thanks

[Jaydee1507 Administrator]

I have removed the image which contained personal information and names of doctors. If you can cover up any identifying information and repost it?

[Spritze]

Thanks - I think I've done it !

letter

[Charlie-Farley in reply to Spritze]

I am more than incredulous

But bearing in mind the GP has misrepresented your presentation of symptoms it is hard to hold the endocrinologist to account except that a thyroid specialist might not take your GP’s word for it. Disgraceful. I would be putting in an official complaint. We don’t present to doctors to be treated for hypothyroidism when we are asymptomatic.

A combination of an incredibly ignorant doctor and an endo that I am betting is a diabetes specialist who can only recognise the over the top overt cases of hypothyroidism that have been overlooked for far too long.

Do look them up and see - I have a rather good batting average on guessing the specialism. 😉

How you challenge this is really down to what you think will work. I have just steamrollered my GPS in real time and never had to deal with a (guffaw) Specialist.

I would liken letting a diabetes specialist loose on thyroid patients some what like letting an Ear Nose and Throat specialist loose in a Department dealing with Urological issues. Perish the thought!

[Agitator23 in reply to Spritze]

Hi Spritze. What an infuriating situation!

Your thyroid panel results are really similar to mine. As are all your symptoms. (I find the fluctuating sense of smell and sometimes complete loss of sense of smell particularly difficult but the medical profession don't seem to see this as a big issue... ).

It seems you have to state and restate your symptoms and almost overstate them. Otherwise, they attempt to put you down as unsymptomatic wherever possible.

A very interesting comment from the endocrinologist above. They are aware of problems with their blood tests. Apparently, there are 'many' people like us with borderline low T4 but otherwise normal TFT results. I wonder how many other healthcare professionals are aware of this, too?

Blood tests have really not assisted in my diagnosis, in fact, I'd say they have hindered reaching a diagnosis. I remain officially undiagnosed - after more than a decade - despite an ultrasound scan of my thyroid indicating 'mild' thyroiditis, low T4 (but just within range) and many debilitating symptoms.

I have followed you on here as it seems our journeys have been very similar so far. I hope you manage to get a sympathetic hearing soon.

[Gingernut44]

I would definitely point out to your Doctor that he misrepresented the fact that you DO have symptoms. Also, the advice from the numpty Endo about the cut offs for the FT4 test means, he thinks the lowest point should be lower. Too many people are being diagnosed as hypo and “we can’t have that” - absolutely ridiculous.

[Bearo]

Looks like central/secondary or tertiary hypothyroidism, where the problem lies with the pituitary or hypothalamus rather than the thyroid gland itself. If there’s a problem with the pituitary it won’t send a message to the TSH to rise to prompt T4 to get more active. Hence low TSH and low FT4.

The least your endo could do is run some tests to see if this is the case.