Advice for Endo appointment : Hi I have an endo... - Thyroid UK

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Advice for Endo appointment

Asyn profile image

Hi I have an endo appointment at the end of November. I am feeling slightly anxious, is there anything I can do to prepare? any questions I should be asking. I have posted my results previously. Any advice, tips would be great. Thanks you

12 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Asyn

If it was the endo I saw my advice would be to run away as fast as you could!

However, if you are on a PC then look to the right and you'll see RELATED POSTS (maybe need to scroll down on another device). You should find some helpful hints if you look through those.

SlowDragon profile image
SlowDragonAdministrator

healthunlocked.com/thyroidu...

This post showed you had very low vitamin D, low folate and B12. Plus FT3 too low

Are you now supplementing vitamins to improve? Have you rested since?

If you are now taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Ask Endocrinologist for repeat FT3 testing along side TSH and FT4

Also request they run DIO2 gene test (that's DIO letters not numbers) to see if you have common gene variation meaning you need addition of T3. It's a common gene variation (approx 16% of thyroid patients test positive)

They almost certainly won't do it, but it shows you are aware of one of the reasons for possible conversion problems

One NHS endocrinologist in Kent does offer DIO2 testing on NHS and guarantees T3 if test positive

thyroiduk.org.uk/tuk/testin...

High TG antibodies can be due to Hashimoto's. But endocrinologist may be disinterested in antibodies

healthline.com/health/antit...

Have you tried strictly gluten free diet to see if it offers any reduction in symptoms?

shaws profile image
shawsAdministrator in reply to SlowDragon

That's good to know of one Endo doing the DIO2 test on the NHS. Maybe a GP referral to him would be worthwhile if not too far away as I would imagine he would then, maybe, prescribe T3 if you had the defective gene.

You can tick off the symptoms you have:-

thyroiduk.org.uk/tuk/about_...

SlowDragon profile image
SlowDragonAdministrator in reply to shaws

Only any good if you live in Kent......but it shows it can be done!

Asyn profile image
Asyn in reply to shaws

I used to live in Kent but moved to Wales a few years ago, sadly I have little faith in the health care system in Rural Wales

Asyn profile image
Asyn in reply to SlowDragon

Thanks for the reply, I have started supplements but not gluten free yet. I’m doing a lot of reading about the thyroid but find some of it hard to understand, particularly regarding levels. I’m considering doing my own full thyroid panel prior to the appointment. My expectations are not high but I want to be prepared and sound like I know what I’m talking about. Thank you for all the advice

I would be inclined to take someone with you that is supportive. Sometimes it can tie your Gps hands even furthur once you have seen an endo it is not something I would be rushing to my GP to ask for unless it was a endo recommended by people on this forum and known to treat my particular issues. Some people are writing a letter describing thier history and symtoms and asking for it to be added to the notes before hand.Also write a list of requests but expect to get knocked back on at least most of them.

Asyn profile image
Asyn in reply to

Thanks I will be writing things down and will be writing down what the consultant says, I did wonder if I could record the appointment, with drs agreement, but would that seem confrontational?

shaws profile image
shawsAdministrator in reply to Asyn

Ask if you can record as you'd be able to listen to it several times later - after all many have 'brain fog' and have difficulty even absorbing what is being said to them. Nerves can also come into it too. Just tell him you're desperate to improve your health and remove symptoms.

SlowDragon profile image
SlowDragonAdministrator

Would agree with Mandyjane, taking a supportive friend or family member along is very good idea.

They don't need to say anything.

shaws profile image
shawsAdministrator in reply to SlowDragon

They are witnesses to what is said to you.

Somtimes they can see a list of symptoms these days as you argueing with them and it can get thier backs up a bit sometimes. Better to just hand them a letter and have it put on your notes.

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