First endo consultation: I am finally having my... - Thyroid UK

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First endo consultation

Lexymoon profile image
18 Replies

I am finally having my first phone consultation with endo this Friday! I haven't done any bloods since the 1st of June. What should I ask him? I do wanna write questions down so that I am.prepared! The one thing I wanna ask is what is my diagnosis because I have only been told that I have hyperthyroidism.

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Lexymoon profile image
Lexymoon
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18 Replies
greygoose profile image
greygoose

Yes, you absolutely need to ask about your diagnosis, and if it has been backed up by antibody testing:

TRAB and TSI antibodies for Grave's

TPO and Tg antibodies for Hashi's.

Both need to be tested for.

Do you have your results for the 1st June test?

Lexymoon profile image
Lexymoon in reply togreygoose

Sorry, took me awhile to get back to you. My T3 was 9 pmol/L (18.3 in May) and T4 was 25.9 pmol/L (,46 in May).

greygoose profile image
greygoose in reply toLexymoon

Have you been on any medication between May and June? The levels have dropped a lot.

Even so, those results don't sound like Grave's, even though you haven't put the ranges - please, always put the ranges because they vary from lab to lab. They look more like Hashi's. So, but you still need your antibodies tested to confirm. Don't let him put you on anti-thyroid drugs until all your antibodies have been tested. Anti-thyroid drugs are the treatment for Grave's. They are the wrong treatment for Hashi's.

Lexymoon profile image
Lexymoon in reply togreygoose

I am sorry, I have been told to put all ranges previously, but keep forgetting.

T3 9pmol/L range 2.80-7.10 pmol/L

T4 25.9 pmol/L range 9.00-26.00 pmol/L

And I have been put on 10mg of Carbimazole since been tested in May.

greygoose profile image
greygoose in reply toLexymoon

Yes, whoever put you on carbi without testing antibodies first, was wrong to do so.

Anyway, it's brought your levels down quite quickly - and the danger is, of course, that it will reduce them too far and you will become hypo. That is likely to happen far more quickly if you have Hashi's than if you have Grave's. Which is one of the reasons that testing for antibodies is essential.

Lexymoon profile image
Lexymoon in reply togreygoose

I was put on Carbimazole by the same department who will call me tomorrow so I will ask what has been tested previously and will ask about probably false or no diagnosis before treatment. thank you!

greygoose profile image
greygoose in reply toLexymoon

You're welcome. :)

However it was that put you on carbi has possibly never even heard of Hashi's - or Autoimmune Thyroiditis as they call it in the UK - and certainly doesn't understand how it works, not the importance of testing antibodies. So, be prepared for a difficult conversation!

Lexymoon profile image
Lexymoon in reply togreygoose

Omg, it was awful!!! If to be honest I am not sure I trust the diagnosis, but apparently I have Graves! When I asked what tests has backup this diagnosis she was talking so chaotic I ended up not understanding a word 😪😪😪😪 She insisted that all symptoms I am having shows Graves. She asked have I lost weight, about my eyes and family history. At the end as a result I will have to continue with Carbimazole, get my bloods done next week and then every 2 month.

greygoose profile image
greygoose in reply toLexymoon

Hmmmm… Sounds as if she has something to hide - guessing she hasn't done the antibody tests!

But she's wrong about the symptoms. There are no symptoms that point specifically to Grave's, and a lot of hyper symptoms can also be symptoms of hypothyroidism. Weight loss can also be a hypo symptom.

Did you not ask for a print-out of the results? You could try ringing her secretary and asking to be sent your results. The law says you're entitled to them.

Lexymoon profile image
Lexymoon in reply togreygoose

Aww and apparently I need to read leaflets on official NHS site about thyroid

greygoose profile image
greygoose in reply toLexymoon

A lot of help that will be if you don't know exactly what you have!

Lexymoon profile image
Lexymoon in reply togreygoose

I haven't lost weight and my eyes are fine! She even asked how long I have had it and I explained that I have no idea, never really payed attention to my heart palpitations or shaking hands as thought of it as fine. And I am pretty sure the bloods they have done is just a normal full blood test and nothing to do with testing thyroid specifically. I am so frustrated now and confused. The only positive thing is I do have blood tests next week and will have scan booked by my GP.

greygoose profile image
greygoose in reply toLexymoon

You could ask your GP if he will test antibodies.

Lexymoon profile image
Lexymoon in reply togreygoose

I will do when we will discuss the blood test results next week. thank you so much for advice!

greygoose profile image
greygoose in reply toLexymoon

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

Plus vitamin D, folate, ferritin and B12 and coeliac blood test

Thyroid ultrasound scan too

Lexymoon profile image
Lexymoon in reply toSlowDragon

My GP will get the scan appointment for me and my blood test form is asking to check magnesium, T3, T4, U&E, LFT, HbA1C, Thyroid function test, B12, cholesterol and ferritin. I haven't booked the appointment for the blood test yet.

SlowDragon profile image
SlowDragonAdministrator in reply toLexymoon

Ask that they add in testing folate and vitamin D

Obviously essential to test TSI or Trab antibodies to confirm Graves

Plus TPO and TG antibodies for Hashimoto’s

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