Recently diagnosed with Hyper Thyroid. Where to go?

[Oona129]

My NHS endocrinologist seems far too busy, so I am looking for private treatment. Also, I infer from the leaflet that he's sent that his standard recommendation is Radioactive Iodine ablation which does not fill me with confidence. Can anyone recommend a good consultant to approach. I live in West Yorkshire.

[Buddy195 Administrator]

Hi Oona129 and welcome to the forum.

So members can better support and advise, can you please let us know your thyroid blood test results, with ranges in brackets (as these can vary between laboratories):

TSH

FT4

FT3

Plus any antibody tests/ key vitamins (eg ferritin, folate, vitamins B12 and D)

We are not permitted to discuss individual endocrinologists on the forum, but members can send you details of specialists via private message. You can also request a list from TUK.

[e-mail]

[Oona129 in reply to Buddy195]

Thank you. I have not managed to get hold of the results of either blood test yet. I didn't ask for the first one in May, not realising how serious this is. I have an appointment on Thursday with my GP where I am hoping I can arrange for my test results to go onto the NHS app. The second blood test was at the hospital on 12 August and each time I ring up to ask for the results I'm told they will get in touch with me. I now have a telephone appointment with the hospital endocrinologist on 21 Oct. It seems a long time to go. I am now 17 weeks on 20ug Carbimazole and presumably had the dose needed tweaking someone would have told me. I hope I will have the test results for both blood tests on Thursday and then I should be able to let you have full details

[Buddy195 Administrator in reply to Oona129]

You are legally entitled to copies of blood tests in the UK, so if there is a problem with online access, I would give your GP surgery a call and ask for a printed copy.

[Oona129]

Thanks, I have only just realised this and on my visit to my GP on Thursday I hope to resolve this. My NHS App says the procedure is to put in a request with the GP surgery.

[humanbean in reply to Oona129]

I just wanted to point out that you don't need an appointment with a doctor to get copies of your health data. Just ask the receptionists. If you go there in person to ask for paper copies, remember to take proof of identity and your address.

If you have problems getting hold of your data in any form, this link from the Information Commissioner's Office is worth reading :

ico.org.uk/your-data-matter...

[Buddy195 Administrator]

If you have not had your antibodies checked to confirm your diagnosis, please ask for these/ share results with us when you get them. TSI or TRab antibodies confirm Graves.

I was originally diagnosed as Graves (largely on ‘hyper’ symptoms) but antibodies later confirmed hypothyroidism / Hashimotos.

Also ask your GP to test key vitamins, which support thyroid health, if these have not been offered.

[PurpleNails Administrator]

What is the cause of your hyper?

 If Graves is suspected needs to be confirmed with positive TSI or TRab.  TPO & TG aren’t unique to Graves.

What of any antibodies were tested?:

 TPOab (Thyroid Peroxidase antibodies) 

TGab (Thyroglobulin antibodies)

TPO & TG “autoimmune” - Hashimoto’s (also present with Graves)TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)

TSI (Thyroid-Stimulating Immunoglobulin)

 Have you been given carbimazole? & how much?

I was referred for RAI treatment early on (at 1st appointment) Doctors do like to hand out those leaflets.  - so much easier for them  - when we start to ask questions -  here take this it explains “everything”.  (Well no it doesn’t).  

Neither did the previous 3 out of date leaflets I was sent or the up to date version on their website.

Was eventually told to speak to nuclear technician who prepares the treatment.  Even he couldn’t answer questions and told me I get told everything I need to at time of treatment.  The attitude alone was enough to put me off the treatment.   

Before seeing private endocrinologist arrange a complete test first.  funtion, antibodies & key nutrients (Vitamin D, B12, folate & ferritin) 

You can contact thyroid UK and ask for copy of list (list not recommendation) of private endocrinologist & GPs.  Many can conduct appointments on zoom - video call - so it might not necessarily have to be someone local to you.  This link allows you to submit a request for list

thyroiduk.org/about-thyroid...

contact practice reception & ask to collect printed results as in later in week. Don’t ask doctor they don’t like it. Although sometimes the receptionist checks with doctor.

Once doctor has viewed results you are entitled to view them. If they ask why say for your records.

[Oona129]

thank you for your help. I will action everything you have suggested and hope i will feel a bit more in control