What should I ask my consultant endocrinologist?

[Scavaig]

In a couple of weeks my wife and I am going to see a consultant endocrinologist for the first time with regard to her hypothyroidism. Is there any questions anyone wishes they had asked at their first visit but didn't ? Any advice to what questions we should ask? She has suppressed TSH 0.17 ( range 0.35-3.5) T4 - 13 ( range 8 - 21) T3 - 4.1 (range 3.8 -6.0). She has chronic tiredness, low mood , muscle pain and a swollen neck. She is so worried she either won't ask the right questions - or, even worse, ask the wrong questions - and is petrified she will be left suffering like this for ever.

Any helpful advice would be greatly appreciated.

Many thanks in advance.

[Nanaedake]

Firstly, is your wife taking levothyrxoine and if so, what dose? Has she any coexisting conditions and is she taking other medication? Sorry to ask so many questions but we need a bit more information to work out what questions she needs to be asking.

[Scavaig in reply to Nanaedake]

She is taking 100mcg daily

[Nanaedake in reply to Scavaig]

Has she had thyroid antibodies tested? They would be TPO antibodies and TgAb antibodies. What diagnosis has she been given for her thyroid condition?

[Scavaig in reply to Nanaedake]

She has been tested and had Very low antibodies. ( TPO less than 9 iuml range 0 - 34) thyroglobulin less than 10 range 0 - 115) . No real diagnosis but treated for hypothyroidism . Vits and minerals also tested - folate low but in range and vit d low but improving . Everything else seems in normal range

[Nanaedake in reply to Scavaig]

She could ask why her FT4 and FT3 are still so low despite a suppressed TSH and no antibodies present. She might ask why she is still symptomatic since she has addressed low vitamin levels.

She might ask the Endocrinologist why thyroid hormone is not working as well as it should since her Frees (FT4 and FT3) are still low with suppressed TSH.

If you would like to post vitamin levels people might be able to comment on whether they are optimal.

[Scavaig in reply to Nanaedake]

Thanks so much - yes they are good questions. Will post the Vits later.

Thanks for the advice

[Nanaedake in reply to Scavaig]

She could also ask for an ultrasound to investigate the swelling in her neck. It is possible for Hashimotos thyroiditis to be diagnosed by ultrasound findings without the patient having raised antibodies.

[Scavaig in reply to Scavaig]

B12 210,000 ( over top of range ) folate 8.32 ( range 2.9 - 60) vit d 80 ( range 50 - 200)

[Nanaedake in reply to Scavaig]

Did she have ferritin tested? Vitamin D is said to be best mid-range which in the UK is around 100 - 150nmol/L. If the tests were done recently we are at the end of the summer so vitamin D will be at it's highest and will fall over the winter unless supplemented.

Folate could be better. Is she supplementing with B12? Is she taking any other supplements?

SeasideSusie has the best advice on vitamins, check out her posts to other people on this forum.

[Scavaig in reply to Nanaedake]

Ferritin 80 ( 13 - 150) . Yes she supplements with a b complex as per susie's advice

[Marz]

Does your wife take her Levo and then wait an hour before eating or drinking anything other than water ? Is she taking any other medication ?

[Scavaig in reply to Marz]

Yes she is very good at taking her Levo then waiting. She also takes clomipramine

[Marz in reply to Scavaig]

medlineplus.gov/druginfo/me...

Is it possible the Clomipramine is having the effect of lowering the thyroid hormones. Also it could be the cause of some of the symptoms you mention - see link above ...

[silverfox7]

May sure you write a list of the questions and take it in with you. Often under pressure mind can go blank. If he queries why you have done that just say memory not too good as that's a symptom in itself!

Also go prepared for having bloods done. The last new Endo I saw sent me out with a pile of referrals plus a nurse to help me find the different departments! Yes he was very thorough and I was glad I'd prepared for that. Mostly the places I went to were to book future appointments but they did bloods and ECG on the day so be aware that could well happen. Then when other results got back to him he knew your thyroid bloods aswell so could be prepared for your next appointment.