TSH Levels on Carbimazole

[Booksellercate]

Hi, I'm posting on behalf of a family member.

The member was diagnosed with Grave's disease four years ago and has been on various doses of Carbimazole since.

She has been struggling with extreme fatigue, erratic mild hairloss. Her fatigue and difficulty getting up means she is often unable to take her son to school (my retired dad usually does this) and sleeps all day, asking my parents to ring her at 3pm so she can be awake for him to get home from school. Perhaps unrelated but she's had issues with her skin - particularly on her hands - it looks a little like eczema, although it's relatively low. Her last blood results tests flagged up nucleated red blood cells.

Her TSH is 0.8 - is this an expected level for somebody on longterm Carbimazole (not sure of exact current dose and it's changed a few times)?

Are these symptoms likely due to over/under medication on the Carbimazole?

I know nucleated red bloods cells often present in B12 deficiency but is there a link to thyroid issues or any other autoimmune illness?

Thanks for any feedback. Graves disease isn't something I know much about. The family member struggles to understand the medical information behind the condition or fully grasp the details of her condition so she's requested I accompany her to her next appointment with the endocrinologist to support her?

[Clutter]

Booksellercate,

TSH of a hyperthyroid patient isn't sufficient to tell whether she is under or overmedicated. She should have FT4 and FT3 tested too.

[Booksellercate in reply to Clutter]

I agree with you. But I'm wondering how easy it'll be to persuade an NHS endocrinologist to test these when her TSH is within normal range.

[Clutter in reply to Booksellercate]

Booksellercate,

I'm very surprised that an endocrinologist doesn't think it essential. Any way you can persuade her to do a private home test?

[Booksellercate in reply to Clutter]

If the TSH is OK, do NHS consultants have the ability to order FT3 and FT4? (I query as a neurologist once tried to order a thyroid antibodies test for me; her request was blocked because my TSH was normal).

She is unable to work so funds are tight. I might be able to help sort something out though.

Another issue is that although she is quite open about her fatigue and issues with her family, she finds it difficult to express herself and talk to consultants. I suspect she is concerned that if she owns up to health issues it might be questioned that she cannot look after her son - he was once on the watch register as she has had drinking and behavioural problems. These also make it quite hard to talk to her about the situation. I'm just trying to gather as much advice as I can before deciding how I can best support her.

[Clutter in reply to Booksellercate]

Booksellercate,

It's not right that she needs to sleep all day. I suspect she may be overmedicated but FT4 and FT3 need to be seen to determine that. Endo can order whatever tests s/he thinks necessary. Hospital lab may decline to test FT3 if TSH isn't suppressed enough. If ferritin, vitamin D, B12 and folate haven't been tested it would be a good idea to ask GP or endo to test them. Thyroid patients are often low/deficient in vitamins and minerals.

She should be frank about her fatigue and other symptoms or the consultant won't be able to help her. She doesn't have to mention that her son was on the watch register.

[Booksellercate in reply to Clutter]

It isn't right and she does recognise this. It was brought up in a fairly recent GP appointment. The GP naturally went down the depression route, to which she agreed it might be a possibility. He suggested a trial course of anti-depressants but she back-tracked and denied any problems with fatigue. I wasn't present at that appointment or I would have suggested the ferritin/B12 tests to rule out these as possible causes first.

She was diagnosed with severe vitamin D deficiency a couple of years ago. Her vitamin D has raised to just within ranges, but is far from optimal.

I'll see if I can have a good talk with her to decide on a course of action. I'm happy to do whatever I can to help her but sometimes she seems to not want to help herself - perhaps part of her health issues overall.

Thanks for your advice. I'll make a list of points to raise appropriately with the consultant.