Over active thyroid. What will they do with me?

[Madoldcatlady]

I've had a battery of blood tests done to try and find the cause of my ongoing joint pain. FBC, LFTs, Rheumatiod screen etc and thyroid function.

The TFT resulsts are "slightly high" as my GP said in his letter to me today. He's reffering me to an Endocrinologist for further tests.

DD has hyperthyroidism and has been on carbimazole since she was 5, so I have a reasonable understanding of paediatric treatment.

I just wondered if any of you have experience of develpoing it in adulthood and how you were treated. My resting pulse is 90-100, so it's obviously having an effect on me as I'm quite fit and my BMI is about 21 IIRC. I don't fancy being be put on carbimazole if possible as I don't want to gain weight and I know of the risk of osteoparosis with long term use.

The joint pains remain a mystery. Going to see GP next week for a full review of the results.

Any info would be greatly appreciated.

As nobody else has come along in the meantime, I'll weigh in with my not-100%-relevant contribution. I don't have direct experience of hyperthyroidism, but I have had thyroid surgery - and partial thyroid removal is just one option available to treat hyperthyroidism, although certainly not the first option. While it's not a walk in the park, thyroid removal isn't a huge deal (even 17 years ago when I had mine done), with a 10-day or so recovery time, and if replacement thyroxine is needed afterwards, the amount required is easily determinable with a blood test. I think, though, that there are drug options other than carbimazole to look at before you get to the stage of looking at surgery.

Hello

I know alot about over-active thyroid. I was diagnosed aged 9 and was on carbimazole until I was 18. Thyroid sorted itself out until I was about 24 then I had to go back on carbimazole for another couple of years and it put itself right again.

Ironically I developed a thyroid tumour (unconnected to the overactivity I was told) and had a partial thyroidectomy three years ago.

I am interested to hear about your DD. I haven't heard of another child getting it so young. How is she? When I was in hospital as a child my bed was always surrounded by medical students as it was rare for children to get this. I was on bed rest for a month as my blood pressure was through the roof and I had a heart murmur and other strange goings on. It went undiagnosed for ages until my mum took me back to the doc and a locum said "get her to hospital now".

Anyway, can't really say being on carbimazole was a problem. Did suffer with mouth ulcers alot which they said was a side effect. Weight gain wasn't a problem either, I didn't put on loads, just got back to where I should be once my metabolism was straightened out.

Happy to talk more if you want.

Kbear

I didn't realise children with hyperthyroidism were as rare as that!

DH1 had HT as does his brother and Mum, so there's a very strong family history on that side.

DH1 died of another auto-immune disease when DD was 1. At the time I was obviously distraught, but also extreemly worried that with the familial links in auto immune diseases that DD would be at risk too.

I got a bit paraniod and was constantly to and fro at the doctors. They tried to passify me and palm me off. DD was a very active baby who would sleep for a total of about 4 hours a night, and fed every 25 minutes! She was also very irritable. All classic signs over HT, but no one was interested.

Eventually when DD was 5 they referred me to a paediatrician (to shut me up I think) and the tests were done although even they said it was extreemly unlikely and as DD wasn't behaving in a hyperactive fashion during the appointment they could practically rule it out. Lots of egg on his face then when he opened her notes and read the blood results. The levels were through the roof.

She's been on carbimazole since then. She's 12 now and on the highest dose she's ever had (5mg 3x a day) with little sign of it coming under control. She has wild mood swings and has always had very poor concentration, which has had a terrible effect on her school work. She is a very bright girl, but in the bottom sets for most subjects.

Did your thyroid burn itself out then KBear? They keep telling me DDs will. Either that or surgery post puberty.

I saw a geneticist once we got the diagnosis and he said that given the fact that DD has inherited the thyroid problem from her DDaddy there is a 50/50 chance that she will go on to develop the other disease that he died from.

So I still worry myself silly over her! She has 6 weekly blood tests and bone scans to check for osteoparosis every few years. But at least she's under the care of a specialist now, which she wouldn't be if my flaiming GP had his way!

Oh, and thanks for taking the time to post.

Well it's rare in children, even more rare in babies I suppose. DD was tested when she was born.

My family has a history of it but in women in their 30's and 40's not in childhood - an aunt and great aunt both had surgery years ago.

Poor DD. I know how she is feeling, I remember it well. The mood swings, the sweats, the sleepless nights, the weight loss, the over reaction to just about everything, the tears, the tantrums. By the way, a doc once told my mum before I was diagnosed that I needed more attention . She was devastated. The next doc she took me too rushed me into hospital with a high blood pressure and a heart murmur - so they don't know everything!

I was on a high dose of carbimazole at the start and they gradually reduced it. Puberty is a funny time with thyroid problems so watch for changes there but hopefully she will improve. My thyroid did right itself, not sure how common that is.

Are you in London by any chance? I know Guy's did a study once on thyroid problems in children, they asked me to take part in it. My advice if you're worried her HT isn't being managed properly is to contact some specialist thyroid doctors. I will try and find some info for you.

I was at the Brook Hospital in Woolwich but that is closed down now.

I'm always around if you want to discuss more.

Oh and I didn't know the connection osteoporosis - I was on carbimazole for about 12 years altogether. That's a worry.

Now, with regards to the osteo risk. I think I might be wrong. I've googled both, and I think the osteo risk is from uncontrolled HT, rather than Carbimazole. Sorry to have worried you.

We're oop North Kbear so not near Guys. Her current consultant recently wrote to me, following a blood test, to ask me to remind DD of the importance of taking her pills, and to watch her take them!! They are obviously thinking her rising Thyroid levels are due to me being slack rather than her illness escolating.

I would be very interested in finding a specialist who is better informed on these things. Whilst her Paediatrician has a good reputation, I would feel more confident with someone who had endocrinology as their specialist subject, as it were! If it is so rare, it's unlikely that her Paed has dealt with it very often in his career if at all.

Can anybody tell me of an endrincologist in herts/Essex area.
Thanks I,m desperate after 22 months of getting nowhere with hyperglycaemia.
Thankyou