Does Carbimazole only suppress thyroid hormones or have a bigger impact?

[bunny7872]

Im just wondering if the carbimazole could be dampening another undiagnosed problem?

Graves Disease diagnosed a year ago, currently on 10mg Carbimazole, 60mg Propranolol, Lansoprazole & Adcal dissolve after DEXA scan showed loss of bone density. Had 24 urine test which came back in normal range so they've discounted an adrenal problem.

Last 3 blood tests show levels now within normal range (TSH around 3, T4 creeping up slowly from 12 to 16.4 on last test) so Endo says im stabilising but is constantly increasing betablockers as Im very symptomatic still. Endo is ready to pull me off carbimazole, double to betablockers to 120mg a day for anxiety issues (seriously??) and send me on my way which Im not happy about and Im sure something is being missed.... Each time betablockers are increased I feel ok for a week or so then the symptoms return and its upped again to the point its becoming ridiculous, surely treating symptoms means there must be a reason they are there?

Anyone got any ideas what I need to be asking for when I see Endo again in 2 weeks, apart from blood tests and urine test nothing has been looked into and Im fighting not to be discharged. He's said he doesnt understand why I have symptoms, symptoms arent possible once stabilised but they are not only there, but blatently obvious to anyone I see, even writing is becoming a problem due to the trembling now and I've forgotten what a full nights sleep is. Im also hot, extremely hot to touch, feel like Im cooking from the inside with almost constant prickly heat even outside, how is this stable?? What am I missing here?

On another note, Happy New Year to all

[BillieSt]

TSH sounds within range but T4 is high. It's puzzling why your endo is upping the propranolol whilst deciding to actually stop the carbimazole. Propranolol, as I understand it from my endo, masks the symptoms whilst carbimazole is given to actually treat hyperthyroidism so you'd think it would be the other way around. Or maybe you've swung towards being hypo and that's why he's stopping the carbimazole, to see if this helps 'bring you back' to normal. Presumably he'll then do blood tests every few months to keep a check and tweak your medication accordingly?

Osteoporosis shown by a DEXA scan is common when suffering from thyroid problems. I was diagnosed with osteoporosis two years before blood tests showed I had become hyperthyroid. I'm on alendronic acid once a week, calcium sachets daily. If you're female and over 40 then it's also possible you're having menopausal symptoms as well, my endo has explained that this also is common with thyroid problems ... it could explain the anxiety and heat you're experiencing, also the sleeplessness (I had all these, plus when finally getting to sleep it was like switching on an action movie video, I had vivid dreams so when waking up I didn't feel refreshed). Good luck with your endo, write down your questions for him. And a Happy New Year

[helvella in reply to BillieSt]

I don't think we can say the FT4 is high without knowing the range. Could be anything from below middle to over top - depending on the lab's reference range.

Bunny, please post the reference range for FT4 if you have it.

[bunny7872]

Hi and thanks for the replies

I dont understand why he wants me off carbimazole either as whats the point of treating symptoms without the condition and the constant upping of propanolol worries me. Alas Im not in menopause, god I wish I was coz the gynae conditions would cease as well but that one little ovary is still going strong and no signs yet on tests, FSH still normal just prior to Xmas.

The range for results I have are TSH 0.3-4, T4 12-23 (last test 16.4) T4 increases on each test Endo does and I expect next weeks blood test will show its gone up again.

My T4 started at 47, went right down to 11 within 4 months of starting treatment (20mg daily) and felt great last April for a month but officially underactive so Endo stopped carb completely for 2 weeks and it shot straight back up to 28. Another month on 20mg brought it back down to 14 again, almost felt normal and dose dropped to 10mg for 3 months then reduced to 5mg until symptoms became so bad he put me on betablockers as it would all calm down and it hasnt, if anything I'm as symptomatic as I was prior to starting treatment.

Since then the dose keeps being tweaked according to what the latest test dictates and have bounced between a dose of 5-10mg daily with symptoms worsening even with the beta blockers but quite honestly I feel rotten pretty much all the time. Everything feels like Im hyper and Im getting confused and disheartened now, the whole 3lb I put on over the year is gone along with another 1/2stone and im under 7 stone now looking like the walking dead.

May I ask why T3 isnt routinely tested as well, apart from the very first blood test that showed it was 14.7 (range 4-7.8) its never been rechecked as Endo says not necesssary.

[Silver_Fairy]

I have Graves and on Carbimazole. The symptoms you describe are ones I get when hyper.

[bunny7872]

Thanks Silver fairy, thats what my head is telling me as well

[helvella]

I'd actually be questioning Lansoprazole!

Suggest you re-read the Patient Information Leaflet for Lansoprazole - and, indeed, all the medicines you are taking.

Both the PILs and the Summary of Product Characteristics documents for Lansoprazole are available here:

medicines.org.uk/EMC/search...

Search on the same site for your other medicines.

[bunny7872]

Ironically Helvella thats the one I never thought of, been on it for years as long term NSAID's caused an ulcer and I have reflux but its certainly something I shall bring up at next weeks appt as side effects are certainly enlightening. Thanks very much

[bunny7872]

Apologies, meant to say been on and off it for years, been a year again so far. Again thanks a lot