Advice please - Just been prescribed 10mg carbimazole

[Zman12]

Hi there ,

I just wanted some advice. I was recently referred to an endocrinologist as I had been having hormone tests due to family history of early menopause and planning for pregnancy etc. my results showed low TSH (<0.02 mouth/L) and when they retested showed high T3 (7.6 pool/L) and low TSH.

I do have some symptoms ( think nails/ hair) palpitations and anxiety, clammy hands. But feel well in myself , sleep well and am very active. Growing up I always thought I just had a fast metabolism, eating a lot and remaining very thin. Although I am now a normal weight at 9.7 stone.

I am really reluctant to take the carbimazole as I’m not a fan of taking medications ( rarely even take paracetomol) often opting for herbal things more.

Just wanted peoples experiences of that medication. I also haven’t had the cause of the hyperthyroidism yet so feel like starting the medication already feels like maybe to soon as the side effects seem quite difficult.

I also wondered whether having been contraception for the last 15 years and only recently coming off it for these hormone tests for early menopause may have effected the results as well.

Anyways would be grateful to hear your thoughts ☺️

thank you

[helvella]

I offer my blog page on the subject of carbimazole.

It doesn't really answer your questions but might be of some help/interest.

helvella - Splitting Carbimazole Doses

A short discussion about Carbimazole primarily focussed on splitting doses but containing some other information.

Last updated 14/09/2024

helvella.blogspot.com/p/hel...

[PurpleNails Administrator]

Welcome to forum. Was your FT4 tested and any thyroid antibodies? (There are several)

Add lab range as vary between labs.

10mg a really low starting dose. Important to check raised levels aren't transient.

Are you TTC? Dr would have recommended to wait until thyroid stable.

I don't think stopping contraception would have caused thyroid issue.

[Zman12 in reply to PurpleNails]

Serum TSH level < 0.02 mlU/L [0.27 - 4.2];

Outside reference range

Serum free T4 level 21.3 pmol/L [11.9 -

21.6]

Serum free triiodothyronine level 7.6 pmol/L [3.1 - 6.8]; Outside reference range

Thanks for your reply. 😀 popped the levels above. Yes they have recommended waiting, but also stated would need to take a different medication anyway as that one can’t be taken in pregnancy. Not actively TTC currently but aware I may not have much time.

think they have done more tests which involve the antibodies today so probably will wait and see what they say ☺️ had tests in April and July both showed similar ish results although the T3 got higher in that time. Yes I saw from others that it’s a very low dose don’t think my results are severe from the looks of things.

[HealthStarDust in reply to Zman12]

These levels do not look very high to me for Graves and you may actually be experiencing thyroiditis, hashitoxicosis etc for example. I would wait till the antibodies blood results before you decide to take any thing.

It’s not unusual for graves to be misdiagnosed.

[SlowDragon Administrator]

Also important to test vitamin D, folate, ferritin and B12

What vitamin supplements are you taking…..if any

Stop any supplements that contain biotin 5-7 days before ALL blood tests as biotin can falsely affect test results

[JuSa44]

I also hate taking meds but if you are very hyper and have symptoms, it is worth taking the carbimazole even if just for a short time. You will notice a big difference after a few weeks. It helped my palpitations, sleeping and especially my anxiety. I didn't realize how my hyperthyroidism had affected so many aspects of my life and, once my thyroid was fixed and in normal range, I noticed a huge improvement in many areas. Try taking it and you can slowly try weaning yourself off later.

[Zman12 in reply to JuSa44]

thank you that’s good to know 😀 did you notice any negative side effects when you were taking it ? Have you weaned yourself off it before ?

[JuSa44 in reply to Zman12]

Yes I've weaned myself off it once before and am slowly doing it again now. It's horrid being hyperthyroid and there will be things in your body that your thyroid impacts that you are not even aware of but you will feel so much better when your key markers are in the normal range again. Carbimazole has affected my teeth and mouth. I have a slight metal taste and some of my teeth feel kind of weird, a bit like I have a cavity. I've been to the dentist twice and he said there is nothing. It started as soon as I started the carbimazole so I've put it down to that, but I could be wrong. But taking the meds is worth it. I feel like a different person now that my thyroid is in the normal range!

[HealthStarDust in reply to JuSa44]

May I ask how long you took anti thyroid drugs before weaning off?

[JuSa44 in reply to HealthStarDust]

You can start weaning yourself off as soon as you are back in the normal range. I started carbimazole this April with 15mg per day and it took me about two months to get normal. Now I am slowly tapering off with half a tablet (2.5mg) per day and I have blood tests every month.

[Britpol]

I have been on carbimazole 5 mg for almost a year but I was 72 at the time and according to blood test , sub-clinically hyperactive but with severe symptoms of sweating and acid reflux. The meds did calm down my thyroid somewhat and eased my symptoms but but the end effect was that my thyroid grew so big that it affecting my swallowing ( confirmed by swallowing x-ray) and had to be removed. The consultant was surprised that such a small dose would produce such an effect, but I am very sensitive to drugs. Good luck. If you do start taking this med, watch out for symptoms .

[Yoga54]

Hi I have Graves’ disease and took carbimazole for 2 years, within 10 days my palpitations stopped and I stopped sweating and my anxiety calmed right down, I hadn’t realised how awful I had actually felt at the time and carbimazole was a life saver for me. I no longer take any medication and didn’t get any side affects so if you have been advised to take it I would recommend you try it and see how it goes.

[Zman12 in reply to Yoga54]

That’s super super helpful thank you 😀

[Yoga54 in reply to Zman12]

No problem, I have never taken medication, just the odd paracetamol and was really nervous about taking carbimazole and didn’t want to rely on it but the difference was unbelievable after a few weeks to the point that I didn’t want to come off it !! I hope it works well for you and I didn’t put any weight on either.

[Zman12 in reply to Yoga54]

I think I have had this since I was a teenager and I’m frustrated that they just always put it down to anxiety ! It used to be much worse then, and then it calmed down but it’s definitely getting worse again and I wonder if it’s related to all my hormone changes etc

[HealthStarDust]

I also wondered whether having been contraception for the last 15 years and only recently coming off it for these hormone tests for early menopause may have effected the results as well.

It wouldn’t surprise me if that’s the case. The endocrine system is very delicate. Either way, it would be wise to wait and retest, have antibodies test etc to get a clearer idea especially as you feel well.

I am surprised the GP started investigation based on family history alone. Is there something about your experience you have missed out? For example, are you experiencing symptoms of early menopause and seen by a gynaecologist?