carbimazole, tests and immune system

[Zoe12]

Hi, I reduced my Carbimazole to 10mg and then got these test results

Tsh 0.02 (0.55-4.78)

t4 23 (11.50 - 22.70)

t3 10.2 (3.50-6.50)

I've upped Carbimazole to 20mg but seriously feel unwell. my heart rate consistently over 100 and if I take propranalol my oxygen saturation goes under 90. I've a permanent sore throat and think I need antibiotics again. I get really out of breath on any activity.

I am gluten and dairy free and not able to eat tomatoes or peppers

I'm still 6.5 stones 44kg since July.

I feel like my health is getting worse. how can I boost my immune system, I feel rubbish. How can I boost my immune system when carbimazole is attacking it all the time.

I feel like I'll never get better

thanks

[SlowDragon Administrator]

See GP or endocrinologist next week

That was too large a reduction from 40mcg to 10mcg

What vitamin supplements are you taking

[Zoe12 in reply to SlowDragon]

i did reduce 40 to 20 to 10 but yes too fast a reduction. I hate this medicine as I have a permanent sore throat or mouth sores due to it hitting immune system

I take vit c, zinc , multi B, D3, B12, l cartinine and magnesium.

[PurpleNails Administrator]

A sore throat when taking carbimazole *always* needs to be reported.

The patient information leaflet will specify this & the BFT who produce leaflets found in many hospital produce this drug alert card (downloadable) as it’s nots always well known by professionals.

btf-thyroid.org/Handlers/Do...

Carbimazole should not be resumed until your FBC (full blood count) has been taken & neutrophils checked. Has this been done?

Carbimazole can cause a rare side effect of triggering a drop in this fighting infection cell, & this can occur anytime when taking the medication - not eg in few months.

[pennyannie]

Zoe - you need to talk immediately with your doctor or go directly to the hospital about these side effects you are experiencing - - do you have the PIL Patient Information Leaflet there - as it advises you to take action - ?

The Carbimazole is not attacking your immune system -

all the AT drug does is block your own daily thyroid hormones rising higher and slowly your T3 and T4 thyroid hormones will fall back down into range and your symptoms relieved.

Your own immune system which is there to protect the body from foreign bodies has been triggered to turn on itself and has turned and attacking your body rather than defend it.

There is an alternative AT drug which you will be switched too - but youmust alert your medical team that you are not well and suffering side effects from the Carbimazole.

Do you have a diagnosis now and can share your T3 / T4 readings and ranges at diagnosis ?

[Fruitandnutcase]

Maybe I’m a real scaredy-cat but I had Graves some years ago and there is no way I would have messed with my carbomazole unless my doctors told me too. I don’t know if your doctors have told you to alter your dose in which case if they have done so then apologies.

Carbimazole is a powerful drug, that’s why you have to be treated by an endocrinologist. I read somewhere that it is considered to be a ‘dirty’ drug whatever that meant. I was lucky that I was really well on it although at the start I had a couple of episodes of sore throats and I got myself straight to my GP for a WBC blood test. First time was fine, second time because I was fine first time and it wasn’t massively bad we went for ‘wait and see’ and things were fine.

I started on 20mcg then after four weeks the carb was increased to 40mcg for the rest of my year long block and replace treatment time. My levo was increased from the fifty mcg I started on to 100/125 mcg but really I took 125 all the time so I kind of messed with that but what I’m basically trying to say is I don’t think carbimazole is a drug you want to go ‘free range’ and alter amounts of by yourself.

As the others have said - you need to see your prescribing doctor and that should be a hospital consultant not a GP. I think mouth is sores along with the sore throat are not good at all. You do need to see your endocrinologist and you need a WBC blood test to see what is going on.

[Zoe12 in reply to Fruitandnutcase]

thank you for your long reply. I very much dislike my endocrinologist who I've seen once last July.

About 6 weeks prior to the results I posted here, I had results that were in range so I dropped from 20 to 10 mg in agreement from my GP. Then I had the results I posted (no longer in range) and we upped the dose back to 20. Mr doctor wrote to my endocrinologist about my symptoms but received an unhelpful reply. I have more blood tests in 4 weeks. I understand in range us not always as it seems.

I have a lung ultrasound tomorrow and at the end of the month ultrasound abdomen and thyroid. Maybe they'll find some answers.

I've no clue how I'll be managed or if block and replace will be used. My endocrinologist said I'd receive appointment letters for Nov and Febrary but have received nothing so guess I'll have to chase that.

thanks for your reply

[Fruitandnutcase in reply to Zoe12]

Sounds like you are very unfortunate with your endocrinologist. It doesn’t sound like he is particularly helpful or sympathetic. Do you know if he is a thyroid endo or a diabetes endo. There is a huge difference. Would it be possible to be referred to a different endo?

If you’ve been ‘seeing’ him for a year then it sound like he is going to be doing block and replace - I spent three months on carb then when my numbers were where they needed to be they started adding in levo and that was increased every six weeks or so from what I remember and my treatment lasted exactly a year.

Graves is a really horrible condition and treatment seems to be so slow - or I definitely felt it was in the beginning. Myself, I’d say it might be worth it if you could look around and possibly travel to another area to find someone better. You certainly need to get things sorted out. Good luck with it all, if you still have the sore throat and mouth ulcers tell your surgery receptionist that the instructions with your carb tell you you need a blood test for that asap.

[Zoe12 in reply to Fruitandnutcase]

Thanks. My throat and mouth are better today but intermittently I do get a sore throat. This time it was covid.

My endo is definitely thyroid. I saw him first around July time, I can't quite remember and would need to check.

I'll try one mire appointment with him and see how it goes. I agree, I feel so unwell with this Graves, I just hope it will get better.

[Fruitandnutcase in reply to Zoe12]

Oh no! Graves and covid - no wonder you don’t feel good - no fun at all. Good luck with your endo. Could you take someone into the consultation with you for a bit of moral support? They wouldn’t need to speak but you wouldn’t feel quite so alone and that might help you.

[Zoe12 in reply to Fruitandnutcase]

I don't really have any friends or family unfortunately. My partner runs his own business.

[Bigthensmallthenbig in reply to Fruitandnutcase]

I hope you don’t mind me commenting here. FYI only the other drug is Propylthiouracil. I was started on that and it didn’t make me feel well at all so they switched me to carbimazol which suited me better. I had graves but had a history of not being able to control my weight very well so was pretty ok with being hyper (but the other symptoms overrid this). It’s really good that you’ve found this group now. If I had I would probably not have gone through with the radio iodine treatment. Where you are now is important for your future because disabling the thyroid has its own problems. If you feel strong enough, make yourself heard. Change endo which is easier said than done I know. The advice from those above, who know much more than me to go to the doctor, is right.

[Knowsnothing]

Are you suffering from acid reflux at all?

[Zoe12 in reply to Knowsnothing]

I don't brlieve i suffer from acid reflux , I just can't eat acidic foods like fruit or tomaties. One bit and I feel horrible but it's not refluxing up that I can feel.

[Knowsnothing in reply to Zoe12]

I don't actually get the acid coming up a lot but have been told I have Gerd and have constant sore throats with it, although I could swear it's linked to a low t4.