Carbimazole and confusion

[Lunatika]

Hi all, hope you are doing well 😊

I already posted some time ago, and for all the results you can check the BIO, as they are the most up-to-date at the moment.

In the meantime, my GP referred me for an ultrasound, which I will have on August 13th, and for a consultation with an endocrinologist, which has been scheduled for June 2025. I called my GP because this wait time seemed excessive just for a consultation, and he referred me to the hospital's AAU.

I went there, and the doctor who saw me liaised with the endocrinology department. They suspect a thyroid nodule that is causing these dysfunctions. They told me they will perform a CT scan as soon as possible, and in the meantime, they have put me on Carbimazole 10mg until August 22nd, when I will have blood tests for a review.

My symptoms are still the same: I sweat at night (although I don't know if it's due to the objectively hot weather), in the morning after the shower I have strange hot flashes that last at least an hour, with a feeling of fatigue and cold sweats. My eyes are reddish and always glassy, they often burn, I have severe itching in some parts of my body that comes suddenly and is really hard to bear, I am super bloated in the stomach, and I am considering going gluten-free for a while to see if it helps.

I can't say these things are disabling, but I am trying to understand if this treatment with Carbimazole is necessary. I am very scared of taking this medicine; in general, I am an overthinker and easily impressionable ☹️ so I fear I will get all the possible side effects.

I should start today, considering they gave me these three weeks before doing the blood tests to see how it goes, but I am very scared.

Can anyone please reassure me? 😔

Thank you very much in advance 🧡

[Buddy195 Administrator]

I personally would not want to take medication until correct thyroid antibodies have been tested:

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

I was initially diagnosed as Graves (largely in hyper like symptoms) but when encouraged by forum members here, I tested antibodies and found I have Hashimotos not Graves. However, I do also have Thyroid Eye Disease, which is often more associated with Graves. Re your eyes…. Use preservative free drops such as Hyloforte or HycoSan and see an ophthalmologist if you have concerns. If TEDsymptoms are suspected, take a selenium supplement if 200ug for 6 months (as this has shown to be effective with mild/ moderate TED)

I (like many others here) hugely benefited from eliminating gluten. I now have zero bloating/ gastric symptoms….so definitely worth a trial for a few months to see if this helps. Some members like to have a coeliac test prior to the trial. I’m not coeliac but am certainly gluten intolerant.

[PurpleNails Administrator]

Your FT4 isn’t raised, so I would delay starting anti thyroid until it becomes higher or persistently raised.

Hyper nodules do occur with autoimmune & without. I began carbimazole as FT4 & FT3 were high, but later antibodies were negative. I have a large toxic nodule, and I’ve taken carbimazole long term.

An ultrasound will detect nodule/s but do not determine function. A specialised uptake scan is required to confirm that.

[Lunatika in reply to PurpleNails]

Thank you for your reply.

The endocrinologist team at the hospital told me they will indeed perform a special scan where the thyroid function can be detected, and I will have an ultrasound as well in few weeks.

In the meantime, I have been given Carbimazole to take, and I will need to check in three weeks' time with a blood test to see how it goes. I have contacted another endocrinologist, a family friend who operates in Italy, and he also thinks the dosage and treatment are appropriate for now.

Unfortunately, I haven’t spoken directly with the endocrinology team at the hospital here; I've only communicated with the GP who liaised with them. I don’t know all the reasons that led the doctors, based on my results, to decide to treat me with Carbimazole for now.

This is why I’m a bit scared.

However, the expectation now is to have a check-up in 3 weeks to see how things are going with the medication.

[PurpleNails Administrator in reply to Lunatika]

Well 10mg is a low starting dose and in 3 weeks, it will have some impact but it’s full effect will not be shown for nearer 6-8 weeks. You can make adjustments if need be. If doctors test FT4 & FT3 & ensure they don’t drop too low that’s fair, but often they just test TSH and want to see it rise. often that can only be achieved by making FT4 & FT3 very low / for many weeks - that can cause hypothyroid long before the TSH starts respond.

Carbimazole brought my thyroid levels into range but TSH still hasn’t raised 5 years later.

[TheWink]

Hi Lunatika - please don't worry about Carbimazole. I have been taking it since January 2017 for sub clinical hyperthyroidism with no side effects. I had an ultrasound scan before diagnosis - an age-related benign nodule that the endo could feel. I don't know how old you are, but being hyper is a heart risk in women over 65 and the symptoms are unpleasant as you've discovered eg night sweats. I started on 5mg for 5 months TSH and T4 still abnormal, so I take 10mg and 5mg on alternate days. Mostly I'm stable but since breast cancer treatment (Anastrozole) it can go up and down a bit. I have a great GP who tests every 2 months now and liaises with endo - everyone has long waits for hospital appts now so GP tries to sort it without a referral. We have agreed between endo, GP and me that as long as I feel well, the meds shouldn't be tweaked as this caused hypo (grim - no energy at all) and hyper (A&E with chest pain, palpitations and very high blood pressure). You do get used to recognising what feels best for you and if I start to feel hyper I take 5mg on a 10mg day but on the whole it's fine. Good luck and hugs 🤗

[Lunatika]

Thank you all,

It is always comforting to have the opinion of those with experience and knowledge. I am a newby here, trying to understand things better.

Thanks PurpleNails for your advice. I will push my GP to include T3 and T4 other than TSH, as I don't want to go hypo.

TheWink thanks for your support, I started today with 5mg, I know it's not what was recommended, but I want to give myself a few days to see how my body reacts before following the 10mg. I'm glad you are so well taken care of; I'm struggling a bit to get appointments and tests. I asked my GP to do TRab and TSI, but I was told that general practitioners don't order these tests.

Luckily, I asked to at least check my vitamin D, and tomorrow I will have the tests. I'm waiting to have an ultrasound, and I was told I would be referred for a scintigraphy as well due to a suspected hot nodule.

This forum gives me a lot of comfort, thank you so much.

[Kelz21]

if it helps I too hate all meds and did NOT want to take anything and resisted for quite some time but have now been on this medication since 2016 at 10mg. I did start at 5mg however as a compromise! No side effects so far (despite looking out for them hourly initially!) mine too is a rouge nodule!

[bluejeans62]

Hi, I was on Carbimazole for many years at various doses. My symptoms were a little different from yours, palpitations and dramatic weight loss even though I continually ate. I did have the heat problems and fatigue, put mine down to my age. I have been diagnosed with Graves, the only treatment I have received has been Carbimazole, at the moment I'm off medication, yay!! need to have a blood test in a few weeks to check all is well. Personally, I wouldn't say it's a high dose, but why take them if not required, especially when the doses I would take would make my level go under and I would end up feeling depressed and tearful for no reason. I wouldn't personally like to advise you either way and August isn't that far away to get results and go from there. Hope all go well for you. Tina

[pennyannie]

Hey there again :

Your results from a month ago do not show a need for an Anti Thyroid drug

and you appear to have Hashimoto's - a thyroid Auto Immune disease that presents with over range TPO antibodies - which we had a month ago-

These symptoms you are experiencing are transient and your T3 and T4 will fall back down the ranges by themselves as with this AI thyroid disease you can experience swings in symptoms as this AI disease attacks your thyroid -

Very many Hashimoto's patients find they have food intolerance and stomach bloating -

and you need to be checked out for both celiac and pernicious anemia and for food stuffs such as gluten, dairy and wheat while still eating your choice of food -

Very important to also get checked out for your core strength vitamins and minerals -

ferritin, folate, B12 and vitamin D and we can advise where best these levels should be maintained.

Dr Izabella Wentz researchs and writes on Hashimoto's AI thyroid disease if you would like to read in greater depth - thyroidpharmacist.com

Carbimazole is an Anti Thyroid drug and prescribed when you have a diagnosis of Graves Disease and over range and positive TRab / TSI or TSH Thyroid Receptor antibodies -

and with very high and over range T3 / T4 readings and a TSH stuck down below the range.

Have you had this Graves Disease antibody test run in the meantime and now have a confirmed diagnosis and positive over range Graves antibodies - probably, generally, written as a TSH Thyroid Receptor antibody and number ?