Reduce Carbimazole dosage

[frankmac]

I am eating the same amount as usual but gaining weight about half a stone can I reduce carbimazole from 30mg to 20mg? ,It's not possible to get blood tests at the moment

[SlowDragon Administrator]

You could do private DIY finger prick test at home

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with Graves’ disease

Have you had vitamins tested?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

[frankmac in reply to SlowDragon]

Thanks Slowdragon i'll try to do more exercise and eat less and just wait until Doctors are back

[Lalatoot]

Frank mac if weight gain is the only symptom then I would suggest that the amount of carbimazole you are on is an appropriate dose at the moment. Weight gain does happen with hyper. During the initial phase our body gets used to and demands a certain level of calories. This demand for calories can continue even though our body is no longer overworking as much and we are not as active. As a result hyper folks can put on weight.

Only blood tests can show where you are re. Dosage.

[frankmac in reply to Lalatoot]

Thanks Lalatoot I've been taking carbimazole for over three years and weight has stayed constant so yes I need blood tests i'll just have to wait and start eating less

[asiatic]

You haven't posted any blood results but I read your last post a year ago when you were taking 15 mg Carbimazole which had been reduced from a starting dose of 20mg. I assume you were going hypothyroid as many do on treatment and hence the reduction. You are now on 30mg. Why the increase? Could it be again your dose is too high and your gaining weight is a hypothyroid symptom.

You would suggest you need bloods done to check this. After 3 or 4 years treatment this is quite a high dose.

[frankmac in reply to asiatic]

Thanks Asiatic I think the dosage is too high thus the weight gain but I will have to wait to get bloods done my endo has suggested iodine treatment but I don't like that idea

[asiatic in reply to frankmac]

I presume you don't mean iodine supplement but Radioactive Ablation which like many on this forum I would only have as a last resort. I am curious as to what your blood test results were that made your doc increase Carbimazole from 15 to 30 mg. Hope he wasn't just looking at TSH.

[frankmac in reply to asiatic]

Yes Radioactive Iodine treatment that to me is too drastic as my symptoms were only shaky legs and weight loss the dosage was increased from 20 to 30 as the TSH3 was higher than before.

I find the results are never really made clear to me I should get them (docs) to at least print out the results Thanks

[Valarian in reply to frankmac]

TSH3 ? Do you mean FT3 ?

[frankmac in reply to Valarian]

I think maybe FT3 I have never had the results fully explained but that's my fault for not asking !

[asiatic]

I think you would find it very useful having a copy. I would be suspicious of a doctor changing Carbimazole up and down like this but until you have your blood results noone can comment.

[tiredlady]

Sorry, can't help you. I do not take carbimazole as had allergic reaction.

[lavendergirl]

From my experience, I was wrongly given Carbimazole. The peaks in levels were due to rapid destruction of thyroid cells releasing huge levels of thyroxine that was mistaken for Graves’ disease. Useless so-called “specialists”. Could not even read the tests properly.

I stopped those wretched Carbimazole. I was so unwell. I put huge amount of weight on.

Long story short. They could not regulate my peak/trough cycle. Removal of gland on which there was a nasty cancer (unseen on ultrasound but it was on 3rd lobe that some people have).

Challenge your diagnosis. Always.

If you don’t feel good, there is something wrong.

Are you supposed to stay on it so long?

Good luck 😉

[frankmac in reply to lavendergirl]

Thanks Lavendergirl I feel fine not complaining just wanted to see if anybody thought they were taking the wrong dose of carbimazole I had a conversation with my Doctor who said it was alright to stay on carbimazole but this might cause low white blood cells which could be dangerous if I caught an infection or virus

[Nmaezi]

It could mean that you now need less the mg you have been taking; it could also be an indication that you have become hypo. My advice is that you speak to your doctor and get a test done.

[frankmac in reply to Nmaezi]

Thanks Nmaezi it's because I can't see my doctor or get a blood test just now as they are closed I was thinking of reducing the dosage from 30 to 20 mg

[Valarian in reply to frankmac]

You have a condition which needs to be properly monitored, I would push for a blood test. Once past the initial very hyper stage, I gained weight while on carbimazole even though my thyroid levels were right at the top of the range. I wouldn’t reduce the carbimazole on evidence of weight gain alone, especially as the dosage suggests your thyroid levels may still be quite high .

I had a blood test recently, and managed to arrange an appointment far more quickly than usual. Regardless of whether your GP surgery is closed for some reason, you are still entitled to proper care. Talk to your endo and see if they can suggest anything - if not, talk to your health authority and ask what arrangements have been made.

[frankmac in reply to Valarian]

Thanks for replying Valarian I used to go to hospital every 4 months to see an Endo but recently I was seeing my own doctor instead who would evaluate my bloods and with the advice of the Endo would adjust Carbimazole dosage I'm sure it would be o.k. to wait awhile to arrange a blood test

[bluejeans62]

I can't see why you can't have a blood test. I had one at the end of March as routine from my consultant. You may be sent to another surgery for it. My consultant is never happy with me changing my dose, so not sure I would encourage you to do that. I've been on carbimazole for nearly 7 years now, I find weight increase is the downside. I only take 10mg at the moment, hoping to go down to 5mg in August when tested again. So maybe you need to be patient, your dose is high, maybe they will reduce it gradually. Hope you get it sorted out soon.

[frankmac in reply to bluejeans62]

Thanks bluejeans62 I have had tests every 4 months next one is due end of May hopefully things will back to some kind of normal by then or even a bit later.Has your Endo ever suggested to you Radioactive Iodine Treatment as you have been on Carbimazole for a long time?

[bluejeans62 in reply to frankmac]

Hi, Sorry I've not replied, somehow I've not seen messages through this strange times. Never been mentioned any other treatment. A friend of mine had the radioactive treatment some years ago and she advised me not to have it anyway, go for the removal if anything, I would rather be left alone My levels are normal at the moment, so I'm staying on 10mg. I have a blood test and phone call with consultant in December, so she must be happy to leave me be. Hope you are feeling ok and reduced your meds.

[frankmac]

Thanks for replying i do feel well i'm waiting for doctors surgery to get back close to normal before asking for a blood test i'm still taking 30mg a day sometimes 20mg i should ring the Docs and ask if blood tests are getting done now