New to meds

[Fluffypip]

Started on carbimazole 10mg today and I'm really worried about taking the meds and side effects. I have a fatty liver and I'm worried how that will be effected. Also someone told me they had a flu like thing for the first few days which is normal but is this true? How would I know its not low white blood cells? What about weight gain? What side effects do most people have and will taking it at night be better?

[PurpleNails Administrator]

10mg carbimazole is a very low starting dose.

It’s natural to be worried about starting a new medication but serious side affects are rare, being aware & vigilant for them is the best thing to do.

Read the patient information leaflet carefully & re read it from time to time & check for up to date versions. I had investigations once for a separate neck swelling (inflamed salivary gland) which resolved itself. When I re read an up to date version and learnt it was a reported side affect, doctors didn’t seem aware.

There no set specification to routinely check full blood count or liver markers when on carbimazole, but it’s recommended if any suggestive symptoms occur.

Do you have regular liver tests as with existing issue?

I didn’t have flu like symptoms starting, but have had symptoms prompting a full blood count, which haven’t been low.

If you are on too high a dose of carbimazole, this causes low (hypothyroid) levels & that can cause weight gain.

Most are told the right dose will allow you to regain the weight lost previously & you shouldn’t gain weight unless you are accustomed to having a larger appetite.

I gained weight when hyper & I did have a huge appetite but lost weight when in euthyroid range. When I had had a normal appetite & energy to organise eating well & be more active - So that didn’t apply to me.

Carbimazole can be taken at any time of day & should not be affected by food or other medications.

So taking at the most convenient time will be suitable but taking consistently & at same time if possible is best.

I started with 2 doses. As a split dose reduces the window for the thyroid to start making hormone again, eg 08.00 & 20.00.

Have you been given 5mg pills or 10mg to take once daily?

[Fluffypip in reply to PurpleNails]

The pharmacist inky had 20mg tablets so they cut them with a pill cutter to provide a months supply of 10mg doses. My thyroid levels went up dramatically after being normal 2 weeks before. I had swelling and my voice went strange (since returned to normal) around that time which must be something to do with it. I don't have any autoimmune antibodies. I'm so confused. I have a small nodule. Can a nodule suddenly have gone crazy and caused this sudden hyper episode or could I have had some kind of swelling which will settle in the next few weeks? This is all new to me

[PurpleNails Administrator in reply to Fluffypip]

Oh no, not having 10mg so supplying split pills. That’s not ideal.

Most leaflets i’ve had to specify not to break the pills & swallow them whole. Although when I have had to fine tune a dose I haven’t had an issue splitting them.

A nodule tends to be more stable and gradual in speed of fluctuations, that’s what I’ve always found.

When the thyroid subject to autoimmune sudden fluctuations more common.

[Fluffypip in reply to PurpleNails]

I'm definitely negative for all the thyroid Autoantibodies. Can anything else cause a temporary inflammation of the thyroid?

[Bluesammy in reply to Fluffypip]

I don’t know if this is any help but I suddenly developed a hyperactive thyroid which developed very quickly resulting in a thyrotoxic crisis, after I had a cold/throat virus (possibly flu?). I was advised I had a multi-modular goitre after having an ultrasound scan and that I would need carbimazole for 18 months before radioactive iodine was administered. I researched a lot and changed my diet and started supplements with the help of a nutritionist and a few months later I had to reduce and then stop the carbimazole altogether. I can’t say for sure whether it was the virus that sent my thyroid out of whack (Drs advised me it was due to the nodules), or that my change of diet made a difference, or if it did, how much difference, but, and this is only my personal opinion, something made a difference and touch wood, 5 years later I am still meds free and did not need the radioactive iodine that I was told by the Endocrinologist was ‘essential’. Maybe it was my immune system that needed a boost. All I am saying really is don’t take anything you have been told as gospel. I was advised by the lady who took the ultrasound that I did have several nodules but they were too small to produce any extra thyroxine than normal; the Endocrinologist advised me that she was wrong. I know who I believe now . Incidentally, A&E also advised me that the hyperthyroid flare up was probably due to a virus and likely settle in time. I don’t and never have had have raised antibodies. I hope this gives you some reassurance. . It indeed was a scary time and the knowledge and expertise of people kind enough to offer advice on this blog, together with my own determination to research as much as I could to try to avoid what I was told was inevitable (radioactive iodine) have been invaluable. I’m not for a minute suggesting that this is the right course of action for everyone; but it has worked for me. I monitor my bloods regularly and privately via Medichecks as I can get all the additional tests that the GP won’t do automatically (Free T3, Free T4, thyroid antibodies, Vit D, Ferritin, Folate, Active B12, CRP HS). I also periodically do a urine iodine check, as I found out my iodine levels were very low. Do hope you find this useful. I would say private message me if you want more info. but I’m afraid my technology skills are not great so I don’t know how to use this facility, either to message someone else or have them message me, although I have seen others refer to it. If someone is able to enlighten me, I am happy to use that facility. PS I didn’t have any visible swelling but my voice did change and then went back to normal. Endo. told me it was nothing to do with thyroid; GP disagreed and advised that my inflamed /swollen thyroid would be causing it as it is close to the voice box.

[Fluffypip in reply to Bluesammy]

Thats so interesting! Thank you for telling me. Its so weird because I started having problems with my voice as well as lots of weakness especially in hip/pelvis/shoulders. Also not able to sleep and periods of racing heart. I thought it could be due to thyroid (mum was hyperthyroid before surgery ) but t3 and t4 were in normal range but my tsh was gradually going lower. My voice got worse and I had a feeling of swelling under my chin area. I had a private ultrasound which showed 2 tiny and one small nodule. Then suddenly (in the same week) my thyroid went crazy and I became very hyper. I don't know if such a small (0.8cm) nodule can cause all this suddenly or what. The thing that had changed prior to this sudden change was I drastically changed my diet, cutting out gluten, sugar..low carb and minimal dairy. A few weeks into the diet this all happened. I'm so confused. !

[Bluesammy in reply to Fluffypip]

My thoughts on what you say are as follows, but they are only my thoughts based on the experience of someone I know, which I will mention afterwards. By drastically changing your diet, maybe your body started to try to rid itself of a toxic load from what you had been eating (wheat/dairy etc intolerance ?) and it was too much for your body to deal with so quickly. Our elimination and methylation systems need to be working well. The experience I mentioned - completely different but it struck a similar chord for me: A lady I know was very overweight and decided to lose weight, which she did very quickly. Shortly after losing a lot of weight, she became very unwell (not thyroid related though) and it was suggested to her that her body couldn’t deal with such a rapid weight loss. Not the same I know and maybe not relevant, but as I said, it struck a chord with what you said. Maybe something to think about? But not get stressed about. All the best.

[helvella Administrator]

You are in the UK, aren't you?

Your prescriber could do with some education!

Carbimazole is supposedly available in 5, 10, 15 and 20 milligram tablets.

10 and 15 are either not available, or are often not available, and are a silly high price.

But it would have cost hardly any more to prescribe 5 milligram tablets. Avoiding splitting.

At least two makes of 20 milligram carbimazole state they should not be split!

Your pharmacist should, in my opinion, have referred back to the prescriber and had the prescription re-written rather than splitting tablets (whichever make you have received).

It is often said that it is best to split the daily dose into two or three doses. E.g. 5 milligrams morning and another in the evening. The reason for this is that it has a very short half-life - well under 24 hours. By the time you take your next dose, hardly any will be left and your thyroid can "escape" and produce/release thyroid hormone

This also opens up the possibility of easily raising to, say 15 or 20 milligrams if 10 is not quite enough. Or drop to 5 a day if less is needed.

This is a link to the British National Formulary list of products & prices:

bnf.nice.org.uk/drugs/carbi...

This is a link to the Patient Information Leaflets to all UK carbimazole tablets:

products.mhra.gov.uk/search...

[Beefull8 in reply to helvella]

That’s interesting! I take 1/4 tab in the morning and would always tell my endo that I felt hyper while sleeping and asked if maybe the medicine was gone by then, and she said it was unrelated.

[helvella Administrator in reply to Beefull8]

You see varying claims of the actual half-life, but 6 hours is a fairly common claim.

When you take a tablet, it gets absorbed and starts to work quite quickly.

Imagine:

06:00 take a carbimazole tablet - blood level rises to X (we don't need to look at real numbers)

12:00 level has dropped to X/2

18:00 level has dropped to X/4

24:00 level has dropped to X/8

06:00 (just before next dose) level has dropped to X/16. Effectively, none left.

You might still be getting some effect even when level has dropped to X/4. But beyond that, it is going to have close to zero effect.

And just why are you having to split tablets?

5 milligrams tablets cost £2.59.

20 milligram tablets cost £3.74.

So yes, 5 mg cost more than 20 mg. But not by that much! And, as I said earlier, some manufacturers of 20 mg tablets say they should not be split.

[Fluffypip in reply to helvella]

I don't have a choice...this is the UK! I had to see a private endocrinologist and get a private prescription then see him again in a month. I'm stuck with this bottle of half tablets. I don't have the luxury of changing it. The health care system is very broken here...even if paying for it!

[helvella Administrator in reply to Fluffypip]

Well, I'm far from being a medic. But it makes no sense to me.

I understand very much what you are saying. Maybe prepare your supporting information and ask to get it changed at your next appointment?

[Fluffypip in reply to helvella]

I will definitely ask at the next appointment

[Fluffypip in reply to helvella]

Can I split the half tablets in half to take 5 in morning 5mg at night?

[helvella Administrator in reply to Fluffypip]

Well, Beefull8 seems to be splitting further! But it is entirely wrong-headed for them to have prescribed/dispensed 10 mg in the first place! (And 10 mg tablets cost £81.32. No-one should be prescribing them.)

I'd be much more comfortable if you felt able to go back and get 5 mg tablets prescribed and dispensed. Then take one in the morning and another in the evening.

[Fluffypip in reply to helvella]

Its just not possible. That would involve seeing a doctor which is almost impossible

[birkie]

I was put on cabimazol for hyperthyroidism unfortunately for me it contained lactose so I couldn't stomach it, or PTU the other anti thyroid drug, all I did was vomit it back and had gut issues .My gp insisted I keep on it as the side effects would ease, they didn't for me, but that was my only side effect.. My bloods were never tested by my gp until I was rushed into hospital in thyroid crisis.

As other members have suggested keep an eye on how you are feeling, and make sure your gp takes regular blood tests.

I hope the drug works for you, best of luck🍀