Carbimazole is not working

[Nat1972]

This is my second time having an overactive thyroid - Graves. I started getting treated in March and since then I have had two spikes in my T4 - last reading it was 35 with me taking 25mg of Carbimazole. I am waiting for my new bloods just now and I don’t think the Carbimazole is working. My HR is regularly over 100BPM. What options can I take next? I really don’t want RAI. My GP is treating me which was fine in the beginning as I have had it before but not now it’s going pear shaped...she doesn’t know what she is doing. Just need to know options...

[SeasideSusie Remembering]

Nat1972

I don't know too much about overactive/Graves, but I do know that it should be confirmed by positive antibodies. Did you have any antibody tests?

TSI/TRAbs antibodies are for Graves.

TPO/TG are for Hashimoto's (underactive with fluctuations which can cause hyper-type symptoms and results when in the hyper phase).

[Nat1972 in reply to SeasideSusie]

I was tested for antibodies 10 years ago and they were high but I am getting them tested again now. I find out tomorrow.

Last time I was overactive the Carbimazole worked and after 18months I was all good. 20 years later it has resurfaced but it’s not the same. I have higher T4 and I never had these spikes while on medication which makes me worry that it’s not Graves...

[SeasideSusie Remembering in reply to Nat1972]

Nat1972

I have higher T4 and I never had these spikes while on medication which makes me worry that it’s not Graves...

This is why it's so important to have the correct antibodies tested but it seems that a lot of doctors aren't doing this. We are hearing a lot on the forum lately about members being put on Carbimazole without antibody testing for Graves when in fact, it's discovered later that it's actually Hashi's and the high FT4/low TSH has been due to a Hashi's hyper-phase.

[Nat1972 in reply to SeasideSusie]

Thanks seasideSusie,

Which ones do I need to test for? I am having Thryroid antibodies tested and Ths receptors tested. Is there Anything else I need?

[SeasideSusie Remembering in reply to Nat1972]

TSH receptor antibodies are TRAbs and this is for Graves.

I would also ask for Thyroid Peroxidase (TPO) and Thyroglobulin (TG) as these would suggest Hashimoto's if positive. Best to get both under and over active antibodies tested when there's any doubt

[Nat1972 in reply to SeasideSusie]

THanks, I will discuss with my GP tomorrow

[SeasideSusie Remembering in reply to Nat1972]

You may not be able to get these tests at GP level, it may be that an endo has to order them.

[Goldengirl01 in reply to Nat1972]

I had this in 2011, went on carbimazole and everything was ok although endo said it may come back in about 5 years which it did. All gp’s would do was test tsh which is useless, was so I’ll in the end I could hardly get out of bed but eventually I drove to my drs which was bad but they don’t come out to you. I burst into tears in surgery saying I couldn’t cope with this any longer and would he do a t3 and t4 test, he made me feel I was wasting his time but sent me outside to waiting room while he made phone call. I was sent to amu at hospital, after 2 hrs then ecg consultant came back and said I must have an infection somewhere as heart was going crazy, again I said do me a favour test t3 & t4, he said well your tsh is ok so I said please. He went away then came back later and said as I’d had this b4 he’s added t3&4 to bloods. The range is 12-24 mine was 95 and tsh had stopped working. They put me back on carbimazole and sent me home. Saw endo a few weeks later who said I need to have total thyroidectomy urgently which I have now had and on levothyroxine for life, he also said if I hadn’t gone to my gp when I did I would have ended up being blue lighted to hospital with heart problems. So you need to push for what you think is right.

[Nat1972 in reply to Goldengirl01]

Thanks, I find out today my bloods

[Nat1972 in reply to Nat1972]

Go says I might be resistant to Carbimazole, I have never heard of that. I am getting scared here!

[bantam12 in reply to Nat1972]

GPs don't usually treat hyperthyroid patients, you need a referral to an Endo.

If meds aren't working you can opt for surgery.

[Nat1972 in reply to bantam12]

Thanks Bantam, my GP is trying to learn from me!! She is trying to be a hero..

[Nat1972 in reply to Nat1972]

My GP says my T4 is still high despite increase in Carbimazole. I am getting worried noe

[bantam12 in reply to Nat1972]

Are you happy being her guinea pig ?! Graves is not to be messed with, you need treating properly so insist on a referral.

[Nat1972 in reply to SeasideSusie]

Hi SeasideSusie,

I have my blood results and antibody results and I have very high reading antibodies for both

Graves and Hasimotos! Great! And I am still overactive so doctor has recommended RAI which will fix Graves but not Hasimotos, that will be a wait and see approach. The doctors will only know the difference once I have the uptake test....fun stuff the Thyroid business.

If the iodine uptakes then I have Graves if it doesn’t I have Hasimotos.

Has anyone else expierenced this? My doctor also said Carbimazole doesn’t always work and that’s more often than not...

[SeasideSusie Remembering in reply to Nat1972]

Nat

Has anyone else expierenced this? My doctor also said Carbimazole doesn’t always work and that’s more often than not...

Make a new post about this. I don't have antibodies, just bog standard hypothyroidism. You need to target your question to those who have experience of what you're going through

[Valarian in reply to Nat1972]

Around 65% of Graves’ patients are positive for both TPO and TRAb. Both are autoimmune diseases.

Carbimazole isn’t a quick fix, and it needs to be prescribed and monitored by someone who knows what they are doing.

Was 25mg of carbimazole your starting dose ? What were your thyroid levels/ranges ?

[Nat1972]

No I am not happy and I have requested an emergency referral....

[helvella Administrator Thyroid UK]

I am no expert on Carbimazole, but the documentation references a range of 20 to 60 milligrams.

medicines.org.uk/emc/produc...

25 milligrams is some way below the maximum dose.

Also, are you splitting the dose?

[Valarian in reply to helvella]

40 mg/day seems to be a common starting dose for patients whose thyroid levels are around double the normal range (we don’t know Nat1972’s test ranges). That would probably be split into two doses, but my endo said it’s more important to take the whole lot than to split it.

A few people have mentioned doses of 60mg, but I think they’ve either had very high levels (more than double the range), or have been on Block and replace rather than titration (so a high enough dose of carbimazole to stop thyroid production altogether, plus levo to replace naturally produced hormone).

@Nat1972 - has your FT3 been tested ? If you’re in the U.K., you should definitely be referred to specialist care.

[Nat1972]

Hi Valarian, I had T4 in March of 46.5 then T3 14.3 after 4 weeks of 30mg Carbimazole it dropped to 11 and 3. Since then it has slowly increased with a spike in July of T4 25 then it went down then up again in October to T4 35 now it’s come down to T4 28 and I am back now to 30mg, we will see how it goes with Beta Blockers as my heat rate is all over the place.

I like the idea of blocking totally the thyroid and replace with thyroxin. It makes sense but I have to find a doctor who will do it.