Carbizamole not working: Hi I have... - Thyroid UK

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Carbizamole not working

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Hi I have hyperyhyroidism and have been on carbizamole for over a month but the symptoms still persist excessive sweating drinking like a fish. Should the meds have tpstarted to work now?

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24 Replies

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lisbriamy6 years ago

It took about 4-5 weeks for me to start to feel better. First 4 weeks felt really bad. I'm about 8 weeks in now and still not there but feel much better. Went hypo at about 6 weeks and now feel hyper again. I'm waiting on my blood results now.

Good luck and I hope you feel better soon.

in reply to lisbriamy6 years ago

Did you suffer from excess sweating and thirst of did you have other symotoms

Rmichelle in reply to 6 years ago

Hi I am a year into my treatment now and still not quite the same, better than I was but not my old self yet, I had the whole shabang tremors, sweating, hot, breathless, heart palps, dry mouth, panic attacks,choking and swallowing problems, it was dire, carbi takes 4-8 weeks to notice a slight difference and it is not unusual to feel worse also, your body is under extreme pressure, particular your heart, its important you rest and rest, I had to change my whole life basically, its a year for me and I'm still not back at work but I also have hashis and graves that go hand in hand with thyroid disease.

Please try not to stress, gp will usually start you on 20mgs until you see your Endo but in the meantime you must get regular bloods done every 4-6 weeks as levels change, remember carbi will not work straight away as it has to get rid of the excess thyroid hormone first and then that dose will start to work a little then nothing happens quickly with the thyroid, I was very I'll for months, read my posts it may help you.

You will be very hot and perspiring I remember it very well, I also could not sleep as I was body tremoring badly and breathless, you will feel better but not yet, hang onto the light at the end of the tunnel.

Did your gp say about the main side effect of taking carbimazole,- if you get a really bad sore throat and fever you will need to get immediate blood test done to check your white blood cell count as the medicine can affect the liver its important to know this. Anything you are concerned about please ask, learn as much as you can from this site as we have all been there or like me still fighting it.😀

in reply to Rmichelle6 years ago

Thankyou for your reply I'm also epeileptic so that doesnt help. It's just the sweating and thirst that is doing me in. Sitting in front of fans with next to nothing on isn't a pretty site. I went to accident and emergency last week with sore throat white cells ok but liver function test not great but don't have any symptoms of that

Rmichelle in reply to 6 years ago

Glad you got it sorted, I went to a&e on numerous occasions in the early few months as I thought I was dying but they could not do anything about it has it was thyroid disease, they just kept checking heart , lol I now have ectopic beats due to carbi and the disease, keep fighting yiy will hopefully feel better in near future. Love the naked fan bit, ha😁😁😁

in reply to Rmichelle6 years ago

I'm sure it will get sorted . Sooner rather than later. Can't wait to see the endocrinologist. At this rate I will be wearing my shorts in the winter I'm so hot

Rmichelle in reply to 6 years ago

You are funny😁 I hope it gets better soon. I hope you get a really excellent Endo as most are diabetes specialists and do not have a clue about thyroid disease- read some research on here, I was the same as a newbie looking forward to seeing Endo but sadly I'm on number 3 Endo as the others have been sacked by me, you maybe lucky and they are not known for their patience and empathy, Good luck though.👍👍😁🙌

in reply to Rmichelle6 years ago

Im allways funny comes with middle age I think. How did you manage to sack three endocrinolgists. My hospital us fairly new in Birmingham so fingers crossed. Cold weather coming at weekend it won't affect me I will still feel like I'm in the hottest part of the earth. Either the batteries in my scales are failing or I have lost ten pounds in weight in three weeks. Although it is not noticeable .

Rmichelle in reply to 6 years ago

Yes the weight will drop off you, I lost a lot of weight and was verging on a tiny small 10 but now I'm 12🙌, you will put it back on when you start feeling a little better lolyes all my endos have been rubbish as they know nothing, one was very in knowledgeable and could not even read my blood levels another was down right rude and patronising because I was challenging him and now I'm with another NHS Endo who also is incompetent and ignorant, hate to say this but you will find that when we get referred we think great!! I will be cured after I see them but its not like that, myself and others on here have not had a Endo who is patient, knowledgeable, understanding. I do hope you get a really helpful one as most are out of their depth and talk blah blah😠 I'm at wolves new cross so not a great way away from yours but I'm from Shropshire as the hospitals in Telford were equally as bad!!

Hey yes the temperature has dropped here too, autumn is around the corner now🌟

in reply to Rmichelle6 years ago

A small ten wow. I'm as small 110. I've just been shopping and I'm getting strange looks wearing shorts. Maybe my legs are ugly or people think it's a bit cold for shorts. I'm hoping that with the qe hospital in Brum being fairly new the consultants may be ok. I have a neauroligist I see there for my epilepsy and she is very competent . No sleep again last night zombie conditions are now approaching.

I can honestly say epelipsy isn't pleasant but hyperyhyroidism is ten times worse as there are no let up in the symptoms

Rmichelle in reply to 6 years ago

Go lady, it does not matter what other people think as long as you are OK with it.

I was going to transfer to the queens in birms as its a teaching hospital but thought its was a fair distance to travel, you will be OK but it does take quite a while, people are all different, its taken me a whole year to feel 85%!!go girl!!😁😁

in reply to Rmichelle6 years ago

Thanks for your comments but last time I looked I was male lol. The qe in Birmingham have been good to me I would think it's worth you considering it I know it's along way but it's worth it I think it's one of the top places in the UK. Do you know what the maximum level of carbizamole that can be prescribed

Rmichelle in reply to 6 years ago

Ha I got that one wrong!!😁 its because mostly it is very female orientated on here but great more males are coming forward for the ones on here!!

I'm sure the dose is 60mgs at split doses throughout the day and only a Endo can prescribe anything above 20mgs, carbi is usually taken for around 12 to 18 months for the greatest chance of remission but there are people on here that do take it for longer, have you had your antibodies tested too for hashimotos and graves? I have both of these. Important to test ferritin and b12 and folate as these defiencues come hand in hand with thyroid disease.

Yes I've heard the qe has very good reviews and they have a large Endo centre, I still do consider it, new cross is very small and all endos stick together with there small minded views.

I'm not going to ask if you are feeling a little better as I know its too soon but are you coping OK? 😁👍

in reply to Rmichelle6 years ago

Well I'm lucky if it's female orientated lol. Ah that makes sense 20 mg was prescribed by gp. Have only had bog standard blood tests TSH T4 and t3 find by gp. TSH level was 0.01 oops as low as you can get I think.

No my body still thinks it's 35 degrees Celsius even though it's coldef outside and most people are wearing coats at this rate I will never need to wear a coat. Endocrinology appointment is Septembef 4 and can't come quick enough. At least I'm saving on the heating.

Rmichelle in reply to 6 years ago

Lol my next one is the 4th sept too!!

Yes its so much cooler here today but not much use if your body is still boiling inside, it will simmer down eventually, I used to have a cooling gel pad on my forehead and on my feet and I sat in a bath of cold water- may help you.

Hope you are resting plenty to watch that heart rate😁. Get new bloods done before your appt so Endo can work on them and not old ones, unless he will do them there on the day but I have to get mine done before I visit.👍

Rmichelle in reply to 6 years ago

Ooh don't worry over tsh mine was that too.it takes time for tsh to rise but your ft3 and ft4 levels are more important as tsh does lag behind, I think mine did not rise until 4 months later.,,😀

Valarian in reply to 6 years ago

It's the absolute pits, and at times can be pretty scary.

My low central heating bill for the first quarter after I fell ill was an unexpected bonus. I started buying big bags of icem and found long, iced drinls really helped with the thirst.

The important tests are FT3, FT4, TSH and thyroid antibidies, including either TSI or TRAb to confirm Graves' disease (the most common cause of being hyper in the UK). Always ask for a copy of the results and relevant ranges (they vary a bit from lab to lab).

If this is Graves', you are likely to remain on Carbimazole for twelve to eighteen months. Carbimazole suppresses reduction of thyroid hormone, but it can't do anything about what you've already got stored, so it can take up to eight weeks to have a noticeable effect. At some point, you will suddenly realise the worst symptoms have gone, and begin to feel much better. If you are still hyper at this point, you may have have periods of frenetic activity followed by complete exhaustion (think Duracell Bunny !) As your thyroid levels come down, you may feel a bit flat for a while, as your body adjusts to life at a normal pace.

At your first endo appointment, they will probably weigh you, then review your latest test results. and probably order additional tests. Your carbimazole dose will be adjusted if necessary. At this stage, you should be retested every 4-6 weeks, although you may not have an endo appointment after every test. As your thryoid levels come down, they will either reduce ('titrate') the carbimazole, or maintain a high dose to suppress your thyroid altogether, and provie thyroid replacement (levothyroxime). Each clinic has its own preference.

Graves' is an autoimmune condition, and can't be cured - the aim of the carbimazole is to achieve remission, which happens in approx 50% of cases. If it doesn't work, your endo is likely to suggest 'definitive' treatments such as Radioactive Iodine (RAI) or thyroidectomy - definitive because your thyroid is usually destroyed or removed, and you would then need thyroid replacement for the rest of your life. Read up about these treatments, but don't dwell on them for now - remission is the goal. If you don't achieve remission, but your thyroid levels can be kept in range and stable with a low dose of carbimazole on a permanent basis, it would be reasonable to request this rather than a definitive treatment.

in reply to Valarian6 years ago

Thanks again for your comments. Went out for a carvery last night was so hot and uncomfortable as as so t and sticky. But meal was great. It's so embarrassing sweating when hot in public. I Never mind it's life. I have another blood test on weds before appointment next week. I'm thinking of moving bed into asdas freezer isle.

I'm drinking more fluids than an alchololic right now. Non alcoholic of course as I had to give that up some ten years ago when God struck me down with epilepsy . Mind you when I was younger I think I'd had my quota for life lol. I'm ready for the endo appointment but will not be palmed off by interaction with my epilepsy meds. As neurologist has said there are no links. Raining here would love to take a shower in the cool outside. But might get arrested for gross indecency.

Rmichelle in reply to 6 years ago

Lol😁😁 how are you feeling today gig, I do admire you going out for a meal, in my earlier days I was a complete disaster as everything I held in my hands used to shake as I trembled so much, I lost count the amount of cups and plates I smashed as they fell out my hands👎.

Yes weather much cooler in shropshire- well we are only a stone throw away from each other eh.

It must be very tempting for you to throw yourself in one of the long freezers in asda, its awful being that hot and its a feeling I know well😀

Hey a while back i brought myself one of them cooling gel pillows from jml £10.99 from boots- just thinking they may help you a little, give it a whirl👍

in reply to Rmichelle6 years ago

Sent u pm didn't know that you could do it. I'm ok it's still too hot for me. I have been attacked by a vampire who has drained my blood. Went to his nurse too seven tubes worth. Perhaps she didn't like the look of me or she was doing her job. I can check results on that new patient access system tomorow and visit to consultant on Monday . Hope you are ok

Rmichelle in reply to 6 years ago

That's a lot of blood there, I don't think my body would cope with a lot of blood being taken as my very poor iron defiencey👎

I still not have set myself up for patient access and its something that I should do really but I never get around to doing it,

I think you said your appt with consultant is 4th September that's tuesday? Don't get your days muddled up and make the journey then!!😠

Lol its quite cool and breezy here today but you are still in the Bahamas, that will not last forever though😀

in reply to Rmichelle6 years ago

An update after taking carbizamole for over six weeks yesterday's blood test results are worsening . TSH remains at 0.01 normal range 0.4 to 4.9

T4 level 27 up from 25 normal level 9 to 19.

T3 level 17 up from 15 normal level 2.6 to 5.7

Any thoughts people?

Rmichelle in reply to 6 years ago

Hi gig don't panic you see Endo on Tuesday, its normal for tsh to be suppressed mine was for months, so your frees are getting higher then, you may need a higher dose of carbi which only your Endo can prescribe, hang on it there.

Gig make sure you post these on the main forum site so everyone can advise- if you just leave your results here then only I will see them or people just passing through.😀👍

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