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Graves disease sufferers - can carbimazole make you feel like sh*t?!

(25 Posts)
MrsMiniversCharlady Tue 30-Oct-12 09:34:10

Recently diagnosed as hyperthyroid which was a bit of a surprise as I felt absolutely great! No bothersome symptoms, sleeping well, heaps of energy etc.

I started carbimazole about a week ago and now I feel pants! Really, really tired - falling asleep on the sofa, struggling to stay awake driving home from work, exhausted at work. I also have had a headache for a couple of days that I can't seem to shift and I feel achey. Basically I feel as though I'm about to come down with something, but nothing has materialised!

Could this be the carbimazole? I go back to the endo in 10 days, but so far I'm wishing I'd never been to the doctor in the first place angry If it's the carbimazole will I start to feel better at the some point?! Today's my day off from work and I'm dreading going back because I feel so awfully tired. sad

Lottapianos Tue 30-Oct-12 09:40:25

Sorry to hear you're struggling sad I don't remember any side effects at all but maybe your dosage is too high. Carbimazole inhibits thyroxine so if you have too much of it, I guess it could make you feel like your thyroid is underactive, which would explain the exhaustion you're feeling. Could you go back to GP before you see endo and discuss lowering the dosage?

MrsMiniversCharlady Tue 30-Oct-12 09:48:18

Thanks for your reply smile I am on 20mg twice a day, which does seem like a high dosage to me, considering my T4 levels were 42, which I don't think is massively high?

No chance of going back to the GP without taking a day off work and as I'm in a new job I don't much want to do this.

Also, I'm not convinced that I've gone hypothyroid as I'm still tachycardic (I'm a theatre nurse, so easy to check on a regular basis!) and still perfectly warm in our cold theatres confused Also, I've been feeling like this pretty much since I started taking the tablets, whereas I think it takes a while for stores of thyroxine to be depleleted.

Lottapianos Tue 30-Oct-12 09:51:03

I am no expert at all but I think that does sound high. I was on 20mg once a day and they cut that down to 10mg at one point. Getting to the GP is a PITA. Can you get to bed early or have you got DCs etc to look after?

MrsMiniversCharlady Tue 30-Oct-12 09:57:55

I've been going to bed at 10pm and sleeping until 9am at weekends but in the week I generally have to be up at 5.30am for work shock I might try to get to GP but I suspect they won't want to fiddle with the dose.

I might try and phone the endo before my appointment if it doesn't improve. This is miserable sad

Lottapianos Tue 30-Oct-12 10:00:52

Hope things get better for you MrsMiniversCharlady sad Post on here anytime if you need a good rant x

efffy Tue 30-Oct-12 10:08:57

Hi op, I have graves too. I also struggled with carbimazole I had taken ptu (propylthirouacil) previously whilst pregnant when i was diagnosed and it was fine. I managed to get back on the ptu -after trying with carbimazole- and been on it ever since (8 yrs!). Think they may be reluctant to prescribe due to the relatively high cost of the ptu but could be worth a try?
Good luck!

efffy Tue 30-Oct-12 10:10:55

Sorry that should've read propylthiouracil - it's bit of a mouthful!

KurriKurri Tue 30-Oct-12 10:58:22

In all honesty (and I don't wish to depress you) I would say it took a good eighteen months for my Graves to be sorted out to the point now where I feel reasonably stable and well. There is an awful lot of dosage juggling to be done initially with thyroid problems, and it does sound as if yours might be too high (although extreme tiredness can be a symptom of both over and under active T)

Also I think they might say that a week is too short a time for your body to have adjusted to your treatment - it might take a bit longer (about 3 - 4 weeks IIRC before I started feeling results).

But certainly if you are feeling unwell phone your surgery and book a GP phonecall if you can't get in - they will be able to explain things better or make adjustments.
Are you on beta blockers as well atm? - I carried on with mine in conjunction with the carbimazole - having them or not having them might be a factor (just guessing obviously - I don't have any medical knowledge, just my own experience)

I sympathise enormously - thyroid problems are the absolute pits, they make you feel so ill, I hope you get something sorted to make you feel better soon smile

(I will add, because it might be of interest to you, that my problem was eventually made stable most successfully by Radioactive Iodine treatment, - which you may or may not have been offered. Of course this may be something you don't fancy having, or is not suitable for you - but just thought I'd mention it smile)

Lottapianos Tue 30-Oct-12 11:06:13

I also had Radioactive Iodine treatment and would recommend it very highly. I think they only offered after about 2 years of medication though.

Walnutcakelover Tue 30-Oct-12 11:33:24

Hi mrsmini I also had graves back in 2009. I have been of carbimazole for 14 months now, so I guess I'm still in remission. I was on carbimazole for about 18-19 months. I started of on 20mg, then went to 10mg after 9 weeks and was on 5mg for about a year. When I was on carbimazole, I felt really crap, i was always feeling angry, anxious, short tempered and bloated. If you were not having symptoms, then maybe you are on a high dose. I was having all the crap symptoms before I got diagnosed.
kurikuri how come you had rai? was it because your graves returned?

KurriKurri Tue 30-Oct-12 11:53:11

Hi walnutcake - I was given carbimazole initially, but told that they tend to give it for about 18 months, then stop, see if things get bad again then try something else. Or I could have the one off treatment of the RI, - and after discussions with my consultant that's what I chose - mainly because I was so fed up of the 'try this, wait until you feel awful again, try something else' pattern I'd been going through - my weight was all over the place, I'd felt ill for a long time etc etc. so I opted for the RI.

It wasn't too hard for me, because I don't have small children - so the keeping away from people was fairly easy - obviously much harder if you have young family, and if I did have young ones, I probably wouldn't have had it.

But carbimazole does sort things out for some people, and it sounds as if you are doing well smile - so don't read anything into my experience (I'd been ill with another serious illness for the previous 3 years before the thyroid problem started, and I was just thoroughly fed up of feeling awful, and wanted rid of it!)

TodaysAGhoulDay Tue 30-Oct-12 12:18:26

Hi MrsMiniver, I have Graves, and I'm on 50mg Carbimazole a day. My friend had Graves, and found out she was allergic to Carbimazole, she was scratching to take her skin off. I found when I first started taking Carbimazole, that I did get tired more than usual, the GP said it was just my body trying to adjust to a lot lower amounts of thyroxine. Give it a month or so, it takes a while for your body to readjust.

Walnutcakelover Tue 30-Oct-12 12:25:16

Thanks kurikuri for the reply. Thyroid problems are really really crap. I am always paranoid that the graves will be back, but I still have regular blood tests to keep a tab on things.

MrsMiniversCharlady Tue 30-Oct-12 12:31:50

Thanks for all your posts. It's nice to know I'm not alone, although it's a shame so many of us have to go through this sad

I am increasingly thinking that I'm on too high a dose and what is really frustrating is that it feels as though I'm taking medication for a problem that, for me, didn't really exist. I know that eventually I probably would have felt the effects of being hyperthyroid, but until I started carbimazole I felt fine (grumble, grumble). I'm definitely going to see my GP if it doesn't improve and at the very least question the high dose I've been given when I see the endo.

I'm not at all keen on the radioactive iodine because of the disruption it would cause to my life. I also have hyperparathyroidism, which I'm supposed to be having surgical treatment for, so if the hyperthyroidism doesn't get better with medication then I will probably get my thyroid removed at the same time.

HazleNutt Tue 30-Oct-12 12:36:46

20x2 dosage does seem high - my T4 was around 42 as well if I remember correctly and was on 20 once per day only. going down to 15 in a few weeks. It made me feel better initially, but started to struggle with hypo symptoms soon.

As I didn't like the odds, I eventually opted for surgery.

digerd Tue 30-Oct-12 12:56:48

I started treatment with Carbimazole, when I was 25, and had suffered terrible symptoms long before it was diagnosed, including a pulse rate in sitting of 160.
I do not know what dosage they gave me, just remember ( long time ago) that it was 3 tabs 4x a day. I was told it is 3 months before the effects develope. But in 10 weeks I had blown up like balloon and put 2 stone on, ( I had previously lost 2 stone) had painful cramps in muscles I did not know I had and was told I was slurring my words and was I drunk????

Gp said I should go back to Endo and dosage was reduced. Mine wasn't called Graves Disease though, but Thyrotoxicosis. Was very overactive.

MrsMiniversCharlady Tue 30-Oct-12 12:59:01

I think she put me on a high dose because she felt I was clinically very thyrotoxic (goitre, hot to touch, tachy) despite feeling well. My other gripe is that faff of getting regular blood tests done. I work in a hospital so I am surrounded by people who can take blood (I could probably do it myself at a push!), but it will cost them to send it off to my own hospital. I phoned occupational health to ask if they would process it rather than take a morning/afternoon off work every month or so. They wanted to charge me! I even said, "but I'm going to take time off work otherwise, wouldn't it make more sense for you to do it?" Still, no apparently. How stupid is that?!

digerd Tue 30-Oct-12 12:59:15

Hazelnutt

Wish I could have opted for surgery at 25, as didn't have it until 29. Left it all up to the specialist

HazleNutt Tue 30-Oct-12 13:03:19

I actually insisted. I did a lot of research about the success of treatment and relapse rates. Also, I was 33 and we were about to start TTC when I was diagnosed - pregnancy with Graves has certain risks and there was very conflicting info available about the drugs and pregnancy.

So had the surgery in May, now feel miles better (and am also pregnant) smile

digerd Tue 30-Oct-12 13:16:47

Hazelnut

Congratulations, you made a wise informed decision there. After the op ( in 1974) I had no more problems, until 1996 when my thyroid became just slightly underactive and now take 50 mgs of Thyroxine. Did not have any symptoms though.
Good luck

digerd Tue 30-Oct-12 13:19:40

MrsMini

Did you not have the trembling fingers, mine actually shook, blowing up in the air over nothing, crying, being extremely irritable, and I was so paranoid, thought I was going mad.

MrsMiniversCharlady Tue 30-Oct-12 13:34:16

Not that I noticed until I went to the GP about my weight loss and she said I had a fine hand tremor shock

digerd Tue 30-Oct-12 13:40:29

MrsMini

Sorry, just read the beginning of your thread again and you said you felt absolutely fine, so my questions are anwered.

Your tiredness is IMO due to your thyroid producing less thyroxine, but how annoying when you felt fine before.
But I also had a goitre which developed after all my horrible symptoms, and my resting pulse rate of 160 was definately tachy, and I was sweating when everyone else was freezing. I also became very breathless and weak before my goitre and the bulging mad eyes developed.

I did read that the younger person tends to get more and intense symptoms that an older sufferer. I was only 25, and you 33, so not that much difference. .

digerd Wed 31-Oct-12 14:32:27

Mrs Mini
Sorry again, got your age mixed up with Hazelnutt.
It does sound as if you have what I had, but was I not diagnosed for a couple of years ,and GP only recognised it when my Thyroid swelled up and my eyes bulged. He said it had been developing for years, so hope yours has been diagnosed early.
I was really messed about with the dosage being much too high for me and got terrible cramps everywhere, slurred my speach and people thought I was drunk. But was in 1970.

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