I started on carbimazole 6 weeks ago. I saw consultant and now on levo.
Recently I got a sore throat so stopped the carbimazole as instructed by her if this happened and to immediately get a blood test. Still waiting to hear & feel dreadful - still have sore throat, and very very tired/low.
Should I stop talong the levo too until get feedback on blood test?
Anyone else been told to stop the carbimazole if you get a sore throat?
My Gp never mentioned this & nurse at GP unaware of any of it.
Any advice really appreciated. Thank you !
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caroll66
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Just want to make sure I am understanding your history here.
Six weeks ago you were diagnosed hyperthyroid with, I assume, a Free T4 test result of 38.
You were prescribed Carbimazole which you have been taking.
So when did they prescribe levothyroxine?
To me, it is surprising that you have gone from no medication to what sounds like "Block and Replace" in six weeks. The idea is that you continue taking enough Carbimazole to totally suppress your own thyroid, and get your thyroid hormone by taking the levothyroxine tablet.
I am afraid that I do not know if you need to stop the levothyroxine immediately or you might need to wait a day or two. This is something your doctor should have advised and I simply do not have the experience or knowledge to do so.
If I were you, I would ring the NHS emergency number and ask them. If necessary, go to an Accident and Emergency unit. Whatever, don't stay at home doing nothing just hoping you might start to feel better. If you are feeling bad, you could be suffering agranulocytosis poor one of the other serious side effects of Carbimazole. They all need you to be seen and treated (if necessary) urgently. I rather assume you had your blood test on Friday? If so, then waiting till Monday is too long.
If you are able, please come back and let us know what is happening. I won't b around but others will be.
The documentation for your medicine says something like what I have pasted below. (This is from the Mercury Pharma product but all makes say almost exactly the same.) The doctor should have told you - it instructs doctors to inform patients right there. If the nurse didn't know, she should have checked. This is readily available information. They do not mess about and use words like "immediately" and "straight away" unless they mean them.
Patients should always be warned about the onset of sore throats, bruising or bleeding, mouth ulcers, fever and malaise and should be instructed to stop the drug and to seek medical advice immediately. In such patients, white blood cell counts should be performed immediately, particularly where there is any clinical evidence of infection.
Stop taking Carbimazole and see a doctor straight away, if you notice any of the following side effects:
• Any infection such as a sore throat or mouth ulcers Fever
• Unusual bruising or bleeding
• Feeling unusually tired
• You are feeling generally unwell or think that you may have an infection. Your doctor may need to do some tests to check for something called 'bone marrow depression' before you start your treatment again.
Hello Helluva, on 22 May I was prescribed Carbimazole. On 8th June I was prescribed the Levothyroxine by a consultant endocrinologist who looked at my blood tests taken on 4th June.
I stopped taking the carbimazole on 18th June because of sore throat, blood test occurred on 19th June. Not heard back yet.
Part of me feels that if you were suffering from agranulocytosis you would be feeling very ill indeed by now, but I’m not convinced that’s a risk you can afford to take !
If your throat is feeling very sore, you feel unwell and have any sign of blistering or ulceration in your mouth, you need to get to A&E straightaway.
Most of us have agonised about getting tested when we get sore throats (and I admit that I never have). However, you are new to carbimazole, presumably on a high dose (both of which increase the risk, although it never goes completely), plus it isn’t exactly high sore throat season .
Re the levo - your endo should have explained this, and your GP should have checked when you asked for a test. At the very least, try calling the nhs on 111 ?
Once upon a time, I might have believed that if there were a "bad" result, they would chase you. Afraid not any more. Agree with ringing the NHS. (I didn't put 111 because that doesn't apply in all parts of the UK.)
We’re all told to stop taking carbimazole and get immediate blood tests if we get sore throats. Your GP and nurse may simply never have called me across the issue before, as issuing the warnings will have been down to the endo,but the risk of suppressed white cell count is clearly documented in all information about the drug, and your pharmacist should also be aware, or able to see the information very easily. As Helvella says, the nurse could and should have checked this.
In my time here (about twelve months) I don’t think anyone on B&R has ever asked about this, and I’m on titration myself. I would have thought that if you stop one, you should stop both (or at least stop the Levo after a couple of days) as the carbi is meant to stop natural production of thyroid hormones, which are then replaced with Levo, and stopping one without the other will mean they are out of balance. However, I’m not sure, and you urgently need to check. I would follow Helvella’s suggestion, although you could also see whether there is a pharmacist on duty in one of your local supermarkets.
You say you are waiting to hear about the test, when did you have it ? It’s supposed to be an urgent request. How bad is your sore throat, and are you feeling generally better or worse ? (This may not be much of an indicator, as your thyroid levels may be elevated again).
The good news is this is a fairly rare side effect, so don’t panic. However, you do need to find out what’s going on pretty urgently.
Thank you both. I was unable to see a pharmacist today but my throat is not getting worse and I will go to see my gp first thing and ask what to do. I have not taken the levo today. Glad I found this forum!
Hi caroll66, my husband is hyper and he developed neutropenia on Carbimazole as well as on an alternative drug PTU. He had to stop the medication and after 5-7 days the white cells have gone back up so he restarted again. When this kept happening I contacted Elaine Moore who advised that the white cells usually drop when the drug dose is too high. She was right though as my husband started doing ok on 50mg PTU and his white cells stopped dropping. You obviously might not have neutropenia despite of having a sore throat. Good luck x
I went to gp surgery and got print out of blood tests from surgery receptionist. Normal. Spoke to 2 x pharmacists there who had no advice to offer about his to restart the carb & levo. Doctor did call me though and told me to start retaking carbimazole, go for more bloods in 2 weeks at which point they will re start the levothyroxine if I’m doing ok back on the carb - as I’ve had 6 days off it now with all the delays. He was very helpful and said I must call up the next day for blood results and stress the importance to nurse if I get sore throat. He said I could miss 1 day if necessary of carb while I got bloods checked....no more.
Throat better.
It’s been a learning experience and I’m glad I found this forum! Thank you.
Thanks for letting us know - and I am glad you have had some support.
Afraid I am not impressed by "stress the importance to nurse" - it is not your job to know and, whilst feeling dreadful, carefully and clearly explain to a nurse who was - it seems - unable to look it up for him/herself.
I agree, I would feel tempted to suggest to the GP that it would be better if they explain to nurses that if a patient arrives saying they've been told to get immediate blood tests under certain circumstances, and they aren't familar with the condition/medication, they should a) look it up (it really isn't difficult to find the info about carbimazole !) and b) if still unsure, consult a doctor !
Would be good to know what your endo says about the levo, Carole. I'm sure the query about stopping levo when on B&R will come up again.
So the same nurse told me that my tonsils didn’t appear to be swollen / I told her I’d had them removed 30 years ago. It’s not funny I know but now it’s laughable. At the time I was frustrated. I will let you know what endo says about the stopping the levo and restarting it possibly 2 weeks later - which will depend on blood tests in 2 weeks time.
one of my practice nurses kept saying that she didn't understand why `i was having such frequent blood tests, as it wasn't at all usual with thyroid disease, and she didn't think the labs would process them, especially TSH and FT3. (tests were monthly at the time). Of course, the tests were processed as per the endo's request.
By the second time, I was better-informed, and mentioned it to the GP, who said she'd have a word. Turns out this particular nurse was maternity cover anyway. Practice nurses don't have a lot to do with hyperthyroid patients, and this one at least was basing her comments on experience of hypothyroid patients.
Interesting. I haven’t met anyone yet in person who has hyper but I’m hoping this 2nd GP i spoke to on Monday is more familiar. The one who prescribed me the carb initially never warned me of the sore throat issue and the nurse was also holiday cover and had never heard of the reason for blood tests, nor did the practice pharmacists. Now I know that I need to find out more myself through here.
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