I’ve had an overactive thyroid for many years. Only recently (within the past year or so) have I had issues with the medication killing my white blood cells. Therefore I had to stop taking it. My thyroid is currently untreated. I’m currently waiting to be referred for radioactive iodine (I’m not sure how long it will take), but my symptoms have become so severe I’m wondering if I should go to A&E.
I’ve always had a fast heart rate and struggled with breathlessness, but the past couple of weeks have been 10x worse than usual. I’m only 24 but can’t even walk up ONE flight of stairs now without having a ridiculously fast heart rate, becoming out of breath, and almost fainting. Everything is a huge struggle, even getting out of bed to go to the toilet has me gasping for air.
My heart rate is currently 130bpm at rest.
Is this reason to go to A&E? I can’t take much more of this, I feel like I’m going to drop dead any minute
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StrugglingThyroi
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No GP, endocrinologist, or anyone else wants to try anything other than radioactive iodine.
I saw a private doctor abroad and took methimazole, and the same thing happened. So I don’t think PTU will be any different. On another note I went to A&E and they told me to ‘sleep it off’. Lol. I can barely even walk up a flight of stairs, this is seriously impacting my quality of life. I’m going to start taking methinazole again regardless of the white blood cells, because I simply can’t continue like this for months while I wait for the referral. Pretty sure I’d die of heart failure long before then
Oh and I’m taking propanolol. It doesn’t seem to work on me? I actually overdosed and it still did nothing...
The private doctor who prescribed methimazole is woefully ignorant.
Carbimazole converts almost entirely into methimazole in the body - and does so quite quickly. Many papers which refer to carbimazole-induced agranulocytosis actually refer to carbimazole/methimazole as if they are two names for one medicine.
I do think you might have to consider emergency treatment but, in the first instance, try 111 (or equivalent if not available in your area).
There are other medicines which, whilst not the usual first line treatments for hyperthyroidism, could help.
Anyone who is seriously hyperthyroid is at risk of thyroid storm (where your body can no longer cope with the level of thyroid hormone). That is a true emergency with depressing statistics of outcomes.
You might think propranolol is not working, you could be even worse not taking it. It does tend to reduce conversion of T4 to T3 which will then help to fend off the worst impacts - but that could be at a level you simply cannot assess.
The NHS web page for hypo- and hyper-thyroidism includes this:
Thyroid storm
In rare cases, an undiagnosed or poorly controlled overactive thyroid can lead to a serious, life-threatening condition called a thyroid storm.
This is a sudden flare-up of symptoms that can be triggered by:
an infection
pregnancy
not taking your medicine correctly
damage to the thyroid gland, such as a punch to the throat
Symptoms of a thyroid storm include:
a rapid heartbeat
a high temperature
diarrhoea and being sick
yellowing of the skin and eyes (jaundice)
severe agitation and confusion
loss of consciousness
A thyroid storm is a medical emergency. If you think you or someone in your care is experiencing it, call 999 to ask for an ambulance immediately.
Thank you so much for your comment. Both my GP and endo previously told me that if I had this issue with carbimazole, I’d have it with PTU too. From this website, I now see that’s not the case. I pushed for PTU at first, but when they told me that I gave up on the idea. I will be demanding to try PTU now...
I had searched for specific papers about switching from carbimazole to propylthiouracil but, in the limited time I had available, did not find any. However they are different medicines. And humanbean has posted further information.
No GP, endocrinologist, or anyone else wants to try anything other than radioactive iodine.
I saw a private doctor abroad and took methimazole, and the same thing happened. So I don’t think PTU will be any different. On another note I went to A&E and they told me to ‘sleep it off’. Lol. I can barely even walk up a flight of stairs, this is seriously impacting my quality of life. I’m going to start taking methinazole again regardless of the white blood cells, because I simply can’t continue like this for months while I wait for the referral. Pretty sure I’d die of heart failure long before then
I am just adding that I had a thyroid storm last year and although it was scary I did recover and my heart is fine. You can read my story on my profile page.
Yeah that doesn’t seem to work on me either. I even took 4x more than prescribed and still felt no different! While I appreciate the reassurance that I won’t die, what I’m doing now is hardly living anyway. Not being able to walk up a flight of stairs without almost passing out is hell. I see no other option than taking methimazole again and dealing with the low white blood cells.
I do get palpitations if I over exert myself so I usually sit down and breathe through them because panicking can make it worse. I avoid coffee and coke because that can make me feel hyper. Also alcohol can affect me so I only occasionally have a glass of wine.
I don’t drink any of those things, but I appreciate you trying to help. Shame I can’t afford to go private, I’d take the RAI today if I could. Sadly have to suffer for months first. You know it’s bad when your grandma can out-walk you!
Sorry to hear what is happening. Sounds like hell! I would go back to your GP. They can chase this up and hopefully get you prioritsed so you go further up the list. I had a 130 heart rate at rest due to cancer treatment nessing with my heart causing damage......its unpleasent & my GP wasnt happy to leave me like that. Am afraid you may have to politely pester......lol.
I saw a private doctor abroad and took methimazole, and the same thing happened. So I don’t think PTU will be any different.
As helvella mentioned, carbimazole is converted into methimazole in the body. So it isn't surprising that someone who couldn't tolerate carbimazole will have the same problems with methimazole. You were effectively put on the same drug as before.
PTU ( Propylthiouracil ) is a completely different drug. People who can't deal with carbimazole can often cope well with PTU, so it is well worth trying.
For information on anti-thyroid drugs and drugs often taken in conjunction with them, see this link from the BNF - British National Formulary :
There are other beta blockers besides propranolol, although I don't know how doctors choose which one to prescribe. Perhaps you could be prescribed a different one, or perhaps you just needed a higher dose?
Wow thank you so much for educating me. My GP and endo both said If I had issues with carbimazole, I’d have the same issues with PTU. And I did push for it, but when they told me that I gave up on PTU. I’m so angry these people are giving me false information and gambling with my life. I will be going to my GP first thing tomorrow morning and demanding PTU!
I notice you mention RAI as a treatment for your thyroid condition. If you can't get your thyroid under control another option is to have your thyroid actually removed. Obviously RAI is cheaper and more convenient than thyroid removal for the NHS and the hospital, but remember you have to live with the consequences for the rest of your life, so their convenience should not be a consideration for you. I believe that the hypothyroidism created by RAI is harder to manage than the hypothyroidism created by having the thyroid removed (based on what I've read in posts on this forum).
If you want to do some research into hyperthyroidism this website is well worth looking into, and it has loads of articles and resources to read as well as blog posts :
There is a forum you can join, but I don't know how busy it is.
Have you considered looking into alternative medicine to see if anything you can buy without prescription could help? I have never suggested this to anyone before, I must admit, and I'm quite shocked I'm doing it now. But if doctors have effectively abandoned you for months, I don't see that you have much choice.
An example of treating hyperthyroidism with non-prescribed alternatives is discussed here :
High doses of iodine were a treatment for hyperthyroidism in the past before the current standard drugs were developed, but I don't know anything about the use of iodine personally. (I've never been hyperthyroid.)
Please be aware that I have absolutely no medical training at all.
You are clearly very unwell and I understand you will be going to the doctor and asking for PTU medication and once you start on the AT drug your symptoms will calm down.
Do you have Graves Disease and proved positive for the TSI/TRab antibody blood test ?
I know there's a lot to take in, but please do your research, and don't jump at RAI solving your health issues.
It is now acknowledged that there is no known long term damage from staying on the AT medication and this has to be the first and safest option for anybody to consider.
I'm with Graves Disease diagnosed in 2003 and had RAI in 2005 and deeply regret this treatment option, I now have to manage Graves lingering symptoms, thyroid eye disease and hypothyroidism, and finding no help within the NHS am self medicating and having to buy my own thyroid hormone replacement.
To be honest I don’t think they’ve ever tested my antibodies, but I’m not sure.
I’d love to be able to take PTU forever, I‘ve always been extremely against removing or killing my thyroid- to the point that I even went to an endo abroad (!) just to see if it would be different without the bias UK doctors seem to have.
My endo actually told me (before I had the issues with agranulocytosis) that I can’t be on AT drugs forever, that i can only be on it for 2 years and if my thyroid doesn’t go into remission I have to remove it. Just shows the ignorance.
It will be a struggle to get my GP to prescribe PTU, they’re adamant that I will have the same reaction as I do to carbimazole. But there’s only one way to find out right?! He’s going to have to give me something, otherwise I will refuse to leave his office! I can’t carry on like this.
I’m also starting to have symptoms of thyroid eye disease, my optician even commented on the fact that my eyes are extremely dry. It’s so frustrating to be left like this for months.
It seems that PTU if my last hope. If it also gives me issues with my white blood cells, I don’t think I have any other option than RAI. Which sucks for me because I’ve always been adamant I wasn’t going to kill or remove my thyroid... but if my only options are carrying on like this or removing it, the latter is definitely the lesser of two evils
RAI is the worst treatment option and as you already have eye issues the RAI will exacerbate your symptoms and make your eyes much worse -
So in fact you can't have RAI and it should not be considered suitable or suggested to you as an option.
If you need to take such drastic action surgery is the better option anyway as it is a cleaner more precise method and with the removal of the whole gland the antibodies are removed as well.
Let's face it neither option is good, either drink a toxic substance that goes throughout your whole body and is not just taken up by the thyroid, or have your throat slit open !
Staying on the anti thyroid medication has to be the most sensible and safest choice and it is now acknowledged that there is no known long term damage to this treatment option.
The links given above by humanbean are excellent - and suggest that you go prepared to the doctor on Monday. Let us know what happens, and try and take it easy, I just find it unbelievable that you have been left high and dry by the medical profession.
How is staying on the anti thyroid medication the most sensible choice if it kills my white blood cells? I’m sure PTU will do the same thing, since I’m literally cursed and everything goes wrong for me in life...
If PTU does give me the same issues, which I suspect it will, I will have no other choice than RAI/surgery.
This is assuming my doctors will even prescribe it, which is HIGHLY unlikely
Unfortunately, no, staying on Carbimazole is not an option if it is affecting your white blood cells. As others have said, PTU is still worth trying though.
I’ve put up a new post. They didn’t take me seriously at A&E last time, but they didn’t have my blood test results then. They just knew I was overactive but not the extent of it. I wonder if they’d take me seriously if I go there again?
I had mild eye disease but still had RAI, I was given steroids for 12 weeks and didn't have any problems at all, don't be put off RAI if that's what you want.
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11/7/19 As usual GP stated I was normal not a surprise, also no labs on my Vitamins? Bpm resting 67 - any kind of activity 156 in a flash! 
Untreated Hypothyroidism
Help advice needed
