Damn, I knew it was too good to be true. My thyroid came under control with carbimazole within a matter of weeks. I thought that was too easy! I know have neutropenia. My neutrophils are at 0.1 (range 2 - 7.5), which doctors have assumed is caused by the carbimazole.
My thyroid levels on Sunday 15 March were
TSH: < 0.005 (0.27 - 4.3)
FT3: 6.6 (3.1 - 6.8)
FT4: 21 (12 - 22)
Now, after only one week off carbimazole they’re
TSH: <0.005
FT3: 21.6 (3.1 - 6.8)
FT4: 47.9 (12 - 22)
That’s a huge increase after only 7 days off carbimazole! God knows what my bloods would look like after months off it. I’m still taking 80mg propanolol twice a day.
The plan now seems to be to keep me off carbimazole to avoid neutropenia, and have radioactive iodine. The problem is that my appointment is 2 months away! And I’m not really willing to let my FT3/FT4 continue to climb more than they already have. I was barely able to function before starting carbimazole, when my FT3 was 46.
I’m considering taking carbimazole anyway against their advice, and just being very vigilant about infections etc.
Any advice from someone’s who’s experienced this or is knowledgeable about it?
Thank you in advance
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Hyperbee
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Well you know my feelings on RAI already so I'll not repeat myself.
Did you take a look at the Elaine Moore website ?
There is an alternative - Propylthiouracil, commonly referred to as PTU, and I read of many people on here switching, if Carbimazole doesn't suit them.
However, I still feel that the AT drugs are the safest option at a low dose, long term.
You're results showed you back down in range, surely then, a lower dose of AT should have been considered rather than stopping completely and in all honesty the doctor should have known that this would happen, and he should have suggested the alternative, PTU.
I just had a look at that website, concerned to see there is a proven risk between RAI and cancer. I specifically asked if this was the case and was told that there are NO side effects. I thought that was a bit strange, to be told that drinking a radioactive substance has no side effects at all...
Apparently PTU has the same side effect (agranulocytosis) so it’s not worth trying, according to my doctor.
The 2x 10mg daily carbimazole dose (which I believe is considered a low/maintenance dose) decreased my neutrophils from 0.8 to 0.6 in 6 days. So my doctor then suggested stopping it altogether, and waiting 2 months for RAI. I knew my thyroid levels would rise, but I had no idea it would happen so quickly... I can’t imagine going back to how I was before, with a FT3 of 46 and barely being able to climb a flight of stairs at age 24!
All the symptoms are back now.
I’m currently in the hospital receiving GCSF injections for the neutropenia, and antibiotics as I have an infection. Even they have told me to stop carbimazole but offered no alternative. I’m secretly taking it anyway.... If they’re not going to offer me an alternative, that’s the only thing I can do. I won’t leave my thyroid untreated for months, that’s ridiculous and inhumane.
Of course the fact that I’m still taking carbimazole isn’t helping my neutropenia treatment, but as the saying goes ‘you gotta do what you gotta do’.
If doctors all had thyroid issues, I think the way they treat thyroid patients would change drastically
I had to have my thyroid removed due to it being toxic I was put through as an emergency and given RAI option which I automatically turned down I felt like that treatment was too near the breasts. I chose total TT by operation but my endo asked why I would not consider RAI so I told him to which his reply was their is no evidence that it gives you cancer I said "it only takes that one person everyone is different" I got my way I'm I'm very pleased but not coping well on levo as I didn't do well on anti thyroid drugs either... 🙄
Have you considered taking T3 too? You’ll most likely have to source it from a different country as the UK just doesn’t care. I’ve decided that if I’m going to remove my thyroid, I will find a way to source T3. Apparently it’s relatively easy to get online and people feel so much better on it.
Can I ask, is your thyroidectomy scar very big and noticeable? Does it eventually fade away to the point of almost not being able to see it, or will it always be obvious? And did it affect your voice at all? I’m definitely worried about that. As the vocal chords are so close to the thyroid. So the choice is between a visible scar + hoarse voice for life, cancer, or constant neutropenia! What excellent options!
First my gp was sending me bk to my endo he said he would look in to T3 for me but unfortunately with this virus my appointment has been deferd 🙄 my gp said I just have to go with it and take the levo eventho it's not working 😢... My scar is fantastic it's very hard to see it, if I apply a bit of foundation you can't see it at all.. ☺️ My surgeon was fantastic and looked after me for as long as he could.. I did have a sore throat after my op and did loose my voice for a time but its OK now.. My op was may last year.. The only thing I'd say was not nice was the iodine I had to take for a month before the op but it was worth it as I was very ill and couldn't keep my thyroid.. I was only in hospital one and a half days I can't say I would have got up and done my daily things right away I was tired and groggy but that was the anesthesia after about a week I was up but I have ME.. Fibro and other illnesses so I've never felt really well since 2004...but I was surprised how quickly I recovered.. Its a pity but I'm not good on synthetic meds hence the anti thiyroid meds not working for me same with the levo... 🙄
The advice in the event of neutropenia (or even if it is even suspected, ie you have a sore throat or mouth ulcers while taking carbimazole OR PTU is to stop taking them completely, straightaway. PTU is an alternative in the case of an allergic reaction, not this.
This is drummed into us at every appointment, and quite often we are given cards or letters to show GPs (or even A&E staff) in the event we develop sore throats etc, because we are supposed to seek urgent blood tests.
I get that you have had a bad experience with RAI, but both neutropenia and thryoid storm may have devastating effects, which may render the feeling that 'AT drugs are the safest option at a low dose, long term' irrelevant. Hyperbee was posting from her hospital bed.
I can relate to anti thyroid drugs not working we are all different I found they really affected me badly yes it started with a very sore throat then vomited them back but gp put sore throat down to thyroid and kept telling me to take them I'd been on carbizole first ad same side affects then same on PTU but because gp insisted I take them they weren't working and I went into thyroid storm was in hospital for 2 weeks I had to have emergency TT I was lucky I got to hospital in time with thyroid storm would not ever like to go through that again😢
Could you please call me on 01255 820407 in around 10 minutes. I have been contacted by an eminent endocrinologist who has said he is worried about you and is willing to have a chat with you this afternoon.
Hi, if you do get to talk to the endocrinologist please can you tell me what she/ he said as I’m in almost exactly the same boat, neutropenia and still on carbimazole for the time being, until repeat bloods in two weeks. Thanks
I've just spoken to the endo and he says you should most definitely not take carbimazole or PTU as this will decrease your white blood cell count and if you then get the coronavirus you will be extremely ill or worse.
Thank you for sharing your experience. I also have a goitre and felt like I was having a thyroid storm on multiple occasions before starting carbimazole. My T3 was 46 and I could barely even walk up one flight of stairs. I’m only 24!
Thank you for the tips. Technically I’m not supposed to be taking carbimazole anymore by the doctors recommendations. They plan to just leave my untreated for 2 months before having RAI
Hey there, so you will not have anything for you Hyperthyroidism, is this correct?
If this is the case, please hear me out, I am a critical care specialist nurse and I have looked after someone your age who went into thyroid storm and then multi organ failure and things did not turn out well. I have had severe thyroid toxicosis, and had cardiac complications. I don't want to scare you but I am also waiting to have radio iodine therapy and by current guidelines you stop taking the meds if you are stable and EUTHYROID two weeks before the treatment NOT TWO MONTHS.
So, don't panic, you need to be seen by an Endocrinologist ASAP please. You need some treatment. Otherwise you need to go to A&E.
I’ve heard that PTU/agranulocytosis statement from 2 endos and 1 GP, it seems that the answer is always RAI before making sure every option has been explored. I’m not sure how I’d go about getting it if no one will prescribe it
Hyperbee - just in case you weren't aware of it... Lynn Mynott, who has been asking you to call, is the person who set up Thyroid UK (the charity which runs this forum), and she is the person in charge.
Really glad you got some additional input Hyperbee via lynmynott 's contact. Hope you are getting better.
It does worry me that the attitude on this board is so vehemently anti RAI, to the point that people may feel discouraged from admitting they are considering it. I accept that some people have had a bad time with either the treatment itself or getting their thyroid levels stabilised afterwards; however, I personally know several people who have had RAI and are very happy with their decision.
As this episode shows, anti-thyroid drugs also have their downsides, which never entirely disappear over time. The threat of thyroid storm is also devastating, and those of us who have been really hyper (I'm not talking about thyroid storm here, just the sort of experience many of us will have gone through durung the early days of diagnosis) will never want to go there again.
For many of us (including myself), the idea of long-term, low dose carbimazole may seem to be the least worst option, but it isn't right for everyone, and although the risks may seem remote, if they materialise they can be devastating. Although it's good that we help people understand their options, I think we need to be careful that we are presenting a balanced view, and allowing them the space to made a personal decision without feeling they will be thought wrong, silly, whatever, for doing so.
Thank you for your comment. I do agree that this board is definitely anti RAI/thyroidectomy... I actually posted before about this exact issue, and said I was considering RAI. Every response I received was telling me not to do it, that hypo is much worse than hyper, that they might find a cure for Graves one day and I will have removed my thyroid for nothing, etc. I’ve always been very against removing my thyroid, partly because I’m worried about symptoms as I’ll only receive T4 and no T3, and also because the ‘hypo makes you obese’ stories terrify me. I know that sounds vain but becoming obese at a young age, without being able to do anything about it, would definitely destroy my mental health.
So when people immediately tell me not to do it, even though I know it’s probably what’s best for me, I’m very quick to take that advice.
This is the 4th time I’ve been in hospital with neutropenia within the past year. So far I’ve just been dealing with it by stopping it until my neutrophils are back to normal, then immediately starting it again. I know this isn’t the best plan and my symptoms have been hell, but if keeping your thyroid is supposedly better than removing it I thought I was doing a good job of that.
It doesn’t help that my endo in the UK (I’m in hospital in Turkey at the moment) is absolutely useless. Instead of talking to me and making decisions together, he simply says ‘stop taking the carbimazole and let’s remove your thyroid ASAP’. He never answers my questions or educates me, so as you can imagine I haven’t been very keen on taking his advice.
I did have a thyroid scan and consultation for RAI last year, but was spooked when she told me there are NO side effects at all. I told her I’d read that it increases your risk of cancer, and she said (and I quote!) ‘well 1 in 3 people are going to get cancer at some point in their life anyway. If you get cancer how will you know if it was from this or from something else?’ NOT reassuring in the slightest! I ended up saying I want to speak to my endo before going ahead with it, but she said she was going on holiday in 2 days so ‘you have to do it tomorrow’. I clearly wasn’t fully convinced and she was seriously pressuring me without allowing me to speak to the endo first. I ended up thinking F THAT and not only didn’t go back to see her, but didn’t go back to see the endo either. That was in July last year, since then I’ve been self medicating as best as I can with carbimazole.
I do think at this point my best and safest option is RAI or surgery, but I’m still worried I’ll end up being one of those people on here wishing I never removed it. Although in my case I don’t really have much of a choice...
Thanks for your insightful comment and sorry for the rambling
I also wanted to ask how are your eyes? Do you feel your eyes any different?
I was supposed to have RAI a month ago in St. George's NHS Trust, but because I felt a pressure on my eyelids and my eyes are protruding a bit, the nuclear medicine department said it had to be postponed until they know the pressure in my eyes is normal as RAI can cause eye thyroid disease to become worse. My endocrinologist is great and his name in Dr. Leighton Seal, on the internet, in BUPA, a private hospital his secretary contact is 07507054134 also there is an email if you need one.
Also, I have been neutropenic since I have been diagnosed it goes up and down and I am still on PTU and beta blockers.
My neutrophils are at 0.1 and aren’t increasing despite GCSF injections, which is obviously expected as I’ve been continuing carbimazole...
I saw an endo today (not my regular endo, I’m abroad so this hospital/staff is all new to me) who again told me that PTU has the same side effect so it’s not worth trying.
I had planned to get back to the UK soon and see my regular endo to be referred for RAI yet again, which is a 2 month waiting list (assuming coronavirus hasn’t caused it to increase).
But the endo from today suggested that as soon as my neutrophils increase and my infection is gone, we should ‘decide together on RAI or a thyroidectomy’. I was quite surprised by the ‘decide together’ part, as my UK endo simply orders me to have RAI against my will lol.
I’ve been hospitalised with neutropenia 4 times within the past year alone, so at this point I do agree that a permanent solution is maybe needed. I’ve always been against removing a vital organ especially considering the thyroid itself isn’t even the problem, but at this point I think it’s probably in my best interests to do so. Constantly having neutropenia is not only a huge inconvenience but also dangerous, even more so with coronavirus going around now. I think it’s time to bite the bullet and just get this sorted out once and for all. I tried my best to keep my thyroid at all costs but sometimes you just have to let go of toxic relationships... lol
I guess it’s better to be posting on here in future saying ‘being underactive sucks!’ rather than dying from neutropenia. Only slightly though
Thank you for all your help and advice, it’s highly appreciated. I wish my body had cooperated with me but hey I already don’t have an appendix, thyroid next, I’m doing a good job at removing things!
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Tipped into hyper on thyroxine?
Hyper to hypothyroidism
Hyper thyroid 3months later on carbimazole. Blood test 
palpitations and hyper/graves
