I’m overactive and took carbimazole at first. Just over a year ago it was discovered that my neutrophil count was at 0, so I stopped carbimazole and was referred for radioactive iodine. I declined as I wanted to exhaust all my options before doing something that drastic.
I went to a doctor abroad who had me try methimazole. People on this website have told me it’s the same thing as carbimazole... so of course it lowered my neutrophils again.
Here I am now with a diagnosis of thyrotoxicosis. My free T3 is >46 but I have no reference ranges. The hospital where I did the blood test called my GP today and gave him that value, but they haven’t sent him the results yet.
I’m really struggling in my day to day life. Even walking up ONE flight of stairs has me gasping for breath and fearing a heart attack. I now also have symptoms of thyroid eye disease- severe pain in the eyes, dryness, grittiness, sensitivity to light.
I saw my GP today asking to try PTU, and also requesting steroids for the TED. He declined the steroids and told me to use eye drops! Groundbreaking! Apparently they won’t bother to do anything until my eyes are popping out! WTF IS THE POINT? IT WILL BE TOO LATE THEN!
He prescribed me carbimazole, despite the fact that it’s been proven countless times to lower my neutrophils. I specifically requested PTU due to the neutrophil issue. He said he has no experience with it and therefore isn’t comfortable prescribing it. He said even if carbimazole lowers your white blood cells that’s not a reason to stop it permanently, only temporarily until the neutrophils are back to normal and you can start taking it again... He did an urgent referral to the endocrinologist for raioactive iodine, which will take weeks.
I went to A&E a few days ago (before my blood test results were known, I simply told them my thyroid issue is currently untreated) as I simply can’t continue living like this. They just told me to ‘sleep it off’ and sent me home.
I WANT TO SCREAM. I can’t lead a normal life anymore, even going upstairs to my room is such a struggle I fear I’ll go into cardiac arrest... I’m only 24. I’m so upset, this disease has taken so much from me. I can’t even remember what it’s like to play any sport, go to the gym, hell even walk upstairs without almost dying! Now I also have to deal with this constant eye pain, and am worried about having bulging eyes. I know it sounds vain but I don’t think I could handle that on top of everything else.
Does anyone have any advice for me? Go to A&E again? Take carbimazole, knowing it will lower my white blood cells, and wait to see the endo? Not take it and wait? Throw myself off a bridge?! I’m hardly living anyway, so maybe that’s the most humane option.
Edit
I’ve been to 3 pharmacies and no one has carbimazole or propanolol. What a joke.
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StrugglingThyroi
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To be honest any doctor who refuses to prescribe PTU because they ‘have no experience with it’, and instead prescribe me a medication which has been proven at least 5 times to kill my white blood cells, is an idiot.
But I don’t really have a choice at this point, it’s either die of agranulocytosis or thyroid storm. Well at least I get a choice...
I’ll have to go to A&E after a couple of weeks of taking carbimazole anyway, since my white blood cells will be at 0 again. Yet another hospital stay due to carbimazole induced agranulocytosis, good times
Oh my goodness, I'm so sorry you've been dealing with such an idiot doctor!! They should definitely be offering you PTU, I mean for God's sake what would they do if you were pregnant (its standard practice to switch to PTU during pregnancy).
Firstly go to Elaine Moore's website. She will have so much information about this. I also wonder if you've looked at alternative options like combinations of natural and chemical. Acetyl - l-carnitine blocks excess thyroid hormone entering the cells and can be used in combination with lower doses of medications to boost their effectiveness and reduce symptoms.
I have definitely seen Elaine Moore reporting on cases of similar responses to carbimazole and suggesting ranges of other treatments that do not involve RAI.
I am sorry again that you've had to deal with such poor medical advice. It's the most frustrating thing ever and not feeling heard has made me want to bang my head against the wall. But there is help and people who know what to do. Honestly start with Elaine Moore. She's a scientist, not a quack snake oil salesman, and I promise you the information on her website amd books/the research it guided me to, is the reason that I am in remission today.
Elaine Moore told me my TSH was suppressed and I had hyperthyroid after I had been going back and forth to my GP for 2 years asking what was wrong with me ... my GP told me it was the menopause because I was 48 at the time. I actually didn't go through the menopause until I was 55 and all the symptoms were Graves' disease.
Interested in your diagnosis of the menupause instead of hyperthyroidism because that's what I got from my gp for 3 years he never took blood until my last year when I was showing signs of loosing a lot of weight and I had to begg him to do bloods, I went through the menupause at 42 so I knew the symptoms I was now 53 so I kept saying it's not the menupause doctor? Of course he knew my body better than me.. NOT!!! my last bloods with him were in late Aug 2018 to which he rang me to say everything was fine now just get on with it as I have other patients? My son took me to the surgery in early sep 2018 because he was so frightened of my symptom I saw a different gp she diagnosed me on site took bloods they came back the next day as hyperthyroidism turned out to be graves..... I think it was about 2 weeks after my other gp said everything was OK so really interested to see those results my gp did in Aug 2018 🤔
Why don't you request your medical records and blood tests for the last 10 years. I have viewed mine online and my GP wrote "delusional" about me when I was infact suffering from Graves' disease. I have asked them to remove the remark but they have refused which I am very annoyed about because it implies I have mental health problems. You are entitled to see all your medical records and results because it is the law btw.
Yeah I'm doing that today my bloods are this morning for thyroid so going to ask to look at my records probably will need to write a letter or something like that before they will let me veiw them... That's so bad not to remove that awful remark about you... Its also a lie you were genuinely ill not delusional they have no right to keep the in your records... 🤔 Goodness knows what my gp has written about me then because he said most of it to my face like waisting his time.. Nothing wrong with you.. I have other patient's. Very nice he never even apologised when I got the diagnosis of hyperthyroidism /graves unprofessional in my opinion.. they should be brought to account when this occurs because they haven't done their job properly 😠
I actually confronted the Doctor who wrote that about me a week ago. He is no longer a GP and I said to him "Thank you for writing delusional on my records Dr J" He pretended to not remember me and looked embarrassed.
I have Graves’ disease and I’ve had Thyroid Storm ..which was absolutely terrifying
I didn’t know what either was .... BUT NOW I DO !!
After becoming Euthyroid using Carbimazole which was tricky keeping a close eye on my bloods .. I began a regime of Supplementing,
particularly using
L Carnitine and Acetylene L Carnitine .
I am not taking Carbimazole now at all .. but maintain being Euthyroid with those two Carnitines .. I know of many who have used it with great success.
Research Dr Benvenga .. Italian doctor who has done much research on the subject .
Also , Carnitine has an amazing effect on muscles, ligaments and tendons , feeding them .. and reducing or removing the pain that many Graves patients experience
Hey .. dont panic , don’t give up .. I’ve been there and now I feel very good indeed .. also once I became Euthyroid my eyes stopped bothering me .. now I only need moisture eye drops at night .
Arm yourself with as much knowledge as you can .. understand what Graves’ disease is ... what starts it ..
you will visualise it in your mind and know your enemy !
It’s not your Thyroid Gland that causing the problems , most likely , but the whole process of the hormone production . Learn how it works .. you have the internet at your fingertips thank God .
My Mother had this terrible disease and NEVER had a diagnosis ! Because no one knew what was wrong with her .....including me .
But now I do Know ! .. but too late !
Send your latest blood results in for us to see including figures in brackets which are the ranges ..
You will get plenty of advice here.
remember this ... you are now where we all started from ... so things will surely improve from now on .
I am so sorry to read your posts. I’ve been there with thyroid eye disease - and took RAI in 2014 - it made my TED. Dry much worse!
But for me there has been light at the end of the tunnel. I changed endocrinologist and ophthalmologist and I’m on the mend! Pm me and I can give you details of where I am now seen. My nhs referral to the team was t a long wait. It’s worth a go. Sending you love 🙏
Thanks for your reply. I’m not sure if I should register with a new GP today, since my endo referral from my old gp is still in process? I haven’t received a letter about it yet
I can totally sympathise with you I had much the same prob with carbimazol only my body refused it I threw up everytime I took it I had a bad reaction to it my gp did put me on ptu only I had a bad reaction to that to I was left to get on with it either take the meds or don't my thiyroid was overactive diagnosed with hyperthyroidism my gp just didn't seem to care my life like yours was none exsistant like you my heart would beat so fast I couldn't manage to do day to day things.. I was taken to hospital several times because my heartbeat went over 200 beats per min.. Collapsed several times then was rushed in with thyroid storm.. My gp then sat up and realised I couldn't handle the anti thiyroid meds unfortunately my thiyroid went toxic and had to be removed I blame my gp for not diagnosing me sooner and realising my body would not take the thyroid meds... My life was over... That's how I felt... Have you been diagnosed with graves? My eyes were gritty sore and bloodshot they are now slightly protruding but not so noticeable.. But if you have graves that's always an auto immune disease so you will be attacking your thyroid dumping a massive amount of thyroid hormone in to your system which will eventually kill your thyroid I was like that for 3 years my gp never diagnosed me until it was to late.. Can you see another gp who might be willing to prescribe ptu? You really can't go on like you are belive me I know what it's like you definitely have no life.. I got quite annoyed at my gp and said I couldn't see you surviving if you had this for just one month.. Unfortunately as you said A&E don't help much like you I was sent home and told just to stay in bed great.... If you don't get some sort of medication you will probably go in to thiyroid storm it's really ignorent of gps and A&E to let us go on its dangerous to you must keep on at any gp at your surgery and ask what will happen if I go in to thyroid storm that just might give them a kick up the bum... Obviously your quality of life is zero as mine was and its unacceptable they need to hear this make it loud and clear you can't go on any longer as you are... No humanbeing should have to suffer this way to get treatment ❤️
I hope you manage to sort this awful situation out and soon❤️❤️
Sorry to hear of your experience. There have been several occasions where I thought I was having a thyroid storm, but the symptoms improved after 15 minutes of laying down. If that wasn’t a thyroid storm, I dread to think what a real one is like.
Yes I have Graves. I also have gritty, dry and painful eyes. If they end up popping out (which they will knowing my luck...) I’m going to be so upset.
I could change doctors but it apparently takes 2 weeks to register, so I wouldn’t be able to see a doctor during that time. I’m also not sure if it’s a good idea as my current GP has sent a referral to the hospital? I haven’t heard from the hospital yet.
I just can’t believe he prescribed me carbimazole instead of PTU, knowing full well that it murders my white blood cells (I’ve been in hospital countless times because of this), because he has no experience with PTU and wouldn’t feel comfortable prescribing it... Wtf? So he’s just never going to prescribe PTU to anyone during his entire career? How does he expect to gain experience with it?! What an idiot!
I’m taking carbimazole and propanolol right now as I have no other choice. In a week or 2 I’ll have 0 white blood cells, and will have to go to A&E again. What a waste of everyone’s time...
He only prescribed 40mg carbimazole a day, but considering how overactive I am, to the point of not even being able to climb a flight of stairs without fearing cardiac arrest, I don’t think that’s anywhere near enough. I’m taking 40 in the morning and 40 at night. No improvement yet but of course it takes time.
He also prescribed 80mg propanolol, which I’ve been taking for years and my heart rate is still out of control... So I’m taking 80 in the morning and 80 at night. My heart rate is now down to 84bpm, which is good. Still feel crap physically though, no improvement in symptoms.
It’s unbelievable how ignorant doctors are when it comes to thyroid issues. My endo even said he’s not worried about me having a thyroid storm, because I’ve been overactive for so long that my body is used to it!!! An endo really said that out loud to me! I’m so frustrated with the lack of help or sympathy. I’m so angry they won’t let me try PTU, and would rather keep me on a medication that’s known to cause me life threatening side effects.
It frustrates me even more that their idea of treatment is simply giving me a different, just as crap disease (hypo) that I’ll have to deal with for life. The NHS website even refers to radioactive iodine as a CURE for hyper!
Your doctors sounds like mine as does your endo.. I can tell you going in to a full thyroid storm is frightening I honestly thought I'd died they were working on me in A&E but I had no memory of it my sister in law told me she was with me I never want to go through that again!! All I can say is you need some sort of treatment because hyper/graves is not nice it can affect the heart and every part of your body.. I was put on propranolol but it never worked my heart was totally out of control if I went to the loo I felt like I'd ran a marathon my thiyroid was spewing out hormones that made my metabolism go in to overdrive.. Its not good for the body.. I now have no thyroid due to my ignorant gp and are struggling with the levo. I can't understand how your gp/ endo can just leave you on carbimazol when it affects your white cells.. I couldn't take it due to me throwing it back same with the ptu my body just wouldn't take it and because I was getting no meds I had thyroid storm my gp knew I was vomiting it back but just told me to persist with it. to be honest they have no clue about thyroid disease which is wrong considering it's a vital organ that does quite a lot for the body it's unbelievable how we are treated I'd love my gp to go through what I went through just for a month see how he likes it.. My only light a the end of the tunnel was going in to thyroid storm because that gave my gp a kick up the bum but that should never have to happen in order to get the right treatment.. I hope you can sort your stupid gp and endo out and if your endo thinks you can't go in to thyroid storm then he should not be practicing as an endo he clearly knows nothing please push as hard as you can to be heard
Hi, Struggling Thyroid, been through the same thing with the eyes. I've got a big left eye that I have had for a number of years. Yes it can be uncomfortable, artificial tears help, used them for a number of years. Been through iodine treatment twice, on 225mcg of thyroxine now. If you need to vent your spleen get in touch, been here for over 20 years with the problem.
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