Carbimazole and doctors! (Bit of a rant)

[Mordecaispatz]

So, I've been on carbimazole over a year (awaiting total thyroidectomy) and I know the drill - sore throat = urgent blood test, just in case it's agranulocytosis. Started with a sore throat last night, no better this morning so went to my local urgent care centre (GP is shut for bank holiday weekend). I did the usual "it's probably nothing" and dithered a bit about going.

Saw a doctor...she basically interrogated me about why I was there and what made me think I needed a blood test and why it couldn't wait til Tuesday. Eventually I just pulled up the BNF page for carbimazole on my phone and showed her the "important safety advice". Had the blood test now, just waiting on results but I'm really pissed off with that doctor's attitude!

[SeasideSusie Remembering]

Mordecaispatz

Yep - more doctor ignorance about thyroid conditions and treatment. Thank goodness you were able to show her the evidence. It's their arrogance that gets me.

[Mordecaispatz in reply to SeasideSusie]

Exactly. She spoke to me like I was some kind of idiot. I've mostly been lucky with doctors so far, so this one was a bit of a surprise to me!

[Valarian]

It really would be good if they made sure they know W what they are talking about, before putting mouth into action !

My NHS Trust (Cardiff and the Vale) issues patients on Carbimazole with credit card-sized cards about the risk of agranulosis.

I would be tempted to complain - a less confident person, or even one feeling less well, might have given up in the face of opposition.

Best of luck - it’s probably just a sore throat, but always better safe than sorry.

[Mordecaispatz in reply to Valarian]

Thanks Valarian

Got the blood test results and it is indeed a viral sore throat

I actually work in the hospital I've just visited so will be having a chat with them when I'm back at work on Tuesday - like you say, others might not feel confident to challenge.

[Valarian in reply to Mordecaispatz]

if someone does have agranulosis, they could be very ill indeed - a card can be kept in a purse or wallet, and would be found by emergency authorities if the patient were in no condition to speak for themselves.

[Marz]

Sorry about your GP ordeal. Have noticed you are new to the forum and I am wondering what tests were done prior to being prescribed Carbimazole ? Which Anti-bodies were tested ? We have had a few members of late who have been diagnosed Hyper and on further questions it has been established the person has not had their anti-bodies tested. When they do - then it is discovered they have Hashimotos and not Graves - or both.

Having a TT is a big step if you have not been diagnosed correctly ...

[Mordecaispatz in reply to Marz]

Thanks Marz

I was diagnosed over a year ago, following a CT scan (which showed a large thyroid cyst and multiple smaller nodules) plus blood tests (including antibodies). After the usual ping pong of referrals I was referred to an ENT surgeon and had an isotope uptake scan. Following all the tests, he and the endocrinologist both diagnosed Graves. Give the cyst (which refilled virtually as soon as it was drained) and the effect it is having on swallowing etc the recommended option was a TT, which I'm waiting for at the moment

[Marz in reply to Mordecaispatz]

Really hope everything goes well for you ... am still wondering which anti-bodies ? - TPO & Tg are anti-bodies for Hashlmotos & there are different ones for Graves. I had nodes when scanned as part of my diagnosis here in Crete for Hashimotos and once on T4 the discomfort eased. Nodes still there ! Please forgive me for intruding - but you may also notice the three likes from people on my earlier reply to you. I think they too are concerned.

If you have your results - there are members here who can comment ... after seven years of reading posts here it is unbelievable how little knowledge there is out there within the medical fraternity ... I'm sure I am wrong - just wanting to be sure 😊

[Millea]

I was diagnosed with Graves in mid 2015 - initially prescribed propranolol and carbimozole - scanned - found nodules (but smaller than yours by the sounds of it) - long boring story but no longer on propranolol and am taking 25mg carb a day.

I cannot tell you how many times I was asked why I wouldn’t consider a TT - I had it pushed at me at every consultants appt - and it was clear to me that it was seen by him as a remedy for my condition - each time I would point out all my research - garnered from real people who have had a TT and are now struggling daily to deal with the consequences and the consultant wouldn’t even acknowledge what I was saying - would not look at any of the information I copied for him and quite frankly treated me like I was a slightly backward child. About a year ago I went to my GP - feeling dreadfully ill after the consultant had yet again hugely mucked around with my dosage based on nothing but blood results and completely ignoring my clinical symptoms - I told GP the long saga, fell apart in his office (completely not me) and he wrote to the hospital stating I was never to see that consultant again and my GP immediately changed my prescription level back and ordered blood tests to be done. Since then I now see a new consultant - same hospital - she listens and pays full attention to both clinical and blood results and in the last year my goitre has visibly shrunk. My eye disease is calmed because my thyroid is calmer - my clinical symptoms have all improved and I can function again. I accept that there are some for whom a TT is the only remaining option BUT it should be viewed by both consultants and patients as the very last resort - not as just another option for treatment - it’s not a treatment it’s a final straw. All of us with thyroid conditions know just how connected to every other part of our bodies our thyroid is - so a cared for, controlled one is the best option - to remove it completely can simply give you a whole new set of lifelong issues that you now have to deal with. I simply believe before anyone has a TT that they have tested everything, tried everything, researched everything and sought out second and third opinions.

[Hidden]

I had a TT in France in 2015. The year before I was still in the UK my trachea had moved due to a large nodule on my thyroid. I was told to wait and see, this even though I could hardy breath. When I moved to France in 2015 I was immediately sent to see a thyroid surgeon who removed my thyroid and repaired my trachea. The nodule was 1/5th cancerous but in the UK only a few months before the so called experts said it wasn't.

I am now well without a thyroid but my sister has been struggling for years but refuses to have it out. Everyone and ever circumstance is different.

[Millea in reply to Hidden]

Wow - you were very lucky to have made that move and to have had the cancer discovered because of the move. You’re absolutely right that every case is unique and every avenue should be explored before a course of action is followed - what’s alarming is that your nodules - given how large they were, were not biopsied here in U.K. I am very glad that having a TT has worked out for you. I wish that the same could be said for others though. All best.

[Hidden in reply to Millea]

I did have a FNA in the UK five months before but the answer came back wait an see. They could not find any cancer but they weren't positive.

[Kari55]

My husband has agranulocytosis twice and only after Elaine Moore advised him to drop the dose, this has been solved and didn’t happen again. I hope you’re ok.