Further down the rabbit hole - sore throat and high temperature.

[Mancunian_C]

So woke up during night with sore throat. Given my GP schooled me to make doc appointment, I contacted 111 for appointment with out of hours service. Confirmed I have a temperature also. Now on antibiotics for a week with instructions to contact my GP on Monday should blood tests be recommended. One month on carbimazole - currently 40mg. Anyone had similar or have any thoughts?

Update:

It's Agranulocytosis. White blood cells 1.4 and virtually no neutrophils so up the creek if I get an infection. Told to go to A&E where I'm in a side room away from the coughing masses. Happens 2-5 out of every 1000 carbimazole users. Sods law. Strikes me that someone should be regularly checking white blood cells counts in the first few months. Pretty peed off the no one in A&E gave me a blood test when I was here on Saturday.

[pennyannie]

Hey there again :

Do you have the PIL - Patient Information Leaflet there for the Carbimazole ?

I was told by my doctor to go immediately to A & E if I developed a sore throat - true that was back in 2004 - but I believe the potential seriousness of still of relevance -

As previously detailed there is an alternative AT drug Propylthiouracil - PTU - should your bloods dictate.

Carbimaziole can lower ones white blood cell count and leave you open to a higher risk of infection, and can also upset your liver function and I think if you wait 'til Monday to speak to your doctor you'll be told you need to be seen in the hospital.

Did you explain that you were taking Carbimazole ? as in some areas of the country the routine is that 111 liaise with the hospital and arrange for you an urgent - within a day or 2 - A & E endocrinologist appointment.

[Mancunian_C in reply to pennyannie]

Hi thanks for your response. The out of hours doctor was pretty harsh and said even if I went to A&E they would not do a blood tests. I went to A&E nonetheless. No bloodtest. Not sure if I should carry on taking Carbimazole at this point, and no one advised. Just case of take antibiotics for a week just in case. Going to contact me own GP in the morning.

[pennyannie in reply to Mancunian_C]

I'm sorry you found no support - yes please contact your doctor tomorrow and keep us in the loop.

I just added this paragraph and think we may have crossed over in the skies -

Mancunian_C

We also still need confirmation of which antibodies were found positive and over range in your first blood test and the medical proof of the diagnosis suggested and prescribed for.

[Mancunian_C in reply to pennyannie]

Will do. Thank you.

[pennyannie in reply to Mancunian_C]

Glad to read you are now getting the help you should have been given when you first posed your question some 3 days ago -

I think we are still waiting on which antibodies were found positive and over range in your initial blood test - or if not run - maybe they can do this for you today ?

[Mancunian_C in reply to pennyannie]

They're doing various blood tests so I've lost track of what's what. My issue is now not on any meds for thyroid and no one is suggesting anything. It's swings and roundabouts. I'm still baffled by Saturday's events.

[pennyannie in reply to Mancunian_C]

No worries - at least you are in the right place now - so just try and make yourself comfortable and try not to overthink everything:

[Fruitandnutcase]

When I was taking carbimazole I developed a bit of a sore throat - not bad but i knew from reading the PIL that came with the carb and also from on this site to contact my surgery to arrange a blood test. I did that - no argument from the receptionist which was good - had a blood test and white blood count was ok. I thought it would be OK as my throat wasn’t that bad and my mouth was ok - no ulcers or blisters or that sort of thing.

A few weeks after that I had the same sort of sore throat and did the same again, this time the doctor and myself decided we would adopt a ‘wait and see’ response as my mouth felt fine and sure enough things sorted themselves out, after that I was fine and felt really well while taking carbimazole

I started on 20mcg carb and I had a blood test after four weeks and was then contacted by my endo to tell me to increase to 40mcg which I took for the rest of the year of my block and replace treatment

I’m not sure about being given antibiotics- did your doctor do a blood test to see what was going on with your white blood cells? According to the patient information on leaflet you should stop taking carb until you have a blood test to check your white blood count.

I would call 111 and explain the problem and get them to organise the correct blood test - if they have a problem with that remind them of what it says in the PIL. I think I would stop taking carb until you have had a blood test.

[Mancunian_C in reply to Fruitandnutcase]

Thank you.

The 111 number was quite poor as they didn't grasp the issue with Carbimazole. The out of hours nurse at the out of hours practice was also equally without knowledge. The doctor was pretty damn harsh. I said if the throat issue was viral, antibiotics would not work. Think she was just covering that base as she said the matter usual pans out the require antibiotics. I'm not convinced.

It only started Friday night/Saturday morning so my own GP is closed. Feeling very ropey at the moment. Think I'll give the Carbimazole a miss until my GP gets back. It's a good practice, so hopefully a blood test. Thank you for responding.

[Ownedbyamuddyspaniel]

I'd agree with the other posts, I started carbimazole on January, only 5mg per day (alternate days to start with) and I've was told by both the Endo consultant and my GP that if I got one of a number of symptoms, including a sore throat I should either ring 111 or go to A&E asking for an urgent WBC blood test.

I think you need to ring them back.

[Mancunian_C in reply to Ownedbyamuddyspaniel]

My GP is closed, and I did go to A&E and they did not offer a blood test. I'm pretty fed up today with how yesterday panned out. No one seemed to have a clue or any concern.

[Fruitandnutcase in reply to Mancunian_C]

That is very annoying isn’t it! Although I have to say I was amazed when the receptionist booked me in for my blood test straight away - I didn’t even have to beg or argue.

Maybe you should go back with the leaflet and show it to them or read it out to 111.

Do you feel throat is getting any worse? If it is then you should try to get a blood test, if it’s not getting any worse then stop the carbimazole, have a relaxing day and get onto the surgery for the blood test first thing tomorrow morning.

Have you tried gargling with salty water, that’s my go-to for a sore throat.

[Mancunian_C in reply to Fruitandnutcase]

Hi, thanks. It was an out of hours GP. My own GP is great. They did blood test straight away on the Monday and I now reside in isolation room at hospital. Literally no immune system left.

[Ownedbyamuddyspaniel in reply to Mancunian_C]

Did you ask and point out the issue? I find that increasingly I have to be very clear about what I want from a medic!

[Mancunian_C in reply to Ownedbyamuddyspaniel]

They didn't want to know.

[PurpleNails Administrator]

British Thyroid Foundation have this clear warning card.

btf-thyroid.org/Handlers/Do...

Your (PIL) patient information leaflet should have similar information.

Carbimazole should be stopped until your WBC white blood cell count is tested.

[Mancunian_C in reply to PurpleNails]

Thanks. Turns out I've no immune system left so in hospital in isolation 🤦🏻‍♀️

[PurpleNails Administrator in reply to Mancunian_C]

Oh no, that’s awful. You should have been checked & admitted over the weekend.

Hope you feel better soon.

[Mancunian_C in reply to PurpleNails]

Exactly. I'm in good hands now so I'm the right track.

[Shostakovich1]

I was told by my GP to contact the surgery straight away to arrange for a blood test that day if I experienced those symptoms as may be agranulocytosis- drop in white cell count

[Mancunian_C in reply to Shostakovich1]

Yes , my GP was clear on that also. Unfortunately it was weekend and it was a private out of hours GP service.