carbimazole and sore throat

Hi Kaye and Sylvia,

It's great to hear from people that are coping with it at the moment and not just looking at text from months ago wondering if that person was ever cured.

I am generally an optimist and 'normal me' as I call it now was very organised, very active, very clean (washing is sooo energy consuming!!!) and great at dealing with incompetence. 'Me now' is none of the above and I now just have to laugh it off when I've found that I've just gone and thrown something at some receptionist or verbally abused some jobsworth on the phone!

Sometimes it's like watching someone else and I'm hoping my meds kick in properly before I end up in front of the police for unsociable behavior!

I told my endo that I didn't like the idea of iodine as I felt my thyroid was likely to have spurts of going up and down due to a history of undiagnosed weight loss, palpitations etc. throughout my life. I said I wasn't convinced that it was just my thyroids problem and that there was no proof that something else in the endocrine system couldn't have triggered it. As you can tell - I think too much! Surprisingly for me, he nodded his head and kind of sighed. This just makes me think that they haven't yet discovered what Graves really is and we don't necessarily have to have our thyroid glands killed off to get better.

Anyway, the optimist in me feels that by controlling this with drugs and not killing it off and having a life of drugs, means I'll be fixed for good one day!

Roll on that day 'cos I can't sleep which is why I'm on a forum after midnight!!

Take care,

Going ever so slightly mad Shaz.

Hi!

Reading your experiences on the forum does help - we are NOT going mad, but I feel like it sometimes! Who would have thought a little thyroid could make us all feel like this?!

I had a blood test yesterday so get the results tomorrow. Let's hope it's not gone under now, as that has happened to someone else I met on the forum. It's like a juggling act! I know people through the forum that have been put on anti-depressants when clearly it is thyroid problems. Anything to shut us up I expect!!

I've got Graves but a mild dose I think. I went to the opticians and had an eye scan, just for peace of mind. The endo didn't think this necessary, but I don't thing they REALLY know enough about it. There are so many different reports from different Primary Care Trusts it seems.

You will get faster going up the stairs - my husband used to push me up by my bum! And getting up from crouching down on the floor puting the washing in has been a nightmare to get up again! That is improving now though.

Will we ever be normal again??!! Sorry to rant!

Kay x

HI

Kaye you sound like you are coping brilliantly. I find just trying to brush my hair my arms get so tired. I was at work the other week and for some reason decided to get the stairs. I was with a work colleague and we work on the first floor. There are 2 flights of stairs to climb. I managed the first set but by the time I got to the second it was a struggle. I was on the stairs with my colleague in fits of laughter because I couldnt go up nor could I go down. People were walking past us and thought we was completely stark raving bonkers. I do really stupid things too, like not being able to work the washing machine. Good grief I've used one most of my life. My favorte one is constantly loosing the car. I can never remember where I have parked it. So if ever you see this mad woman wandering around any ASDA car park its bound to be me looking for my car. I go back to see the endo at the beginning of June when they will decide whether do this \"block and replace\" I dont really care if they do that but I dont want to have the iodine treatment. That is for caring needs more than anything else. I am trying to pull things together and I am trying to laugh at myself more. It can be hard when you are just so sick of everything that goes on. I am sure my name is on a reserved seat at the doctors because I'm never away. Thank goodness I have a doctor who listens and is very sympathetic and gives really good advice

Take care everyone out there. We will beat this thing it might just take a little while

Thanks for listening

Sylvia9

I am coping well, but have been through the stages where I haven't been able to get up the stairs. That does improve.

I've been quite lucky because I gave up work in October and then got diagnosed the week after! Typical! No sick pay! I left work because I'd been unhappy there for about a year (some woman being horrible to me and I couldn't take any more) and also I lost my Mum suddenly last July to cancer (she's only been ill for 9 days before she died) - I think these things were the trigger for my thyroid.

Anyhow, I had my monthly blood test result today and unfortunately it's gone up! It is in the normal range of 12-22 (has been 16 for 2 months) but was 18 today and I presume it's because (a) the carbimazole was reduced to 10mg last month and (b) I've done too much, which is more likely to be the cause - because I've been feeling better I've been whizzing round the house with my duster and hoover!!

I'm 49 and have been feeling 69 lately! Things can only get better ..........

Kay x

I'm confused about these ranges. My endo has given me some for T3 and T4 but they don't seem to match up with any ranges I see in forums. Is there a range I need to be asking about and has anyone found a level they feel well in?

Shaz

I started to think I was going crazy...but it seems I am not alone. Shaz-I feel exactly the same. Short temper, mood swing, tired, weak, emotional... I'm not me anymore and I don't see a light at the end of the tunnel. I have always been bubbly, positive, and active. I haven't felt like this since puberty.

I was hypothyroid and took synthoid about a year ago...I stopped taking it cuz i wasn't sleeping and got super jittery with palpitations. While this was going on my mom got very very sick and the stress of it along with other personal and work related problems catapulted me into extreme hyperthyriodism which turned out to be graves disease. My tsh is less than .005, T 14.9 and T3 77.83. I am now on 40mg carbimazole and 10 mg inderol (betablockers.) I cry every day and I cant concentrate. I can't lift anything heavy and I can't go up stairs. I have night terrors (already prone to nightmares.)

I just got back from a trip to London with children; seeing the sights and keeping up with them took every bit of effort and energy I possess. I got back home to Kuwait exhausted and sick. I'm coughing, blocked nose, sore throat, having trouble breathing, and aching. My dr gave me a shot of Olfen and oxygen then sent me home. I asked if I need a white blood cell test, she said no... The olfen def made me feel better, but after researching online I am worried that I need that blood test. Does anyone know of an alternative to Carbimazole? The nightmares and crying are making my life a living hell. Thanks for any info and good luck to all of you under treatment!

Hi I've been diagnosed yet again with an overactive thyroid third time for me in ten years seems to right itself quickly with carbimazole. This time though I have got wobbly legs climbing upstairs is very hard for me and taking the dog for a walk next to impossible. I'm still going to work which is very hard. Feeling exhausted all the time cos I'm trying to just carry on now I've got a sore throat not a bad one think I will have to stop taking it until I can see the doctor on Tuesday. Does anyone else stop immediately or wait till they've seen their doctor.

Hi Shelly, I just started taking carbimazole about 3 weeks ago and started to get a sore throat. My original GP did nothing about it so I decided to go to another GP (I wasn't booked in to see my specialist again for another month). The new GP said it looked okay but did a blood test anyway, where he checked my blood cell counts and my liver and kidney function (my liver function was mildly out of range before starting carbimazole). My blood cell count came back normal, but my liver function has significantly worsened within 4 weeks. The doctor contacted my endocrinologist, who said to continue with the meds and to have another blood test in 2 weeks to check my liver function, because they don't know if it's my thyroid or the medication affecting the liver! Naturally, all of this has stressed me out as I am only in my mid 20s and am having both thyroid and liver problems now!

Anyway, in response to your question about stopping medication if you get a sore throat... The reason they say to stop the meds and get a blood test is because in some cases the medication can weaken your immune system. According to my doctor, you should only stop the meds if you get a sore throat AND a fever, or mouth ulcers or any sign of infection. Since I didn't not have a fever when I had a sore throat, my doctor was not concerned but did the blood test for peace of mind (and lucky he did or I wouldn't know about my recent liver problems!). If you have a fever as well as a sore throat, I suggest stopping the meds and getting a blood test ASAP. Good luck!!

Hi Katz I spoke to my GP who said to keep taking the Carbimazole as it was only a minor sore throat but I still had a blood test to see if all OK and it was. Its all about blood tests galore really hate it. Having one next week to check my levels. I'm on 20mg of Carbimazole at the moment but its not having a massive effect I'm taking a beta blocker as well as my heart is racing and I'm shaking quite a bit which seems to have settled a bit. My legs are slightly better hills and steps are still hard but I'm still trying to take the dog once a day I've got my son to take him the other time, shame really cos I love walking. My GP says within a month my legs should feel a lot better heres hoping. Michelle

Hey Michelle, I was feeling the same with the wobbly legs, they would feel like jelly when I got too tired, and all it took to make me tired was something simple like having a shower or putting a pair of jeans on! After a couple of weeks on the meds I was feeling much better and had alot more energy for about a week. But I seem to have gone downhill a bit this week, I don't know if it's because I pushed myself a bit last week by going back to uni and work, and going out with friends a couple of days. Just hoping my blood test in a week doesn't show more liver damage! I don't want to go on PTU because that's apparently even worse for the liver! It's seems to be a long waiting game with lots of blood tests! I hope you're feeling better soon and get your energy back! Keep me posted. Kat.

Hello fellow sufferers. I have just been put on 40mg of carbimazole a day and I have a blood test in a month - are monthly checks about right? Should i have liver tests, blood count and thyroxin levels tested regularly? I am going to see my GP soon so any info would be useful. It took 5 visits to get a diagnosis and noone has really explained to me what I need to watch for in the medical profession.I suppose the main thing I need is some hope that this wretched condition will go eventually and that I am having everything done for me in the proper way. I was put in for an urgent referral and have to wait until November (does not seem very urgent to me!).

Julian

Hi everyone,

I have recently been diagnosed with an overactive thyroid and after upping my dose of carbimazole to 20mg a day and 40mg propranolol I have started to feel really tired and emotional! I get upset over the silliest things and it's driving me mad! I have been referred to a specialist but not yet heard anything and the constant worry of thinking there's always something wrong is getting ridiculous! Is this the same with anyone else??

Julian....I have had three blood tests in the last 3 months so that sounds right to me but I literally know nothing about this condition, I'm only 26 and really don't want to be on medication for the rest of my life!

Hope you're all ok :-) just need a bit of reassurance that I'm not going mad!!

Katie

Hello Katie

Thanks for the message. All I can do is reassure you that things will get better. I spent a miserable August coping with a multitude of symptoms and feeling like an old man - I am quite a bit older than you but physically fit and usually full of energy. So all this was a great shock but at the moment I am feeling great - not quite back to normal but getting there. The thing about the treatment is that it does take a long time to take effect but it does work eventually and one day you realise that you feel pretty good. As for exactly what is going on with your thyroid, this also takes a long time but eventually the endocrinologists will tell you what condition you have and how to treat it. So you are not mad and I understand how horrible you must be feeling For a good summary of what the condition is like go to patient.info/health/Hyperthyroidism-Overactive-Thyroid.htm. You may be on medication for the rest of your life or not but the main thing is that you can carry on with your life completely normally. Not so bad?

Julian

Hi All,

I was diagnosed with Graves at the back end of 2010. I was treated with Carbimazole until early 2012, various doses, 60mg a day to begin with and eventually just a 5mg maintenace dose. During that time I had to stop taking medication twice due to being over-medicated and twice for low white blood cell counts. Which you all know means that I felt like I was going completely nuts. I was then moved on to PTU, as myself and my husband wanted to TTC. We did conceive but things didn't work out and in April I miscarried. I was then told not to try again until we had a permanent "fix". In july 2012 I had to make a decision, surgery or radio iodine. I opted for the latter and had the treatment at the end of August (NB my daughter had only just turned 2 and I had to stay away from her for three weeks after the treatment.......... killed me). Within 2 weeks I felt wonderful. No more feeling like I was going round the twist.................. I just felt normal. Unfortunately it only lasted for 2 weeks :O(. By the end of October I was back on carbimazole and propanolol. By the end of december my GP and I thought the radio iodine had worked as I was going underactive.......................... how mistaken were we. I'd been off the meds for 3 weeks and what do you know!! Thyroid function started to rise once again and I was just over medicated........... again. I'm now on 2.5mg a day (yes, I have to cut my tablet in half) and have been placed on a low dose of anti-depressants. I feel like a bit of a failure for not being able to cope. I wish that I had just had my thyroid removed, yes I would be underactive but anything has to be easier than this. My next specialist appointment is in 3 weeks, they're not going to know what's hit them. I know that they'll want me to have the radio iodine repeated, but I struggled the first time round and didn't get a result, why would the second time be any different??

Sorry for the rant but no one else truely understands! xx