Hello all, my daughter is 21 and has today been diagnosed with Graves, she has been having lots of symptoms ie racing pulse, dramatic weight loss, severe itching, anxiety etc, her thyroid levels are through the roof apparently and she has been prescribed 40mg of Carbimazole and 80mg of propananol daily, i am so worried about her !! how did the Carbimazole affect you because reading the leaflet enclosed with the package is really unnerving
Hi. I am 29 female. Was diagnosed with graves in December 2014. Have been on carbimazole since then. 20 mg then 40 and then 60mg. Now I am back to 20 mg as my reports have normalised. I think the effects mentioned depends on individuals. I had no side effects. So I think you shouldn't worry before taking the medicines. Just be happy and keep her happy. Give her confidence. All the best
Hi Susan, I was diagnosed with Graves disease 3 yeas ago and have been on Carbimazole and Levo Thyroxine since then but to begin with from diagnosis until I my appointment came through to see a specialist about 3 months later, I was only given Carbimazole to take and it was 40 mgs a day. It will calm downsome of the symptoms like racing heartbeat/pulse and anxiety but it takes a little while to kick-in. When I was first prescribed this medication 3 years ago, the GP told me that if I got a sore throat or any other infection it was important to make an appointment at the GP's to have bloods tested to make sure that the white blood cells were not being affected by taking Carbimazole other than that I don't think there is anything to worry about. I have heard that some patients taking Carbimazole start itching - but as your daughter already itches (like I did) then there shouldn't be a problem. It really does help with those frightening symptoms of racing heartbeat/pulse.
I wish your daughter well and I know this will be extremely difficult for her but tell her to try not to get too stressed about it all - easier said than done I KNOW - but stress plays a big part in triggering Graves and its symptoms of which there are many.
Christine
It sounds as though your daughter is having a "thyroid storm" which is very serious and can be life-threatening. In my opinion, she should be in hospital and monitored very closely. If she is not in hospital, take her to the closest hospital Emergency Department.
What helped my disease was the addition of 3,000 mg of Regular L-Carnitine to my treatment. I did this after reading a research paper by an Italian endocrinologist that stated that hyperthyroid patients benefitted from this and thyroid storms were less severe if they took it. However, that said, I really think she should be in hospital.
Thank you all for your replies wow this forum is fantastic !! i want to know everything and then i can support her the best way possible, she saw the endo today and he talked her through a lot but as you know when your in an appt not everything sinks in, i have never heard of a Thyroid storm it sounds very scary !
Hi again Susan, if your daughter has been with the Endo today then he would know if she was going through a Thyroid storm so I wouldn't think that she is. Many of us had levels that were "through the roof" when we were diagnosed. The most important factor is to make sure you have doctors and endos who are sympathetc and listen to how your daughter is feeling regardless of the results of blood tests because in so many cases what they class as within normal range does not suit everyones wellbeing, we are all different. It's also important and a great help (I have found) to keep a "diary" of how you feel from day to day whilst taking the medication and jotdown questions you would like to have answers to at your next appointment with the GP or Endo. Also ask for a print out of blood results (you are entitled to them) so that you and your daughter can keep a check on the levels too. Do as much research as you can too, there is a lot of information out there - mind boggling ! When I was first diagnosed, I just assumed I would take some tablets for a while and hey presto I would be cured and fine and take up again where I left off - I wasn't told that Graves is a life long condition - in fact I wasn't even told I'd got Graves until last October 2015 (diagnosed 2013) !!
Hello Susan, I read your post and feel for you and your daughter. My daughter was diagnosed with Graves two years ago, just before she was 15. I remember feeling devastated as it felt like all her future plans had been dashed as well as incredibly worried. A week after her diagnosis as we were driving to visit family I had to pull over so we could both cry and hug one another. We talked and decided that she could still achieve all that she wanted but the path she might take would have a few more twists and turns on the way than we'd originally thought. My daughter was on the same medication as yours. I'm afraid that initially it wiped her out. She calls this time her 'black period' because she felt physically drained and her concentration levels were so poor. Things improved once the medication started to have an effect.
She's been on block and replace treatment since, so she is still taking carbimazole and is on Levothyroxine. Reading the information leaflets is scary, I agree. However, after reading the entries posted on this site and after consulting a registered dietitian my daughter has also been taking supplements including selenium and l-carnitine. She is following a gluten free diet which has been much easier than I thought it would be. It was also suggested that she do some exercise (pilates) to maintain muscle tone and core body strength. This has all made a huge difference and two years on, she's about to take her AS level exams, is deciding which Uni's to apply to and is planning her gap year. I feel like I have my girl back.
It all feels very confusing and overwhelming at first but it does calm down eventually. I wish you and your daughter all the best.
Hi
This is for everyone but in response to the issues raised by Christine and carbimazole.
Does anyone know what is likely to be the outcome if the blood count did fall due to carbimazole?
For example - would the drug have to be immediately discontinued?
If so what would it be replaced with?
Is a fall in the blood count serious? Is it a sign of infection?
Is it safe to prescribe/take carbimazole if one has a cardiac arrhythmia?
Thanks for your assistance.
Hi Linda
Can Regular L Carnitine be measured in the body?
Is it possible to buy it from a Health shop etc?
Should one tell one's dr if one takes it?
Thanks for your help.
For some reason i am not able to reply to comments maybe because i am new to the forum, Pippa that is exactly how i feel as a mum you want to protect and take it all for them don't you, luckily my daughter is level headed and hopefully the doctor has got through to her how serious this is and can become, i hope she has an easy ride on the medication, he told her to maybe take a week or so off work but she is feeling guilty but reading all on here i think she is best to until the meds have started working (hopefully working) thank you all again x
Hi daku
Can I ask you what your thyroid hormone and antibody levels were when you were prescribed carbimazole?
How often were your blood levels checked?
Have you got any thyroid nodules?
Hope u don't mind my questions.
Thanks.
What were your blood levels?
Hi Karen
Unfortunately I can't answer all of the questions but hope this helps.
I believe that there is another drug that can be used to replace Carbimazole, it is also used to replace Carb when a patient has an allergic reaction to it. I can't remember the name, it will come to me eventually
From what I've read and can remember should Carbimazole begin to have an affect on the white blood cells it is indeed stopped and the white blood count goes back to normal levels after a few weeks unless it has already gone too low and that would only happen if it wasn't checked as regularly as it should be.
The ony other thing I can add is that in an article written by a top Endo, he states "there is no reason why carbimazole shouldn't be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the course".
I started on carbimazole just over a week ago and have no side effects at all despite being really sensitive to many drugs. I did have a bad reaction to the propranolol though (vomiting and severe debilitating fatigue). As others have said it is a rare side effect of carbimazole to lower the white blood cell count and so it is essential to report any infections such as sore throat, mouth ulcers, fever etc immediately and stop taking it until you know the results.
Susan, please tell your daughter that we all (Graves patients) feel guilty about many things but trying to push yourself makes everything worse ! Her body and her mind are working faster than they should, taking more energy, using our mineral/vitamin stocks faster - everything is working overtime and takes a great toll on the body and mind. She has to be a patient in order to feel even a little better. A top Endo describes Hyperthyroidism as "the body in crisis". It's true, I can vouch for that.
** that should have read - patient patient
I can find mine and give you mine if it helps in any way. I have thyroid nodules and also a smallish goiter. I will find my results when first diagnosed and put them on.
Thank you very much.
This is greatly appreciated.
Thanks for the info Christine.
Blood results at diagnosis August 2013:-
TSH 0.04 miu/L (0.34 - 5.6) Below low reference level
FT4 45.2 pmol/L (7.5 - 21.1) Above high reference level
FT3 15.09 pmo/L (3.0 - 5.0) Above high reference limit
TRabs 141 (0 - 15)
TPO 403 (0 - 10)
Reads like a horror story !
More recently 4th April 2016:-
TSH 37.97 (0.34 - 5.6) Above high reference limit
FT4 6.3 (7.5 - 21.1) Below low reference limit
FT3 5.7 (3.0 - 5.0) Above high reference limit
After these results my Endo stopped all meds on 4th April (Carb & Levo) and I had a blood test on 12th April :-
TSH 3.99
FT4 13.9
FT3 7.2
It reads like a horror story ! Now awaiting to hear from Endo - I am starting Carbimazole Titration when the endo thinks my levels are good enough - that's if I don't go Hyper with a vengeance again like I did the last time my meds were stopped after being on Block & Replace for over 20 months - I think it was a thyroid storm, very scary.
Hi Karen, I've put the blood results on for you - hope it helps in some way.