Newly Diagnosed

[Roderick_0707]

Hi have just been told my T4 is 43 and need to start carbimazole which collect tomorrow. Very new to this and would welcome some help and information. Many thanks

[WobblyX]

Take each step as it comes, read up onCarbimazole info sheet when you get it and just keep reading info in bits and pieces as you feel able...this is a great site to start with! This was me last July.....it's a different journey for everyone.....but there appears to be a lot of people on the journey in different stages with you. Hope you are feeling better soon.

[Roderick_0707 in reply to WobblyX]

Thanks WobblyX will start the drugs just to try get this under control but hope food etc will also have a role to play. Feeling a lot better today now know what it is and can be done, also of course groups like this to share with others. Thanks

[helvella Administrator Thyroid UK]

Carbimazole stops your thyroid making thyroid hormone.

It actually acts quickly - but you already have too much thyroid hormone in your body and thyroid. Stopping the production line doesn't reduce your levels immediately. Over perhaps the next two weeks or so, you will be using up the excess thyroid hormone. Then, your thyroid hormone levels will drop. Often that drop is fairly sudden.

It is at this point that so many people have a problem. They are suddenly catapulted from having too much to having too little - and actually become hypothyroid. This can be a bit of a shock.

There are two approaches at this point - reduce the carbimazole and try to adjust the dose to keep your hormone levels acceptable. Or keep your carbimazole at a fairly high level and giving you levothyroxine as your source of thyroid hormone. Different endocrinologists have different views, and patients are all different.

One important thing you need to know about carbimazole, it can cause agranulocytosis. If you suffer from a sore throat or fever, get to a doctor or A&E - just in case.

[Roderick_0707 in reply to helvella]

Thanks for your info Helvella it is good to have some idea before I start today. I understand trying to balance can be a difficult process and will be prepared. Thanks for health warning!

[Say6 in reply to helvella]

Hi Helvella what is agranulocytosis because i had a cold about three week ago also hoarse throat an i still take my meds because i didn't kno an did'nt go to the doctor i am worry now please help me thank you

[Say6 in reply to Say6]

Me again i fond out that my eye feel sore in the morning when i a wake an cloudy an my eye brow had on matter like cold an my right eye swollen but going on in the day went away i also took evening primrose oil an vit c i dont kno if i am taking it the right way help

[helvella Administrator Thyroid UK in reply to Say6]

I don't know what to say about your eye - except that it could be worth asking a pharmacist, an optician, or if it seems serious, going to A&E.

[helvella Administrator Thyroid UK in reply to Say6]

The NHS has a reasonable page about agranulocytosis:

nhs.uk/conditions/agranuloc...

[Say6 in reply to helvella]

Ok thank you i'll sure do

[Say6 in reply to Say6]

You see i am hyper an graves disease an taking carb that why i was concren

[Silver_Fairy]

Have you had your antibodies tested as your hyperthyroidism may be due to Graves' disease. For this you definitely need a referral to an Endocrinologist.

There is also a risk to the eyes. If you have any problems ask for a referral to an Opthalmologist.

[Roderick_0707 in reply to Silver_Fairy]

Thanks Silver_Fairy that's how it all started. Went to optician who sold me new glasses £135 then some eye drops as said I had dry eye. Went back after a month eyes red sore and still watering, you have dry eyes keep going. Went to Doctor who took action straight away. I have sorted dry eye nearly now most of red has gone swellings is down and that was before took 1st pill today. I see doctor for blood test next wednesday and will post results. Thanks

[helvella Administrator Thyroid UK in reply to Roderick_0707]

Make sure that whatever you use on your eyes, it must be preservative-free. The commonly used preservatives tend to actually cause problems - what might be acceptable for a few days becomes unbearable after a few weeks. We tend to rapidly become intolerant.

[Roderick_0707 in reply to helvella]

Thanks for reply, Hospital phoned to say white blood count low so double drugs! so now 2 tablets of the 20.

[Hidden]

i was taking carbimazole for one year

carbimazole does not stop your thyroid from producing more thyroxine at all!!

it goes into your blood and reduces the excess thyroxine from it.

carbimazole will not cure you but it will make you feel better.

it takes 3 weeks to see some results but some people see results from the first week.

you will feel better.After few months you may gain weight and feel tired.this is normal because lets face it hormones can get tricky with weight.

carbimazole can be taken with or without food but take it everyday the same day will help you get the results you want faster

[Roderick_0707 in reply to Hidden]

Thanks Joanna for your response, 1 week on my T4 has come down from 43 to 28.5 but I am non the wiser. Have asked for telephone consultation with Doctor tomorrow to ask about it all. I am so whacked out after just walking around! I fall asleep just sitting down. I really think the drugs are making me feel this way and hope I can reduce the dose soon but next blood test is a month away! So hopefully the carbimazole will not drop my levels too low before next test.

[Roderick_0707]

Time for an update with my situation! The first week on 40mg Carbimazole was a success as brought my T4 down from 43 to 28.5 in blood test last wednesday. Had phone consultation with Doctor on Friday as was beginning to feel very flu like. Have been in bed since then and have gone through bad runny cold and then sickness and of course diarrhea which ended yesterday so off for a blood test this afternoon to see where we are at. Have hardly eaten for 3 days and have lost 3k in last 2 weeks. Have not taken Carbimazole for past 3 days as was so worried about taking it. Thinking of re-starting tomorrow but will only be taking 20mg and when see doctor on friday will be saying that. I feel so wiped out and sleepy most of the time I am sure 20mg will be a lot more slower but less stressful!