very worried

[Blodders9]

Diagnosed with hyperthyroidism and been given a prescription for Carbimazole 10mg daily.I am horrified to read the many side effects of this medication.This has really put me off commencing the tablets tomorrow.I really would be grateful for any advice from anyone on these tablets.I have been referred to an endocrine consultant ,but needless to say ,when will I get an appointment.

[PurpleNails]

Welcome to forum.

10mg is a very low starting dose for carbimazole are your thyroid levels (FT4 & FT3) very high or is it that your TSH (thyroid stimulating hormone) is low?  

Did GP test TSI & Trab antibodies as positive levels confirm Graves. There’s other reasons to be hyper or to appear hyper based on TSH.

Doctors do not alway do a complete test.

Really helps yourself if you collect copies of your results and track what’s being tested & the results.  Once you understand the results you can ensure your own treatment is right. 

You are legally entitled to results, many have online access.

If your FT4 & FT3 are over range & you have a condition which means it will continuously be high you need an anti thyroid medication.

Many get no side affects from the medication & the serious side affect are very rare, milder reactions can often be managed. 

What are your main symptoms?  

Propranolol is often prescribed along side Carbimazole.  This helps with palpitations but should be reduced slowly when stopping.  

The Graves forum can be quiet, often only me & pennieannie see replies but you are welcome to also post on main thyroid forum which has many more members & monitors.  

Some terms you come across:

TSH, - thyroid stimulation hormone (a pituitary hormone which signals thyroid to produce)

FT4 - free thyroxine 

FT4 - free triiodothyronine 

TSI - Thyroid-Stimulating Immunoglobulin (signifies Graves) 

TRab - TSH receptor antibodies (TRAb) (signifies Graves)

 TPOab (Thyroid Peroxidase antibodies) (autoimmune, both Hashimoto’s & Graves) 

TGab (Thyroglobulin antibodies) (autoimmune, both Hashimoto’s & Graves) 

[Blodders9 in reply to PurpleNails]

Thankyou for your reply.My problems began about 6 months ago, began to loose weight and suffering from bowel problems and anxiety. I finally got to see a GP in December, sent for a CT scan which showed an enlarged goitre.Recieved a phone call from the GP with the results and saying he has referred me to the endocrinology department and prescribed the Carbimazole.I was not given any further information other that my blood count was on ‘the high side of normal , I do hope that I won’t suffer any or few side effects of the medication, atleast your reply has helped as I don’t know of anyone with thyroid problems

[PurpleNails in reply to Blodders9]

Many diagnosed with Graves do not have any form of scan.  

I had 2 neck ultrasounds & then a “nuclear uptake” scan before I was diagnosed with toxic nodule.  

I was hyper & given carbimazole before antibodies were tested.  As antibodies negative & ultrasound showed nodule the uptake scan was given to confirm toxic nodule. 

Depends on what type of scan was completed.  Some can examine function & confirm Graves, some can only examine size & health of thyroid. Collecting your results & copies of any scan reports is best option & then you can know what going on.  Many of us find details & information which are not fully explained. 

Try not to be worried about the carbimazole.  Reading the information & being vigilant for potential issues is the right step.  There’s lots of people out there that take the medicine that the doctors recommends without bearly glancing at the patient information.  

[Cat_lady13 in reply to Blodders9]

hi, I don’t get the chance to venture on here often so only just read your post, I wanted to reply to say I’ve been on carbimazole long term 20+ years and I’ve never had any side effects so far, I can’t comment for others on here but just letting you know please don’t worry about taking what’s needed to help you. There’s really helpful people on here that can give you advice/support if you have any questions.

[InaJB in reply to Cat_lady13]

Hi - I've only just joined, but I'm interested to see that you have been taking Carbimazole long term. I've now been taking it for over 4 years; had radio iodine last May, which didn't work at all, so after a while back on Carbimazole. They said they'd consider repeating the radio iodine after 6 months, but I don't think they have time for anything like that at the moment.

What dose are you taking? They constantly want to reduce my dose although I'm still not feeling fit, and my blood results are still high. Wondering whether 30mg is considered too high for long term. (No side effects, I think!) I had to persuade them to leave me on 30mg, because I want to get back to work.

[PurpleNails in reply to InaJB]

welcome to forum inaJB

30mg carbimazole is a higher level dose. Usually once the initial level of carbimazole get levels down a lower or maintenance dose is all that required.

Do you have results? (TSH FT4 & FT3)

It might be best if you do your own post. I recommend you fill your history on your profile & post on main thyroid forum.

[InaJB in reply to PurpleNails]

Thanks. The nurse at the hospital looks at my results and reads from a chart that my dose should be reduced - but they never ask whether I actually feel ok on that dose. I am beginning to suspect that there is something else going on in my body, that I am still feeling so unwell (mostly just weak and tired). My latest results were TSH <0.01, FT3 6.2, FT4 14.3

[PurpleNails in reply to InaJB]

Do you have ranges? They vary between labs.

New post please as - original poster gets notified by all replies & I suspect member can offer you a lot of specific advice.

[pennyannie]

Hello Blodders and welcome to the forum :

What have you been diagnosed with and what symptoms decided you to see the doctor ?

Do you have your initial blood test results showing a TSH, Free T3 and Free T4 readings and ranges ?

I was prescribed Carbmazole and despite my low white blood count at diagnosis I was well on this thyroid hormone blocking drug - however if you do experience any symptoms as listed on the PIL there is an alternative AT drug referred to as PTU - Propylthiourcil.

[Blodders9 in reply to pennyannie]

My problem began with weight loss. bowel problems and feelings of anxiety and palpitations, it was difficult to actually see a GP but eventually in December I did get an appointment,from there I was sent for a CT scan.A phone call from the GP last week confirming that my blood count was on the high side of normal and the scan showed an enlarged goitre. The GP prescribed Carbimazole 10 mg a day and has referred me to the Endocrinology department, but I really did not get very much information out of the GP on the short phone consultation. I start the medication tomorrow,but admit I was horrified to read all the side effects.From what you and Purple Nails have replied I feel a lot more confident and able to find out more about my results.Thankyou.

[pennyannie in reply to Blodders9]

Ok then no worries -

yes I read your reply above to PNails -

point of reference - we can all read all your replies even if not addressed to us - so thank you for the repeat performance.

Though if you wish to reply to somebody in particular you need to makes sure you use their reply button :

Most questions are answered within around a 1/2 day window and we try to answer as thoroughly as we can as the forum is very busy and we need to keep moving forward and answering new questions.

If you want to bring someone back into an existing post you need to reply to them within the post by name - otherwise new information deserves a new post so all forum members can see it and try and help and support you.

We all seem to be on the Thyroid UK forum here as the Graves forum seems the sad sister - I'm with Graves and help out over here as ultimately we're looking at a thyroid health issue.

The AT drug simply blocks your own natural thyroid hormone production and presume you are displaying hyper type symptoms and/or bloods are looking ' not normal ' -

If you go into the Thyroid UK website - thyroiduk.org - there is a list there of both hyper and hypo symptoms and yes, it's not that straight forward as some symptoms can be experienced in both extremes of symptoms - but it might just help you understand where you are as you go through these next few months on the AT drug.

When metabolism isn't running quite right, either too slow or too fast, the body has trouble extracting key nutrients through food no matter how well and clean you eat - so keep an eye on your ferritin, folate, B12 and vitamin D levels as if these nose dive, which is quite common, this will only compound your health issues further so maybe get these bloods run as well, so we have some readings to work from.

Arrange on line access to your medical records and we can explain any readings and ranges of any blood test results should you wish.

[Fruityflapjack]

Hi Blodders9 and welcome. Purple Nails and pennyannie have given brilliant advice. I've been taking carbimazole for nearly 4 years with no side effects. I started on 20mg, now its 1.25 and I'm happy to stay on the drug long tetm if necessary. Just make sure that you have regular blood tests to monitor your levels. Mine is still checked every 3 months..

[BeeOrchids]

Hello Blodders9, I’ve been taking Carbizamole since August 21. 20, then 10, currently 15mg since last summer each day. I found I started feeling much better within a short time of starting to take it. I too had lost a lot of weight, had palpitations and was generally very weak and feeble. I could barely walk to the end of my road. Three weeks later I was thinking about longer walks and looking forward to them. In terms of side effects I found the worst was having a very itchy scalp and sometimes headaches. I was reassured by people on here and kept going with the pills. Hopefully your GP will keep in touch with you and you can chat about any concerns you have. Good luck with the Endo when you get an appointment. I would also say good for you reading up on the patient information, many people don’t bother. It’s provided for a reason, so you can be aware of possible problems but also for reassurance so you know what to expect.

[Blodders9 in reply to BeeOrchids]

Many thanks to you and all the others that have replied . It’s very reassuring knowing that I am not the only one with this problem, hopefully the treatment will make things better in time even if I have to take the medication indefinitely,I most certainly don’t want to feel so miserable as I have done over the last 6months

[Bluebell999]

I was diagnosed with Graves after 18 years of hypothyroid, (Hashimotos). I knew something was wrong about four years ago, as after each blood test my gp reduced the levothyroxine. I asked for a referral to an endo but there was only a letter saying it was transient thyroiditist, no medication or treatment offered, not even an appointment.

After several months, when my levo was reduced to a stupidly small dose, (12.5mcg), I asked my gp for a referral to a different endo in another hospital, which she was happy to do. My heart sank when I had a letter saying their waiting lists were so long they did not know when I would get an appointment.

After a few days, I rang the hospital and asked them to put me on the cancellation list and said I could attend at short notice.

Within a week I had an appointment for the following week. I saw the endo, had more blood tests, confirmed Graves antibodies, had an ultrsound scan which confirmed a goitre and nodules.

I was prescribed carbimazole 5mg daily and even at that small dose I began to feel unwell. I had aches and pains and a heavy head. I started taking them every other day which helped a bit but then I felt I wasn't getting the benefits of the carbimazole, so went back to daily.

A week or more down the line I had severe constipation, so bad two gp doctors said I had to go to A&E. Enemas, movicol, suppositories eventually worked but it was a full three weeks before I was back to "normal" Needless to say I am not taking any thyroid medication at all.

I am having further bloods next week and an appointment next month with the endo.

I cannot take the other prescribed med for Graves as I have had autoimmune hepatitis in the past and this med could affect my liver.

Funnily enough, at the moment I feel quite well, so only goodness knows what is happening!

I would ring the hospital and ask to be put on their cancellation list. This particular hospital trust has three hospitals within the county so I asked to be put on the waiting list for all of them as I was so desperate. Fortunately the appointment I had was at my nearest hospital.

You have nothing to lose by going on the list, and you will be seen so much sooner.

Good luck!

[NIKEGIRL]

Hi. I was diagnosed with graves 30 months ago. I was prescribed carbimazole from the outset but I did not tolerate it. There is PTU. It’s an alternative to carbimazole. Try not to look at all the side effects. It’s easy to look at all the side effects and get overwhelmed.