After eating camazol for years (side effects)

Treatment and medication
1

i want to tell you all about things that happen to me

the fear i have been trough the internet searching i have went through again and again every time i realize another effects came up..

i started with carbimazole from 15 and change it to camazole a year ago and i am 24 years old

i never really shared anything about what i went through my family wasn't really that well of and i can't let them waste their money other than blood test every six month and my med..

i found out was sick when my mom notice my neck seem like something is sticking out

not that visible but it was there

when i start i have this feeling like i want to throw up, with stomachache

my body start to swell with my right eye bulging out

my hands tremble

and my heart is beating like i run for miles and miles

and i fainted a lot when i am tired..

or when i was to sad or to angry i fainted

so my doctor suggest me to stop working out and give me med (i have forgotten the name for i didn't take it anymore) something p...... whatever..

afterward i my family did try other alternative when they found me throwing up when i don't even take my med properly at that time..

so we took another way and went to find chinese med it taste suck so much that at the time i can only said it didn't work that well with me months past and another blood test show my t4 t3 tsh is all still not normal..

so i got back with carbimazole

yes my t4 t3 tsh get normal after a year or more and yet after stopping all those med it got worse again

some of my families suggest to take surgery..

but because my father is hyper thyroid we can't take the risk

and there is also the possibility of not being able to bear child and ect..

so in the end i took the med even until now..

but

the negative effect of the med start to show up more and more after years

the pain in the stomach i got use to it

the weight gain at first i can make it goes back down but not anymore

the headache feel normal to me

the blurry eyes i pretend nothing happen

the dental problem i thought nothing of it

the aching body like my hand is going to fall off

or when i walk and i suddenly on my knees

or the hair lost so bad i fear being bald

or the mood swing i have

or the feeling of fainting and want to throw up with massive tremble and chill after a bit of exercise

or the trembling hand i ignore

the crazy heart beat i don't want to care about

and keep carry on pretending nothing happen

i want to keep pretend even right now

that i am writing this..

i will return to pretend everything is alright again..

but i want to tell you all i think it is not worth it eating the med for years ..

i regret not having that surgery

but now even having a surgery

i fear what else that will came out later to even do it

maybe some of you went through what i've been through but i think i have enough .. ^^

i hope non of you went through this

even right now i am crying and laughing and get angry and sad as i write as my mood goes up and down..

i don't even realize since when but i start to get numb a lot my body i mean.. at least i think it is

2

Sorry to hear that you are having such a hard time.

It sounds like you have Graves Disease. Have you been diagnosed with Graves Disease?

It also sounds like your treatment is not quite right.

I've had graves disease twice, and had most of the symptoms that you describe - both physical and mental.

Fortunately I was under the care of a good endocrinologist - free of charge because I live in the UK where we have access to free health care. 

I was also treated with Carbimazole, but not in the same way that you were.

I was given a shock treatment - a very high dose for a short period of time.

40mg of Carbimazole a day for 6 months, and then you stop the medication completely.

After 6 months I went into remission and stayed that way for 4 years. My health was completely back to normal for 4 years!

Then I got it a second time, was treated again in the same way, and have been in remission and healthy for almost 3 years now.

This type of treatment with carbimazole and thyroxine is called "block and replace."

If I get graves disease again, I will do this treatment again.

As for the weight gain - I gained 10kg during the 6 months I took carbimazole. Afterwards I went on a diet and lost the weight and I am back to normal. Hair also grew back, although it's never been quite the same.

 

3

Just wonder when you take 40mg carbi a day for 6 months, how are you treated with the Thyroxine? during the same time period or after the 6 months of carbi? How much thyrox is taken?  Thanks.

4

I took carbimazole on its own for about 6 weeks. By this stage I was feeling normal again. My blood tests showed that I was now euthyroid.

At this point my endocrinologist prescribed 100mcg of thyroxine daily, which I took for the remainder of the the 6 month period. ie: for 4 and a half months.

At the end of the 6 month period I stopped both the carb and thyroxine. 

According to my endocrinologist there is no evidence to suggest that taking it longer than 6 months, at that dosage, has any benefit. 

5

Thanks, tlvr for the info about "block and replace" treatment. Very interesting! So after the 6 mo treatment, patients go remission for the next 3 ~ 4 years. And then the GD would come back to attack... the treatment then repeats the cycle again. Is there a medical proof or theory behind this B&R treatment? Very curious to know. Thanks

6

I am not sure re the research behind the block and replace treatment, but I trust that my endocrinologist does. He is a professor of endocrinology at one of the big teaching hospitals in London.

From my own research it seems that in Europe treatment with anti thyroid medication (carbimazole) is favoured, whereas in the USA for e.g. they push for a thryroidectomy or RAI pretty much as the default treatment.

According to my endo there are no negative side effects to doing the B&R periodically for the rest of my life. I am 52 btw. Had my first episode of GD at 45.

However not everyone is as responsive to the treatment as I was. With a few people the GD comes back as soon as they stop the medication. 

How long you stay in remission varies from person to person. Some people stay in remission for the rest of their lives, others relapse after a few months, others after 20 years, and so on. 

My endo said that if it does come back, the period of remission tends to be shorter each time. Bit depressing, but I live in hope. I look after my health, avoid certain food additives, don't smoke, etc.

What they don't seem to know and where medical research is lacking, is what triggers the immune malfunction in the first place. Theories are stress and viral infections, plus an inherited tendency that puts you at risk. I favour the viral theory, but who knows?

Remember with GD the thyroid is the victim, not the villain. The problem is actually with the immune system.

 

7

Meant to say, because the thyroid gland is just the victim with GD, I see no point in removing it or destroying it with RAI. It works perfectly well when I don't have GD. So I will always opt for the B&R treatment. That is my personal opinion, and what works for me. It might be different for other people who have a harder time with GD.

8

Thank you, tlvr for sharing personal experience and knowledge valuable to us. Totally agree with you that for GD patients, not much sense to surgically remove or destroy TG with RAI...  Since this is an autoimmune disorder playing under, the key must be pursuing the way of recovering the underlining immune system from misfiring. The naturopath seems to be able to tackle this problem but with too much standard guideline to follow and a wide variety of treatments depending on individual cases. Much less to say the cost is excluded from most standard health ins plans and so unaffordable for general GD patients. However, as you said: we live in hope, so we may endure.

From your experience, in about 7 years since your first GD episode, how did the relapse happen? Did it come with no/little warning? or it came from an extremely stressful situation? or under a suspect viral attack? or it just suddenly woke up from its dormancy? Appreciate your sharing so much.

9

Yes I wish that they would make some progress into finding out what triggers the immune system.

The first time I got GD it came out of the blue. I was not more stressed than usual.

I slowly developed symptoms and realised something was wrong, but it only accelerated after I got a viral infection. Not cold or flu, but a gastric virus - vomiting and diarrhoea. After that things got bad quite quickly.

So I can't say that it was caused by the viral infection, but rather made worse by it. Or it could just have been coincidence and nothing to do with it.

The second time it happened I was not more stressed than usual. But I had a gastric virus again and next thing I had all the symptoms of GD again. So it could have been coincidence, but this is definitely something I will look out for if I get GD again. If it happens a third time, then I would say there must be a link.

Do you currently have GD or are you recovered from it?

 

10

Yes, I had GD about less than a year ago and under low dose MMI treatment and other natural path practice, I became euthyroid in 3 months... hopefully, continue keeping it at bay and gradually off ATM for the chance of immune recovery. 

Oh, this is the first time in this forum that I read GD patient revealing viral infection as the cause or trigger. Curious at if you have been medically checked for the viral infections you experienced, how did you get the infection, and exactly what kind of virus that affected starting and relapsing your GD symptoms?  Thanks for sharing.

11

really? i wish i had that good of doctor..

i am kind of resign to this sickness now

can you tell me how was your treatment?

is there other med you are using?

and wht tyroid yours are?

12

I can't say for sure that the viral infection triggered my GD. At this stage it is just a theory.

Virus was the usual vomiting bug that we have here in winter - the norovirus I think. I didn't go to the doctor.

My endocrinologist mentioned that a viral infection as trigger was one of the theories in medical research. That's what got me thinking.

13

Can you ask your doctor to prescribe the 20mg Carbimazole tablets and 100mcg thyroxine? Then you can treat yourself for 6 months in the way I talk about in my first message.

I understand that medication is expensive.

The 6 months of treatment was fine - I felt great. Just got a bit fat and hair fell out. But later I was back to normal.

I don't take any medication. I am currently very healthy.

14

How do u fix the immune system? Still trying to figure this one out.

Thank you