RE: stopping my meds

[Guest guest]

Hi Elsie,

It's not a good idea to drop your dose from 10 mg. This causes the nicely

suppressed immune system to suddenly become unharnished and it's then easily

stimulated.

You should slowly reduce your dose by 2.5 mg every few weeks. If your thyroid

hormone levels remain normal after a few weeks on a 2.5 mg daily dose of

carbimazole, then you can try taking your dose every other day for a few weeks

and

be re-tested. If your levels are staying normal on a dose of 2.5 mg every

other day, you should be able to stop your meds. But if you could have a TSI

test

you'd know for sure if remission was in the cards. TSI are the antibodies

that cause GD. When you stop producing them, you're in remission. Take care,

Elaine

[Guest guest]

First is why do you have to come off the meds? Just because of the fact that

you've been on them for 18 months? I've been on Methimazole for almost 2 yrs,

and I'm not giving them up until my Dr checks my antibodies to see if they're

down to normal level which would tell me if I'm close to remission. If your dr

is telling you that you can only be on them for 18 months, then ask for the

proof that that is so, as I think he's wrong.

There are many people who've been on the anti thyroid drugs much longer than I

have been and as long as the liver enzymes are good, and you're not having

problems with the dosage, that being on them only 18 months is a myth. My own

dr suggested that I'd have to be off the drugs for another uptake, but I also

know they can test for this another way by checking the TSI so I don't have to

give up my meds and worry about being thrown into another thyroid situation.

Sandy E~Houston

stopping my meds

Hi all

I came on this board about two years ago when I was first diagnosed

with Graves, but since then I have been lurking.

I have been stable on 10mgs of carbimazole for 18 months now after

refusing RAI.

So, it's time to come off the carbimazole and see what state my

thyroid is in naturally. I have been told that there is only about a

20% chance of my thyroid remaining normal as I was so hyper before

(T4 of 75, normal range 9 - 19) but fingers crossed.

I have an appointment to go back to the consultant in 8 weeks - 6

weeks is normal apparently, but they couldn't fit me in. I'm happy

to monitor myself and go to my GP if I think my levels are going too

high.

But, what are the 1st signs? I was undiagnosed for so long last time

that I can't remember the start of it or what the fist symptoms may

be. I also have Bipolar and so already have some tremors due to the

lithium I take for that and my anxiety can be quite bad, so not a

good thing to judge it on either.

Hopefully none this will happen and it'll all be ok!

Anyway, sorry for the rambling. I'd be grateful if anyone has any

suggestions as to what the first signs may be and when they might

appear.

Thanks

Elsie

PS I've postd this on a couple of other sites if it looks familiar.

[Guest guest]

Whatever you do, Please don't just stop taking 10 mgs of Tapazole. That can be

very dangerous to stop suddenly. I strongly suggest you drop down to 7.5 mgs -

2.5 mgs 3 times a day. You can get Tapazole in 5 mg tablets and break them in

half. After several weeks or more, if you're doing ok on 7.5 mgs and your FT4

and FT3 numbers are low, then you might consider dropping down to 5 mgs. 2.5mgs

2 times a day. It is important to very gradually reduce the amount of Tap.

that you're taking. To come off suddenly is a big shock to the thyroid.

Is there any reason you need to stop the Tapazole? Are your FT3 and FT4 very

low - in or near HypO range? I wish you the best of luck. Please take

your time. zoey

[Guest guest]

Elaine, thanks for your response. I should have said that I have been on

5mg of carbimazole for about 2 1/2 months before stopping it

completely. I have not had the test results covering this period of time

yet, they should arrive sometime this week. I stopped the carbimazole

completely a week ago today. I have no say over when I have labs done as

I'm under the NHS here in the UK. However I know that if I were to feel

unwell and request a blood test from my GP they would do one. Hence my

question about what symptoms to look out for.

I was told that they do not use the antibody tests as an indication of

remission, I did ask twice on two separate occasions with two different

Dr's, so again I have no say there. It was my choice to stop the meds

and I am aware that there is 70% + chance of my levels going up, I just

want to know what the first signs might be (other than tremor and

anxiety as I said previously these are no indication for me).

Yours

Elsie

Re: stopping my meds

Hi Elsie,

It's not a good idea to drop your dose from 10 mg. This causes the

nicely

suppressed immune system to suddenly become unharnished and it's then

easily

stimulated.

You should slowly reduce your dose by 2.5 mg every few weeks. If your

thyroid

hormone levels remain normal after a few weeks on a 2.5 mg daily dose of

carbimazole, then you can try taking your dose every other day for a few

weeks and

be re-tested. If your levels are staying normal on a dose of 2.5 mg

every

other day, you should be able to stop your meds. But if you could have a

TSI test

you'd know for sure if remission was in the cards. TSI are the

antibodies

that cause GD. When you stop producing them, you're in remission. Take

care,

Elaine

[Guest guest]

Zoey

thanks for your response. I'm not sure if Tapazole is the same as

carbimazole, but regardless I have stoped it, although as I said in my

response to Elaine I did drop down to 5mgs for a time before stopping

completely.

I'm stopping to see if I'm in remission. The Dr's at the hospital I go

to have told me the do not use antibody levels as as indicator of

remission and that the only way is to stop and see. So here I am. I just

need to know what to be aware of symptom wise. It wasn't until I left

the appointment last Monday that I realized that the symptoms I

experienced when last hyper when due to extreme thyrotoxicosis and

probably not what I will notice if my levels rise slowly or slightly.

If I am not in remission it is my intention to go back on the

carbimazole until I am or forever.

thanks again

elsie

Re: stopping my meds

Whatever you do, Please don't just stop taking 10 mgs of Tapazole. That

can be

very dangerous to stop suddenly. I strongly suggest you drop down to

7.5 mgs -

2.5 mgs 3 times a day. You can get Tapazole in 5 mg tablets and break

them in

half. After several weeks or more, if you're doing ok on 7.5 mgs and

your FT4

and FT3 numbers are low, then you might consider dropping down to 5 mgs.

2.5mgs

2 times a day. It is important to very gradually reduce the amount of

Tap.

that you're taking. To come off suddenly is a big shock to the thyroid.

Is there any reason you need to stop the Tapazole? Are your FT3 and FT4

very

low - in or near HypO range? I wish you the best of luck. Please

take

your time. zoey