Re: Going off ATDs/Elaine et al

[Guest guest]

First off, I'd ask him for the info that shows that you HAVE TO quit

meds after only 18 months. I'd hit him up for that info and very

soon. That way it keeps you from getting down to the wire. I'm

guessing Carbimazole is akin to Methimazole because of different

countries maybe?

Sandy~Houston

On Thu, 9 Oct 2003 08:11:04 -0700 (PDT)

Aldyth Rae wrote:

[Guest guest]

Hi Aldyth,

Sorry you're having such problems. At times like this I am glad I

moved to Scotland 12 years ago, instead of staying in Bucks (which is

where you are, I believe).

My mum is still down there and finally was diagnosed hypo after going

to see a private specialist. Her GP said she felt the way she did

because she ate too much cheese (!?!?!?!?!?!?!) and ignored her high

TSH result. She had to get a referral from this idiot GP to go to the

doctor she wanted to see privately. The GP did this reluctantly and

basically called my mum a malingerer and hypochrondriac. And my mum,

always a feisty woman who would fight to get her way, gave up and as

she went more and more hypo. It is so unlike my mum to behave that

way.

Anyway enough of this...the point I'm getting to is that my mum's

private specialist (who she travels a long way to) asked her to get

thyroid tests and an antibody test from her GP, and sent a letter to

the GP requesting this himself. He did this as my mum doesn't enough

money to pay for the tests privately (especially after paying the

consultation fee) and this doctor is not out to get as much money as

ruthlessly as he can - he actually cares about his patients.

My mum's GP refused to do the antibody test, and my mum virtually has

to beg to get standard thyroid tests done to monitor her T4 useage.

In point, the healthcare in Bucks absolutely sucks big time. I think

you will have a lot of trouble getting a TRAb test and trying to stay

on Carbimazole. The good news? You have a lot of fight in you and if

anyone can get it, it's you.

Compare to Aberdeen? I got my TRAb test in August without any fight

at all (check my thyroid blog for how). The consultant was surprised

that it hadn't been run sooner. I am still waiting for the results. I

go back on October 21st and hopefully they will have them for me then

(it takes about 6 weeks for the results).

Ho hum. Sorry this is a rambling useless post. I just want to let you

know, Aldyth, that I am rooting for you and really hope you don't get

forced off the Carbimazole before you are ready. Ask the endo for

evidence that you have to come off it after 18 months and ask what

will happen if you were to keep taking it. Be prepared with the

studies that show long term usage of ATDs to be acceptable and safe.

Good luck.

Zoë

http://www.zoe73.net/thyroid.htm

http://www.zoe73.net/thyblog

> Hi all,

>

> I'm desperately trying to catch up on all these e-mails...lagging

behind as usual, still only 275 more to read lol!

>

> This topic caught my attention though. I saw my Endo last month

and he said I have another 3 months of taking Carbimazole then I will

have reached the 18 months and must stop taking it. I

asked...again..... for the TRAb antibody test to be done and he

refused to give me a referral for it (can't get it done without one

even when private), saying it doesn't signify anything ie. remission

or not.

>

> I am panicking, it all seems very hit and miss, with no scientific

basis for coming off the Carbimazole other than 'try it and see'.

Doesn't inspire confidence and I'm worried.

>

> Are there any signs, other than the TRAb testing, that I can look

for that could indicate whether it's a good idea to stop the

Carbimazole at my next appointment ~ was thinking of size of goitre,

blood test results etc.? My TSH has been around the 1.5 mark, and

FT3 has been about 3.5 (ref. range 2.67 - 7.03) since being on 5mg

Carbimazole in March.

>

> Any ideas?

>

> Aldyth

> Concerned Brit!

>

[Guest guest]

Hi Aldyth,

With those labs using a 5 mg dose, your next step would be to cut your dose

down to 2.5 mg daily. If you do well on this dose, then you cut it to every

other day, and then every 3rd day before stopping completely. If you begin

noticing hyper symptoms that persist when you lower the dose, you probably

aren't

ready for remission. But if you do fine with the reductions, you should see your

TSH fall but probably not lower than 0.5 and any symptoms from the changed

dose should go away after a few days. These would be good signs that remission

is likely.

If you aren't able to get the TRAb test, don't stress yourself over it.

Reducing the meds slowly is another way of going about this. Take care, Elaine