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Re: My First Post

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Hi Phil,

In Europe, Carbimazole is often used long term and there are no reported ill

effects of long term usage.

Depression is one of the earliest symptoms of hypothyroidism. TSH often takes

a long time to rise and often doesn't rise until hypothyroidism sets in.

Palpitations are also often seen in hypothyroidism. When you're on ATDs TSH

can't

be used to monitor your thyroid status. Make sure you're having both FT4 and

FT3 levels and that they're within range. If you're becoming hypothyroid on a

low dose of carbimazole you might also want to have your TSI level checked to

make sure you're not already in remission or have spontaneously moved into

hypothyroidism. Take care, Elaine

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Hi Phil and welcome,

Your post brings up lots of questions. First, let me say that I have been on

Tapazole, equivalent to your ATD, since early 1995--so about the same time

as you. I've never done b & r, nor have I worried about the long-term use of

the drug, as I've been on a low maintenance dose for the most part. There is

one person who occasionally posts here who's been on Tap for something like

23 years, too.

We always love history here--specifically, specific history. Lab results

(with the lab norms) over time, coupled if you keep records of it, with the

doses you're on. It's hard to help someone if you are groping around in the

dark, without knowing such things.

It does sound like you're a bit desperate at this point--understandably so,

if you've been wrestling with GD for 9 years and haven't felt right. I

suspect we'll be able to give you some help, there are so many people here

with varied thyroid experiences, and even a few who have the medical

knowledge to know what they're talking about. (no, not me!)

I assume with the ATD you're on that you might be British--there are quite a

few people here, and on Mediboard as well, who have wrangled with that

particularly thorny medical care system, and can help with it, too.

There are also lots of folks here who've had subtotal thyroidectomies, so

you've found a good group to join.

Terry

>

> Reply-To: graves_support

> Date: Sat, 01 Nov 2003 08:47:37 -0000

> To: graves_support

> Subject: My First Post

>

> Hello All,

>

> This is my first post to the group after finding it.

>

> I have had Graves for the last 9 years, Hyperthyroidism and Eye

> problems. I am due to have a sub-total thyroidectomy in December,

> as long as it does not get cancelled again.

>

> Looking at some of the posts here, it seems to me that some have had

> surgery a little under a year after they were diagnosed with Graves.

> Does 9 years of illness seem a little to long to people here before

> I was offered surgery?

>

> At present the medication I am on is Carbimazole 60Mg Daily. I have

> been on a mixture of Carbimazole and Thyroxine (block and replace)

> for most of these 9 years and have in the last 12 months been moved

> just to the Carbimazole to bring my thyroid under control ready for

> surgery.

>

> Does anyone know if there are any long term problems with being on

> Carbimazole for this length of time? My Consultant Endo has hinted

> in the past that I should not take this drug long term, in my view 9

> years is just a little too long term!!

>

> Eventhough my last set of bloods said my thryroid function was

> correct, I am not so sure all is normal, I am still suffering from

> heat sensitivity, tremors, palpatations and worst of all now the

> mood swings seem to be veering towards depression. Holding down my

> job is becoming more and more impossible as the weeks go on.

>

> Its nice to find a group on here where I can ask these questions and

> have a little whinge, it does beat bothering my friends and family

> all the time.

>

> Phil

>

>

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

> ------------------------------------------------------------------------------

> --------

>

>

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> At present the medication I am on is Carbimazole 60Mg Daily.

Wow. This is a megadose.

You may want to check out the Graves chat on Mediboard. I hear that Simon

from the UK is active there. He has an unusual story in that he had a

subtotal and his Graves came back. This is unusual - it's more likely

that you'll go hypo. Within the last week or so I reposted an old message

someone sent to the group on questions to ask a surgeon. Caroline from

Australia's experience will be helpful too - if you have the time check

the archives from 3 years back under .

My biggest piece of advice, which you may choose to take with as much

non-iodised salt as you want, having not been through this, is to make

sure your dr. is experienced with treating hypo patients and open to Free

T3 testing and supplementing if needed.

Take care, Fay

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