Re: intro and some questions

[Guest guest]

" elsie@... " wrote:

>

> firstly, I don't know if I've had any antibody tests - or even if they do

them here in the UK. I don't really understand it and would like to be a bit

more clued up before my app next week if I'm going to ask for them.

I dare say the UK relies more on antibody testing, as the US

whip people off for radioactive uptake scans and then look for

other possible causes on the results of the scans. RAI Uptake is

usually only done before RAI ablation.

The antibodies are the cause, there are several types of

antibodies (and the names used vary) commonly found in

autoimmune thyroid disease, but it is the ones that stimulate

the production of thyroid hormone that are the root of Graves.

www.thyroidmanager.org is heavy going but has most of the

answers...

> Secondly, I have read quite alot on RAI on many sites and have listened to

various testimonies. I think I understand the risks from the RAI, but alot of

the complications seem to be down to ending up hypothyroid. Seeing as this is

surely a risk from surgery as well - aren't there almost as many problems after

surgery?

Good question - mortality and morbidity were about the same in

1964.

Long term cancer risks are increased in RAI but it isn't a huge

risk.

I haven't seen any statistics on frequency of hypothyroidism

after RAI versus surgery. Often both aim deliberately for

hypothyroidism in the belief it is easier to treat.

You should probably question this belief, remember RAI

originates from before the days of the modern antithyroid drugs.

The real concern is RAI aggrevates the antibodies leading to eye

problems.

Surgery has some significant side effects, but with a good

surgeon surgery is very safe.

Surgery also offers a quicker recovery - take it easy for 2

weeks versus 4 + months of hyper and hypo. Surgery has a lower

relapse rate (10% in 10 years versus quite a large proportion

who have two doses of RAI - but again it depends what dose

regime they use in RAI), but surgery isn't usually performed a

second time.

You are usually advised to wait 6 months before trying for a

baby after RAI, the wait after surgery can be shorter, in both

cases you are waiting to reach a stable euthyroid condition, to

avoid the risks of both hyper and hypo thyroidism during

pregnancy.

> My main concerns with RAI are that my eyes are as yet unaffected and I don't

want to run any chances in that department. I would like children at some point

(what is the evidence for problems in this area - is it just anecdotal?) and I'm

only 27 I could have 50 odd years for those cells to mutate. It also seems that

its relatively new for Dr's to push RAI in the under 40's.

>

> thirdly, do many people stay on atd's long term successfully?

Yes, but you want to be on PTU for pregnancy not Carbimazole,

small but known risk of birth defects on Carbimazole and given

the perils of pregnancy you want to cut any risks you have easy

control over.

I'm settling on the view that ATD are the way to treat those who

don't have problems with them, but I'm open to evidence to the

contary.

Simon

PS: Your test results sound like you are going hypothyroid -

take care.

If you get routine Free T3 measurement on the NHS let me know -

here they only measure it if your other results are abnormal and

the doctor specifically orders it.

[Guest guest]

cf young wrote:

>

> Married to an expat from Manchester

> Most of us have undergone at least one endo-ectomy

> Take car, Fay

Is that some strange Mossside sign-off?

First rule in taming the NHS, know your enemy, or failing that

know what your doctor is suppose to know

http://www.prodigy.nhs.uk/Clinical%20Guidance/ReleasedGuidance/crs/Hyperthyroidi\

sm.htm

[Guest guest]

>

> I have three questions if I may?

>

> firstly, I don't know if I've had any antibody tests - or even if

> they do them here in the UK. I don't really understand it and would

> like to be a bit more clued up before my app next week if I'm going

> to ask for them.

>

I'll let the more technically inclined answer this.

> Secondly, I have read quite alot on RAI on many sites and have

> listened to various testimonies. I think I understand the risks from

> the RAI, but alot of the complications seem to be down to ending up

> hypothyroid. Seeing as this is surely a risk from surgery as well -

> aren't there almost as many problems after surgery?

The hypothyroidism from RAI is much harder to regulate due to the dying

thyroid cells; with a thyroidectomy the thyroid is simply removed, and

any remaining cells aren't subject to mutation.

> My main concerns with RAI are that my eyes are as yet unaffected

> and I don't want to run any chances in that department. I would like

> children at some point (what is the evidence for problems in this

> area - is it just anecdotal?) and I'm only 27 I could have 50 odd

> years for those cells to mutate. It also seems that its relatively

> new for Dr's to push RAI in the under 40's.

Thyroid eye disease is a very legitimate concern, even if you aren't

presenting problems at this moment.

> thirdly, do many people stay on atd's long term successfully?

Sure, you can look in the archives under Grannychristine (that it?) who

may hold the record. But you may very well be one of the many who are in

remission within 12-24 months. Just get your bloodwork done regularly, at

no more than 6-8 week intervals, and have your dosage reduced in gentle

increments. Minimum bloodwork, once you no longer need the liver and CBC

tested to be sure you're not having a dangerous reaction to the ATD's is

a TSH AND a freeT4.

> sorry to have gone on a bit but thanks for your time

Not to worry - we've all gone on at the beginning and merrily continue to

do so! Married to an expat from Manchester, I wish you lots of luck with

National Health Services. Don't let anyone bully you into settling for

less than regular monitoring and time to examine your options, even if

said medical professionals are (supposedly) top notch. Most of us have

undergone at least one endo-ectomy (I LOVE that. It means getting rid of

a bad endo.) but that maybe a luxury abroad.

Take car, Fay

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[Guest guest]

Just wanted to say welcome Elsie! I see you've already gotten several very

good responses.

Doris

[Guest guest]

Hi Elsie,

Can't really add anything, just wanted to say welcome!

God bless,

[Guest guest]

Hi Elsie

Welcome to you. You will find a wealth of knowledge on this list and

everyone is always eager to help. Lurking is good as you are learning.

I too am constantly told to have RAI but have told them 'no'. You have

options and time. The fact that you have already reduced your levels is a

good one. I have also been told that remission is 'not' possible due to my

original readings. Early this week when I went and picked up the results

from my blood tests last week, again I was told 'not' to get 'too' excited

as it won't last. Figure. So much for positive mental attitude which in

my book is the first step to recovery. Keep learning and if you have

to.........dare I say.........teach your doctor! <grin>

Sue

PS By the way my local doctor whom I am currently councelling (grin) had

RAI 20 years ago. He developed the eye problem after however today has it

'finally' under control. When I go for my visits he tells me all his

problems as he hasn't had anyone to talk to about it. Now I get my visits

for free as he said I am such a good listener!!!

At 06:20 PM 19/06/2002 +0100, you wrote:

> Well, I've been lurking for awhile now absorbing all the info I can and

>

>thoht it was time I introduced myself. I'm 27, from the UK and was

>dx'd

>in November of last year. I'm on carbimazole 10mgs and my T4 has gone

>from

>65.2 to 9.3 (normal range 9 - 20) my TSH is still less than 0.01. I

>don't

>know what my T3 is, but after reading the posts here I shall be

>asking for

>copies of all my lab results when I next see my Dr (next week).

>My Dr

>wanted me to have RAI almost immidiatly but I felt uncomfortable

>about the

>idea and put her off. I still haven't said a definate no to her

>but have

>said that I would like to see if I can go into remission on the carbimazole

>- 2 years doesn't seem that long to try it out when I think of the permancy

>of RAI or surgery. But my doc has said that she thinks it unlikely that I

>will go inot remission based on my levels at time of diagnosis (she's one

>of the top peeps in the country and does loads of research so whilst I know

>this isn't definate I do respect her opinion) so in 18 months time I could

>still be looking at RAI although she has mentioned surgery too.

>

> I have three questions if I may?

>

> I don't know if I've had any antibody tests - or even if they do them

>here in the UK. I don't really understand it and would like to be a bit

>more clued up before my app next week if I'm going to ask for them.

>

> Secondly, I have read quite alot on RAI on many sites and have listened to

>various testimonies. I think I understand the risks from the RAI, but alot

>of the complications seem to be down to ending up hypothyroid. Seeing as

>this is surely a risk from surgery as well - aren't there almost as many

>problems after surgery?

>

> My main concerns with RAI are that my eyes are as yet unaffected and I

>don't want to run any chances in that department. I would like children at

>some point (what is the evidence for problems in this area - is it just

>anecdotal?) and I'm only 27 I could have 50 odd years for those cells to

>mutate. It also seems that its relatively new for Dr's to push RAI in the

>under 40's.

>

> thirdly, do many people stay on atd's long term successfully?

>

> sorry to have gone on a bit but thanks for your time

>

> Elsie

[Guest guest]

Oh almost forgot, I have always kept my eye on my blood tests and once the

required time has passed ( time for the medication to work ) I have gone to

my local doctor and told him I am reducing the medication by 'what ever it

was at the time'. I did this so it went on record of the dosage that I was

on. He was happy to work with me as he said, 'I'm the one who is going

through it all'. I origianlly was on 30mg per day, now I'm on 5mg. If I

was still seeing the cast off Endo, I would still be on 20mg per day and

seriously Hypo.

Sue

At 06:20 PM 19/06/2002 +0100, you wrote:

> Well, I've been lurking for awhile now absorbing all the info I can and

>

>thoht it was time I introduced myself. I'm 27, from the UK and was

>dx'd

>in November of last year. I'm on carbimazole 10mgs and my T4 has gone

>from

>65.2 to 9.3 (normal range 9 - 20) my TSH is still less than 0.01. I

>don't

>know what my T3 is, but after reading the posts here I shall be

>asking for

>copies of all my lab results when I next see my Dr (next week).

>My Dr

>wanted me to have RAI almost immidiatly but I felt uncomfortable

>about the

>idea and put her off. I still haven't said a definate no to her

>but have

>said that I would like to see if I can go into remission on the carbimazole

>- 2 years doesn't seem that long to try it out when I think of the permancy

>of RAI or surgery. But my doc has said that she thinks it unlikely that I

>will go inot remission based on my levels at time of diagnosis (she's one

>of the top peeps in the country and does loads of research so whilst I know

>this isn't definate I do respect her opinion) so in 18 months time I could

>still be looking at RAI although she has mentioned surgery too.

>

> I have three questions if I may?

>

> I don't know if I've had any antibody tests - or even if they do them

>here in the UK. I don't really understand it and would like to be a bit

>more clued up before my app next week if I'm going to ask for them.

>

> Secondly, I have read quite alot on RAI on many sites and have listened to

>various testimonies. I think I understand the risks from the RAI, but alot

>of the complications seem to be down to ending up hypothyroid. Seeing as

>this is surely a risk from surgery as well - aren't there almost as many

>problems after surgery?

>

> My main concerns with RAI are that my eyes are as yet unaffected and I

>don't want to run any chances in that department. I would like children at

>some point (what is the evidence for problems in this area - is it just

>anecdotal?) and I'm only 27 I could have 50 odd years for those cells to

>mutate. It also seems that its relatively new for Dr's to push RAI in the

>under 40's.

>

> thirdly, do many people stay on atd's long term successfully?

>

> sorry to have gone on a bit but thanks for your time

>

> Elsie

[Guest guest]

Dear Elsie,

Where are you in the UK?

I was in the UK when I was diagnosed hyperthyroid, it took absolutely ages

for me to get the confirmation that it was indeed Graves' that I had and not

some other cause for the hyperthyroidism. I only finally got the

appropriate (TSI or TRAb) antibody blood test done when I returned to

Australia where I live.

I was told I was unlikely to go into remission because of the high levels -

but I am now. I won't lie, it has taken a long time and lots of effort to

change my lifestyle - about 18 months to two years and there is no guarantee

that I will not relapse, BUT I am glad to have the chance of full recovery

for the rest of my life, rather than having no thyroid gland and having to

rely on a synthetic hormone replacement.

One of my great worries when considering my options was - what happens if I

destroy my thyroid gland and then find out after that the synthetic hormone

replacement makes me sick? Simon on this board recently pointed out that if

you are going to remove someones thyroid gland, it would seem sensible to

first ensure that they tolerate the replacement hormone and this can be

easily done by using block and replace therapy prior to RAI or surgery. I

thought this was a very good point.

Do you know what the cause of your hyperthyroidism was?

I did some research about thyroid antibody tests in the UK and I am afraid

the NHS does not (did not) test for the Graves' specific antibody, but I

know you can get it done privately. They run the test either in Leeds or

Sheffield (I'd have to look it up) if you want the info I can look it up for

you, or you could go to the archives and search for " antibodies in the UK "

and the info should be there.

The antibody aspect of this illness is the thing that continually baffles me

if I don't keep using the information! Elaine always explains it very

clearly, so again in the archives, if you did a search on antibodies, or TSI

or TRAbs you would probably find alot of info that would help you.

Good luck

DAWN ROSE

:20 PM 19/06/2002 +0100, you wrote:

> > Well, I've been lurking for awhile now absorbing all the info I can

>and

> >

> >thoht it was time I introduced myself. I'm 27, from the UK and was

> >dx'd

> >in November of last year. I'm on carbimazole 10mgs and my T4 has gone

> >from

> >65.2 to 9.3 (normal range 9 - 20) my TSH is still less than 0.01. I

> >don't

> >know what my T3 is, but after reading the posts here I shall be

> >asking for

> >copies of all my lab results when I next see my Dr (next week).

> >My Dr

> >wanted me to have RAI almost immidiatly but I felt uncomfortable

> >about the

> >idea and put her off. I still haven't said a definate no to her

> >but have

> >said that I would like to see if I can go into remission on the

>carbimazole

> >- 2 years doesn't seem that long to try it out when I think of the

>permancy

> >of RAI or surgery. But my doc has said that she thinks it unlikely that I

> >will go inot remission based on my levels at time of diagnosis (she's one

> >of the top peeps in the country and does loads of research so whilst I

>know

> >this isn't definate I do respect her opinion) so in 18 months time I

>could

> >still be looking at RAI although she has mentioned surgery too.

> >

> > I have three questions if I may?

> >

> > I don't know if I've had any antibody tests - or even if they do them

> >here in the UK. I don't really understand it and would like to be a bit

> >more clued up before my app next week if I'm going to ask for them.

> >

> > Secondly, I have read quite alot on RAI on many sites and have listened

>to

> >various testimonies. I think I understand the risks from the RAI, but

>alot

> >of the complications seem to be down to ending up hypothyroid. Seeing as

> >this is surely a risk from surgery as well - aren't there almost as many

> >problems after surgery?

> >

> > My main concerns with RAI are that my eyes are as yet unaffected and I

> >don't want to run any chances in that department. I would like children

>at

> >some point (what is the evidence for problems in this area - is it just

> >anecdotal?) and I'm only 27 I could have 50 odd years for those cells to

> >mutate. It also seems that its relatively new for Dr's to push RAI in the

> >under 40's.

> >

> > thirdly, do many people stay on atd's long term successfully?

> >

> > sorry to have gone on a bit but thanks for your time

> >

> > Elsie

>

>

>

>

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>

[Guest guest]

Hi Elsie -

Welcome to the group. These wonderful people have been a real

lifeline for me.

I can answer your question about the long term ATDs. I sure wish I

could get off of these and go into remission, but I tolerate them

well (Tapazole) and am still working on it.

I have been on them for 23 years, but I am also aware that there are

people in Japan and Europe who choose to stay on them as lifelong

therapy as well. It's only uncommon in the United States because the

docs here like to get things over with, and to quote someone from

another board: MDs feel that patients have a surplus of organs, and

a deficiency of drugs.

I would also like to quote from my 1993 edition of a thyroid book I

have that was written by Surks, MD, called " The Thyroid Book,

What Goes Wrong and How to Treat It. " Not sure if his newer 1999

edition still contains this info, but here goes from Chapter 8,

Treatment of Graves' Hyperthyroidism:

Quote -

Long-Term Management -

Antithyroid drugs do not cure hyperthyroidism. They control the

disease while the patient and physician remain hopeful of a remission

of hyperthyroidism. Some patients elect to take these drugs for

lifelong therapy even if their disease does not remit.

Remission may occur at any time, from several weeks to many months

after treatment has started. Most endocrinologists will maintain you

on antithyroid drugs for one to two years to see if remission has

occured. If hyperthyroidism recurs after drug therapy is stopped,

antithyroid drugs can be prescribed for another one to two years. If

you do not have a remission after two to four year of antithyroid drug

treatment, it is very unlikely that your disease will ever go into

remission. You may then decide to continue with the antithyroid

drugs indefinitely, at a maintenanace dosage to control the

hyperthyroidism and remain in the euthyroid state.

If this is the case, you should see your doctor for a brief

examination and measurement of serum T4 and TSH about every six

months. Your doctor may adjust your maintenance dosage of PTU or

methimazole from time to time, based on the result of these

evaluation. Alternatively, if remission does not occur, you may

decide to discontinue antithyroid therapy and be treated with

radioactive iodide.

End quote.

Now if THIS endocrinologist feels (or felt in 1993) this way, why do

all the other endos look at you like you've grown a second head when

you mention long term ATDs?

Hope this helps some,

Granny Chris

-----------

> Well, I've been lurking for awhile now absorbing all the info I can

and thought it was time I introduced myself. I'm 27, from the UK and

was dx'd in November of last year. I'm on carbimazole 10mgs and my T4

has gone from 65.2 to 9.3 (normal range 9 - 20) my TSH is still less

than 0.01. I don't know what my T3 is, but after reading the posts

here I shall be asking for copies of all my lab results when I next

see my Dr (next week). My Dr wanted me to have RAI almost immidiatly

but I felt uncomfortable about the idea and put her off. I still

haven't said a definate no to her but have said that I would like to

see if I can go into remission on the carbimazole - 2 years doesn't

seem that long to try it out when I think of the permancy of RAI or

surgery. But my doc has said that she thinks it unlikely that I will

go inot remission based on my levels at time of diagnosis (she's one

of the top peeps in the country and does loads of research so whilst

I know this isn't definate I do respect her opinion) so in 18 months

time I could still be looking at RAI although she has mentioned

surgery too.

>

> I have three questions if I may?

>

> firstly, I don't know if I've had any antibody tests - or even if

they do them here in the UK. I don't really understand it and would

like to be a bit more clued up before my app next week if I'm going

to ask for them.

>

> Secondly, I have read quite alot on RAI on many sites and have

listened to various testimonies. I think I understand the risks from

the RAI, but alot of the complications seem to be down to ending up

hypothyroid. Seeing as this is surely a risk from surgery as well -

aren't there almost as many problems after surgery?

>

> My main concerns with RAI are that my eyes are as yet unaffected

and I don't want to run any chances in that department. I would like

children at some point (what is the evidence for problems in this

area - is it just anecdotal?) and I'm only 27 I could have 50 odd

years for those cells to mutate. It also seems that its relatively

new for Dr's to push RAI in the under 40's.

>

> thirdly, do many people stay on atd's long term successfully?

>

> sorry to have gone on a bit but thanks for your time

>

> Elsie

>

>

>