Re: fT3 low, fT4 middlish; stop Carbimazole??

[Guest guest]

Hi ,

The most important factor is how do you feel ?

Keep in mind, weaning off the drug is ideally done very slowly. It took me

six months starting at an already very low dose.

Plus, do you KNOW all your triggers and are they habit to avoid. No room for

screw ups once you start getting on REALLY small doses.

-Pam L - who did find remission with no TSI test,

but does not recommend it.

Main requirement..super sensitivity !

3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of

PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG

picture !

Pills alone only fix symptoms. We must help our bodies to heal.

[Guest guest]

Hi ,

The most important factor is how do you feel ?

Keep in mind, weaning off the drug is ideally done very slowly. It took me

six months starting at an already very low dose.

Plus, do you KNOW all your triggers and are they habit to avoid. No room for

screw ups once you start getting on REALLY small doses.

-Pam L - who did find remission with no TSI test,

but does not recommend it.

Main requirement..super sensitivity !

3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of

PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG

picture !

Pills alone only fix symptoms. We must help our bodies to heal.

[Guest guest]

Hi ,

It's not unusual for one level to be low with the other normal, which is why

it's important to run both tests. You could either be converting less T3 from

T4 than usual or you may be producing more T4 relative to T3.

What's important is that this can be causing symptoms of hypothryoidism,

which fits with your TSH that's rising. You don't want your TSH to rise

higher so I can see why your doctor is suggesting that you stop ATDs.

For many years, doctors didn't have the TSI test available and they'd just

stop ATDs when patients became hypothyroid on a low dose, especially after a

certain period of time. Some people would relapse, but the remission rate was

still fairly high using this approach since more doctors had experience with

using ATDs.

You could reduce the dose slowly, and then take it every other day and later

every 3rd day. And when you do stop it, watch for symptoms of relapse which

probably wouldn't occur for at least several months. Take care, Elaine

[Guest guest]

Hi ,

It's not unusual for one level to be low with the other normal, which is why

it's important to run both tests. You could either be converting less T3 from

T4 than usual or you may be producing more T4 relative to T3.

What's important is that this can be causing symptoms of hypothryoidism,

which fits with your TSH that's rising. You don't want your TSH to rise

higher so I can see why your doctor is suggesting that you stop ATDs.

For many years, doctors didn't have the TSI test available and they'd just

stop ATDs when patients became hypothyroid on a low dose, especially after a

certain period of time. Some people would relapse, but the remission rate was

still fairly high using this approach since more doctors had experience with

using ATDs.

You could reduce the dose slowly, and then take it every other day and later

every 3rd day. And when you do stop it, watch for symptoms of relapse which

probably wouldn't occur for at least several months. Take care, Elaine

[Guest guest]

Hello Pam!

I hope this finds you well.

Actually, I am hypO - I do feel very hypO actually - I've come to the conclusion

that my levels need only be a tiny bit out and it has an exaggerated effect, so

I do want to drop the Carbimazole, but I don't think just stopping like the

doctor said is a good idea - and it doesn't seem that you think so too, so

that's good.

I do know a lot of my triggers - unfortunately I seem to have rather too many

and my diet is somewhat constricted at the moment. But I suppose that is a

small price to pay.

Were you on Carbimazole? How small a dose did you go to and what kind of steps

down did you take? Did you wean off Carbimazole and onto herbs maybe???

Interested to hear your thoughts.

Re: fT3 low, fT4 middlish; stop Carbimazole??

Hi ,

The most important factor is how do you feel ?

Keep in mind, weaning off the drug is ideally done very slowly. It took me

six months starting at an already very low dose.

Plus, do you KNOW all your triggers and are they habit to avoid. No room for

screw ups once you start getting on REALLY small doses.

-Pam L - who did find remission with no TSI test,

but does not recommend it.

Main requirement..super sensitivity !

3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of

PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG

picture !

Pills alone only fix symptoms. We must help our bodies to heal.

[Guest guest]

Hello Pam!

I hope this finds you well.

Actually, I am hypO - I do feel very hypO actually - I've come to the conclusion

that my levels need only be a tiny bit out and it has an exaggerated effect, so

I do want to drop the Carbimazole, but I don't think just stopping like the

doctor said is a good idea - and it doesn't seem that you think so too, so

that's good.

I do know a lot of my triggers - unfortunately I seem to have rather too many

and my diet is somewhat constricted at the moment. But I suppose that is a

small price to pay.

Were you on Carbimazole? How small a dose did you go to and what kind of steps

down did you take? Did you wean off Carbimazole and onto herbs maybe???

Interested to hear your thoughts.

Re: fT3 low, fT4 middlish; stop Carbimazole??

Hi ,

The most important factor is how do you feel ?

Keep in mind, weaning off the drug is ideally done very slowly. It took me

six months starting at an already very low dose.

Plus, do you KNOW all your triggers and are they habit to avoid. No room for

screw ups once you start getting on REALLY small doses.

-Pam L - who did find remission with no TSI test,

but does not recommend it.

Main requirement..super sensitivity !

3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of

PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG

picture !

Pills alone only fix symptoms. We must help our bodies to heal.

[Guest guest]

Hi ,

It must be frustrating not to be able to get the TSI.

I have JUST now stopped the carbimazole all together. I was on a very low

dose for about six months I think about 5mg a day and then, whilst

introducing bugleweed, tincture (along with a combnation of Yarrow, Nettle

and Motherwort) I dropped to very low intermittent doses whenever I felt my

hyper symptoms stirring up again. I also found lemon balm tea very calming

too.

I have spent the last year taking 2.5mgs (half a 5mg tablet) " as and when

required " .. which has meant not taking any for about 3 days, then taking

2.5mg for two days or sometimes three, then every other day, then every two

days, then every three followed by a gap of up to ten days before I found I

needed to calm down again.

The medical profession mostly says that such small doses of Carbimazole will

not have an impact on your body, but I claim to be able to feel the effects

of 2.5mg of carbimazole almost immediately after taking it and others here

do too. Perhaps it is psychological, but even if it is, that's okay with me

if it keeps my hyper symptoms in check!

Also, if you want to try this weaning process instead of just stopping

carbimazole, and your doctor is resistent in this way, saying that it won't

make any difference - then it is good to say to him or her, well, if it

doesn't make any difference then what is the harm in my doing it this way if

it makes me feel more comfortable about coming off the carbimazole?

I so strongly feel that gradual change is one of the keys to not bouncing

your body back onto that hyper/hypo pendulum.

Pam is absolutely right when she says to think about your triggers, your

lifestyle and how YOU feel in relation to your thyroid. I did the " right

thing " by my first endocrinologist for a good while - just obeying her

instructions and then waiting for three or six months between meetings when

she would adjust my dose of carbimazole quite dramatically. I finally

realised that my reaction time to changes in dose of meds was far more

immediate than the number of visits I could have with any doctor and that I

needed to learn how to manage my own condition, day by day.

It didn't please that endo, but my new one is really into my " interference " !

How much Carbimazole do you take each day at the moment?

Good luck with it all.

DAWN ROSE

Reply-To: graves_support

To: graves_support >

Subject: Re: fT3 low, fT4 middlish; stop Carbimazole??

Date: Sun, 19 Jan 2003 20:24:27 -0000

Hello Pam!

I hope this finds you well.

Actually, I am hypO - I do feel very hypO actually - I've come to the

conclusion that my levels need only be a tiny bit out and it has an

exaggerated effect, so I do want to drop the Carbimazole, but I don't think

just stopping like the doctor said is a good idea - and it doesn't seem that

you think so too, so that's good.

I do know a lot of my triggers - unfortunately I seem to have rather too

many and my diet is somewhat constricted at the moment. But I suppose that

is a small price to pay.

Were you on Carbimazole? How small a dose did you go to and what kind of

steps down did you take? Did you wean off Carbimazole and onto herbs

maybe???

Interested to hear your thoughts.

Re: fT3 low, fT4 middlish; stop Carbimazole??

Hi ,

The most important factor is how do you feel ?

Keep in mind, weaning off the drug is ideally done very slowly. It took

me

six months starting at an already very low dose.

Plus, do you KNOW all your triggers and are they habit to avoid. No room

for

screw ups once you start getting on REALLY small doses.

-Pam L - who did find remission with no TSI test,

but does not recommend it.

Main requirement..super sensitivity !

3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction

of

PTU, improved lifestyle, excellent nutrition,herbs, and looking at the

BIG

picture !

Pills alone only fix symptoms. We must help our bodies to heal.

[Guest guest]

Hi ,

It must be frustrating not to be able to get the TSI.

I have JUST now stopped the carbimazole all together. I was on a very low

dose for about six months I think about 5mg a day and then, whilst

introducing bugleweed, tincture (along with a combnation of Yarrow, Nettle

and Motherwort) I dropped to very low intermittent doses whenever I felt my

hyper symptoms stirring up again. I also found lemon balm tea very calming

too.

I have spent the last year taking 2.5mgs (half a 5mg tablet) " as and when

required " .. which has meant not taking any for about 3 days, then taking

2.5mg for two days or sometimes three, then every other day, then every two

days, then every three followed by a gap of up to ten days before I found I

needed to calm down again.

The medical profession mostly says that such small doses of Carbimazole will

not have an impact on your body, but I claim to be able to feel the effects

of 2.5mg of carbimazole almost immediately after taking it and others here

do too. Perhaps it is psychological, but even if it is, that's okay with me

if it keeps my hyper symptoms in check!

Also, if you want to try this weaning process instead of just stopping

carbimazole, and your doctor is resistent in this way, saying that it won't

make any difference - then it is good to say to him or her, well, if it

doesn't make any difference then what is the harm in my doing it this way if

it makes me feel more comfortable about coming off the carbimazole?

I so strongly feel that gradual change is one of the keys to not bouncing

your body back onto that hyper/hypo pendulum.

Pam is absolutely right when she says to think about your triggers, your

lifestyle and how YOU feel in relation to your thyroid. I did the " right

thing " by my first endocrinologist for a good while - just obeying her

instructions and then waiting for three or six months between meetings when

she would adjust my dose of carbimazole quite dramatically. I finally

realised that my reaction time to changes in dose of meds was far more

immediate than the number of visits I could have with any doctor and that I

needed to learn how to manage my own condition, day by day.

It didn't please that endo, but my new one is really into my " interference " !

How much Carbimazole do you take each day at the moment?

Good luck with it all.

DAWN ROSE

Reply-To: graves_support

To: graves_support >

Subject: Re: fT3 low, fT4 middlish; stop Carbimazole??

Date: Sun, 19 Jan 2003 20:24:27 -0000

Hello Pam!

I hope this finds you well.

Actually, I am hypO - I do feel very hypO actually - I've come to the

conclusion that my levels need only be a tiny bit out and it has an

exaggerated effect, so I do want to drop the Carbimazole, but I don't think

just stopping like the doctor said is a good idea - and it doesn't seem that

you think so too, so that's good.

I do know a lot of my triggers - unfortunately I seem to have rather too

many and my diet is somewhat constricted at the moment. But I suppose that

is a small price to pay.

Were you on Carbimazole? How small a dose did you go to and what kind of

steps down did you take? Did you wean off Carbimazole and onto herbs

maybe???

Interested to hear your thoughts.

Re: fT3 low, fT4 middlish; stop Carbimazole??

Hi ,

The most important factor is how do you feel ?

Keep in mind, weaning off the drug is ideally done very slowly. It took

me

six months starting at an already very low dose.

Plus, do you KNOW all your triggers and are they habit to avoid. No room

for

screw ups once you start getting on REALLY small doses.

-Pam L - who did find remission with no TSI test,

but does not recommend it.

Main requirement..super sensitivity !

3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction

of

PTU, improved lifestyle, excellent nutrition,herbs, and looking at the

BIG

picture !

Pills alone only fix symptoms. We must help our bodies to heal.

[Guest guest]

Hello Dawn Rose

Glad to hear you're doing so well now.

I'm afraid that it didn't take long for me to start dealing with my own doses as

I realised that my doctor knew nothing about it and my endo not a great deal

more. The doctor who wrote to me and suggested I stop the Carbimazole

altogether is a private one that I've been to a couple of times to see about

allergies. I agree with you ref stopping it very very slowly so I shall be

ignoring his advice.

However, I am interested in your intermittent doses - I didn't think that would

work - I thought that as I was weaning it should be at a level pace but less and

less ie 125mg twice a day, then 100mg twice a day etc etc and I couldn't work

out where to go from there. Actually, I managed to get to .833333mg twice a day

which is what I'm at at the moment. If someone said to me that it didn't make

any difference I would have to argue - I was down to that last April and quite

hypo (I've decided my system is ridiculously sensitive to the slightest changes)

- and then I went away for two weeks and somehow forgot the second dose in the

day and by the time I came home I was really hyper again. This is why I'm a bit

worried about weaning right off now. How do I know it's the right time? How

did you know? or did you have a TSI test?

Thanks for your reply.

Take care,

Re: fT3 low, fT4 middlish; stop Carbimazole??

Hi ,

The most important factor is how do you feel ?

Keep in mind, weaning off the drug is ideally done very slowly. It took

me

six months starting at an already very low dose.

Plus, do you KNOW all your triggers and are they habit to avoid. No room

for

screw ups once you start getting on REALLY small doses.

-Pam L - who did find remission with no TSI test,

but does not recommend it.

Main requirement..super sensitivity !

3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction

of

PTU, improved lifestyle, excellent nutrition,herbs, and looking at the

BIG

picture !

Pills alone only fix symptoms. We must help our bodies to heal.

[Guest guest]

Hello Dawn Rose

Glad to hear you're doing so well now.

I'm afraid that it didn't take long for me to start dealing with my own doses as

I realised that my doctor knew nothing about it and my endo not a great deal

more. The doctor who wrote to me and suggested I stop the Carbimazole

altogether is a private one that I've been to a couple of times to see about

allergies. I agree with you ref stopping it very very slowly so I shall be

ignoring his advice.

However, I am interested in your intermittent doses - I didn't think that would

work - I thought that as I was weaning it should be at a level pace but less and

less ie 125mg twice a day, then 100mg twice a day etc etc and I couldn't work

out where to go from there. Actually, I managed to get to .833333mg twice a day

which is what I'm at at the moment. If someone said to me that it didn't make

any difference I would have to argue - I was down to that last April and quite

hypo (I've decided my system is ridiculously sensitive to the slightest changes)

- and then I went away for two weeks and somehow forgot the second dose in the

day and by the time I came home I was really hyper again. This is why I'm a bit

worried about weaning right off now. How do I know it's the right time? How

did you know? or did you have a TSI test?

Thanks for your reply.

Take care,

Re: fT3 low, fT4 middlish; stop Carbimazole??

Hi ,

The most important factor is how do you feel ?

Keep in mind, weaning off the drug is ideally done very slowly. It took

me

six months starting at an already very low dose.

Plus, do you KNOW all your triggers and are they habit to avoid. No room

for

screw ups once you start getting on REALLY small doses.

-Pam L - who did find remission with no TSI test,

but does not recommend it.

Main requirement..super sensitivity !

3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction

of

PTU, improved lifestyle, excellent nutrition,herbs, and looking at the

BIG

picture !

Pills alone only fix symptoms. We must help our bodies to heal.

[Guest guest]

Hello Elaine

Thanks for your reply. I'm happy to hear that it's not unusual for one level to

be low with the other normal. I shall now point this out to my GP and endo (if

I ever go back to see them again) as yet another reason for doing fT3 and fT4 -

although they won't do either at all if the TSH is within range anyway so that's

probably a waste of time, too...

Anyway - thanks for the advice. I think I shall do the weaning bit and try to

remain virtuous diet-wise, stress-wise and every other wise that seems to be

needed.

Take care,

Re: fT3 low, fT4 middlish; stop Carbimazole??

Hi ,

It's not unusual for one level to be low with the other normal, which is why

it's important to run both tests. You could either be converting less T3 from

T4 than usual or you may be producing more T4 relative to T3.

What's important is that this can be causing symptoms of hypothryoidism,

which fits with your TSH that's rising. You don't want your TSH to rise

higher so I can see why your doctor is suggesting that you stop ATDs.

For many years, doctors didn't have the TSI test available and they'd just

stop ATDs when patients became hypothyroid on a low dose, especially after a

certain period of time. Some people would relapse, but the remission rate was

still fairly high using this approach since more doctors had experience with

using ATDs.

You could reduce the dose slowly, and then take it every other day and later

every 3rd day. And when you do stop it, watch for symptoms of relapse which

probably wouldn't occur for at least several months. Take care, Elaine