Re: Post RAI.......Question

[Guest guest]

Hi Vicky, welcome.

RAI is a sucky route to go.. I'm sure you found that out already... I had

it done about 16 years ago... I don't know how much they gave me... but

they fried my gland... they had me in every two weeks for labs to see if

it would kick back in with any function and it never did.

Toxic nodules means that they were over secreting thyroid hormone... were

you in storm?

I was in storm.... my story will be coming up... need to type it out...

so I'll go into more detail there.

It would be easier to tell what's happening with you if we could see

labs... have you gotten copies of them? If not, could you give the doc a

call and request them?

Did they ever run antibody tests, that you know of? Did anyone say what

might have caused the nodules, in any way?

If the doc is going by TSH only... and doesn't know how to do it right..

that explains why he's dropping your dose.. I wonder if he's aiming for

'high in normal range' or something?

Another thought is if you are dealing with antibodies and that not all

the gland tissue was destroyed.

Another thought is how you are taking the Synthroid. Do you take it the

same time every day? Do you take it consistently either with food or

without? Has anyone discussed with you how to take the Sythroid as far as

time of day and stomach contents?

For someone with zero gland function the ballpark dose of synthetic T4 is

1 mcg per pound of body weight.. tweaking it either higher or lower to

suit the individual. You start at a low dose and gradually work up to get

the right dose.... And the goal for TSH is to drop it down to as close

to zero as possible.. for those of us with little or no gland function we

are totally dependant on replacement hormone, so the TSH should be near

zero to show that our replacement dose is sufficient to turn of the

switch to the thyroid, the TSH.

TSH is thyroid stimulating hormone, it's released by the pituitary to

communicate to the thyroid gland whether it needs to increase or decrease

hormone production. The higher the TSH level the louder the call to

increase hormone production, the lower the number, the softer the call to

produce hormone. " Most people with normal gland function " have a TSH of

1.25.

Some other interesting things that I've read, concerning hyper, is that

the TSH feedback loop may not work so hot for those that have been

severely hyper or in storm.... so then TSH testing alone is of even less

benefit for us than folks that are dealing with lesser hyper states, or

the much more common hypo condition.

My thought is to first get copies of the labs to see what he's testing

for and what his target goal is.

If he's testing ONLY TSH there is a huge problem right there... you very

very much need to know what your thyroid hormone levels are....

Specifically Free T4 and Free T3. (TSH isn't a thyroid hormone, it's a

pituitary hormone).

I think it would be a good idea to find out what caused the nodules....

what caused you to go hyper... that would revolve around antibody testing

to start with...

The quicker you can get a handle on things and get your levels where they

need to be the better you are gonna feel.

I'm wondering about your TSH coming down so very quickly after the RAI

and then continuing to drop, triggering the drop in dose... I start

wondering about antibodies and if there is still some gland tissue left

that is being stimulated by something....

How is your resting pulse rate now?

How has your appetite changed since RAI? Increased or Decreased? Has your

weight fluctuated since the RAI... gone up any or did it stall for a bit

and then begin to drop again?

Has the doc tested your adrenals?

Tons more questions.... we'll dig into it more....

When are your next labs due??

Topper ()* 16 years post RAI, no remaining gland function, self

treating, with natural, since July '02*

**************

I had 18 toxic nodules and was very hyperthyroid when I had RAI

November 1st 2005. I was told I was going to be given 8 millicuries

of rai but as of a few months ago, I found out when my endo got a new

nurse, I asked her how many I was given she said nov 1st 2005? I said

yes and she told me it's right here 30 millicuries of rai. I was a

bit upset and said, boy he really wanted to give me enough to kill an

elephants thyroid, she just smiled and said nothing.

Well, I went hypo 3 months post rai as expected and was started on

100 mcg of synthroid as it took only a week from one test to the next

to go from tsh of back up to normal range to 85.05,so 100 mcg brought

it to the normal range in just 2 weeks. I went back 8 weeks later and

he had to lower it to 88 mcg as my tsh was too low, I thought for

SURE that my level was in the normal range this time but it was too

hyper yet agin and he was forced to lower it yet again to 75 mcg.

What in the world is going on, does anyone know? He said my thyroid

is not functioning but why is my synthyroid down from 100 to 75? and

being lowered every time I go?

Has anyone heard of this happening? My weight has started to drop

again and I have never gotten it back yet.

I know I don't win the most popular person award due to going with

RAI but any comments concerning what could be happening would be

greatly appreciated. My hormone replacement has had to be at 3

different dosages now and I still feel hyper after 3 weeks on 75.

Take care and God bless,

Vicky

[Guest guest]

Hi Vicky, welcome.

RAI is a sucky route to go.. I'm sure you found that out already... I had

it done about 16 years ago... I don't know how much they gave me... but

they fried my gland... they had me in every two weeks for labs to see if

it would kick back in with any function and it never did.

Toxic nodules means that they were over secreting thyroid hormone... were

you in storm?

I was in storm.... my story will be coming up... need to type it out...

so I'll go into more detail there.

It would be easier to tell what's happening with you if we could see

labs... have you gotten copies of them? If not, could you give the doc a

call and request them?

Did they ever run antibody tests, that you know of? Did anyone say what

might have caused the nodules, in any way?

If the doc is going by TSH only... and doesn't know how to do it right..

that explains why he's dropping your dose.. I wonder if he's aiming for

'high in normal range' or something?

Another thought is if you are dealing with antibodies and that not all

the gland tissue was destroyed.

Another thought is how you are taking the Synthroid. Do you take it the

same time every day? Do you take it consistently either with food or

without? Has anyone discussed with you how to take the Sythroid as far as

time of day and stomach contents?

For someone with zero gland function the ballpark dose of synthetic T4 is

1 mcg per pound of body weight.. tweaking it either higher or lower to

suit the individual. You start at a low dose and gradually work up to get

the right dose.... And the goal for TSH is to drop it down to as close

to zero as possible.. for those of us with little or no gland function we

are totally dependant on replacement hormone, so the TSH should be near

zero to show that our replacement dose is sufficient to turn of the

switch to the thyroid, the TSH.

TSH is thyroid stimulating hormone, it's released by the pituitary to

communicate to the thyroid gland whether it needs to increase or decrease

hormone production. The higher the TSH level the louder the call to

increase hormone production, the lower the number, the softer the call to

produce hormone. " Most people with normal gland function " have a TSH of

1.25.

Some other interesting things that I've read, concerning hyper, is that

the TSH feedback loop may not work so hot for those that have been

severely hyper or in storm.... so then TSH testing alone is of even less

benefit for us than folks that are dealing with lesser hyper states, or

the much more common hypo condition.

My thought is to first get copies of the labs to see what he's testing

for and what his target goal is.

If he's testing ONLY TSH there is a huge problem right there... you very

very much need to know what your thyroid hormone levels are....

Specifically Free T4 and Free T3. (TSH isn't a thyroid hormone, it's a

pituitary hormone).

I think it would be a good idea to find out what caused the nodules....

what caused you to go hyper... that would revolve around antibody testing

to start with...

The quicker you can get a handle on things and get your levels where they

need to be the better you are gonna feel.

I'm wondering about your TSH coming down so very quickly after the RAI

and then continuing to drop, triggering the drop in dose... I start

wondering about antibodies and if there is still some gland tissue left

that is being stimulated by something....

How is your resting pulse rate now?

How has your appetite changed since RAI? Increased or Decreased? Has your

weight fluctuated since the RAI... gone up any or did it stall for a bit

and then begin to drop again?

Has the doc tested your adrenals?

Tons more questions.... we'll dig into it more....

When are your next labs due??

Topper ()* 16 years post RAI, no remaining gland function, self

treating, with natural, since July '02*

**************

I had 18 toxic nodules and was very hyperthyroid when I had RAI

November 1st 2005. I was told I was going to be given 8 millicuries

of rai but as of a few months ago, I found out when my endo got a new

nurse, I asked her how many I was given she said nov 1st 2005? I said

yes and she told me it's right here 30 millicuries of rai. I was a

bit upset and said, boy he really wanted to give me enough to kill an

elephants thyroid, she just smiled and said nothing.

Well, I went hypo 3 months post rai as expected and was started on

100 mcg of synthroid as it took only a week from one test to the next

to go from tsh of back up to normal range to 85.05,so 100 mcg brought

it to the normal range in just 2 weeks. I went back 8 weeks later and

he had to lower it to 88 mcg as my tsh was too low, I thought for

SURE that my level was in the normal range this time but it was too

hyper yet agin and he was forced to lower it yet again to 75 mcg.

What in the world is going on, does anyone know? He said my thyroid

is not functioning but why is my synthyroid down from 100 to 75? and

being lowered every time I go?

Has anyone heard of this happening? My weight has started to drop

again and I have never gotten it back yet.

I know I don't win the most popular person award due to going with

RAI but any comments concerning what could be happening would be

greatly appreciated. My hormone replacement has had to be at 3

different dosages now and I still feel hyper after 3 weeks on 75.

Take care and God bless,

Vicky

[Guest guest]

Hi Vicky, welcome.

RAI is a sucky route to go.. I'm sure you found that out already... I had

it done about 16 years ago... I don't know how much they gave me... but

they fried my gland... they had me in every two weeks for labs to see if

it would kick back in with any function and it never did.

Toxic nodules means that they were over secreting thyroid hormone... were

you in storm?

I was in storm.... my story will be coming up... need to type it out...

so I'll go into more detail there.

It would be easier to tell what's happening with you if we could see

labs... have you gotten copies of them? If not, could you give the doc a

call and request them?

Did they ever run antibody tests, that you know of? Did anyone say what

might have caused the nodules, in any way?

If the doc is going by TSH only... and doesn't know how to do it right..

that explains why he's dropping your dose.. I wonder if he's aiming for

'high in normal range' or something?

Another thought is if you are dealing with antibodies and that not all

the gland tissue was destroyed.

Another thought is how you are taking the Synthroid. Do you take it the

same time every day? Do you take it consistently either with food or

without? Has anyone discussed with you how to take the Sythroid as far as

time of day and stomach contents?

For someone with zero gland function the ballpark dose of synthetic T4 is

1 mcg per pound of body weight.. tweaking it either higher or lower to

suit the individual. You start at a low dose and gradually work up to get

the right dose.... And the goal for TSH is to drop it down to as close

to zero as possible.. for those of us with little or no gland function we

are totally dependant on replacement hormone, so the TSH should be near

zero to show that our replacement dose is sufficient to turn of the

switch to the thyroid, the TSH.

TSH is thyroid stimulating hormone, it's released by the pituitary to

communicate to the thyroid gland whether it needs to increase or decrease

hormone production. The higher the TSH level the louder the call to

increase hormone production, the lower the number, the softer the call to

produce hormone. " Most people with normal gland function " have a TSH of

1.25.

Some other interesting things that I've read, concerning hyper, is that

the TSH feedback loop may not work so hot for those that have been

severely hyper or in storm.... so then TSH testing alone is of even less

benefit for us than folks that are dealing with lesser hyper states, or

the much more common hypo condition.

My thought is to first get copies of the labs to see what he's testing

for and what his target goal is.

If he's testing ONLY TSH there is a huge problem right there... you very

very much need to know what your thyroid hormone levels are....

Specifically Free T4 and Free T3. (TSH isn't a thyroid hormone, it's a

pituitary hormone).

I think it would be a good idea to find out what caused the nodules....

what caused you to go hyper... that would revolve around antibody testing

to start with...

The quicker you can get a handle on things and get your levels where they

need to be the better you are gonna feel.

I'm wondering about your TSH coming down so very quickly after the RAI

and then continuing to drop, triggering the drop in dose... I start

wondering about antibodies and if there is still some gland tissue left

that is being stimulated by something....

How is your resting pulse rate now?

How has your appetite changed since RAI? Increased or Decreased? Has your

weight fluctuated since the RAI... gone up any or did it stall for a bit

and then begin to drop again?

Has the doc tested your adrenals?

Tons more questions.... we'll dig into it more....

When are your next labs due??

Topper ()* 16 years post RAI, no remaining gland function, self

treating, with natural, since July '02*

**************

I had 18 toxic nodules and was very hyperthyroid when I had RAI

November 1st 2005. I was told I was going to be given 8 millicuries

of rai but as of a few months ago, I found out when my endo got a new

nurse, I asked her how many I was given she said nov 1st 2005? I said

yes and she told me it's right here 30 millicuries of rai. I was a

bit upset and said, boy he really wanted to give me enough to kill an

elephants thyroid, she just smiled and said nothing.

Well, I went hypo 3 months post rai as expected and was started on

100 mcg of synthroid as it took only a week from one test to the next

to go from tsh of back up to normal range to 85.05,so 100 mcg brought

it to the normal range in just 2 weeks. I went back 8 weeks later and

he had to lower it to 88 mcg as my tsh was too low, I thought for

SURE that my level was in the normal range this time but it was too

hyper yet agin and he was forced to lower it yet again to 75 mcg.

What in the world is going on, does anyone know? He said my thyroid

is not functioning but why is my synthyroid down from 100 to 75? and

being lowered every time I go?

Has anyone heard of this happening? My weight has started to drop

again and I have never gotten it back yet.

I know I don't win the most popular person award due to going with

RAI but any comments concerning what could be happening would be

greatly appreciated. My hormone replacement has had to be at 3

different dosages now and I still feel hyper after 3 weeks on 75.

Take care and God bless,

Vicky

[Guest guest]

Vicky: I'm not a Graves Expert..but I should think you need some information here from your doc. Is there a scan or something he can do to find out what you thryoid looks like now? Maybe he only stunned your gland when he did RAI. Sometimes that happens. Lowering of dose and lowering of weight sound like they are trying to outrun your hyperness. Do you still feel hyper? Weak? Any other hyper symptoms? ~E:)Vicky Goss wrote: Hi,I had 18 toxic nodules and was very hyperthyroid when I had RAINovember 1st 2005. I was told I was going to be given 8 millicuriesof rai but as of a few months ago, I found out when my endo got a newnurse, I asked her how many I was given she said nov 1st 2005? I saidyes and she told me it's right here 30 millicuries of rai. I was abit upset and said, boy he really wanted to give me enough to kill anelephants thyroid, she just smiled and said nothing.Well, I went hypo 3 months post rai as expected and was started on100 mcg of synthroid as it took only a week from one test to the nextto go from tsh of back up to normal range to 85.05,so 100 mcg broughtit to the normal range in just 2 weeks. I went back 8 weeks later andhe had to lower it to 88 mcg as my tsh was too low, I thought forSURE that my level was in the normal range this

time but it was toohyper yet agin and he was forced to lower it yet again to 75 mcg.What in the world is going on, does anyone know? He said my thyroidis not functioning but why is my synthyroid down from 100 to 75? andbeing lowered every time I go?Has anyone heard of this happening? My weight has started to dropagain and I have never gotten it back yet. . ~EG Connecticut T-T 2 years ago - 60 mcg Synthetic/97.5mg Armour

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

I am a post RAI person for 2 years. My first year was pretty rocky

with up and down swings of hyper to hypo. It has finally settled

down now hopefully.

First of all the TSH is not the one to watch after rai, because the

TSH can stay suppressed for a very long time(like mine) so the Ft4

and

Ft3 need to be closely monitored. So, if your doctor continutes to

watch your TSH, believe me you will never be well.

Betty

>

> Vicky Goss wrote:

> Hi,

>

> I had 18 toxic nodules and was very hyperthyroid when I had RAI

> November 1st 2005. I was told I was going to be given 8 millicuries

> of rai but as of a few months ago, I found out when my endo got a

new

> nurse, I asked her how many I was given she said nov 1st 2005? I

said

> yes and she told me it's right here 30 millicuries of rai. I was a

> bit upset and said, boy he really wanted to give me enough to kill

an

> elephants thyroid, she just smiled and said nothing.

>

> Well, I went hypo 3 months post rai as expected and was started on

> 100 mcg of synthroid as it took only a week from one test to the

next

> to go from tsh of back up to normal range to 85.05,so 100 mcg

brought

> it to the normal range in just 2 weeks. I went back 8 weeks later

and

> he had to lower it to 88 mcg as my tsh was too low, I thought for

> SURE that my level was in the normal range this time but it was too

> hyper yet agin and he was forced to lower it yet again to 75 mcg.

>

> What in the world is going on, does anyone know? He said my thyroid

> is not functioning but why is my synthyroid down from 100 to 75?

and

> being lowered every time I go?

>

> Has anyone heard of this happening? My weight has started to drop

> again and I have never gotten it back yet.

>

>

>

>

> .

>

>

>

>

>

> ~EG Connecticut T-T 2 years ago - 60 mcg Synthetic/97.5mg

Armour

>

>

>

>

>

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

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>