Re: Re: thyroid storm, RAI, hypo and fighting for normal

[Guest guest]

Karyn,

Many people think that Grave's can be triggered by

stress, which would definetely make sense in my case.

But with widely fluctuating hormones (sex hormones and

thyroid), who knows which came first - the stress or

the mood swings from crazy hormones.

And it's common to swing from HyperT to HypoT, which

might have happened to you. This happens alot in the

case of Hashi's. I dont think you went into Grave's

remission though. It's hard to say when the

antibodies were stirred up without being tested for

them.

The downside of RAI is that it stimulates antibodies,

which is why I don't understand why so many docs push

for it. So I would make sure to get them tested

(Grave's antibodies and Hashi's antibodies) every year

or so. But as long as you are monitoring symptoms and

are on thyroid meds, this is less of a concern I

guess. I wouldn't wait too long to get on thyroid

meds. RAI is pretty powerful and you dont want to

suffer more than you have to.

Very frustrating disease.....

SAMMIE

--- karynhelen wrote:

> I am only taking atenolol for my heart rate.... I am

> sure that once

> I get on thyroid replacement I will end up going off

> it.

> It sounds like you were undiagnosed for a long time.

> I think I had this for years if that is possible. I

> remember 4 years

> ago I lost lots of weight and my lots of hair fell

> out, I was

> trembling and very irritable. I had just gone

> through a break up,

> had been with the guy for 11 years, so I thought it

> was stress.

> Now that I think about it, I wonder if I could have

> been

> hyperthyroid and then gone into remission?

> Do you know if that is possible? Can you go up and

> down like that?

> If anyone knows, I would love to hear some feedback.

> Thanks,

> Karyn

>

>

>

>

> > > > > Hello there,

> > > > > I have just joined the group, but was

> treated

> > > with RAI almost

> > > two

> > > > > months ago. I am just starting to feel some

> > > relief from the

> > > > symptoms

> > > > > and can't wait to start feeling better all

> > > together.

> > > > >

> > > > > My question for you all is, how do you

> explain

> > > to people what is

> > > > going

> > > > > on with you emotionally and physically? I

> have

> > > tried to explain

> > > to

> > > > > friends and colleagues, however I am under

> the

> > > impression that

> > > > they

> > > > > think I am making this up, that it is in my

> head

> > > and I should

> > > get

> > > > over

> > > > > it. I am disappointed in my friends to say

> the

> > > least... Have any

> > > > of you

> > > > > encountered this and if so, how do/did you

> deal

> > > with it?

> > > > >

> > > > > Thanks for your help,

> > > > > Karyn

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Karyn,

Many people think that Grave's can be triggered by

stress, which would definetely make sense in my case.

But with widely fluctuating hormones (sex hormones and

thyroid), who knows which came first - the stress or

the mood swings from crazy hormones.

And it's common to swing from HyperT to HypoT, which

might have happened to you. This happens alot in the

case of Hashi's. I dont think you went into Grave's

remission though. It's hard to say when the

antibodies were stirred up without being tested for

them.

The downside of RAI is that it stimulates antibodies,

which is why I don't understand why so many docs push

for it. So I would make sure to get them tested

(Grave's antibodies and Hashi's antibodies) every year

or so. But as long as you are monitoring symptoms and

are on thyroid meds, this is less of a concern I

guess. I wouldn't wait too long to get on thyroid

meds. RAI is pretty powerful and you dont want to

suffer more than you have to.

Very frustrating disease.....

SAMMIE

--- karynhelen wrote:

> I am only taking atenolol for my heart rate.... I am

> sure that once

> I get on thyroid replacement I will end up going off

> it.

> It sounds like you were undiagnosed for a long time.

> I think I had this for years if that is possible. I

> remember 4 years

> ago I lost lots of weight and my lots of hair fell

> out, I was

> trembling and very irritable. I had just gone

> through a break up,

> had been with the guy for 11 years, so I thought it

> was stress.

> Now that I think about it, I wonder if I could have

> been

> hyperthyroid and then gone into remission?

> Do you know if that is possible? Can you go up and

> down like that?

> If anyone knows, I would love to hear some feedback.

> Thanks,

> Karyn

>

>

>

>

> > > > > Hello there,

> > > > > I have just joined the group, but was

> treated

> > > with RAI almost

> > > two

> > > > > months ago. I am just starting to feel some

> > > relief from the

> > > > symptoms

> > > > > and can't wait to start feeling better all

> > > together.

> > > > >

> > > > > My question for you all is, how do you

> explain

> > > to people what is

> > > > going

> > > > > on with you emotionally and physically? I

> have

> > > tried to explain

> > > to

> > > > > friends and colleagues, however I am under

> the

> > > impression that

> > > > they

> > > > > think I am making this up, that it is in my

> head

> > > and I should

> > > get

> > > > over

> > > > > it. I am disappointed in my friends to say

> the

> > > least... Have any

> > > > of you

> > > > > encountered this and if so, how do/did you

> deal

> > > with it?

> > > > >

> > > > > Thanks for your help,

> > > > > Karyn

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Sammi... RAI stimulating antibodies... It doesn't exactly stimulate... but it's only with Grave's.... in Grave's when the thyroid is gone, the antibodies don't have the thyroid to work on so they MAY go for something else... often it's the eyes... Thyroid Eye Disease... but now they are saying that TED may also happen from Hashi's...

I'm not defending RAI, I think it should only be used as the last option, when there are no other options.... I do agree too many docs use it as the easy way out... the theory being that if you get rid of the gland with 'just this little pill' that they only need deal with adding some hormone and not actually have to do the work of dealing with a fluctuating gland.

Just my two cents.

Topper ()

On Thu, 19 May 2005 19:02:12 -0700 (PDT) Sammie Baker writes:

Karyn,Many people think that Grave's can be triggered bystress, which would definetely make sense in my case. But with widely fluctuating hormones (sex hormones andthyroid), who knows which came first - the stress orthe mood swings from crazy hormones.And it's common to swing from HyperT to HypoT, whichmight have happened to you. This happens alot in thecase of Hashi's. I dont think you went into Grave'sremission though. It's hard to say when theantibodies were stirred up without being tested forthem.The downside of RAI is that it stimulates antibodies,which is why I don't understand why so many docs pushfor it. So I would make sure to get them tested(Grave's antibodies and Hashi's antibodies) every yearor so. But as long as you are monitoring symptoms andare on thyroid meds, this is less of a concern Iguess. I wouldn't wait too long to get on thyroidmeds. RAI is pretty powerful and you dont want tosuffer more than you have to.Very frustrating disease.....SAMMIE

[Guest guest]

Hey Topper,

I guess we hear different things. I heard that the

radioactive iodine stimulates the antibodies. That

the purpose of RAI is to kill the thyroid and get rid

of the HyperT symptoms that many think are life

threatening. In my opinion, going on beta blockers

and ATDs can rid most of these issues within a few

hours/days. I was never HyperT, so this didn't apply

to me at all.

Grave's disease and TED are related but two separate

diseases that run separate courses. However, the best

way to avoid worsening the eye disease is to keep the

thyroid levels in normal ranges. HyperT or HypoT will

make it worse.

I'm a little confused by your post though. Because

when someone has surgery to remove the thyroid, this

doesn't stimulate the TED like RAI does. Being HypoT

(no matter by what source - too much ATDs, RAI or

surgery can stimulate the antibodies, but nothing as

bad as RAI). Grave's folks aren't supposed to be

eating high sources of iodine, so using an radioactive

version of iodine seems utterly counterproductive in

the case of Grave's.

I think there is a purpose to RAI, but only in the

case of special circumstances like cancer wherein meds

and surgery can't help the cancer and is a much more

serious situation. I know your situation was ususual

as well.

I'm just so shocked that docs push for this. And they

do it often when they overmedicated someone on ATDs.

People ususally have problems because they were on

ATDs for too long. This happened to me. I was sicker

on ATDs then before I was diagnosed. In my point of

desperation I almost did RAI. Not that I'm educated

and looked back on my labs, I noticed that I was

suffering because I was WAY HypoT. No fricken wonder.

It wasn't the Grave's disease that was the problem,

it was my damn ENDO killing me. RAI would have made

me 1000% times worse by making me even more HypoT.

And I think it's harder to manage a thyroid post RAI,

then when one is HyperT. Most RAI folks keep

increasing their thyroid meds each year after the

ablation.

Truthfully I dont think managing Grave's or HyperT is

that difficult with ATDs. You just have to know what

you are doing and NOT go by TSH. Most overmedicate in

an effort to raise TSH. But in the case of Grave's

with ATDs, TSH will stay suppressed for long periods.

I've seen many patients with Free Ts way under range,

but a low TSH and the docs keep them on super high

levels of ATDs. Total and utter barbaric torture.

SAMMIE

--- topper2@... wrote:

> Sammi... RAI stimulating antibodies... It doesn't

> exactly stimulate...

> but it's only with Grave's.... in Grave's when the

> thyroid is gone, the

> antibodies don't have the thyroid to work on so they

> MAY go for something

> else... often it's the eyes... Thyroid Eye

> Disease... but now they are

> saying that TED may also happen from Hashi's...

>

> I'm not defending RAI, I think it should only be

> used as the last option,

> when there are no other options.... I do agree too

> many docs use it as

> the easy way out... the theory being that if you get

> rid of the gland

> with 'just this little pill' that they only need

> deal with adding some

> hormone and not actually have to do the work of

> dealing with a

> fluctuating gland.

>

> Just my two cents.

>

> Topper ()

>

> On Thu, 19 May 2005 19:02:12 -0700 (PDT) Sammie

> Baker

> writes:

> Karyn,

>

> Many people think that Grave's can be triggered by

> stress, which would definetely make sense in my

> case.

> But with widely fluctuating hormones (sex hormones

> and

> thyroid), who knows which came first - the stress or

> the mood swings from crazy hormones.

>

> And it's common to swing from HyperT to HypoT, which

> might have happened to you. This happens alot in

> the

> case of Hashi's. I dont think you went into Grave's

> remission though. It's hard to say when the

> antibodies were stirred up without being tested for

> them.

>

> The downside of RAI is that it stimulates

> antibodies,

> which is why I don't understand why so many docs

> push

> for it. So I would make sure to get them tested

> (Grave's antibodies and Hashi's antibodies) every

> year

> or so. But as long as you are monitoring symptoms

> and

> are on thyroid meds, this is less of a concern I

> guess. I wouldn't wait too long to get on thyroid

> meds. RAI is pretty powerful and you dont want to

> suffer more than you have to.

>

> Very frustrating disease.....

>

>

> SAMMIE

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[Guest guest]

Karyn,

Yes, it can trigger RAI.

Please take a look at 's story.

http://hometown.aol.com/lisareynolds64/myhomepage/personal.html

SAMMIE

--- karynhelen wrote:

> I am lucky that I don't have TED, but will the RAI

> possibly trigger

> that?

> And I hadn't thought of what the antibodies will do

> if they don't

> have a thyroid gland to attack.

>

> Wow, this is not as cut and dry as I thought.

> Karyn

>

>

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[Guest guest]

Okay.. I understand what your looking at....

The choice to use radioactive iodine is because one important function of the thyroid gland is to filter iodine out of the blood.. The radioactive iodine is filtered out by the gland and is held there, concentrating the radiation in the gland, killing it.

Who knows about radiation here? When a molecule is irradiated is it's shape changed in any way? My thought is, can an irradiated iodine molecule be combined during natural glandular activity to produce a T4 molecule that would be radioactive? Or are we looking at how it was explained to me?

I was told that it stays in the gland and as the tissue dies the fluids in the gland move back into the blood stream, it's at that point that the patient is expelling radiation with their body fluids (urine, feces, sweat, spit, moisture in exhaled breath, tears, body oils, etc)

I'd like to explore this more... granted, won't make a heck of a lot of difference to me... I've already been nuked and the gland is gone... but I'm still the type that wants to understand this stuff and it will benefit those that are facing RAI as a necessary option to understand it's consequences.

For those that aren't familiar with my situation... I have a genetic defect in my TSH receptors. With no signals from my pituitary (via the TSH) my thyroid gland didn't know what it was supposed to do. As it happened mine decided to increase production from time to time.. it seems every time I had a crises in my life I went a bit more hyper. I just didn't know it at the time, you go through something that really throws you and you think your reactions after are from the shock/stress what ever..... I eventually went into thyroid storm, where the gland just pumps out hormone like crazy.. my body went into over drive... the first doc I saw ignored my symptoms and told me to go home... he so intimidated me that it was another 10 months before I went to see another doc for problems in my shoulders that were affecting my ability to do my job.... She was able to spot my symptoms, understand them and diagnosed me on site... drawing blood to verify, she packed me off to the hospital.

By that time I didn't have a choice, I guess, get nuked or die. I took my chances and got nuked. I didn't have time to talk to anyone or research, this was fifteen years ago.... but even if I had, at that point in time, I doubt I would have chosen not to do it... if I hadn't I'd have died.

That's why I'm so determined to help folks understand, so that they can make informed decisions and get things taken care of while choice are still available... not to have to be forced into deciding something on the spot with no information or even anyone there to hold your hand.

Topper ()

On Fri, 20 May 2005 12:43:46 -0700 (PDT) Sammie Baker writes:

Hey Topper,I guess we hear different things. I heard that theradioactive iodine stimulates the antibodies. Thatthe purpose of RAI is to kill the thyroid and get ridof the HyperT symptoms that many think are lifethreatening. In my opinion, going on beta blockersand ATDs can rid most of these issues within a fewhours/days. I was never HyperT, so this didn't applyto me at all.Grave's disease and TED are related but two separatediseases that run separate courses. However, the bestway to avoid worsening the eye disease is to keep thethyroid levels in normal ranges. HyperT or HypoT willmake it worse.I'm a little confused by your post though. Becausewhen someone has surgery to remove the thyroid, thisdoesn't stimulate the TED like RAI does. Being HypoT(no matter by what source - too much ATDs, RAI orsurgery can stimulate the antibodies, but nothing asbad as RAI). Grave's folks aren't supposed to beeating high sources of iodine, so using an radioactiveversion of iodine seems utterly counterproductive inthe case of Grave's.I think there is a purpose to RAI, but only in thecase of special circumstances like cancer wherein medsand surgery can't help the cancer and is a much moreserious situation. I know your situation was ususualas well. I'm just so shocked that docs push for this. And theydo it often when they overmedicated someone on ATDs. People ususally have problems because they were onATDs for too long. This happened to me. I was sickeron ATDs then before I was diagnosed. In my point ofdesperation I almost did RAI. Not that I'm educatedand looked back on my labs, I noticed that I wassuffering because I was WAY HypoT. No fricken wonder.It wasn't the Grave's disease that was the problem,it was my damn ENDO killing me. RAI would have mademe 1000% times worse by making me even more HypoT. And I think it's harder to manage a thyroid post RAI,then when one is HyperT. Most RAI folks keepincreasing their thyroid meds each year after theablation. Truthfully I dont think managing Grave's or HyperT isthat difficult with ATDs. You just have to know whatyou are doing and NOT go by TSH. Most overmedicate inan effort to raise TSH. But in the case of Grave'swith ATDs, TSH will stay suppressed for long periods. I've seen many patients with Free Ts way under range,but a low TSH and the docs keep them on super highlevels of ATDs. Total and utter barbaric torture.SAMMIE

[Guest guest]

That's Hashi's, the up and down thing, don't know whether Graves will do

that or not.

Re: thyroid storm, RAI, hypo and

fighting for normal

> I am only taking atenolol for my heart rate.... I am sure that once

> I get on thyroid replacement I will end up going off it.

> It sounds like you were undiagnosed for a long time.

> I think I had this for years if that is possible. I remember 4 years

> ago I lost lots of weight and my lots of hair fell out, I was

> trembling and very irritable. I had just gone through a break up,

> had been with the guy for 11 years, so I thought it was stress.

> Now that I think about it, I wonder if I could have been

> hyperthyroid and then gone into remission?

> Do you know if that is possible? Can you go up and down like that?

> If anyone knows, I would love to hear some feedback.

> Thanks,

> Karyn

[Guest guest]

Please give the explanation for how a Grave's patient can be hypo first,

being as the antibodies specific for that form of thyroid disease work

specifically at increasing the thyroid hormones. Unless that person also

has the Hashi's antibodies working in another area at the same time. I

frankly think that it's more common than the statistics say it is to have

both disorders. I've often wondered if I have also had Grave's along with

my Hashi's, but I've never had the TSI ones tested. In my case, around this

area, if you want something done, you have to do it yourself.

Re: Re: thyroid storm, RAI, hypo and

fighting for normal

> The ups and downs are possible with Grave's,

> especially if you are eating a lot of goitrenic (sp?)

> foods, which lowers the thyroid.

>

> My Free T4 was normal when I was diagnosed with

> Grave's. Most Grave's are HypoT before going HyperT,

> if they even go HyperT before catching it. It's

> possible that I was just on my way to going HyperT.

> But the levels drop and then elevate and usually stay

> there depending on other factors. People who eat a

> lot of goitrenic foods and adopt a low stress

> lifestyle including meditation/yoga etc., may not

> notice they have this disease for a long time.

>

>

> SAMMIE

[Guest guest]

Most people with Grave's do have some Hashi's

antibodies. I do, but they were fairly low and

nothing compared to how high my Grave's antibodies

are/were.

The fact that many people who develop Grave's have a

period of HypoT, doesn't necessarily relate to

Hashi's. I was HypoT (undiagnosed) for probably 20

years before something (ongoing stress probably)

triggered Grave's. I was never tested for my thyroid

levels or antibodies, despite my repeated trips to the

doctor's office requesting them. But I had all the

symptoms.

But when I was diagnosed with Grave's, my thyroid

hormones were not high, despite my antibodies being

really high. I also had an extreme case of thyroid

eye disease. So I never had the benefit of having an

overactive thyroid before being treated with ATDs to

suppress my thyroid. Imagine being HypoT for most

your life, then being treated with anti-thyroid meds.

There is a member in my Grave's group who had Grave's,

who was heavily overmedicated and then switched to

Hashi's. Within a few years she went from high

Grave's antibodies, to high Hashi's antibodies. I'm

not sure if this is unusual or it was as a result of

her inept Endo overmedicating her on ATDs for years.

But it is possible.

Hopefully if you are getting the right tests and

closely monitoring your levels, this won't happen.

And look into methods to reduce antibodies. The

association with Vitamin D and reducing antibodies is

a recent and interesting topic, expecially if you have

both the Hashi's and Grave's antibodies and easily

fluctuate from HypoT and HyperT easily.

SAMMIE

--- wrote:

> Please give the explanation for how a Grave's

> patient can be hypo first,

> being as the antibodies specific for that form of

> thyroid disease work

> specifically at increasing the thyroid hormones.

> Unless that person also

> has the Hashi's antibodies working in another area

> at the same time. I

> frankly think that it's more common than the

> statistics say it is to have

> both disorders. I've often wondered if I have also

> had Grave's along with

> my Hashi's, but I've never had the TSI ones tested.

> In my case, around this

> area, if you want something done, you have to do it

> yourself.

>

>

>

> Re: Re: thyroid

> storm, RAI, hypo and

> fighting for normal

>

>

> > The ups and downs are possible with Grave's,

> > especially if you are eating a lot of goitrenic

> (sp?)

> > foods, which lowers the thyroid.

> >

> > My Free T4 was normal when I was diagnosed with

> > Grave's. Most Grave's are HypoT before going

> HyperT,

> > if they even go HyperT before catching it. It's

> > possible that I was just on my way to going

> HyperT.

> > But the levels drop and then elevate and usually

> stay

> > there depending on other factors. People who eat

> a

> > lot of goitrenic foods and adopt a low stress

> > lifestyle including meditation/yoga etc., may not

> > notice they have this disease for a long time.

> >

> >

> > SAMMIE

>

>

>

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