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

[Guest guest]

Karyn.... I know.

I went into thyroid storm... after years of increasing hyper... but didnt' know what it was.... resting heart rate was 160... when I stood up it shot over 200 so they didn't test me after that..just told me to sit down...

Constant hunger, eating non-stop... had a lot of trouble maintaining weight... lost of lot of muscle (I was a weight lifter when the storm hit) to cannibalization of my body. It's not fun.. and the jerks that don't understand are soooo cruel.

They gave me RAI to stop the storm, it was a genetic flaw for me... not autoimmune.

I think the thing that irks me so much about how I'm treated over this is that I kept hearing 'all you did was take a pill, it's not like you had surgery or something'.. they don't get it.... and you talk about the gland being gone an all the symptoms of hypo from no gland.. and they give the 'it's not like you had surgery or something'.. I think you know what I mean.

I want to sit down and write it out sometime.. what it's like to lay in bed at night and hear the pounding of your heart.. wondering if it will bust out of your chest.... or stop. What it's like to be so hungry that you just keep shoveling it in... and even after three pizzas you look around for something to eat cause you're just so hungry that you can't think.

What it's like for your brain to never shut down. It races a million miles a minute and just won't slow down. I was lucky... I invented things... I made just the most elaborate things in my head, complete diagrams in my brain that I could transfer to paper when I had time (I was a truck driver so all this brain power was during windshield time, then, when I was off work, it went to paper).. then it came to the time when I had no free time... I ate... all the time... then I stopped sleeping.. to stay up to eat...

There is no way to describe to someone what it's like to be afraid of starving to death, not because you have no food, or you're out of money, or you car is stalled on a deserted country road and you're gonna miss supper.... You have a terrified, and very REAL feeling of imminent starvation even while in the third hour of non stop eating.

No matter how fast you shovel it in.... you can't get enough in to take away the terror of starving to death....

Okay... taking my brain to other places.....

Now I'm on the other side.. hypo, no gland function, and working on getting hormone levels up.... It sucks.....

I lost all the friends that I had when hyper when I went hypo. Now, moving more toward normal I've lost all the friends that I made while hypo, more hypo than now.... It's like people can't handle how much you change through the phases.

How long ago was your RAI and how much function, if any, do you still have?

What meds are you on now? For how long? What dose?

Topper () *15 years post RAI*

On Thu, 19 May 2005 23:12:02 -0000 "karynhelen" writes:

thanks for the kind replys,I had radioactive iodine because I was diagnosed with Grave's disease, and as a result was (I am just starting to feel better) hyperthyroid.My symtoms of hyperthroid were and sometimes still are.... nervousness, many many trips to the bathroom every day, inability to concentrate, anxiousness, mood swings, VERY VERY IRRITABLE...very high heart rate sometimes up to 150+beats per minute, uncontrollable hunger, hyper activity, buzzing head, depression, I maintained my weight but have been eating a million calories per day (lucky me)....But I am feeling now that I am tired, my heart rate is down to about 60-70,,,So I am so happy that I am on my way to having my Thyroid levels controlled.... I know it will be a long road but I am looking forward to feeling better. I can see the light at the end of the tunnel...I tried Methimozole before the RAI but had an alergic reaction so I opted for the drastic treatment....I am taking Atenolol (beta blocker) for my heart rate and anxiety...I am sporadically taking a multi-vitamin, can't remember to take it...don't know my temp. haven't been told it was important...Mostly what I am feeling emotionally is that no one really understands that I am not feeling well. People insinuate that I should 'get over it' 'turn the corner and see the bright side...'"Every one knows someone with Grave's and it is no big deal..."People simply think I am exaggerating...I am strong enough to know how I feel and that I am not inventing these symptoms.I only ask that those who say they love me, and consider themselves my friends, step up to the plate and try to understand. But until now, that has not happened. I have done lots of reading on the physiological aspect of Grave's and hyperthyroidism, but there is not much written about the the psychological side, at least I have not come across much.I would love to find something that I could let my friends and family read. Although I am almost done with this roller coaster... I would like for people to know that I was not making this up.Thank you for your help. I am glad I found this site.I am sure I will have more questions in the future...It feels good to know that there are people who understand!!!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]

Hi there Topper 2,

I am not on any thyroid replacement yet. I had blood test done 5

weeks after the RAI and I was higher than when I started... But as I

said before, I know that my levels have dropped and I am starting

get better.Thanks for sharing your story, I TOTALLY UNDERSTAND!!!!!

I have decided to only share how I am feeling with my boyfriend. He

tries so hard to understand. I am so lucky. As for my friends, I

will always say from now on that " I am fine, dealing day by day with

my stuff, but it looks good... " I figure that if I keep it simple I

won't have to feel disappointed.

Thanks for your kind words....

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,

I'm a Grave's survivor too. And you are right, the

only people that really understand this disease are

the people dealing with it.

I was undiagnosed with HypoT for at least 20 years -

constantly going to the docs with obvious symptoms and

they never tested my thyroid despite my protests.

Then about 1 1/2 ago something triggered Grave's.

However, I wasn't HyperT at diagnosis. Imagine going

on ATDs when you aren't HyperT. Then imagine that

your doc gives you 50 times the medicaiton you should

be on.

Ugh.

Thank god I found these groups and put a stop to my

doc literally killing me. Or else I wouldn't be here.

The psychological aspects of this disease are insane.

The ups and downs....My holistic doc is pretty

convinced that once my thyroid is stabilized, much of

the depression will go away. However, I'm in an

environment of people who don't care or understand how

sick I get and not having that support is torture.

I've gladly cut many selfish people out of my life

because of it.

The grave's yahoo group is good too, but for some

reason, few of the folks that had RAI ever post. From

what I know, many are on really high doses of Armour

to deal with the severe HypoT post RAI. This seems to

be the best treatment meds after ablating the thyroid

in my opinion.

Are you on any other meds other than Atenol?

SAMMIE

>

> On Thu, 19 May 2005 23:12:02 -0000 " karynhelen "

>

> writes:

> thanks for the kind replys,

>

> I had radioactive iodine because I was diagnosed

> with Grave's

> disease, and as a result was (I am just starting to

> feel better)

> hyperthyroid.

> My symtoms of hyperthroid were and sometimes still

> are....

> nervousness, many many trips to the bathroom every

> day, inability to

> concentrate, anxiousness, mood swings, VERY VERY

> IRRITABLE...very

> high heart rate sometimes up to 150+beats per

> minute, uncontrollable

> hunger, hyper activity, buzzing head, depression, I

> maintained my

> weight but have been eating a million calories per

> day (lucky me)....

>

> But I am feeling now that I am tired, my heart rate

> is down to about

> 60-70,,,So I am so happy that I am on my way to

> having my Thyroid

> levels controlled.... I know it will be a long road

> but I am looking

> forward to feeling better. I can see the light at

> the end of the

> tunnel...

>

> I tried Methimozole before the RAI but had an

> alergic reaction so I

> opted for the drastic treatment....

>

> I am taking Atenolol (beta blocker) for my heart

> rate and anxiety...

>

> I am sporadically taking a multi-vitamin, can't

> remember to take

> it...

>

> don't know my temp. haven't been told it was

> important...

>

> Mostly what I am feeling emotionally is that no one

> really

> understands that I am not feeling well. People

> insinuate that I

> should

> 'get over it'

> 'turn the corner and see the bright side...'

>

> " Every one knows someone with Grave's and it is no

> big deal... "

> People simply think I am exaggerating...

>

> I am strong enough to know how I feel and that I am

> not inventing

> these symptoms.

> I only ask that those who say they love me, and

> consider themselves

> my friends, step up to the plate and try to

> understand. But until

> now, that has not happened.

>

> I have done lots of reading on the physiological

> aspect of Grave's

> and hyperthyroidism, but there is not much written

> about the the

> psychological side, at least I have not come across

> much.

> I would love to find something that I could let my

> friends and

> family read. Although I am almost done with this

> roller coaster... I

> would like for people to know that I was not making

> this up.

>

>

> Thank you for your help. I am glad I found this

> site.

> I am sure I will have more questions in the

> future...

> It feels good to know that there are people who

> understand!!!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]

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]

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

> 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

<jigscam@y...>

> 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

[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]

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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