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What is the cortisone injection for??

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Hi all,

First time posting.

I am hypo and have been on synthroid for many years. I found out 2

years ago that my body was destroying my thyroid gland (autoimmune).

I have felt like hell for a few years now and have finally decided

to go to Endo. He laughed that I had hoped my autoimmune problem

would get better. He said it doesn't.

My TSH levels go from 2 - 210. It runs the gambit. It is like a joke

trying to figure out how much synthroid I am suppose to take.

I have questions if someone will help me??

The Endo asked me if I had ever had cortisone. I said no but asked

nothing more. I am reading here about cortisone....what does it do

for you??

Also, what is the thyroid storm I read about.

Every few days I get this sick feeling and it seems to radiate

around my neck. Feels like someone has their hands around my throat.

I can barely walk from the bedroom to the kitchen. I notice that

certain things trigger it but can't actually control it.

Is this the storm you guys talk about.

I can not explain this terrible sick feeling to my kids or husband.

It is totally impossible to describe but feels like I will fall over

and die. Usually by that time it seems like an option.

I have discovered that if I take pain pills it lessens this terrible

feeling but I'm not getting any better just taking pain pills. Is

there a medication that helps??

I have not told the Doctor I take pain pills to calm this terrible

feeling. But it gets so bad I can't function. This hands around the

neck sensation with a terrible weak feeling is really getting to me.

(My first thyroid peroxidase test number was 148 and then I ask to

be tested again a year later and it was 185.)

Do people live normal lives once the autoimmune thing happens.

Is the life span shorter??

Thanks,

sheila

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Posted

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

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Posted

Hey Sheila! I am ! I also am hypo and have hashimoto's thyroiditis. I

just had half of my thyroid removed due to a very large nodule. I am at a

down stage because I have to be off my meds for 4 weeks to see what function

my remaining lobe will have then I get put back on meds. But this time I

want to be on armour thyroid and not synthroid.

I have a cortisone shot in my foot for a totally separate problems years

ago. But never anything that is associated with my thyroid.

Yes, people can function with this disease. But first you need to find

yourself a good doctor that will listen to you. For many years I went

untreated and that caused my goiter and my nodules. Good luck to you!

" Dreams are the touchstones of our character. " Henry Thoreau

What is the cortisone injection for??

> Hi all,

>

> First time posting.

>

> I am hypo and have been on synthroid for many years. I found out 2

> years ago that my body was destroying my thyroid gland (autoimmune).

>

> I have felt like hell for a few years now and have finally decided

> to go to Endo. He laughed that I had hoped my autoimmune problem

> would get better. He said it doesn't.

>

> My TSH levels go from 2 - 210. It runs the gambit. It is like a joke

> trying to figure out how much synthroid I am suppose to take.

>

> I have questions if someone will help me??

> The Endo asked me if I had ever had cortisone. I said no but asked

> nothing more. I am reading here about cortisone....what does it do

> for you??

>

> Also, what is the thyroid storm I read about.

>

> Every few days I get this sick feeling and it seems to radiate

> around my neck. Feels like someone has their hands around my throat.

> I can barely walk from the bedroom to the kitchen. I notice that

> certain things trigger it but can't actually control it.

> Is this the storm you guys talk about.

>

> I can not explain this terrible sick feeling to my kids or husband.

> It is totally impossible to describe but feels like I will fall over

> and die. Usually by that time it seems like an option.

>

> I have discovered that if I take pain pills it lessens this terrible

> feeling but I'm not getting any better just taking pain pills. Is

> there a medication that helps??

> I have not told the Doctor I take pain pills to calm this terrible

> feeling. But it gets so bad I can't function. This hands around the

> neck sensation with a terrible weak feeling is really getting to me.

>

> (My first thyroid peroxidase test number was 148 and then I ask to

> be tested again a year later and it was 185.)

>

> Do people live normal lives once the autoimmune thing happens.

> Is the life span shorter??

>

> Thanks,

> sheila

>

>

>

>

>

>

>

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Posted
Posted

Hey Sheila! I am ! I also am hypo and have hashimoto's thyroiditis. I

just had half of my thyroid removed due to a very large nodule. I am at a

down stage because I have to be off my meds for 4 weeks to see what function

my remaining lobe will have then I get put back on meds. But this time I

want to be on armour thyroid and not synthroid.

I have a cortisone shot in my foot for a totally separate problems years

ago. But never anything that is associated with my thyroid.

Yes, people can function with this disease. But first you need to find

yourself a good doctor that will listen to you. For many years I went

untreated and that caused my goiter and my nodules. Good luck to you!

" Dreams are the touchstones of our character. " Henry Thoreau

What is the cortisone injection for??

> Hi all,

>

> First time posting.

>

> I am hypo and have been on synthroid for many years. I found out 2

> years ago that my body was destroying my thyroid gland (autoimmune).

>

> I have felt like hell for a few years now and have finally decided

> to go to Endo. He laughed that I had hoped my autoimmune problem

> would get better. He said it doesn't.

>

> My TSH levels go from 2 - 210. It runs the gambit. It is like a joke

> trying to figure out how much synthroid I am suppose to take.

>

> I have questions if someone will help me??

> The Endo asked me if I had ever had cortisone. I said no but asked

> nothing more. I am reading here about cortisone....what does it do

> for you??

>

> Also, what is the thyroid storm I read about.

>

> Every few days I get this sick feeling and it seems to radiate

> around my neck. Feels like someone has their hands around my throat.

> I can barely walk from the bedroom to the kitchen. I notice that

> certain things trigger it but can't actually control it.

> Is this the storm you guys talk about.

>

> I can not explain this terrible sick feeling to my kids or husband.

> It is totally impossible to describe but feels like I will fall over

> and die. Usually by that time it seems like an option.

>

> I have discovered that if I take pain pills it lessens this terrible

> feeling but I'm not getting any better just taking pain pills. Is

> there a medication that helps??

> I have not told the Doctor I take pain pills to calm this terrible

> feeling. But it gets so bad I can't function. This hands around the

> neck sensation with a terrible weak feeling is really getting to me.

>

> (My first thyroid peroxidase test number was 148 and then I ask to

> be tested again a year later and it was 185.)

>

> Do people live normal lives once the autoimmune thing happens.

> Is the life span shorter??

>

> Thanks,

> sheila

>

>

>

>

>

>

>

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Posted

Hi Topper !

I am taking 0.075 mg synthroid. I brake it in half and take half in morning and half in afternoon. Actually, I have been up to 1.25 and she tried to get me down to 0.05 (yo-yo effect) but I put my foot down with the Doctor and said something else is going on in my body. Ridiculous that after taking Synthroid for over 20 years I should have to come in every 3 months, give the blood then (every time) they change your Rx. It was not like that for all the 20 years before, why now was this yo-yo thing going on.

I was not getting better and I pushed to see if something else was going on and that is when they found the antibodies.

I am hoping that when the results of this last lab work comes in I can be put on something else other than Synthroid.

I have not been given a diagnosis by the endo yet. I went last week and he took blood and told me that it doesn't "go away". He said once you get the antibodies, its there to stay... but never gave me a name of the condition.

Is Hashimoto's Thyroiditis something that would qualify for disability??

I worked as a Realtor but when I started getting these strange symptoms and extreme fatigue, I thought maybe it was stress damaging my body. I stopped selling Real Estate but never got better. I can't imagine how people can work living with this type of brain fog. Heck, Home Depot just called to collect on an account I thought I had paid off. I don't seem to remember much of anything and thinking is so difficult. I can't even remember to pay the bills or which one I paid.

I have this Money 2004 Microsoft software CD that came with my computer. I guess I should install it and see if it will help me remember what and when to pay. Gee, it is that bad.... I've paid bills all my life but with this "brain fog" it is difficult to do simple task.

Thanks for the feedback Topper, I really appreciate it.

sheila

Re: What is the cortisone injection for??

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

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Posted
Posted

Hi Topper !

I am taking 0.075 mg synthroid. I brake it in half and take half in morning and half in afternoon. Actually, I have been up to 1.25 and she tried to get me down to 0.05 (yo-yo effect) but I put my foot down with the Doctor and said something else is going on in my body. Ridiculous that after taking Synthroid for over 20 years I should have to come in every 3 months, give the blood then (every time) they change your Rx. It was not like that for all the 20 years before, why now was this yo-yo thing going on.

I was not getting better and I pushed to see if something else was going on and that is when they found the antibodies.

I am hoping that when the results of this last lab work comes in I can be put on something else other than Synthroid.

I have not been given a diagnosis by the endo yet. I went last week and he took blood and told me that it doesn't "go away". He said once you get the antibodies, its there to stay... but never gave me a name of the condition.

Is Hashimoto's Thyroiditis something that would qualify for disability??

I worked as a Realtor but when I started getting these strange symptoms and extreme fatigue, I thought maybe it was stress damaging my body. I stopped selling Real Estate but never got better. I can't imagine how people can work living with this type of brain fog. Heck, Home Depot just called to collect on an account I thought I had paid off. I don't seem to remember much of anything and thinking is so difficult. I can't even remember to pay the bills or which one I paid.

I have this Money 2004 Microsoft software CD that came with my computer. I guess I should install it and see if it will help me remember what and when to pay. Gee, it is that bad.... I've paid bills all my life but with this "brain fog" it is difficult to do simple task.

Thanks for the feedback Topper, I really appreciate it.

sheila

Re: What is the cortisone injection for??

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

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Posted
Posted

Hi Topper !

I am taking 0.075 mg synthroid. I brake it in half and take half in morning and half in afternoon. Actually, I have been up to 1.25 and she tried to get me down to 0.05 (yo-yo effect) but I put my foot down with the Doctor and said something else is going on in my body. Ridiculous that after taking Synthroid for over 20 years I should have to come in every 3 months, give the blood then (every time) they change your Rx. It was not like that for all the 20 years before, why now was this yo-yo thing going on.

I was not getting better and I pushed to see if something else was going on and that is when they found the antibodies.

I am hoping that when the results of this last lab work comes in I can be put on something else other than Synthroid.

I have not been given a diagnosis by the endo yet. I went last week and he took blood and told me that it doesn't "go away". He said once you get the antibodies, its there to stay... but never gave me a name of the condition.

Is Hashimoto's Thyroiditis something that would qualify for disability??

I worked as a Realtor but when I started getting these strange symptoms and extreme fatigue, I thought maybe it was stress damaging my body. I stopped selling Real Estate but never got better. I can't imagine how people can work living with this type of brain fog. Heck, Home Depot just called to collect on an account I thought I had paid off. I don't seem to remember much of anything and thinking is so difficult. I can't even remember to pay the bills or which one I paid.

I have this Money 2004 Microsoft software CD that came with my computer. I guess I should install it and see if it will help me remember what and when to pay. Gee, it is that bad.... I've paid bills all my life but with this "brain fog" it is difficult to do simple task.

Thanks for the feedback Topper, I really appreciate it.

sheila

Re: What is the cortisone injection for??

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

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Start stomping your feet some more.. you'd, in my opinion, feel better on Natural thyroid, rather than the synthetics. It's better utilized by your body and is easier to adjust dosage on.... that has to do with the natural having T3 in it and the synthetics having only T4.

With Hashi's your needs for hormone do fluctuate.. but adjusting the synthetics is such a time delayed thing since it's only T4 which has to build up in the tissues before you body gets to use it fully.

Thyroid conditions, by themselves, don't qualify for disability... you have to have something else. Others know more about that then I do. I did apply, but got the usual run around and was turned down. I was also turned down for both county and state medical assistance because I'm white with no kids and not addicted to booze or drugs and don't have any STDs... Long, bitter, story there. That's why I ended up without meds for so long, no way to get them until I found I could get them online two years ago without a prescription.

Cortisone injections are often used for pain control. I'm not sure if they are used for adrenal support. Often, folks that are hypo end up with varying degrees of adrenal fatigue. I'm one of them, I've been treating myself for that for about a year and a half now, have had a LOT of improvement there.

Has your doc checked your adrenal glands? Some do, most won't... but it's good to find out how you are doing in that department, especially having been dealing with this as long as you have.

Tell us a bit about your sleep patterns.... Do you go to sleep right away? Sleep through the night? Wake feeling rested? or ??????

Are you taking your Synthroid on an empty stomach? It's VERY important that you do....

Topper ()

On Wed, 18 Aug 2004 09:54:07 -0500 "Sheila McLaughlin" writes:

Hi Topper !

I am taking 0.075 mg synthroid. I brake it in half and take half in morning and half in afternoon. Actually, I have been up to 1.25 and she tried to get me down to 0.05 (yo-yo effect) but I put my foot down with the Doctor and said something else is going on in my body. Ridiculous that after taking Synthroid for over 20 years I should have to come in every 3 months, give the blood then (every time) they change your Rx. It was not like that for all the 20 years before, why now was this yo-yo thing going on.

I was not getting better and I pushed to see if something else was going on and that is when they found the antibodies.

I am hoping that when the results of this last lab work comes in I can be put on something else other than Synthroid.

I have not been given a diagnosis by the endo yet. I went last week and he took blood and told me that it doesn't "go away". He said once you get the antibodies, its there to stay... but never gave me a name of the condition.

Is Hashimoto's Thyroiditis something that would qualify for disability??

I worked as a Realtor but when I started getting these strange symptoms and extreme fatigue, I thought maybe it was stress damaging my body. I stopped selling Real Estate but never got better. I can't imagine how people can work living with this type of brain fog. Heck, Home Depot just called to collect on an account I thought I had paid off. I don't seem to remember much of anything and thinking is so difficult. I can't even remember to pay the bills or which one I paid.

I have this Money 2004 Microsoft software CD that came with my computer. I guess I should install it and see if it will help me remember what and when to pay. Gee, it is that bad.... I've paid bills all my life but with this "brain fog" it is difficult to do simple task.

Thanks for the feedback Topper, I really appreciate it.

sheila

Re: What is the cortisone injection for??

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

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Start stomping your feet some more.. you'd, in my opinion, feel better on Natural thyroid, rather than the synthetics. It's better utilized by your body and is easier to adjust dosage on.... that has to do with the natural having T3 in it and the synthetics having only T4.

With Hashi's your needs for hormone do fluctuate.. but adjusting the synthetics is such a time delayed thing since it's only T4 which has to build up in the tissues before you body gets to use it fully.

Thyroid conditions, by themselves, don't qualify for disability... you have to have something else. Others know more about that then I do. I did apply, but got the usual run around and was turned down. I was also turned down for both county and state medical assistance because I'm white with no kids and not addicted to booze or drugs and don't have any STDs... Long, bitter, story there. That's why I ended up without meds for so long, no way to get them until I found I could get them online two years ago without a prescription.

Cortisone injections are often used for pain control. I'm not sure if they are used for adrenal support. Often, folks that are hypo end up with varying degrees of adrenal fatigue. I'm one of them, I've been treating myself for that for about a year and a half now, have had a LOT of improvement there.

Has your doc checked your adrenal glands? Some do, most won't... but it's good to find out how you are doing in that department, especially having been dealing with this as long as you have.

Tell us a bit about your sleep patterns.... Do you go to sleep right away? Sleep through the night? Wake feeling rested? or ??????

Are you taking your Synthroid on an empty stomach? It's VERY important that you do....

Topper ()

On Wed, 18 Aug 2004 09:54:07 -0500 "Sheila McLaughlin" writes:

Hi Topper !

I am taking 0.075 mg synthroid. I brake it in half and take half in morning and half in afternoon. Actually, I have been up to 1.25 and she tried to get me down to 0.05 (yo-yo effect) but I put my foot down with the Doctor and said something else is going on in my body. Ridiculous that after taking Synthroid for over 20 years I should have to come in every 3 months, give the blood then (every time) they change your Rx. It was not like that for all the 20 years before, why now was this yo-yo thing going on.

I was not getting better and I pushed to see if something else was going on and that is when they found the antibodies.

I am hoping that when the results of this last lab work comes in I can be put on something else other than Synthroid.

I have not been given a diagnosis by the endo yet. I went last week and he took blood and told me that it doesn't "go away". He said once you get the antibodies, its there to stay... but never gave me a name of the condition.

Is Hashimoto's Thyroiditis something that would qualify for disability??

I worked as a Realtor but when I started getting these strange symptoms and extreme fatigue, I thought maybe it was stress damaging my body. I stopped selling Real Estate but never got better. I can't imagine how people can work living with this type of brain fog. Heck, Home Depot just called to collect on an account I thought I had paid off. I don't seem to remember much of anything and thinking is so difficult. I can't even remember to pay the bills or which one I paid.

I have this Money 2004 Microsoft software CD that came with my computer. I guess I should install it and see if it will help me remember what and when to pay. Gee, it is that bad.... I've paid bills all my life but with this "brain fog" it is difficult to do simple task.

Thanks for the feedback Topper, I really appreciate it.

sheila

Re: What is the cortisone injection for??

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

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Guest guest

Posted
Posted

Start stomping your feet some more.. you'd, in my opinion, feel better on Natural thyroid, rather than the synthetics. It's better utilized by your body and is easier to adjust dosage on.... that has to do with the natural having T3 in it and the synthetics having only T4.

With Hashi's your needs for hormone do fluctuate.. but adjusting the synthetics is such a time delayed thing since it's only T4 which has to build up in the tissues before you body gets to use it fully.

Thyroid conditions, by themselves, don't qualify for disability... you have to have something else. Others know more about that then I do. I did apply, but got the usual run around and was turned down. I was also turned down for both county and state medical assistance because I'm white with no kids and not addicted to booze or drugs and don't have any STDs... Long, bitter, story there. That's why I ended up without meds for so long, no way to get them until I found I could get them online two years ago without a prescription.

Cortisone injections are often used for pain control. I'm not sure if they are used for adrenal support. Often, folks that are hypo end up with varying degrees of adrenal fatigue. I'm one of them, I've been treating myself for that for about a year and a half now, have had a LOT of improvement there.

Has your doc checked your adrenal glands? Some do, most won't... but it's good to find out how you are doing in that department, especially having been dealing with this as long as you have.

Tell us a bit about your sleep patterns.... Do you go to sleep right away? Sleep through the night? Wake feeling rested? or ??????

Are you taking your Synthroid on an empty stomach? It's VERY important that you do....

Topper ()

On Wed, 18 Aug 2004 09:54:07 -0500 "Sheila McLaughlin" writes:

Hi Topper !

I am taking 0.075 mg synthroid. I brake it in half and take half in morning and half in afternoon. Actually, I have been up to 1.25 and she tried to get me down to 0.05 (yo-yo effect) but I put my foot down with the Doctor and said something else is going on in my body. Ridiculous that after taking Synthroid for over 20 years I should have to come in every 3 months, give the blood then (every time) they change your Rx. It was not like that for all the 20 years before, why now was this yo-yo thing going on.

I was not getting better and I pushed to see if something else was going on and that is when they found the antibodies.

I am hoping that when the results of this last lab work comes in I can be put on something else other than Synthroid.

I have not been given a diagnosis by the endo yet. I went last week and he took blood and told me that it doesn't "go away". He said once you get the antibodies, its there to stay... but never gave me a name of the condition.

Is Hashimoto's Thyroiditis something that would qualify for disability??

I worked as a Realtor but when I started getting these strange symptoms and extreme fatigue, I thought maybe it was stress damaging my body. I stopped selling Real Estate but never got better. I can't imagine how people can work living with this type of brain fog. Heck, Home Depot just called to collect on an account I thought I had paid off. I don't seem to remember much of anything and thinking is so difficult. I can't even remember to pay the bills or which one I paid.

I have this Money 2004 Microsoft software CD that came with my computer. I guess I should install it and see if it will help me remember what and when to pay. Gee, it is that bad.... I've paid bills all my life but with this "brain fog" it is difficult to do simple task.

Thanks for the feedback Topper, I really appreciate it.

sheila

Re: What is the cortisone injection for??

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

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Posted
Posted

You ask....Tell us a bit about your sleep patterns.... Do you go to sleep right away? Sleep through the night? Wake feeling rested? or ??????

I have to take Ambien to force myself to sleep. I am so tired of laying in bed and hoping to fall asleep. I wake up feeling terrible. So I hate the bedroom....

Sleeping is important for me because lack of sleep is one of my triggers for a seizure. I have Epilepsy.

I have almost 100% seizure control with my Epilepsy medication. Of course, I have to avoid the things that trigger a seizure.

I suspect that the Lamictal I was on started the immune problem.

My first symptoms were so server I could care less if I dropped dead.

I decided to go back and check the warning on my Lamictal pharmacy brochure over the internet. Sure enough they had an update... "Lupus like symptoms" warning which said if you experience these symptoms stop taking and see Doctor right away.

They were the same symptoms I was complaining about to any doctor that would listen. Not a one checked the latest news on any of my medications.

I had been taking the Lamictal for over 4 years when I read my symptoms on the brochure. Blew my mind !! Once I told the Doctor I suspected the Lamictal is affecting my joints and pointed out to the doctor what the drug company said, he tested for Lupus. I don't have Lupus but the test showed Thyroid Peroxidase antibodies in my blood.

After I got off the Lamictal my joint swelling went down within 3 weeks. I could actually walk from the front of the house to the back without stopping on the sofa for a rest.

I am now taking Neurontin for seizure control, it does a good job, and so far, no side effects.

I always read the pharmacy brochure when I get put on a new Rx and that warning was not there when I started taking it. While I was in pain and looking for answers, I checked to see when they updated that info. In the year 2000 they updated the warning on the Rx, but I was never told by Eckerds (my pharmacy). If I had been informed, I would have saved myself 2 more years of hell and damage from Lamictal.

The doctors had no clue what was going wrong, they blew me off. Even though I was limping, could barely think and looked like I died and forgot to fall.

When I get more of my "brain power" back, I am going to do something about that.

Most people don't read the pharmacy drug brochure, but I do. I love Chemistry and realize I am not your average person... do they figure people don't read it so why inform people??

There is a part of me that knows the damage Lamictal did created the problem, but I am more upset that I was never told that the brochure was amended with a new symptom warning.

Sorry to have gone on about this but I have been curious if there are any others out there that has suffered autoimmune problems due to Lamictal.

I am also left with a Geographic tongue. Anyone else have that problem??

You guys deserve an award for waking up every day and wanting to help others.

The only time I felt this bad was right after a seizure and only if I hit my head so hard that I had a concussion. I knew it would pass so I never had pity parties.

This does not pass -- I am ssooo impressed with you guys.

sheila

Re: What is the cortisone injection for??

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

You ask....Tell us a bit about your sleep patterns.... Do you go to sleep right away? Sleep through the night? Wake feeling rested? or ??????

I have to take Ambien to force myself to sleep. I am so tired of laying in bed and hoping to fall asleep. I wake up feeling terrible. So I hate the bedroom....

Sleeping is important for me because lack of sleep is one of my triggers for a seizure. I have Epilepsy.

I have almost 100% seizure control with my Epilepsy medication. Of course, I have to avoid the things that trigger a seizure.

I suspect that the Lamictal I was on started the immune problem.

My first symptoms were so server I could care less if I dropped dead.

I decided to go back and check the warning on my Lamictal pharmacy brochure over the internet. Sure enough they had an update... "Lupus like symptoms" warning which said if you experience these symptoms stop taking and see Doctor right away.

They were the same symptoms I was complaining about to any doctor that would listen. Not a one checked the latest news on any of my medications.

I had been taking the Lamictal for over 4 years when I read my symptoms on the brochure. Blew my mind !! Once I told the Doctor I suspected the Lamictal is affecting my joints and pointed out to the doctor what the drug company said, he tested for Lupus. I don't have Lupus but the test showed Thyroid Peroxidase antibodies in my blood.

After I got off the Lamictal my joint swelling went down within 3 weeks. I could actually walk from the front of the house to the back without stopping on the sofa for a rest.

I am now taking Neurontin for seizure control, it does a good job, and so far, no side effects.

I always read the pharmacy brochure when I get put on a new Rx and that warning was not there when I started taking it. While I was in pain and looking for answers, I checked to see when they updated that info. In the year 2000 they updated the warning on the Rx, but I was never told by Eckerds (my pharmacy). If I had been informed, I would have saved myself 2 more years of hell and damage from Lamictal.

The doctors had no clue what was going wrong, they blew me off. Even though I was limping, could barely think and looked like I died and forgot to fall.

When I get more of my "brain power" back, I am going to do something about that.

Most people don't read the pharmacy drug brochure, but I do. I love Chemistry and realize I am not your average person... do they figure people don't read it so why inform people??

There is a part of me that knows the damage Lamictal did created the problem, but I am more upset that I was never told that the brochure was amended with a new symptom warning.

Sorry to have gone on about this but I have been curious if there are any others out there that has suffered autoimmune problems due to Lamictal.

I am also left with a Geographic tongue. Anyone else have that problem??

You guys deserve an award for waking up every day and wanting to help others.

The only time I felt this bad was right after a seizure and only if I hit my head so hard that I had a concussion. I knew it would pass so I never had pity parties.

This does not pass -- I am ssooo impressed with you guys.

sheila

Re: What is the cortisone injection for??

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

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You ask....Tell us a bit about your sleep patterns.... Do you go to sleep right away? Sleep through the night? Wake feeling rested? or ??????

I have to take Ambien to force myself to sleep. I am so tired of laying in bed and hoping to fall asleep. I wake up feeling terrible. So I hate the bedroom....

Sleeping is important for me because lack of sleep is one of my triggers for a seizure. I have Epilepsy.

I have almost 100% seizure control with my Epilepsy medication. Of course, I have to avoid the things that trigger a seizure.

I suspect that the Lamictal I was on started the immune problem.

My first symptoms were so server I could care less if I dropped dead.

I decided to go back and check the warning on my Lamictal pharmacy brochure over the internet. Sure enough they had an update... "Lupus like symptoms" warning which said if you experience these symptoms stop taking and see Doctor right away.

They were the same symptoms I was complaining about to any doctor that would listen. Not a one checked the latest news on any of my medications.

I had been taking the Lamictal for over 4 years when I read my symptoms on the brochure. Blew my mind !! Once I told the Doctor I suspected the Lamictal is affecting my joints and pointed out to the doctor what the drug company said, he tested for Lupus. I don't have Lupus but the test showed Thyroid Peroxidase antibodies in my blood.

After I got off the Lamictal my joint swelling went down within 3 weeks. I could actually walk from the front of the house to the back without stopping on the sofa for a rest.

I am now taking Neurontin for seizure control, it does a good job, and so far, no side effects.

I always read the pharmacy brochure when I get put on a new Rx and that warning was not there when I started taking it. While I was in pain and looking for answers, I checked to see when they updated that info. In the year 2000 they updated the warning on the Rx, but I was never told by Eckerds (my pharmacy). If I had been informed, I would have saved myself 2 more years of hell and damage from Lamictal.

The doctors had no clue what was going wrong, they blew me off. Even though I was limping, could barely think and looked like I died and forgot to fall.

When I get more of my "brain power" back, I am going to do something about that.

Most people don't read the pharmacy drug brochure, but I do. I love Chemistry and realize I am not your average person... do they figure people don't read it so why inform people??

There is a part of me that knows the damage Lamictal did created the problem, but I am more upset that I was never told that the brochure was amended with a new symptom warning.

Sorry to have gone on about this but I have been curious if there are any others out there that has suffered autoimmune problems due to Lamictal.

I am also left with a Geographic tongue. Anyone else have that problem??

You guys deserve an award for waking up every day and wanting to help others.

The only time I felt this bad was right after a seizure and only if I hit my head so hard that I had a concussion. I knew it would pass so I never had pity parties.

This does not pass -- I am ssooo impressed with you guys.

sheila

Re: What is the cortisone injection for??

Hi Sheila, Welcome!

I don't have Hashi's (Hashimoto's Thyroiditis) so I can speak much about the feelings and sensations that you are experiencing, I'll let those that are dealing with it respond to that... but I will say that the better you understand this stuff the easier it is to handle.

A lot of us are dealing with family members and friends that don't understand what we are dealing with. So don't feel like it's just you, you're not nuts and they aren't evil beings that don't care. It's just hard for folks that haven't had to deal with this stuff to realize what it's like when your body stops acting like it has for all of your life and you have to relearn it.

A thyroid storm is when the thyroid pumps out outrageous amounts of thyroid hormone and your body goes into super drive. All your body processes speed up and you just get stuck that way. It's a life threatening situation that can cause all kinds of problems even if you do survive. I'm a survivor.. I was in storm for about a bit over a year. The first doc I saw ignored my symptoms and, without getting into the whole long story, told me to go away. It was another 10 months before I saw another doc....

Anyway, I've never heard of a Hashi's patient referring to a hyper phase as being in storm... but I guess it would be pretty much the same.... just that with Hashi's it would be cycling back to hypo before it got to that extreme.

With Hashi's you do cycle back and forth between hyper and hypo. It's dependant on how your antibody levels are. You'll continue those cycles until the gland dies. For some that takes a few years, for some it can take a lifetime, it all depends on the antibody levels and how they cycle.

is doing a pretty good job at working with her Hash's as are several other folks here... so I'm sure that you'll be getting input from them.

He may have been asking about the cortisone because he's curious about the state of your adrenal glands. A good percentage of folks with thyroid disorders also have issues with adrenal fatigue due to the increased demands on them by the body to compensate for thyroid issues. A sign of a pretty good doc... we just have to see how much he knows.... Ooopss... my bitterness leaked out.... I'll simply explain by saying that there are quite a few docs that don't know a heck of a lot about proper thyroid care... that's why we're here, to learn more, to be able to participate more in our health care. To realize that things can get better once you understand what you need to do to help your body.

Don't hesitate to ask questions, we all learn from each other here....

Now, for a few questions of mine. What meds are you on? What dose? When do you take it?

That's enough to start... hehehehehe

Topper ()

On Tue, 17 Aug 2004 04:08:53 -0000 "Sheila" writes:

Hi all,First time posting.I am hypo and have been on synthroid for many years. I found out 2 years ago that my body was destroying my thyroid gland (autoimmune).I have felt like hell for a few years now and have finally decided to go to Endo. He laughed that I had hoped my autoimmune problem would get better. He said it doesn't.My TSH levels go from 2 - 210. It runs the gambit. It is like a joke trying to figure out how much synthroid I am suppose to take.I have questions if someone will help me?? The Endo asked me if I had ever had cortisone. I said no but asked nothing more. I am reading here about cortisone....what does it do for you??Also, what is the thyroid storm I read about.Every few days I get this sick feeling and it seems to radiate around my neck. Feels like someone has their hands around my throat. I can barely walk from the bedroom to the kitchen. I notice that certain things trigger it but can't actually control it.Is this the storm you guys talk about.I can not explain this terrible sick feeling to my kids or husband. It is totally impossible to describe but feels like I will fall over and die. Usually by that time it seems like an option.I have discovered that if I take pain pills it lessens this terrible feeling but I'm not getting any better just taking pain pills. Is there a medication that helps??I have not told the Doctor I take pain pills to calm this terrible feeling. But it gets so bad I can't function. This hands around the neck sensation with a terrible weak feeling is really getting to me.(My first thyroid peroxidase test number was 148 and then I ask to be tested again a year later and it was 185.) Do people live normal lives once the autoimmune thing happens.Is the life span shorter?? Thanks,sheila

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Hi ,

Hmmmm..... anyone who quotes Henry Thoreau is OK in my book. I am a big Emerson fan.

Whew, 4 weeks without your meds. I bet your turning the AC off and trying to keep the house warm about now.

How are you doing?? Is your energy level OK??

sheila

What is the cortisone injection for??> Hi all,>> First time posting.>> I am hypo and have been on synthroid for many years. I found out 2> years ago that my body was destroying my thyroid gland (autoimmune).>> I have felt like hell for a few years now and have finally decided> to go to Endo. He laughed that I had hoped my autoimmune problem> would get better. He said it doesn't.>> My TSH levels go from 2 - 210. It runs the gambit. It is like a joke> trying to figure out how much synthroid I am suppose to take.>> I have questions if someone will help me??> The Endo asked me if I had ever had cortisone. I said no but asked> nothing more. I am reading here about cortisone....what does it do> for you??>> Also, what is the thyroid storm I read about.>> Every few days I get this sick feeling and it seems to radiate> around my neck. Feels like someone has their hands around my throat.> I can barely walk from the bedroom to the kitchen. I notice that> certain things trigger it but can't actually control it.> Is this the storm you guys talk about.>> I can not explain this terrible sick feeling to my kids or husband.> It is totally impossible to describe but feels like I will fall over> and die. Usually by that time it seems like an option.>> I have discovered that if I take pain pills it lessens this terrible> feeling but I'm not getting any better just taking pain pills. Is> there a medication that helps??> I have not told the Doctor I take pain pills to calm this terrible> feeling. But it gets so bad I can't function. This hands around the> neck sensation with a terrible weak feeling is really getting to me.>> (My first thyroid peroxidase test number was 148 and then I ask to> be tested again a year later and it was 185.)>> Do people live normal lives once the autoimmune thing happens.> Is the life span shorter??>> Thanks,> sheila>>>>>>>

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Hi ,

Hmmmm..... anyone who quotes Henry Thoreau is OK in my book. I am a big Emerson fan.

Whew, 4 weeks without your meds. I bet your turning the AC off and trying to keep the house warm about now.

How are you doing?? Is your energy level OK??

sheila

What is the cortisone injection for??> Hi all,>> First time posting.>> I am hypo and have been on synthroid for many years. I found out 2> years ago that my body was destroying my thyroid gland (autoimmune).>> I have felt like hell for a few years now and have finally decided> to go to Endo. He laughed that I had hoped my autoimmune problem> would get better. He said it doesn't.>> My TSH levels go from 2 - 210. It runs the gambit. It is like a joke> trying to figure out how much synthroid I am suppose to take.>> I have questions if someone will help me??> The Endo asked me if I had ever had cortisone. I said no but asked> nothing more. I am reading here about cortisone....what does it do> for you??>> Also, what is the thyroid storm I read about.>> Every few days I get this sick feeling and it seems to radiate> around my neck. Feels like someone has their hands around my throat.> I can barely walk from the bedroom to the kitchen. I notice that> certain things trigger it but can't actually control it.> Is this the storm you guys talk about.>> I can not explain this terrible sick feeling to my kids or husband.> It is totally impossible to describe but feels like I will fall over> and die. Usually by that time it seems like an option.>> I have discovered that if I take pain pills it lessens this terrible> feeling but I'm not getting any better just taking pain pills. Is> there a medication that helps??> I have not told the Doctor I take pain pills to calm this terrible> feeling. But it gets so bad I can't function. This hands around the> neck sensation with a terrible weak feeling is really getting to me.>> (My first thyroid peroxidase test number was 148 and then I ask to> be tested again a year later and it was 185.)>> Do people live normal lives once the autoimmune thing happens.> Is the life span shorter??>> Thanks,> sheila>>>>>>>

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Thanks Sheila! I am very tired and can't sleep. But my anxiety level is pretty bad. What is worse is that even though I was dieting and starting to exercise, I gained weight. I can't wait to be back on med.

"Dreams are the touchstones of our character." Henry Thoreau

What is the cortisone injection for??> Hi all,>> First time posting.>> I am hypo and have been on synthroid for many years. I found out 2> years ago that my body was destroying my thyroid gland (autoimmune).>> I have felt like hell for a few years now and have finally decided> to go to Endo. He laughed that I had hoped my autoimmune problem> would get better. He said it doesn't.>> My TSH levels go from 2 - 210. It runs the gambit. It is like a joke> trying to figure out how much synthroid I am suppose to take.>> I have questions if someone will help me??> The Endo asked me if I had ever had cortisone. I said no but asked> nothing more. I am reading here about cortisone....what does it do> for you??>> Also, what is the thyroid storm I read about.>> Every few days I get this sick feeling and it seems to radiate> around my neck. Feels like someone has their hands around my throat.> I can barely walk from the bedroom to the kitchen. I notice that> certain things trigger it but can't actually control it.> Is this the storm you guys talk about.>> I can not explain this terrible sick feeling to my kids or husband.> It is totally impossible to describe but feels like I will fall over> and die. Usually by that time it seems like an option.>> I have discovered that if I take pain pills it lessens this terrible> feeling but I'm not getting any better just taking pain pills. Is> there a medication that helps??> I have not told the Doctor I take pain pills to calm this terrible> feeling. But it gets so bad I can't function. This hands around the> neck sensation with a terrible weak feeling is really getting to me.>> (My first thyroid peroxidase test number was 148 and then I ask to> be tested again a year later and it was 185.)>> Do people live normal lives once the autoimmune thing happens.> Is the life span shorter??>> Thanks,> sheila>>>>>>>

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Thanks Sheila! I am very tired and can't sleep. But my anxiety level is pretty bad. What is worse is that even though I was dieting and starting to exercise, I gained weight. I can't wait to be back on med.

"Dreams are the touchstones of our character." Henry Thoreau

What is the cortisone injection for??> Hi all,>> First time posting.>> I am hypo and have been on synthroid for many years. I found out 2> years ago that my body was destroying my thyroid gland (autoimmune).>> I have felt like hell for a few years now and have finally decided> to go to Endo. He laughed that I had hoped my autoimmune problem> would get better. He said it doesn't.>> My TSH levels go from 2 - 210. It runs the gambit. It is like a joke> trying to figure out how much synthroid I am suppose to take.>> I have questions if someone will help me??> The Endo asked me if I had ever had cortisone. I said no but asked> nothing more. I am reading here about cortisone....what does it do> for you??>> Also, what is the thyroid storm I read about.>> Every few days I get this sick feeling and it seems to radiate> around my neck. Feels like someone has their hands around my throat.> I can barely walk from the bedroom to the kitchen. I notice that> certain things trigger it but can't actually control it.> Is this the storm you guys talk about.>> I can not explain this terrible sick feeling to my kids or husband.> It is totally impossible to describe but feels like I will fall over> and die. Usually by that time it seems like an option.>> I have discovered that if I take pain pills it lessens this terrible> feeling but I'm not getting any better just taking pain pills. Is> there a medication that helps??> I have not told the Doctor I take pain pills to calm this terrible> feeling. But it gets so bad I can't function. This hands around the> neck sensation with a terrible weak feeling is really getting to me.>> (My first thyroid peroxidase test number was 148 and then I ask to> be tested again a year later and it was 185.)>> Do people live normal lives once the autoimmune thing happens.> Is the life span shorter??>> Thanks,> sheila>>>>>>>

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Thanks Sheila! I am very tired and can't sleep. But my anxiety level is pretty bad. What is worse is that even though I was dieting and starting to exercise, I gained weight. I can't wait to be back on med.

"Dreams are the touchstones of our character." Henry Thoreau

What is the cortisone injection for??> Hi all,>> First time posting.>> I am hypo and have been on synthroid for many years. I found out 2> years ago that my body was destroying my thyroid gland (autoimmune).>> I have felt like hell for a few years now and have finally decided> to go to Endo. He laughed that I had hoped my autoimmune problem> would get better. He said it doesn't.>> My TSH levels go from 2 - 210. It runs the gambit. It is like a joke> trying to figure out how much synthroid I am suppose to take.>> I have questions if someone will help me??> The Endo asked me if I had ever had cortisone. I said no but asked> nothing more. I am reading here about cortisone....what does it do> for you??>> Also, what is the thyroid storm I read about.>> Every few days I get this sick feeling and it seems to radiate> around my neck. Feels like someone has their hands around my throat.> I can barely walk from the bedroom to the kitchen. I notice that> certain things trigger it but can't actually control it.> Is this the storm you guys talk about.>> I can not explain this terrible sick feeling to my kids or husband.> It is totally impossible to describe but feels like I will fall over> and die. Usually by that time it seems like an option.>> I have discovered that if I take pain pills it lessens this terrible> feeling but I'm not getting any better just taking pain pills. Is> there a medication that helps??> I have not told the Doctor I take pain pills to calm this terrible> feeling. But it gets so bad I can't function. This hands around the> neck sensation with a terrible weak feeling is really getting to me.>> (My first thyroid peroxidase test number was 148 and then I ask to> be tested again a year later and it was 185.)>> Do people live normal lives once the autoimmune thing happens.> Is the life span shorter??>> Thanks,> sheila>>>>>>>

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