Re: Autoimmune...

April 9, 2000

I.

How do they deal with both Graves and Hashi's? The thought of having both

of those autoimmune diseases is very scarey. How did they discover that you

have them both?

Thanks for any info.

Jody

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April 9, 2000

Just because you are a " lowly farmer " doesn't mean that you aren't

intelligent. Sjogren's is an autoimmune disease as is Grave's. My family

history is loaded with autoimmune disease. My grandmother and Mom had Rheum

arthritis. My sister has lupus-like syndrome , Sjogrens, and also has an

inactive goiter (nothyroid disease yet). I have Graves and Hashis. Having

an auto immune disease makes you more likely to have other autoimmune

diseases. I f you start thinking about it you feel like your body is just

getting bombarded! Keep up on physical problems, keep in touch with your

doctors and do your best to help yourself feel better. There is a drug

called Saligen that may be able to help your dryness problems from the

Sjogrens. Ask you Dr. about it. Hope this is of some help.... I.

Autoimmune...

> I've read that diabetes and myasthenia gravis are associated with Graves'.

> My " baby " is Sjogren Syndrome, which I was diagnosed with way before

Graves'.

> I've publicly wondered whether Graves' and Sjogren are one and the same

> disease, as the symptoms are the same in many areas and I truly don't know

> where one starts and the other stops.

>

> Sjogren is associated with Rheumatoid Arthritis, so is diagnosed and

treated

> by a Rheumatologist. I've wondered whether she would have picked up on

the

> Graves' at the time of diagnosis if there had been some question about

> linkage. After all, we know that the symptoms are pretty obvious!

>

> Since I'm only a lowly farmer, I just throw out my creative theories for

the

> science-types to play with, so just keep in mind that this is only

> speculation on my part.

>

> By the way, some of the symptoms of Sjogren are: dry eyes and mouth, joint

> pain, periodic pain in the jaw area where the submandibular glands are...

>

> In a message dated 4/9/00 4:15:26 AM Eastern Daylight Time,

> graves_supportegroups writes:

>

> << Anybody know what other autoimmune diseases are frequently associated

with

> Graves? Isn't Sjogerns or something like that one of them. . . ?

> myasthenis gravis? bad spelling and just wondering, not touting facts.

> Anyone know the handful commonly associated? >>

>

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April 9, 2000

,

All I can say is WOW!!! You sound like yours should be in a text book for

others to be aware of.

If you are TSH surpressed, will the pituatary ever start working again? And

doesn't the pituatary do other hormones? (I haven't gotten that far in

learning about this disease yet to know for sure) But if the pituatary does

work with other endocrine glands and hormones, is yours doing so even if it

is not doing the TSH?

When you are hypo do you go on synthroid? I don't blame you for not letting

them nuke you though, not if you can handle things as they are.

I was reading something today, not sure exactly where (and anyone can

correct me if I misread) but it was either at aarda.org or the

thyroidmanger.org about it not being uncommon for Graves patients to end up

with Hashi before it is all over. (If it was at the thyroidmanger site I

was reading chapters 10/11/12...and I could have misread it, I hope so).

Sometimes I think I am trying to absorb way to much way to fast because I

know I get things confused.

or anyone else...do you know of any research/studies/readings material

on how menopause can affect GD? For the last year every third cycle I don't

get my period anymore, but since my dosage increase for the first 2 days of

my period I have all kinds of energy, get tons done and feel really good for

most of those two days...when my period is over I crash for 2/3 days...now

this was my first cycle where I didn't get my period after the increase but

about the day I should have ended it I started exhibiting hyper symptoms and

they are getting worse everyday. I had forgotten how bad hyper can be, a

little bit goes a long way but this is more than I can handle right

now...the heart palps are constant the last 2 days and my resting pulse is

running between 96-110 and my blood pressure is way up.

I am going for blood work tomorrow and my primary ordered it all to be done.

I am just wondering if this is all from the dosage increase (from .075 to

..088 of synthroid) or is starting menopause part of it? By my primarys

standards I am not starting menopause, he did an FSH and said it was well

within normal ranges, but that was last year.

Any info from anyone would be appreciated.

Thanks and *HUGZ* to all

Jody

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April 9, 2000

Hi Jody. You are right, both diseases can drive you nuts. I never know if

I am coming or going. I originally had only hyper and that is very hyper

symptoms diagnosed in Feb of 1996. I was originally started on 450 mg PTU a

day and quickly after 6 weeks down to 150 mg a day. I react very well to

the PTU. At the time of diagnosis I had high titers for antibodies against

thyrostimulating hormone, and no significant elevation of the other

antibodies. After a year of therapy I was taken off PTU and subsequently

went hypo on my own. I had TSH suppression due to what they said was

possible shrinkage in the pituitary from basically lack of use. I had been

hyper for quite some time and supposedly the TSH portion of the brain more

or less can become inactive from not having to be active in releasing the

TSH. My problem came about when my thyroid hormone levels dropped below mid

normal with out detectable TSH and no endo would believe I was hypo. They

all insisted I was still hyper and needed go back on PTU or have RAI to drop

my levels even more. At this point I was on disability for chronic fatigue,

fibromyalgia, terrible joint pain, swelling of my hands, face and feet, dry

skin, brittle hair, 40 lb/ weight gain in 5 months etc. Does this sound

vaguely like something else, maybe HYPO? Well my GP took the care in her

own hands and basically watched my levels. She ran a mess of tests, all

thyroid possible, scans, ultra sounds, etc. I t turned out all my

antibodies are sky high now. Each time my thyroid surges it not only makes

high levels of thyroid hormone but is also being attacked and killed off by

the antiperoxidase antibodies and antithyroglob antis. The good thing is I

don't go as hyper any more because more of the throid is killed off. The

bad thing is I swing both ways. I get hyper for awhile then drop off on my

own and start going hypo. The GP spoke with an endo an they feel that I

have both the Hashis and Graves. Right now my levels are okay and not on

any ATDs but if I start to surge I will only do block and replace therapy.

I am in the process of trying to obtian info for my GP. I am not typical

for lab results for diagn. hashi's. If you go hypo you should see the TSH

go up but because I have suppression you don't see it in me. The diagnosis

was made based on the titers scans and ultrasounds. Because of the

suppression I don't trust the endos to nuke me and then have them try to

rely on the TSH to determine the right replacement meds. Could you imagine

if my TSH didnt kick in until my T4 was 4 and T3 around 70. I would be in a

myxedema coma before they would say okay lets give her alittle synthroid. I

think I will keep my thryoid for awhile. At least it works somewhat if not

alittle too much at times. But thats what PTU is for. Oh by the way as soon

as my levels rose the symptoms began to magically disappear. Gee I wonder

why. If the endos want to call normal ( heart rate in low 80's, no

abnormal sweating, no tremors, no diarrhea, normal cyle) hyper then I think

I will just stay this way and take my chances. When the endos saw my

numbers drop and call me almost euthroid(yet feeling obviously very hypo)

and they wanted to make me even more hypo to get the numbers right I decided

that I was going to try every way to control my condition. Treat my

symptoms not my numbers! Oh well enough voicing myself tonight! Hoping all

a good day tomorrow.... I.

Re: Autoimmune...

> I.

> How do they deal with both Graves and Hashi's? The thought of having both

> of those autoimmune diseases is very scarey. How did they discover that

you

> have them both?

> Thanks for any info.

> Jody

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April 10, 2000

Hi , I have read and know about people with Hashis who go hyper in

fact my best friend does that. It's funny because she is such a wild

woman when her levels go up but they are never nearly as high as mine

have been.She is usually such a slow driver but the last time her levels

went up she got a ticket. She says she can't stand being hyper. Her

doctor does not treat her when her levels are low for fear and I mean

her is afraid that it will set her off completely. Elaine aka Daisy says

that the diseases are the same but one has a predominace of one antibody

and one the other.

April 11, 2000

The diseases are indeed very similar. With hyper your thyroid sstimulating

receptor antis are high where in hypo the antiperodidase and

antithyroglobulin are high. In my case they all are and so they are

competing with each other. If I end up totally hypo I just hope I have a

good dr. who will prescribe the right doses of meds to keep me functioning.

This is what holds me back from the RAI. My gp is good but would rather

have an endo handle the post RAI changes.

Speaking of RAI I was talking with two nurses the other day at work ( I am

a mat child RN) who I hadn't seen in a while. I knew they were both hyper

and on PTU originally, It turned out they both went through with the RAI.

And guess what? They both feel miserable. They are on synthroid, but are

tired, have weight gain of 30 lbs., joint pain, swelling of hands and feet

and have muscle cramps. They both thought the symptoms were due to some

aging, but they are in the early 40's. Their docs. will not prescribe more

meds because the TSH is normal and told both that they need to exercise and

diet. They were told that have pains because of the weight gain and working

too hard. How stupid. Neither one ever had a weight problem or any kind of

joint problems. I told them what they need is first a new endo and then

some T3 supplement. They both feel worse then when they were hyper. This

is my concern! I am getting them info from the NEJM from Feb of 99 to give

to their docs.

Just thought I would voice. Just some more reasons not to go through

with the RAI. Later.. I.

Re: Autoimmune...

> Hi , I have read and know about people with Hashis who go hyper in

> fact my best friend does that. It's funny because she is such a wild

> woman when her levels go up but they are never nearly as high as mine

> have been.She is usually such a slow driver but the last time her levels

> went up she got a ticket. She says she can't stand being hyper. Her

> doctor does not treat her when her levels are low for fear and I mean

> her is afraid that it will set her off completely. Elaine aka Daisy says

> that the diseases are the same but one has a predominace of one antibody

> and one the other.

>

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intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

April 11, 2000

Jody, my pituitary gland does produce the other essential hormones. I

don't have any indication of pit. tumor. They are just theorizing that

because of lack of use for probably at least 4 years that I think I was

probably hyper that the area that secretes the TSH may shrink or that the

whole feedback from the hypthalamus gets messed up. I would not doubt that

many people who have been hyper and then treated hve a similar problem. For

others in this group, when you were treated with ATD's or RAI, how low did

you thyroid levels go before your TSH kicked in? It was probably quite low

in the normal range and you probably felt hypo for a time. The docs say the

pit should kick in again but it could take some time. My levels were

dropping for 7 months in the mid to low normal range s and still no readable

TSH. This didn't bother the endos. They didn't care that I ended up on

disability and could hardly care for my four kids. They were all content

with letting me go lower and lower despite all symptoms getting worse and

worse. It was my GP who has known me for years who said enough. She gave

me synthroid. I took 50mg and then 25 mg, enough to rid me of most of the

symptoms. My thyroid levels went up to mid upper range before I noticed

some relief. It took time before the T3 levels went up though. That is why

if I need replacement again we will add Cytomel.

Oh, I read also that eventually most hyperT people will eventually end

hypo with Hashi's also. I assume that the antibodies ended up destroying

the tissue (like myself) and the result is less usuable tissue to secrete

hormones. Got to go, the kids are going nuts! I.

Re: Autoimmune...

> ,

> All I can say is WOW!!! You sound like yours should be in a text book for

> others to be aware of.

>

> If you are TSH surpressed, will the pituatary ever start working again?

And

> doesn't the pituatary do other hormones? (I haven't gotten that far in

> learning about this disease yet to know for sure) But if the pituatary

does

> work with other endocrine glands and hormones, is yours doing so even if

it

> is not doing the TSH?

>

> When you are hypo do you go on synthroid? I don't blame you for not

letting

> them nuke you though, not if you can handle things as they are.

>

> I was reading something today, not sure exactly where (and anyone can

> correct me if I misread) but it was either at aarda.org or the

> thyroidmanger.org about it not being uncommon for Graves patients to end

up

> with Hashi before it is all over. (If it was at the thyroidmanger site I

> was reading chapters 10/11/12...and I could have misread it, I hope so).

> Sometimes I think I am trying to absorb way to much way to fast because I

> know I get things confused.

>

> or anyone else...do you know of any research/studies/readings

material

> on how menopause can affect GD? For the last year every third cycle I

don't

> get my period anymore, but since my dosage increase for the first 2 days

of

> my period I have all kinds of energy, get tons done and feel really good

for

> most of those two days...when my period is over I crash for 2/3 days...now

> this was my first cycle where I didn't get my period after the increase

but

> about the day I should have ended it I started exhibiting hyper symptoms

and

> they are getting worse everyday. I had forgotten how bad hyper can be, a

> little bit goes a long way but this is more than I can handle right

> now...the heart palps are constant the last 2 days and my resting pulse is

> running between 96-110 and my blood pressure is way up.

>

> I am going for blood work tomorrow and my primary ordered it all to be

done.

> I am just wondering if this is all from the dosage increase (from .075

to

> .088 of synthroid) or is starting menopause part of it? By my primarys

> standards I am not starting menopause, he did an FSH and said it was well

> within normal ranges, but that was last year.

>

> Any info from anyone would be appreciated.

> Thanks and *HUGZ* to all

> Jody

> ______________________________________________________

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

April 11, 2000

Hi -

My TSH has never been above 4.0-4.5 (that I know of) even though my endo has

diagnosed me with hypothyroidism (I'm

post-RAI). I can't remember what it was when I was considered " euthyroid " and

not taking Synthroid yet. But I

didn't start taking Synthroid until over a year post-RAI. I don't think that my

TSH was allowed to get very high

and there seems to be some correlation in some studies between that and weight

gain (I never had the added problem

of a substantial weight gain).

I'm glad you're giving the NEJM article about the T3/T4 combo to those post-RAI

nurses at work. Those symptoms you

mentioned are some of the symptoms I started out with and then they just seemed

to start building on each other.

There's no need for them to suffer like that.

There are some downsides to T3 too that I always forget to mention. The ups and

downs aren't great. So the

patient'll be a little hyper for part of the day and then hypo (I take mine

3x/day). So it's still not as good as

having your own gland. But I don't care! It's well worth it in my opinion and

I never want to go back to the way I

was. It got so bad that I couldn't leave the house without at least 3 doses of

Immodium to get me through the day.

And irritable bowel syndrome isn't recognized as a symptom of hypothyroidism.

It makes me wonder how many other

unrecognized problems there are either post-RAI or when the patient's hypo.

Isn't this internet wonderful? It's gotta be pushing improvements in our

treatment ahead faster now that we can all

talk to each other and know it's not just us. It's probably irritating to

doctors when the patient who's symptoms

they've spent years dismissing now comes in and says " Yeah! But I've just

talked to 10 people today that are having

the same problem and the only thing that's common among us all is that we have

Graves' (or are post-RAI or are

hypo). " We couldn't get much done as individuals but as a group, changes are

starting to happen.

Take care,

Utecht

Iannuzzi wrote:

> Jody, my pituitary gland does produce the other essential hormones. I

> don't have any indication of pit. tumor. They are just theorizing that

> because of lack of use for probably at least 4 years that I think I was

> probably hyper that the area that secretes the TSH may shrink or that the

> whole feedback from the hypthalamus gets messed up. I would not doubt that

> many people who have been hyper and then treated hve a similar problem. For

> others in this group, when you were treated with ATD's or RAI, how low did

> you thyroid levels go before your TSH kicked in? It was probably quite low

> in the normal range and you probably felt hypo for a time. The docs say the

> pit should kick in again but it could take some time. My levels were

> dropping for 7 months in the mid to low normal range s and still no readable

> TSH. This didn't bother the endos. They didn't care that I ended up on

> disability and could hardly care for my four kids. They were all content

> with letting me go lower and lower despite all symptoms getting worse and

> worse. It was my GP who has known me for years who said enough. She gave

> me synthroid. I took 50mg and then 25 mg, enough to rid me of most of the

> symptoms. My thyroid levels went up to mid upper range before I noticed

> some relief. It took time before the T3 levels went up though. That is why

> if I need replacement again we will add Cytomel.

> Oh, I read also that eventually most hyperT people will eventually end

> hypo with Hashi's also. I assume that the antibodies ended up destroying

> the tissue (like myself) and the result is less usuable tissue to secrete

> hormones. Got to go, the kids are going nuts! I.

> Re: Autoimmune...

>

> > ,

> > All I can say is WOW!!! You sound like yours should be in a text book for

> > others to be aware of.

> >

> > If you are TSH surpressed, will the pituatary ever start working again?

> And

> > doesn't the pituatary do other hormones? (I haven't gotten that far in

> > learning about this disease yet to know for sure) But if the pituatary

> does

> > work with other endocrine glands and hormones, is yours doing so even if

> it

> > is not doing the TSH?

> >

> > When you are hypo do you go on synthroid? I don't blame you for not

> letting

> > them nuke you though, not if you can handle things as they are.

> >

> > I was reading something today, not sure exactly where (and anyone can

> > correct me if I misread) but it was either at aarda.org or the

> > thyroidmanger.org about it not being uncommon for Graves patients to end

> up

> > with Hashi before it is all over. (If it was at the thyroidmanger site I

> > was reading chapters 10/11/12...and I could have misread it, I hope so).

> > Sometimes I think I am trying to absorb way to much way to fast because I

> > know I get things confused.

> >

> > or anyone else...do you know of any research/studies/readings

> material

> > on how menopause can affect GD? For the last year every third cycle I

> don't

> > get my period anymore, but since my dosage increase for the first 2 days

> of

> > my period I have all kinds of energy, get tons done and feel really good

> for

> > most of those two days...when my period is over I crash for 2/3 days...now

> > this was my first cycle where I didn't get my period after the increase

> but

> > about the day I should have ended it I started exhibiting hyper symptoms

> and

> > they are getting worse everyday. I had forgotten how bad hyper can be, a

> > little bit goes a long way but this is more than I can handle right

> > now...the heart palps are constant the last 2 days and my resting pulse is

> > running between 96-110 and my blood pressure is way up.

> >

> > I am going for blood work tomorrow and my primary ordered it all to be

> done.

> > I am just wondering if this is all from the dosage increase (from .075

> to

> > .088 of synthroid) or is starting menopause part of it? By my primarys

> > standards I am not starting menopause, he did an FSH and said it was well

> > within normal ranges, but that was last year.

> >

> > Any info from anyone would be appreciated.

> > Thanks and *HUGZ* to all

> > Jody

> > ______________________________________________________

> > Get Your Private, Free Email at http://www.hotmail.com

> >

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

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> > Apply NOW!

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

> >

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

> > The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> > Please consult your doctor before changing or trying new treatments.

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

> >

>

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intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

April 11, 2000

:

My TSH went from .01 to 1.78 once my FT4 fell from 10.7 to 1.8. My FT3

fell also, from 169 to somewhere below the 130's (my last blood test did

not provide indexed levels). My next results hopefully will confirm the

start of remission.

I really really don't want to believe that I will inevitably go hypo. For

those that go into remission fairly quickly, is going hypo still a certainty?

Also, I am in my early 40's, and even without really going hypo, have all

the symptoms of your friends (30 lb weight gain, muscle and joint pains,

but no swelling) - my numbers never got very low, so wonder if these

symptoms are only caused by being hypo.

>others in this group, when you were treated with ATD's or RAI, how low did

>you thyroid levels go before your TSH kicked in? It was probably quite low

>in the normal range and you probably felt hypo for a time.

Shen

Holy Macro!

April 11, 2000

, a FT4 of 10.7? WOW! You must have felt crazy! I had FT4 drop to 0.7

(.5-1.5 range) and still noTSH. The endos said to me that maybe my normal

FT4 could be 0.5 and a TT4 of 5.0 (4-12 range) to be normal. With a FT4 of

0.7 and TT4 of 7.2 I felt like total garbage and still no TSH. Like I said

before I did not want to let my levels drop anymore. The endos would not

contribute any of my symptoms of weight gain, swelling, fatigue, muscle pain

and cramping, to my thyroid. They were convinced that I was still

subclinicallly hyper and wanted to drop my levels further. Had I let them I

fear I would have never been able to function or even get out of bed. As

soon as my levels started to go up ;my symptoms started to lessen. How

come I can see the correlation as clear as day but the endos say elsewise?

I was on 8 different meds during this horrible time. I am now only on

Zoloft and Flexoril for my much improved fibromyalgia. Oh, by the way

when I was hypo I didn't have constipation but irritable bowel. They say

this is related to the fibromyalgia. But fibro gets intensified when you

become hypo.

I remember another interesting thing, when I went hypo my cholesterol

jumped 70 from 140 to 210 in just months. The thing is my diet never

changed but my weight climbed 30 lbs. suddenly also. This is really scary.

Here the docs are worried about osteoporosis but dropping my levels caused

such an increase in weight and cholesterol, increasing my risk for heart

disease. When my TT4 is 10-11 and FT4 1.0-1.2 I feel my best. These are

normal in range and I am totally asymptomatic for hyperT. Yet if my levels

drop lower I start to feel hypo. Seems like I am better off being in the

upper normal range a be considered hyper than to be lower and feel terrible.

I.

Re: Autoimmune...

> :

>

> My TSH went from .01 to 1.78 once my FT4 fell from 10.7 to 1.8. My FT3

> fell also, from 169 to somewhere below the 130's (my last blood test did

> not provide indexed levels). My next results hopefully will confirm the

> start of remission.

>

> I really really don't want to believe that I will inevitably go hypo. For

> those that go into remission fairly quickly, is going hypo still a

certainty?

>

> Also, I am in my early 40's, and even without really going hypo, have all

> the symptoms of your friends (30 lb weight gain, muscle and joint pains,

> but no swelling) - my numbers never got very low, so wonder if these

> symptoms are only caused by being hypo.

>

> >others in this group, when you were treated with ATD's or RAI, how low

did

> >you thyroid levels go before your TSH kicked in? It was probably quite

low

> >in the normal range and you probably felt hypo for a time.

>

> Shen

> Holy Macro!

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

April 11, 2000

Hi All-

My 60 year old father is just now getting some of the problems that I've lived

with since my late 20s. He thinks

they're terrible. And no doubt they are. Why can't they figure out what

they're doing to people? I act so much

older than anyone else my age and I'm only 37. And no one else in my family is

like this (but they have thyroids).

? Do you have any reactions to Zoloft? I was probably unusual but I had a

bleeding rash on it, exacerbated

IBS (if that's possible) and I was violent while on it. My doctor kept

insisting that I increase it (he was

convinced I was obsessive-compulsive) which worsened the rash and the temper. I

weaned myself off of it over 3

weeks and the rash went away but it left horrible scars that haven't gone away

over the 3 years I've been off of it.

By the way, I haven't had panic or anxiety attacks since I've been on T3 (which

is why I went on Zoloft) and I can

sleep all night (before I'd wake up every 1/2 hour or so). I also no longer

have the obsessive-compulsive

tendencies that I had before. I did not have any obsessive-compulsive

tendencies before I had RAI.

All this brain fidgeting makes me nervous since they can't really test the

long-term results of these medications.

Not a popular thing to say since SSRIs are the new fad drugs of the times. But

like most drugs they deal with

symptoms and don't get to the real problem.

I have no thyroid (and thyroid hormone affects every single cell in your body)

and that will be the first place I

look if I have problems from now on. Too many of the problems that they said

weren't thyroid related were. So now

I don't trust any of the information I get. Hope they figure this out soon.

Take care,

April 12, 2000

Hi , I don't have any real adverse problems with the Zoloft. When I

first started it , I noticed I became a little numbed at times. I cried

less, felt a little too laid back, less interested in relations with hubby,

but after a few months they subsided. I can tell you that when I tried to

go off of the Zoloft, my fibro started to flare and I noticed the start of

panic attacks. I was only off the meds about 2 weeks when the symptoms

started again. I opted to go back on again. I am only on 50 mg. though. I

need the Flexoril at night to help with sleep and muscle tension. If I

forget to take it I am so stiff and achy in my back. When I was hypo I had

worse panic than when I was hyper. When I am hyper I am more anxious. With

the panic attacks, they come on more suddenly. I will be resting quietly,

have normal heart rate of 70-80's and out of no where get short of breath,

palpitations, feelings of death. Then they would subside. With hyper I

just felt anxious all the time, and heart rate would not jump up and down so

quickly, more like constant tachy. Like I said before once my thyroid

levels started to go up either on my own or with meds my symptoms started to

subside. When my numbers are right for me, not the docs, I feel completely

normal and asymptomatic for the hyperT they say I should have. I am glad my

gp thinks that the symptoms are thyroid related. Too many endos try to tell

you you have panic disorder, fibromyalgia, arthritis, weight problems,

everything but the thryoid. It amazing to think these guys specialized in

endocrinology but can't make simple correlations between symptoms and

levels. Maybe because I am a nurse and trained to listen to my patients

rather than just their lab values I am more intuned to what the body is

saying. I would say that 90% of the time a patient says they think

something is going on in their bodies they are right. If only the endos

would believe us 90% of the time. Oh well, the best we can do is keep track

of our bodies and make sure our docs are responding in our best interests.

Quite a task sometimes though. I.

Re: Autoimmune...

> Hi All-

>

> My 60 year old father is just now getting some of the problems that I've

lived with since my late 20s. He thinks

> they're terrible. And no doubt they are. Why can't they figure out what

they're doing to people? I act so much

> older than anyone else my age and I'm only 37. And no one else in my

family is like this (but they have thyroids).

>

> ? Do you have any reactions to Zoloft? I was probably unusual but I

had a bleeding rash on it, exacerbated

> IBS (if that's possible) and I was violent while on it. My doctor kept

insisting that I increase it (he was

> convinced I was obsessive-compulsive) which worsened the rash and the

temper. I weaned myself off of it over 3

> weeks and the rash went away but it left horrible scars that haven't gone

away over the 3 years I've been off of it.

>

> By the way, I haven't had panic or anxiety attacks since I've been on T3

(which is why I went on Zoloft) and I can

> sleep all night (before I'd wake up every 1/2 hour or so). I also no

longer have the obsessive-compulsive

> tendencies that I had before. I did not have any obsessive-compulsive

tendencies before I had RAI.

>

> All this brain fidgeting makes me nervous since they can't really test the

long-term results of these medications.

> Not a popular thing to say since SSRIs are the new fad drugs of the times.

But like most drugs they deal with

> symptoms and don't get to the real problem.

>

> I have no thyroid (and thyroid hormone affects every single cell in your

body) and that will be the first place I

> look if I have problems from now on. Too many of the problems that they

said weren't thyroid related were. So now

> I don't trust any of the information I get. Hope they figure this out

soon.

>

> Take care,

>

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

> High rates giving you headaches? The 0% APR Introductory Rate from

> Capital One. 9.9% Fixed thereafter!

> http://click./1/3010/3/_/585824/_/955515145/

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

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

April 12, 2000

:

I've had a few good days where I've felt like my " old self, " these were all

due to my cutting back on PTU when I felt like I was going hypo.

Unfortunately, none of these good days coincided with a blood test, I

wonder if my numbers would have shown a difference to reflect how I felt?

Do you know when numbers are right for you because you have had extended

periods of feeling well that you can correlate to blood tests?

I'm just starting to face the constant anxiety you describe when you were

hyper. It's so persistent and relentless. Besides overeating, I'm trying

deep breathing and inner focus techniques to try and cut the cycle, with

some small success, but the anxiety can really distract from doing anything

worthwhile all day.

>When my numbers are right for me, not the docs, I feel completely

>normal and asymptomatic for the hyperT they say I should have.

Shen

Holy Macro!

April 12, 2000

, my gp runs blood tests frequently. So her and I have looked for a

correlation between my levels and symptoms. From what we can make it seems

I feel the best when my TT4 is around 10-11 and FT4 around 1.0-1.1. My TT3

needs to be at least 160. I can't recall my FT3, it might be some where

around 325. I have had runs of 2-4 months where my levels were mostly

stable in this range and I have felt mostly normal. My heart rate would be

lower 80's, no tremor or palps, normal B/P, normal cholesterol of 140,

normal menstrual cycle, etc. I was so frightened when my levels dropped and

I felt so terrible. That is when the panic started, had heavy cycles,

headaches, dizzy spells, overwhelming fatigue, swelling, and that increase

in cholesterol in only a few months of 70. I would think that these

symptoms would put me at higher risk for health problems then having higher

levels and asymptomatic. What do you think? I feel like I constantly have

to justify myself because allowing me to have these higher levels without

TSH doesn't sit well with the endos. They just want your numbers right

regardless of how you feel. Re: Autoimmune...

> :

>

> I've had a few good days where I've felt like my " old self, " these were

all

> due to my cutting back on PTU when I felt like I was going hypo.

> Unfortunately, none of these good days coincided with a blood test, I

> wonder if my numbers would have shown a difference to reflect how I felt?

> Do you know when numbers are right for you because you have had extended

> periods of feeling well that you can correlate to blood tests?

>

> I'm just starting to face the constant anxiety you describe when you were

> hyper. It's so persistent and relentless. Besides overeating, I'm trying

> deep breathing and inner focus techniques to try and cut the cycle, with

> some small success, but the anxiety can really distract from doing

anything

> worthwhile all day.

>

> >When my numbers are right for me, not the docs, I feel completely

> >normal and asymptomatic for the hyperT they say I should have.

>

> Shen

> Holy Macro!

>

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

> eGroups eLerts

> It's Easy. It's Fun. Best of All, it's Free!

> http://click./1/3079/3/_/585824/_/955560806/

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

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

April 12, 2000

I'm still early enough in therapy that I am decreasing meds every month, so

I have not had the experience you've had with steady levels and sustained

periods of " normality. " I understand what you mean about being torn

between your numbers and how you feel though.

At 01:59 PM 04/12/2000 -0400, you wrote:

>, my gp runs blood tests frequently. So her and I have looked for a

>correlation between my levels and symptoms. From what we can make it seems

>I feel the best when my TT4 is around 10-11 and FT4 around 1.0-1.1. My TT3

>needs to be at least 160. I can't recall my FT3, it might be some where

>around 325. I have had runs of 2-4 months where my levels were mostly

>stable in this range and I have felt mostly normal. My heart rate would be

>lower 80's, no tremor or palps, normal B/P, normal cholesterol of 140,

>normal menstrual cycle, etc. I was so frightened when my levels dropped and

>I felt so terrible. That is when the panic started, had heavy cycles,

>headaches, dizzy spells, overwhelming fatigue, swelling, and that increase

>in cholesterol in only a few months of 70. I would think that these

>symptoms would put me at higher risk for health problems then having higher

>levels and asymptomatic. What do you think? I feel like I constantly have

>to justify myself because allowing me to have these higher levels without

>TSH doesn't sit well with the endos. They just want your numbers right

>regardless of how you feel. Re: Autoimmune...

>

>> :

>>

>> I've had a few good days where I've felt like my " old self, " these were

>all

>> due to my cutting back on PTU when I felt like I was going hypo.

>> Unfortunately, none of these good days coincided with a blood test, I

>> wonder if my numbers would have shown a difference to reflect how I felt?

>> Do you know when numbers are right for you because you have had extended

>> periods of feeling well that you can correlate to blood tests?

>>

>> I'm just starting to face the constant anxiety you describe when you were

>> hyper. It's so persistent and relentless. Besides overeating, I'm trying

>> deep breathing and inner focus techniques to try and cut the cycle, with

>> some small success, but the anxiety can really distract from doing

>anything

>> worthwhile all day.

>>

>> >When my numbers are right for me, not the docs, I feel completely

>> >normal and asymptomatic for the hyperT they say I should have.

>>

>> Shen

>> Holy Macro!

>>

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

>> eGroups eLerts

>> It's Easy. It's Fun. Best of All, it's Free!

>> http://click./1/3079/3/_/585824/_/955560806/

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

>>

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

>> The Graves' list is intended for informational purposes only and is not

>intended to replace expert medical care.

>> Please consult your doctor before changing or trying new treatments.

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

>>

>

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

>Get paid for the stuff you know!

>Get answers for the stuff you don’t. And get $10 to spend on the site!

>http://click./1/2200/3/_/585824/_/955561711/

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

>

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

>The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

>Please consult your doctor before changing or trying new treatments.

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

>

Shen

Holy Macro!

April 12, 2000

Hi -

My GP had me on 100 mg and wanted to move me up even higher. Like I said, I

originally went on it for panic attacks

and those disappeared at 25 mg. When he kept insisting on pushing it higher I

looked in my trusty PDR to see what

he was doing since the panic attacks weren't a problem anymore. To make a short

story long, I had mentioned in

passing that I had some obsessive-compulsive tendencies (that's what he was

targeting) but they weren't a problem if

I'd force myself not to give in to them. I'd be unhappy for a day or so then

they'd be gone for a while and they

only reappeared when I was under a lot of stress. He was convinced that it was

a terrible problem and I was

scarring myself. He ignored the fact that every time I increased the Zoloft,

the rash would get even more severe.

Then he'd increase my dose to combat the " obsessive-compulsive self-mutilation "

and then my rash and scarring would

get even worse, and so on............. I refused to go any higher than 100

and about 2 weeks before I had to

defend my thesis, I told him I had to drop down since I was so stupid and

scattered I couldn't even think let alone

argue with molecular biology professors. He dropped me down to 75 mg and right

after my thesis defense was done I

weaned myself off of Zoloft (I was on it for a total of 6 months). I tapered

down from 75 to 50 to 25 to 12.5 and

then off (staying on each dose for one week). I still had weird shock-like

feelings in my noggin and would lose my

balance and fall over. But it didn't seem to be as severe or last as long as

the poor people that went off

cold-turkey.

In this GPs defense, he was really trying to help me in the only way he knew

how. But when I brought up T3 for hypo

patients he didn't feel comfortable prescribing it for me and referred me to the

super endo I have now. This endo

ordered lots of expensive tests that the GP would run without question since the

endo wasn't on my insurance. This

GP now uses T3 instead of Zoloft on all his hypo patients that have low to

low-normal free and total T3 values. He

checks that before he'll put patients on SSRIs. And if the T3 works, that's

all he does (he told me the other day

that he's had remarkable success).

You all have to remember that my thyroid gland is gone so I don't know how this

would apply to you since

you're on ATDs. But it's just something to keep in mind if you ever start

having problems and maybe you could ask

your doctor about. It's a moot point really since you're happy with the meds

you're on. For me, I was allergic to

Zoloft since the rash disappeared after I went off of it (no more

" self-mutilation " either).

Take care,

Iannuzzi wrote:

> Hi , I don't have any real adverse problems with the Zoloft. When I

> first started it , I noticed I became a little numbed at times. I cried

> less, felt a little too laid back, less interested in relations with hubby,

> but after a few months they subsided. I can tell you that when I tried to

> go off of the Zoloft, my fibro started to flare and I noticed the start of

> panic attacks. I was only off the meds about 2 weeks when the symptoms

> started again. I opted to go back on again. I am only on 50 mg. though. I

> need the Flexoril at night to help with sleep and muscle tension. If I

> forget to take it I am so stiff and achy in my back. When I was hypo I had

> worse panic than when I was hyper. When I am hyper I am more anxious. With

> the panic attacks, they come on more suddenly. I will be resting quietly,

> have normal heart rate of 70-80's and out of no where get short of breath,

> palpitations, feelings of death. Then they would subside. With hyper I

> just felt anxious all the time, and heart rate would not jump up and down so

> quickly, more like constant tachy. Like I said before once my thyroid

> levels started to go up either on my own or with meds my symptoms started to

> subside. When my numbers are right for me, not the docs, I feel completely

> normal and asymptomatic for the hyperT they say I should have. I am glad my

> gp thinks that the symptoms are thyroid related. Too many endos try to tell

> you you have panic disorder, fibromyalgia, arthritis, weight problems,

> everything but the thryoid. It amazing to think these guys specialized in

> endocrinology but can't make simple correlations between symptoms and

> levels. Maybe because I am a nurse and trained to listen to my patients

> rather than just their lab values I am more intuned to what the body is

> saying. I would say that 90% of the time a patient says they think

> something is going on in their bodies they are right. If only the endos

> would believe us 90% of the time. Oh well, the best we can do is keep track

> of our bodies and make sure our docs are responding in our best interests.

> Quite a task sometimes though. I.

> Re: Autoimmune...

>

> > Hi All-

> >

> > My 60 year old father is just now getting some of the problems that I've

> lived with since my late 20s. He thinks

> > they're terrible. And no doubt they are. Why can't they figure out what

> they're doing to people? I act so much

> > older than anyone else my age and I'm only 37. And no one else in my

> family is like this (but they have thyroids).

> >

> > ? Do you have any reactions to Zoloft? I was probably unusual but I

> had a bleeding rash on it, exacerbated

> > IBS (if that's possible) and I was violent while on it. My doctor kept

> insisting that I increase it (he was

> > convinced I was obsessive-compulsive) which worsened the rash and the

> temper. I weaned myself off of it over 3

> > weeks and the rash went away but it left horrible scars that haven't gone

> away over the 3 years I've been off of it.

> >

> > By the way, I haven't had panic or anxiety attacks since I've been on T3

> (which is why I went on Zoloft) and I can

> > sleep all night (before I'd wake up every 1/2 hour or so). I also no

> longer have the obsessive-compulsive

> > tendencies that I had before. I did not have any obsessive-compulsive

> tendencies before I had RAI.

> >

> > All this brain fidgeting makes me nervous since they can't really test the

> long-term results of these medications.

> > Not a popular thing to say since SSRIs are the new fad drugs of the times.

> But like most drugs they deal with

> > symptoms and don't get to the real problem.

> >

> > I have no thyroid (and thyroid hormone affects every single cell in your

> body) and that will be the first place I

> > look if I have problems from now on. Too many of the problems that they

> said weren't thyroid related were. So now

> > I don't trust any of the information I get. Hope they figure this out

> soon.

> >

> > Take care,

> >

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

> > High rates giving you headaches? The 0% APR Introductory Rate from

> > Capital One. 9.9% Fixed thereafter!

> > http://click./1/3010/3/_/585824/_/955515145/

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

> >

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

> > The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> > Please consult your doctor before changing or trying new treatments.

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

> >

>

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

> Get your money connected @ OnMoney.com - the first Web site that lets

> you see and manage all of your finances all in one place.

> http://click./1/3012/3/_/585824/_/955548647/

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

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

April 12, 2000

I forgot to say that the obsessive compulsive tendencies that I mentioned in

passing had to do with rechecking things a

couple of times before I'd leave the house. They had nothing to do with

self-mutilation so I have no idea why the GP

became so intent on a scarring rash that I didn't have before I started Zoloft.

Ah well, I guess he forgot to listen to

the patient. And I went along with it since the Zoloft did work for the panic

attacks (but T3 did too although that was

long before I knew about it).

Take care,

Utecht

Utecht wrote:

> Hi -

>

> My GP had me on 100 mg and wanted to move me up even higher. Like I said, I

originally went on it for panic attacks

> and those disappeared at 25 mg. When he kept insisting on pushing it higher I

looked in my trusty PDR to see what

> he was doing since the panic attacks weren't a problem anymore. To make a

short story long, I had mentioned in

> passing that I had some obsessive-compulsive tendencies (that's what he was

targeting) but they weren't a problem if

> I'd force myself not to give in to them. I'd be unhappy for a day or so then

they'd be gone for a while and they

> only reappeared when I was under a lot of stress. He was convinced that it

was a terrible problem and I was

> scarring myself. He ignored the fact that every time I increased the Zoloft,

the rash would get even more severe.

> Then he'd increase my dose to combat the " obsessive-compulsive

self-mutilation " and then my rash and scarring would

> get even worse, and so on............. I refused to go any higher than 100

and about 2 weeks before I had to

> defend my thesis, I told him I had to drop down since I was so stupid and

scattered I couldn't even think let alone

> argue with molecular biology professors. He dropped me down to 75 mg and

right after my thesis defense was done I

> weaned myself off of Zoloft (I was on it for a total of 6 months). I tapered

down from 75 to 50 to 25 to 12.5 and

> then off (staying on each dose for one week). I still had weird shock-like

feelings in my noggin and would lose my

> balance and fall over. But it didn't seem to be as severe or last as long as

the poor people that went off

> cold-turkey.

>

> In this GPs defense, he was really trying to help me in the only way he knew

how. But when I brought up T3 for hypo

> patients he didn't feel comfortable prescribing it for me and referred me to

the super endo I have now. This endo

> ordered lots of expensive tests that the GP would run without question since

the endo wasn't on my insurance. This

> GP now uses T3 instead of Zoloft on all his hypo patients that have low to

low-normal free and total T3 values. He

> checks that before he'll put patients on SSRIs. And if the T3 works, that's

all he does (he told me the other day

> that he's had remarkable success).

>

> You all have to remember that my thyroid gland is gone so I don't know how

this would apply to you since

> you're on ATDs. But it's just something to keep in mind if you ever start

having problems and maybe you could ask

> your doctor about. It's a moot point really since you're happy with the meds

you're on. For me, I was allergic to

> Zoloft since the rash disappeared after I went off of it (no more

" self-mutilation " either).

>

> Take care,

>

> Iannuzzi wrote:

>

> > Hi , I don't have any real adverse problems with the Zoloft. When I

> > first started it , I noticed I became a little numbed at times. I cried

> > less, felt a little too laid back, less interested in relations with hubby,

> > but after a few months they subsided. I can tell you that when I tried to

> > go off of the Zoloft, my fibro started to flare and I noticed the start of

> > panic attacks. I was only off the meds about 2 weeks when the symptoms

> > started again. I opted to go back on again. I am only on 50 mg. though. I

> > need the Flexoril at night to help with sleep and muscle tension. If I

> > forget to take it I am so stiff and achy in my back. When I was hypo I had

> > worse panic than when I was hyper. When I am hyper I am more anxious. With

> > the panic attacks, they come on more suddenly. I will be resting quietly,

> > have normal heart rate of 70-80's and out of no where get short of breath,

> > palpitations, feelings of death. Then they would subside. With hyper I

> > just felt anxious all the time, and heart rate would not jump up and down so

> > quickly, more like constant tachy. Like I said before once my thyroid

> > levels started to go up either on my own or with meds my symptoms started to

> > subside. When my numbers are right for me, not the docs, I feel completely

> > normal and asymptomatic for the hyperT they say I should have. I am glad my

> > gp thinks that the symptoms are thyroid related. Too many endos try to tell

> > you you have panic disorder, fibromyalgia, arthritis, weight problems,

> > everything but the thryoid. It amazing to think these guys specialized in

> > endocrinology but can't make simple correlations between symptoms and

> > levels. Maybe because I am a nurse and trained to listen to my patients

> > rather than just their lab values I am more intuned to what the body is

> > saying. I would say that 90% of the time a patient says they think

> > something is going on in their bodies they are right. If only the endos

> > would believe us 90% of the time. Oh well, the best we can do is keep track

> > of our bodies and make sure our docs are responding in our best interests.

> > Quite a task sometimes though. I.

> > Re: Autoimmune...

> >

> > > Hi All-

> > >

> > > My 60 year old father is just now getting some of the problems that I've

> > lived with since my late 20s. He thinks

> > > they're terrible. And no doubt they are. Why can't they figure out what

> > they're doing to people? I act so much

> > > older than anyone else my age and I'm only 37. And no one else in my

> > family is like this (but they have thyroids).

> > >

> > > ? Do you have any reactions to Zoloft? I was probably unusual but I

> > had a bleeding rash on it, exacerbated

> > > IBS (if that's possible) and I was violent while on it. My doctor kept

> > insisting that I increase it (he was

> > > convinced I was obsessive-compulsive) which worsened the rash and the

> > temper. I weaned myself off of it over 3

> > > weeks and the rash went away but it left horrible scars that haven't gone

> > away over the 3 years I've been off of it.

> > >

> > > By the way, I haven't had panic or anxiety attacks since I've been on T3

> > (which is why I went on Zoloft) and I can

> > > sleep all night (before I'd wake up every 1/2 hour or so). I also no

> > longer have the obsessive-compulsive

> > > tendencies that I had before. I did not have any obsessive-compulsive

> > tendencies before I had RAI.

> > >

> > > All this brain fidgeting makes me nervous since they can't really test the

> > long-term results of these medications.

> > > Not a popular thing to say since SSRIs are the new fad drugs of the times.

> > But like most drugs they deal with

> > > symptoms and don't get to the real problem.

> > >

> > > I have no thyroid (and thyroid hormone affects every single cell in your

> > body) and that will be the first place I

> > > look if I have problems from now on. Too many of the problems that they

> > said weren't thyroid related were. So now

> > > I don't trust any of the information I get. Hope they figure this out

> > soon.

> > >

> > > Take care,

> > >

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

> > > High rates giving you headaches? The 0% APR Introductory Rate from

> > > Capital One. 9.9% Fixed thereafter!

> > > http://click./1/3010/3/_/585824/_/955515145/

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

> > >

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

> > > The Graves' list is intended for informational purposes only and is not

> > intended to replace expert medical care.

> > > Please consult your doctor before changing or trying new treatments.

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

> > >

> >

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

> > Get your money connected @ OnMoney.com - the first Web site that lets

> > you see and manage all of your finances all in one place.

> > http://click./1/3012/3/_/585824/_/955548647/

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

> >

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

> > The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> > Please consult your doctor before changing or trying new treatments.

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

>

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

> 25% Off All Prints!

> Buy one today at Corbis.com

> http://click./1/3357/3/_/585824/_/955569385/

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

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

April 12, 2000