Update

[Guest guest]

Helen,

Your email brought a smile to my face! I am glad to hear that Nick is doing

better! I just realized that it's been exactly 2 years since my daughter has

been dx. too. I look at where we were and where we are now on this journey and

think wow, God really does mean it when He promises that He won't give us more

than we can handle. We've made it this far! Gabi is doing so much better too.

We go to the Rhuemy next week, and I just know it's going to go well!

Summer-Gabi 7 poly

hburger64 <hburger64@...> wrote:

Hi All,

Thought I would drop a quick note to give a brief undate on little

Nick...

He is doing AMAZING!!!! we are now down to 2mg of prednisone daily

with NO ill effects. Hes full of energy and has even started to stay

after school for extended day ( extra help) hes been too tired for

the last 2 years. he did drop out of Tae Kwon Do again as it was too

much though.

Nick is in the middle of a double blind study to see if he has ADHD.

We have 2 medications marked Drug A and Drug B... he takes one for 2

weeks and then the other one for 2 weeks. One of the drugs is ADHD

medication and the other a placebo, but we dont know which is which.

I have never thought hes ADHD ( I already have 2 kids that are) but

its a big issue in school. Personally, I just think the teacher is

at fault for not making school interesting enough. Im hoping that

this study will prove to the school that hes NOT ADHD and we can

move on from there. The problem with a lot of teachers these days,

if they think a child is ADHD they cant seem to move past it until

its been dealt with.

Can you beleive also, that Nick is up before me in the mornings!!!

this is the same kid that needed 12-15 hours sleep a night and was

always tired and falling to sleep at school. IM so happy that hes

feeling soo good. he is still having a little breakthough pain in

his wrists, ankles and knees, but its very short lived and not

bothering him to much. Once the ADHD study is over i will continue

to taper the pred. I really dont want to mess with it while we are

doing the study because if he flares it will screw everything up.

So, just wanted to share my joy in having a happy, smiling, funny

little Nick around here!! Its hard for me to beleive that this all

start 2 years ago. This time 2 years ago he was not Dx yet and was

soo sick. Such dark days!.

hugs Helen and (7 1/2 systemic)

---------------------------------

[Guest guest]

Helen:

I don't want to be a downer, but you know if he is on the REAL add meds

right now, he needs less sleep because of them..or at least Rob does..?

Anyway, I am so glad that he is feeling so much better, and that the pred

wean is going so well!!

That is such awesome news!!

!

and Rob 15 Spondy

On Wed, 20 Apr 2005 16:44:32 -0000 " hburger64 " <hburger64@...>

writes:

Hi All,

Thought I would drop a quick note to give a brief undate on little

Nick...

He is doing AMAZING!!!! we are now down to 2mg of prednisone daily

with NO ill effects. Hes full of energy and has even started to stay

after school for extended day ( extra help) hes been too tired for

the last 2 years. he did drop out of Tae Kwon Do again as it was too

much though.

Nick is in the middle of a double blind study to see if he has ADHD.

We have 2 medications marked Drug A and Drug B... he takes one for 2

weeks and then the other one for 2 weeks. One of the drugs is ADHD

medication and the other a placebo, but we dont know which is which.

I have never thought hes ADHD ( I already have 2 kids that are) but

its a big issue in school. Personally, I just think the teacher is

at fault for not making school interesting enough. Im hoping that

this study will prove to the school that hes NOT ADHD and we can

move on from there. The problem with a lot of teachers these days,

if they think a child is ADHD they cant seem to move past it until

its been dealt with.

Can you beleive also, that Nick is up before me in the mornings!!!

this is the same kid that needed 12-15 hours sleep a night and was

always tired and falling to sleep at school. IM so happy that hes

feeling soo good. he is still having a little breakthough pain in

his wrists, ankles and knees, but its very short lived and not

bothering him to much. Once the ADHD study is over i will continue

to taper the pred. I really dont want to mess with it while we are

doing the study because if he flares it will screw everything up.

So, just wanted to share my joy in having a happy, smiling, funny

little Nick around here!! Its hard for me to beleive that this all

start 2 years ago. This time 2 years ago he was not Dx yet and was

soo sick. Such dark days!.

hugs Helen and (7 1/2 systemic)

[Guest guest]

-...

YOu could never be a downer!! ) you always have such a positive

outlook on life.

I never thought of that!! but you are right, REAL adhd medication

will cut down his sleep time and that has definately been the case

this week. But i have not noticed anything different in his behavior

except that hes ULTRA crabby when he walks in from school. Like

NOW!!! yikes, he just marched off and slamed his door when i tried

to talk to him about AJAO. " of course I wanta go, DUH!! " - was his

reply when i asked him. Wonder how its going at school. Ive never

noticed over active behaviour, but then again I see him at the end

of the day when hes quiet and usually tired from the day at school.

I dont see him much on weekends as Im working. One of my older boys

has really HYPER ADHD, he falls down the stairs each morning

bouncing off the walls. Until that pill starts working he drives me

crazy, he just just soo hard on the house. if Nick does have ADHD

its no where near as chronic as Zachs is.

Thanks for the heads up on the sleep patterns...

HUgs Helen and (7 1/2 systemic)

- In , H Schulz <snooksmama@j...>

wrote:

> Helen:

> I don't want to be a downer, but you know if he is on the REAL add

meds

> right now, he needs less sleep because of them..or at least Rob

does..?

> Anyway, I am so glad that he is feeling so much better, and that

the pred

> wean is going so well!!

> That is such awesome news!!

> !

> and Rob 15 Spondy

>

> On Wed, 20 Apr 2005 16:44:32 -0000 " hburger64 " <hburger64@h...>

> writes:

>

> Hi All,

>

> Thought I would drop a quick note to give a brief undate on little

> Nick...

>

> He is doing AMAZING!!!! we are now down to 2mg of prednisone daily

> with NO ill effects. Hes full of energy and has even started to

stay

> after school for extended day ( extra help) hes been too tired for

> the last 2 years. he did drop out of Tae Kwon Do again as it was

too

> much though.

>

> Nick is in the middle of a double blind study to see if he has

ADHD.

> We have 2 medications marked Drug A and Drug B... he takes one for

2

> weeks and then the other one for 2 weeks. One of the drugs is ADHD

> medication and the other a placebo, but we dont know which is

which.

> I have never thought hes ADHD ( I already have 2 kids that are)

but

> its a big issue in school. Personally, I just think the teacher is

> at fault for not making school interesting enough. Im hoping that

> this study will prove to the school that hes NOT ADHD and we can

> move on from there. The problem with a lot of teachers these days,

> if they think a child is ADHD they cant seem to move past it until

> its been dealt with.

>

> Can you beleive also, that Nick is up before me in the mornings!!!

> this is the same kid that needed 12-15 hours sleep a night and was

> always tired and falling to sleep at school. IM so happy that hes

> feeling soo good. he is still having a little breakthough pain in

> his wrists, ankles and knees, but its very short lived and not

> bothering him to much. Once the ADHD study is over i will continue

> to taper the pred. I really dont want to mess with it while we are

> doing the study because if he flares it will screw everything up.

>

> So, just wanted to share my joy in having a happy, smiling, funny

> little Nick around here!! Its hard for me to beleive that this all

> start 2 years ago. This time 2 years ago he was not Dx yet and was

> soo sick. Such dark days!.

>

> hugs Helen and (7 1/2 systemic)

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Helen,

I, too, have missed responding to many posts because of the volume,

but so glad to hear of Nick's great progress. I don't get why

another study is going on with his pred taper about ADHD and I

probably missed something. Sorry. I will mention that when Hunter

was 5, still undiagnosed and going through huge fatigue, his

teachers thought he had ADD because he was so calm and spacy. Well

that proved to be wrong. Don't let the teachers drive your agenda

and health direction.

Stacia and Hunter 9 systemic, iritis

>

> Hi All,

>

> Thought I would drop a quick note to give a brief undate on little

> Nick...

>

> He is doing AMAZING!!!! we are now down to 2mg of prednisone daily

> with NO ill effects. Hes full of energy and has even started to

stay

> after school for extended day ( extra help) hes been too tired for

> the last 2 years. he did drop out of Tae Kwon Do again as it was

too

> much though.

>

> Nick is in the middle of a double blind study to see if he has

ADHD.

> We have 2 medications marked Drug A and Drug B... he takes one for

2

> weeks and then the other one for 2 weeks. One of the drugs is ADHD

> medication and the other a placebo, but we dont know which is

which.

> I have never thought hes ADHD ( I already have 2 kids that are)

but

> its a big issue in school. Personally, I just think the teacher is

> at fault for not making school interesting enough. Im hoping that

> this study will prove to the school that hes NOT ADHD and we can

> move on from there. The problem with a lot of teachers these days,

> if they think a child is ADHD they cant seem to move past it until

> its been dealt with.

>

> Can you beleive also, that Nick is up before me in the mornings!!!

> this is the same kid that needed 12-15 hours sleep a night and was

> always tired and falling to sleep at school. IM so happy that hes

> feeling soo good. he is still having a little breakthough pain in

> his wrists, ankles and knees, but its very short lived and not

> bothering him to much. Once the ADHD study is over i will continue

> to taper the pred. I really dont want to mess with it while we are

> doing the study because if he flares it will screw everything up.

>

> So, just wanted to share my joy in having a happy, smiling, funny

> little Nick around here!! Its hard for me to beleive that this all

> start 2 years ago. This time 2 years ago he was not Dx yet and was

> soo sick. Such dark days!.

>

> hugs Helen and (7 1/2 systemic)

[Guest guest]

I am constantly lightheaded, but I also have an atrioventricular block and tachybrady syndrome not to mention a small hole in my heart that lowers the amount of blood that actually gets oxygenated so the combination of the heart problems tend to cause that. Stress can also cause light headedness..

(JAS, 20)

[Guest guest]

It seems to simple and stupid to think of, but how much do you drink

daily? I dehydrate very easily and one of the first symptoms I get is

dizzy spells. To know how much you should drink, divide your weight

in pounds by half, that is how many ounces you should drink daily.

Keep in mind too that many soft drinks contain salt and actually

increase how much you should drink.

> Ok, the reports are coming in and so far so good.

> From the hemotologist: labs were perfect. Red and white counts were

super so

> no worries there.

> From the OB/ GYN: A yearly exam will occur soon and doc feels

the " problem " I

> am having is normal in alot of women so dont worry. May I also add,

I have

> herad,

> well, you are going to be 40 next month so things will be

happening " . Yikes!

> What does that mean???LOL

> I am still awaiting word from the internist and what I am going to

do in

> terms of the colonoscopy?? I think docs want to try stool

softener/fiber ritual

> first along with fecal occult test..who knows?????

> Does or has anyone experienced daily bouts of lightheadedness? I

have been

> having a lil bit still and was wondering if I should call docs

back?? Its not

> bad and does not interfere with activities. Almost as if I had an

inner ear

> infection, which I dont think I do...lol

> geez, seems it is always something anymore...maybe it is 40!!!!

> LOL, hugs and smiles!

> Donna

[Guest guest]

donna-maybe it's your sinuses?have you ever been sensitive to

changes in the barometer/or things " blooming " at cetain times of the

year(pollen)?that's what gets me feeling woozy & i take a non-sleepy

decongestant & it usually helps,at least for me...

> Ok, the reports are coming in and so far so good.

> From the hemotologist: labs were perfect. Red and white counts

were super so

> no worries there.

> From the OB/ GYN: A yearly exam will occur soon and doc feels

the " problem " I

> am having is normal in alot of women so dont worry. May I also

add, I have

> herad,

> well, you are going to be 40 next month so things will be

happening " . Yikes!

> What does that mean???LOL

> I am still awaiting word from the internist and what I am going to

do in

> terms of the colonoscopy?? I think docs want to try stool

softener/fiber ritual

> first along with fecal occult test..who knows?????

> Does or has anyone experienced daily bouts of lightheadedness? I

have been

> having a lil bit still and was wondering if I should call docs

back?? Its not

> bad and does not interfere with activities. Almost as if I had an

inner ear

> infection, which I dont think I do...lol

> geez, seems it is always something anymore...maybe it is 40!!!!

> LOL, hugs and smiles!

> Donna

[Guest guest]

>

> Heard from Cleveland Clinic today.they are sending her home

tomorrow., Saturday., where she will await her new liver. She has

reached her needed MELD of 21. So excited...... They said that

within 30 days she should have her new liver. I am just so happy and

excited and yes a bit nervous...but mostly happy. Blessings,

Joanne PS

Please don't call her as she is too ill for that right now. Feel free

to email her.and when she feels good enough she will be able to read

them.

>

>

> Jj Cathcart

> jjcathcart@e...

> EarthLink Revolves Around You.

>

I hope that all goes well and in swift haste. Tori

[Guest guest]

I can only give you my own personal opinion. If I had my choice, I would choose

surgery. Why? Because of the very small exposure to radiation. Why expose

yourself unnecessarily? I found some stats somewhere on the web that showed a

slight increase in possible cancer as a result of RAI.

I did take RAI because I was in a terrible rush to get it over with and get on

with my life. I didn't understand that my disease was life altering and things

were never going to be the same again for me. If I had it to do over again, I

would first try surpressing the thyroid with anti thyroid medication, then

replacing the hormone (known as 'block and replace'), then surgery would be my

second choice..

Good luck

Kate

update

Hello this is just an update on my sister that has hyperthyroidism. I

recently posted about her having to for the RAI. Well it has been a

few weeks now since i updated. She went to the doc today and found out

that she is now hypo. Since last week her doctor gave her 2 choices to

either get the gland removed with surgery or have the RAI to kill it.

I have told her what i know about the downs of the RAI and she had

talked to her doctor and he is still trying to convince her that that

is the best way to go. She is in a state of confusion not knowing if

she should trust the pill or do the surgery. And i dont think i know

enough about either to help her make a desision. Now that she is hypo

i dont know if it is worse or better to take the pill does anyone know

what she should decide?

thanks

kim

[Guest guest]

My understanding is that taking RAI will eventually make a person hypothyroid.

And therefore dependent on thyroid hormone replacement for life. If your sis is

already hypothyroid then I don't understand why RAI would be necessary at all.

And what made her hypoT ? If it was antithyroid drugs then she may be on too

high of a dose. I believe I am as confused as your sister may be.

I would get a second opinion. You might check out the American Thyroid

Association web site if you are in the U.S. They have a list of " top thyroid

drs " . Wherever you are, make sure she sees a dr that has alot of experience

with thyroid treatments. And hyperthyroid if you can find one (hyperT drs are

harder to come by). I am hyperthyroid myself, diagnosed last November. What I

am finding out is that most drs are more familiar with hypOthyroid. And believe

that your health is better off if you are on the low end. And they think

hypothyroid is easier to treat in the long term. This is not always the case.

In my research, I have found some interesting things.

1) HyperT can be controlled with anti-thyroid drugs (ATDs) taken daily. (Aslo,

changing diet and lifestyle habits can make some difference.)

2) If your hyperT is caused by an autoimmune disorder, it can still be treated

with ATDs.

3) Long term use of ATDs is not life threatening. You dr will need to watch you

closely for some rare side effects. If your dr does his job well there

shouldn't be a problem. (I have read where a dr intentionally manipulated ATDs

to convince the patient they needed the RAI.)

4) There are two different ATDs. So if you have trouble with one you can be

switched to the other. And there are different brands of each ATD. So you

could also switch brands of the same ATD if you have trouble. Basically there

are many options.

5) HypER-T can go into " remission " where the thyroid again produces within

" normal " ranges. Chances for remission can depend on what causes your hyperT

(heredity, diet, stress, lifestyle, etc.), and how out of control your levels

fluctuate. HypO-T will NOT go into remission.

6) One permanent fix for HyperT, is to have surgery to remove the thyroid gland

(partially or entirely). This will make you permanently hypothyroid and you

will need thyroid hormone replacement daily for life. This is an invasive

procedure. Only trust a highly experienced surgeon with lots of thyroid

surgeries under his belt.

7) The other permanent fix for hyperT, is to have RAI. This is a non-invasive

procedure. This will " eventually " make you permanently hypothyroid and you will

need thyroid hormone replacement daily for life. In the meantime, until the

thyroid completely dies, your thryoid could have sudden bursts of thyroid

production (hyperT phases) followed by a drop in production and a return to

hypoT. I understand this could go on for years until the thyroid is completely

killed off. Also, you have consumed a radioactive pill. Radioactivity is known

to cause cancer. This radioactivity will begin to attack other organs once it

is done with your thyroid. Only take advice from a person who is a least six

years post-RAI treatment.

I am sure I don't know everything there is to know. So you can take this info

with a grain of salt if you want to.

You asked what I would do. Based on what I have learned(listed in a nutshell

above). First, get a second opinion. And a third, and a fourth opinion. As

many as necessary to feel that you are making a truly informed decision. If

doing away with the thyroid is an absolute must, then I would do surgery. I

would only use RAI if I had thyroid cancer. But they usually remove the thyroid

surgically then follow up with RAI. In that case you have to do what you have

to do.

Also, some people have found help using alternative medicine/therapies. You

have to find what works best for you. In this case, what works for your sister.

I hope this helps. You might try printing this and other sources out for your

sister (if you're not already doing that). That way maybe she can see where you

are getting your info.

Best Wishes as you go through this with her. Keep us posted and remember we are

here for each other.

Kim M.

[Guest guest]

In a message dated 1/16/2006 4:36:04 PM Eastern Standard Time, kkmwn@...

writes:

First, get a second opinion. And a third, and a fourth opinion. As many as

necessary to feel that you are making a truly informed decision.

Amen to that. Also, please go to our sister site, iThyroid.com, to get the

latest info.

Best,

AntJoan

[Guest guest]

>

> My understanding is that taking RAI will eventually make a person

hypothyroid. And therefore dependent on thyroid hormone replacement

for life. If your sis is already hypothyroid then I don't

understand why RAI would be necessary at all. And what made her

hypoT ? If it was antithyroid drugs then she may be on too high of

a dose. I believe I am as confused as your sister may be.

>

> I would get a second opinion. You might check out the American

Thyroid Association web site if you are in the U.S. They have a

list of " top thyroid drs " . Wherever you are, make sure she sees a

dr that has alot of experience with thyroid treatments. And

hyperthyroid if you can find one (hyperT drs are harder to come

by). I am hyperthyroid myself, diagnosed last November. What I am

finding out is that most drs are more familiar with hypOthyroid.

And believe that your health is better off if you are on the low

end. And they think hypothyroid is easier to treat in the long

term. This is not always the case.

>

> In my research, I have found some interesting things.

>

> 1) HyperT can be controlled with anti-thyroid drugs (ATDs) taken

daily. (Aslo, changing diet and lifestyle habits can make some

difference.)

>

> 2) If your hyperT is caused by an autoimmune disorder, it can

still be treated with ATDs.

>

> 3) Long term use of ATDs is not life threatening. You dr will

need to watch you closely for some rare side effects. If your dr

does his job well there shouldn't be a problem. (I have read where

a dr intentionally manipulated ATDs to convince the patient they

needed the RAI.)

>

> 4) There are two different ATDs. So if you have trouble with one

you can be switched to the other. And there are different brands of

each ATD. So you could also switch brands of the same ATD if you

have trouble. Basically there are many options.

>

> 5) HypER-T can go into " remission " where the thyroid again

produces within " normal " ranges. Chances for remission can depend

on what causes your hyperT (heredity, diet, stress, lifestyle,

etc.), and how out of control your levels fluctuate. HypO-T will

NOT go into remission.

>

> 6) One permanent fix for HyperT, is to have surgery to remove the

thyroid gland (partially or entirely). This will make you

permanently hypothyroid and you will need thyroid hormone

replacement daily for life. This is an invasive procedure. Only

trust a highly experienced surgeon with lots of thyroid surgeries

under his belt.

>

> 7) The other permanent fix for hyperT, is to have RAI. This is a

non-invasive procedure. This will " eventually " make you permanently

hypothyroid and you will need thyroid hormone replacement daily for

life. In the meantime, until the thyroid completely dies, your

thryoid could have sudden bursts of thyroid production (hyperT

phases) followed by a drop in production and a return to hypoT. I

understand this could go on for years until the thyroid is

completely killed off. Also, you have consumed a radioactive pill.

Radioactivity is known to cause cancer. This radioactivity will

begin to attack other organs once it is done with your thyroid.

Only take advice from a person who is a least six years post-RAI

treatment.

>

> I am sure I don't know everything there is to know. So you can

take this info with a grain of salt if you want to.

>

> You asked what I would do. Based on what I have learned(listed in

a nutshell above). First, get a second opinion. And a third, and a

fourth opinion. As many as necessary to feel that you are making a

truly informed decision. If doing away with the thyroid is an

absolute must, then I would do surgery. I would only use RAI if I

had thyroid cancer. But they usually remove the thyroid surgically

then follow up with RAI. In that case you have to do what you have

to do.

>

> Also, some people have found help using alternative

medicine/therapies. You have to find what works best for you. In

this case, what works for your sister.

>

> I hope this helps. You might try printing this and other sources

out for your sister (if you're not already doing that). That way

maybe she can see where you are getting your info.

>

> Best Wishes as you go through this with her. Keep us posted and

remember we are here for each other.

> Kim M.

Well im sure that the high doses of meds are what caused her to go

hypo she was 8 tapazole a day and is now on 4...when she first found

out that she had hyper she was givin a small dose of RAI so that may

have caused it to go hypo also. Her doc has given her a couple weeks

to decide what she wants to do. he gave her the option for the

surgery or the RAI to kill the thyroid. He told her the high risks

of the surgery and that risks from the RAI and basically told her

that the RAI is the best way to go. I am printing things out what

people have responded her and she has been bringing it to her doc.

As any doc he didnt really seemed concerned. She was told that the

specialist she is seeing is one of the best here in Canada. So as of

now she has just been thinking and trying to make a choice. He also

told her that the RAI does not attack anything in your body but the

gland and will be out of her system within 24 hours and will take up

to 2 to 3 weeks for it to kill the thyroid. I have researched for

months about this disease and come across so many times that RAI is

not the way most people would go with this disease. My sister has

one of the worst cases. The worst her doc has seen so maybe in her

cause the RAI is a must that is why he is pushing so hard. I am sure

this disease attacks everyone differantly. So with that i will keep

you all updated on the progress of my sis. Thank you for you replys

Kim

>

>

>

>

[Guest guest]

>

> In a message dated 1/16/2006 4:36:04 PM Eastern Standard Time,

kkmwn@a...

> writes:

> First, get a second opinion. And a third, and a fourth opinion.

As many as

> necessary to feel that you are making a truly informed decision.

>

>

> Amen to that. Also, please go to our sister site, iThyroid.com,

to get the

> latest info.

>

> Best,

> AntJoan

I have been to that site numerous times and do know about the risks

of RAI and so does my sister that is why the desision is twice as

difficult to make....thank you anyways

Kim

>

>

>

[Guest guest]

It looks like what you are saying is she is extremely hypert without a very

high dose of Tapazole Without the 4 times daily dose of Tap. she would be

suffering extreme hypert symptoms. But with that high dose she is becoming

hypo.

I don't know if it would be worth it but could you post your lab vlaues. I'

m guessing from all the meds. it will show that she is hypo.

Hopefully her dr. has her on a beta blocker. And how long has she been on

the medication? I would definitely get more opinions. But unofrtunately there

are few endo. that will allow a patient to just stay on Tapazole.

Sandy

[Guest guest]

In a message dated 1/18/2006 6:04:47 AM Eastern Standard Time,

SandyC7606@... writes:

But unofrtunately there

are few endo. that will allow a patient to just stay on Tapazole.

It's true that the endos often don't want to keep patients on Tap, but we

must insist on the treatment we want. There is no reason someone can't stay on

Tap for years and years. Through this board I've heard of people on it for

more than 20 years, with no ill effects. If you can't convice your endo to

continue it, perhaps your PCP can prescribe it. If not, hopefully you can find

another endo who will do this. The more we all demand it, and maybe educate

them

by bringing in articles or other research, hopefully the more the endos will

start to learn about Graves and other thyroid conditions.

AntJoan

[Guest guest]

I was wondering to the original poster about your sister, if you could get

all her thyroid test results from the first one and post them here. At this

point her values will show that she is hypo but I'd like to see how hyper she

was

at the beginning. I'm guessing without the meds. she would go back to being

very hyper.

Does she or did she suffer extreme hyper symptoms?

And to Ant Joan I'm one of those that has been on Tapazole long term with no

side effects that I know of so far. I've been on and off it for a decade and

for the last three years on it consistently.

Sandy

[Guest guest]

>

> It looks like what you are saying is she is extremely hypert

without a very

> high dose of Tapazole Without the 4 times daily dose of Tap. she

would be

> suffering extreme hypert symptoms. But with that high dose she is

becoming hypo.

>

>

> I don't know if it would be worth it but could you post your lab

vlaues. I'

> m guessing from all the meds. it will show that she is hypo.

>

> Hopefully her dr. has her on a beta blocker. And how long has she

been on

> the medication? I would definitely get more opinions. But

unofrtunately there

> are few endo. that will allow a patient to just stay on Tapazole.

>

> Sandy

>

She was extrememly hyper..and that is why they had to up her meds

her heart rate was going way to fast at one point it was 153 she was

on heart pills but it has regulated and is not taking them no more.

I am not sure what the numbers mean and she isnt really sure

either..she was just diagnosed about 3 months ago..and that is how

long she has been on the tap. A score that she was givin was

a .001..for something..i dont know she is going to ask her doc for

all the scores and ask him what they mean..she is learning more

about it everyday ..for someone that has no idea what the disease is

its hard to understand..she has to keep asking question like i told

her.

Kim

>

>

[Guest guest]

>

> I was wondering to the original poster about your sister, if you

could get

> all her thyroid test results from the first one and post them

here. At this

> point her values will show that she is hypo but I'd like to see

how hyper she was

> at the beginning. I'm guessing without the meds. she would go

back to being

> very hyper.

>

> Does she or did she suffer extreme hyper symptoms?

>

> And to Ant Joan I'm one of those that has been on Tapazole long

term with no

> side effects that I know of so far. I've been on and off it for a

decade and

> for the last three years on it consistently.

>

> Sandy

>

I am going to find out what her results were and yes she was

extrememly hyper at the begining until she started the meds. She has

very bad tremors and she also had a bit of the bulging eyes..she was

pretty much like a zombie at one point before christmas she was not

alot to get off the couch to use the bathroom because of her heart

racing so fast..he doc told her she was constantly running a sprint

while sitting there that is why she lost so much was in so little

time. and her gland was also 3 times the size it should be and you

could see it when she lifted her neck. This all hit her in a bang

with in a month. She was fine one day and then the next she started

shaking tremendously and then within a week she was a very sick

girl. So i mean in a round or 3 months she has been through alot and

is having a hard time obsorbing it all.

I will find out what her scores are and let you all know.

Kim

>

>

[Guest guest]

The .001 is most likely her TSH value. That tends to be the value that dr.

use most in diagnosing and dosing. I think the normal range now is .05 - 3.0.

The lower the value, like .001, the more hyper.

Sandy

[Guest guest]

Ok it looks like for some reason her thyroid was tested in the past before

all this started? If the 1.27 was her TSH before all this, it was just about

perfect. Hopefully you will find out what these values represent. TSH, T3 and

T4 in various forms are the thyroid values they test.

Sandy

[Guest guest]

>

> The .001 is most likely her TSH value. That tends to be the value

that dr.

> use most in diagnosing and dosing. I think the normal range now

is .05 - 3.0.

> The lower the value, like .001, the more hyper.

>

> Sandy

yeah i think your right he told her that her score for that was so low

that the machines would not read it..it is something to do with the

signal from the brain to the tyroid. im not sure really she told me

that he told her that 1.27 was what she scored before she had hyper.

And that her thyroid was 98% what ever that means. She is gonna find

out what it all means her next app.

>

>

>

[Guest guest]

Hi Carol...

> I just wanted Racine and others who posted in response to me

> recently to know that I called UCSF's 800# today and they said it was

> the " fine institute " ? (not sure of spelling) for spine & neorologic

> disorders.

Could it have been " Spine Institute? "

> The guy said, no, you don't need a referral, but they do

> need to have a " packet " of information sent to them (or faxed) with

> results of tests like CT scans, X-rays, that sort of thing and

> doctors' notes and then a demographic page about myself. Then they

> decide if they're going to see you. I am going to start to assemble

> doctor's notes and files, but I will see how much luck I have with

> that. We are allowed as patients to have copies of our files, and X-

> rays, etc, right? Part of HIPAA and all that, right?

Yes

> I assume I'll

> probably have to pay for it. How much detail does UCSF need? Does a

> person need a photo of themself to prove they have flatback, or what?

No. They'll probably tell you what you need, but I'm guessing they'll

want x-rays, CT or MRI, and a doctor's report.

> My problem is that I called Children's Hospital of Oakland a couple

> of weeks ago and found out they destroyed all my surgery records and

> X-rays, etc. a long time ago. They said they only keep medical

> records 20 years, and if I had known that, I would have asked for

> them long ago. Now I have no pre-surgery info. or X-rays. I don't

> even remember how bad my double curve was. I was only 16, so don't

> remember a lot. It probably was close to 90%, but not sure.

The records from your original surgery and before that are probably

not of all that much interest to a surgeon.

> I'm now

> trying to get medical records from my family doctor from the 1980's,

> because that's when I started having the lower back pain and pain

> down my left leg around 1985-86. " Radiculopathy " he called it. I

> don't think he ever took X-rays, though. I have some X-rays here at

> the local hospital taken around 8 yrs. ago or so, and the ones taken

> last year at the orthopedist (the first ortho I saw since my surgery

> 32 yrs. ago) I've been in ortho la-la land the past 30 years!!! I

> just know that I have gotten some peculiar looks from X-rays techs

> over the years and also last year when the dr. posted my X-ray in the

> light box right in front of some other patients out in the hall!!

> They sure stared at it. Made me feel like a freak.

I'm sort of proud of my x-rays, but I understand about you wanting

your privacy. I believe that putting x-rays up in plain view of other

patients is actually a HIPAA violation.

> On a separate note, I was reading some of the posts today, and read

> one from someone about " implants " and the dangers from infections.

> Well, I've never been clearly told about that one way or another.

> I've never taken prophylactic antibiotics for any dental procedures

> or anything else. No one seemed to think it was necessary. I did,

> however, have a raging staph infection from a biopsy (not spine

> related) about 4 years ago that required me to go to the hospital and

> have intraveneous antibiotics because it had spread to my blood

> stream. Would something like that harm my harrington rod and fusion??

> Does anyone have any idea??? I seem to be fine now. (No thanks to the

> original surgeon) My family doctor realized the urgency and

> hospitalized me. I could have easily died.

>

I think the only thing we need to worry about in terms of infection,

is if the infection settles in under the rods. Once there, it can be

next to impossible to defeat. If your blood is testing normally, you

probably don't need to fret.

Again, let me know if you have any trouble getting an appointment once

you've submitted what you have.

Regards,

[Guest guest]

Hi Carol, I to am attemtping to get an appointment at UCSF, with Dr.

Hu. Am just waiting for my insurance to give approval. As soon as I

get that (they Wouldn't turn me down would they??} I will contact

them. Let me know how it goes getting the appt. I had the double

curve too. Don't remember exact #s, do know top was over 85 bottom

over 45. Am fused from T5 to L5. And have been tilted since the

surgery in 1977.

I'm presuming your in the bay area too? I am actually a little

outside it, in Fairfield.

Its nice there's someone else in this area, looking to go to the same

hosp. I would like to hear from you.

, " Carol " <dcvaughan@...> wrote:

>

> I just wanted Racine and others who posted in response to me

> recently to know that I called UCSF's 800# today and they said it

was

> the " fine institute " ? (not sure of spelling) for spine & neorologic

> disorders. The guy said, no, you don't need a referral, but they do

> need to have a " packet " of information sent to them (or faxed) with

> results of tests like CT scans, X-rays, that sort of thing and

> doctors' notes and then a demographic page about myself. Then they

> decide if they're going to see you. I am going to start to assemble

> doctor's notes and files, but I will see how much luck I have with

> that. We are allowed as patients to have copies of our files, and X-

> rays, etc, right? Part of HIPAA and all that, right? I assume I'll

> probably have to pay for it. How much detail does UCSF need? Does a

> person need a photo of themself to prove they have flatback, or

what?

> My problem is that I called Children's Hospital of Oakland a couple

> of weeks ago and found out they destroyed all my surgery records

and

> X-rays, etc. a long time ago. They said they only keep medical

> records 20 years, and if I had known that, I would have asked for

> them long ago. Now I have no pre-surgery info. or X-rays. I don't

> even remember how bad my double curve was. I was only 16, so don't

> remember a lot. It probably was close to 90%, but not sure. I'm now

> trying to get medical records from my family doctor from the

1980's,

> because that's when I started having the lower back pain and pain

> down my left leg around 1985-86. " Radiculopathy " he called it. I

> don't think he ever took X-rays, though. I have some X-rays here at

> the local hospital taken around 8 yrs. ago or so, and the ones

taken

> last year at the orthopedist (the first ortho I saw since my

surgery

> 32 yrs. ago) I've been in ortho la-la land the past 30 years!!! I

> just know that I have gotten some peculiar looks from X-rays techs

> over the years and also last year when the dr. posted my X-ray in

the

> light box right in front of some other patients out in the hall!!

> They sure stared at it. Made me feel like a freak.

>

> On a separate note, I was reading some of the posts today, and read

> one from someone about " implants " and the dangers from infections.

> Well, I've never been clearly told about that one way or another.

> I've never taken prophylactic antibiotics for any dental procedures

> or anything else. No one seemed to think it was necessary. I did,

> however, have a raging staph infection from a biopsy (not spine

> related) about 4 years ago that required me to go to the hospital

and

> have intraveneous antibiotics because it had spread to my blood

> stream. Would something like that harm my harrington rod and

fusion??

> Does anyone have any idea??? I seem to be fine now. (No thanks to

the

> original surgeon) My family doctor realized the urgency and

> hospitalized me. I could have easily died.

>

[Guest guest]

Hi Carol,

Yes, you are entitled to copies of all your medical information. And, yes you may have to pay. I've never dealt with UCSF, but I cannot imagine that they would need stuff from 20 years ago. Why not send them your most current test results (x-rays, etc.) and doctors notes and last surgical report if available and then see what else they need, if anything.

Bonnie

[ ] Update

I just wanted Racine and others who posted in response to me recently to know that I called UCSF's 800# today and they said it was the "fine institute"? (not sure of spelling) for spine & neorologic disorders. The guy said, no, you don't need a referral, but they do need to have a "packet" of information sent to them (or faxed) with results of tests like CT scans, X-rays, that sort of thing and doctors' notes and then a demographic page about myself. Then they decide if they're going to see you. I am going to start to assemble doctor's notes and files, but I will see how much luck I have with that. We are allowed as patients to have copies of our files, and X-rays, etc, right? Part of HIPAA and all that, right? I assume I'll probably have to pay for it. How much detail does UCSF need? Does a person need a photo of themself to prove they have flatback, or what? My problem is that I called Children's Hospital of Oakland a couple of weeks ago and found out they destroyed all my surgery records and X-rays, etc. a long time ago. They said they only keep medical records 20 years, and if I had known that, I would have asked for them long ago. Now I have no pre-surgery info. or X-rays. I don't even remember how bad my double curve was. I was only 16, so don't remember a lot. It probably was close to 90%, but not sure. I'm now trying to get medical records from my family doctor from the 1980's, because that's when I started having the lower back pain and pain down my left leg around 1985-86. "Radiculopathy" he called it. I don't think he ever took X-rays, though. I have some X-rays here at the local hospital taken around 8 yrs. ago or so, and the ones taken last year at the orthopedist (the first ortho I saw since my surgery 32 yrs. ago) I've been in ortho la-la land the past 30 years!!! I just know that I have gotten some peculiar looks from X-rays techs over the years and also last year when the dr. posted my X-ray in the light box right in front of some other patients out in the hall!! They sure stared at it. Made me feel like a freak. On a separate note, I was reading some of the posts today, and read one from someone about "implants" and the dangers from infections. Well, I've never been clearly told about that one way or another. I've never taken prophylactic antibiotics for any dental procedures or anything else. No one seemed to think it was necessary. I did, however, have a raging staph infection from a biopsy (not spine related) about 4 years ago that required me to go to the hospital and have intraveneous antibiotics because it had spread to my blood stream. Would something like that harm my harrington rod and fusion?? Does anyone have any idea??? I seem to be fine now. (No thanks to the original surgeon) My family doctor realized the urgency and hospitalized me. I could have easily died.

[Guest guest]

I'm still in the medical information gathering mode, but as soon as I

assemble some medical records, I will call them again and ask exactly

what they want. I'm wondering (and anyone can answer this) how do you

get copies of your X-rays?? Or do they even make copies for a person

to keep? Do doctors just forward them to other doctors, and we can't

have them??

I actually live in Central California half way between Fresno and

Bakersfield. I guess it's not too terribly far from you. I do know

that it would take me 4 hours to drive to SF. I've been to Fairfield

and Vallejo area before. We went to Marine World Africa USA about 8

yrs ago. I've heard thatpark is all different now. It didn't have any

amusement park rides then. (I actually prefer no or few rides!)

I posted my info. in the files section, I believe, but I'm fused from

T5-L4 (12 vertebrae) I guess I probably did have the flatback from

the beginning, but no one--including me--had ever heard of such a

thing until I discovered about it here on the internet. All I know is

that I've been experiencing back pain for about 20 yrs. now. It

started around 10 yrs post-op. I had my surgery at age 16 in 1974 at

Oakland Children's Hospital.

Write again!! Anything you want to know or make comments about is OK

with me.

> >

> > I just wanted Racine and others who posted in response to

me

> > recently to know that I called UCSF's 800# today and they said it

> was

> > the " fine institute " ? (not sure of spelling) for spine &

neorologic

> > disorders. The guy said, no, you don't need a referral, but they

do

> > need to have a " packet " of information sent to them (or faxed)

with

> > results of tests like CT scans, X-rays, that sort of thing and

> > doctors' notes and then a demographic page about myself. Then

they

> > decide if they're going to see you. I am going to start to

assemble

> > doctor's notes and files, but I will see how much luck I have

with

> > that. We are allowed as patients to have copies of our files, and

X-

> > rays, etc, right? Part of HIPAA and all that, right? I assume

I'll

> > probably have to pay for it. How much detail does UCSF need? Does

a

> > person need a photo of themself to prove they have flatback, or

> what?

> > My problem is that I called Children's Hospital of Oakland a

couple

> > of weeks ago and found out they destroyed all my surgery records

> and

> > X-rays, etc. a long time ago. They said they only keep medical

> > records 20 years, and if I had known that, I would have asked for

> > them long ago. Now I have no pre-surgery info. or X-rays. I don't

> > even remember how bad my double curve was. I was only 16, so

don't

> > remember a lot. It probably was close to 90%, but not sure. I'm

now

> > trying to get medical records from my family doctor from the

> 1980's,

> > because that's when I started having the lower back pain and pain

> > down my left leg around 1985-86. " Radiculopathy " he called it. I

> > don't think he ever took X-rays, though. I have some X-rays here

at

> > the local hospital taken around 8 yrs. ago or so, and the ones

> taken

> > last year at the orthopedist (the first ortho I saw since my

> surgery

> > 32 yrs. ago) I've been in ortho la-la land the past 30 years!!! I

> > just know that I have gotten some peculiar looks from X-rays

techs

> > over the years and also last year when the dr. posted my X-ray in

> the

> > light box right in front of some other patients out in the hall!!

> > They sure stared at it. Made me feel like a freak.

> >

> > On a separate note, I was reading some of the posts today, and

read

> > one from someone about " implants " and the dangers from

infections.

> > Well, I've never been clearly told about that one way or another.

> > I've never taken prophylactic antibiotics for any dental

procedures

> > or anything else. No one seemed to think it was necessary. I did,

> > however, have a raging staph infection from a biopsy (not spine

> > related) about 4 years ago that required me to go to the hospital

> and

> > have intraveneous antibiotics because it had spread to my blood

> > stream. Would something like that harm my harrington rod and

> fusion??

> > Does anyone have any idea??? I seem to be fine now. (No thanks to

> the

> > original surgeon) My family doctor realized the urgency and

> > hospitalized me. I could have easily died.

> >

>