Re: Test questions - Betty

[Guest guest]

Jbabe,

My problem came right out of the blue. I didn't know what was going on with

me. It never occured to me about the thyroid.

This group has been so much help.

Even with all the reading I am doing, I still don't know all that I need to

know.

I still don't even know what Graves Disease really is. I read about it, but

for some reason I can't figure it out. I couldn't figure how I could be hypo

and then so quick go to hyper. It took the help of this list to figure that one

out. The nodules I have i can't find much info on them.

When I went to the Endo, I think that I was so shocked at what he told me,

that i don't really remember it all. It all went over my head and I agreed with

him on so many things. It was day's later that i started remembering things

he had said to me.

I am making notes from all the info that I am learning here, but I have a

long way to go. I am not absorbing it all. It is all so confusing to me.

Your idea of a file is great. I will do that, so that when I go, I won't be

looking through notes, I will know right where my notes are.

I started taking the vitamins that were recommended on here.

My biggest problem right now is gaining more weight. It doesn't feel good.

I still have my symptons, I hope they go away soon. They aren't as bad as

they used to be and I can tolerate them.

Thanks so much for sharing.

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

[Guest guest]

Hi Betty,

Your post reminds me so much of how I once felt. Awash with info I didn't

quite get, with my mind, Graves-befuddled to start with, unable to grasp the

essential facts. Which test was higher, which lower than they should be?

What does this all mean? Why am I feeling so...rotten!!!

Now, years later with most of it sorted through, I can say with some

authority that it does get better, you will comprehend as time goes on if

you keep on reading here, sharing test results here, and using this group to

help find your way.

It gets better!

Terry

dx '94, ATD's most of the time since then--but going to the endo tomorrow

and finding out whether I'm in remission (YES! I think I am)

> From: thebetzz@...

> Reply-To: graves_support

> Date: Tue, 27 May 2003 21:59:27 EDT

> To: graves_support

> Subject: Re: Test questions - Betty

>

> Jbabe,

> My problem came right out of the blue. I didn't know what was going on with

> me. It never occured to me about the thyroid.

> This group has been so much help.

> Even with all the reading I am doing, I still don't know all that I need to

> know.

> I still don't even know what Graves Disease really is. I read about it, but

> for some reason I can't figure it out. I couldn't figure how I could be hypo

> and then so quick go to hyper. It took the help of this list to figure that

> one

> out. The nodules I have i can't find much info on them.

> When I went to the Endo, I think that I was so shocked at what he told me,

> that i don't really remember it all. It all went over my head and I agreed

> with

> him on so many things. It was day's later that i started remembering things

> he had said to me.

> I am making notes from all the info that I am learning here, but I have a

> long way to go. I am not absorbing it all. It is all so confusing to me.

> Your idea of a file is great. I will do that, so that when I go, I won't be

> looking through notes, I will know right where my notes are.

> I started taking the vitamins that were recommended on here.

> My biggest problem right now is gaining more weight. It doesn't feel good.

> I still have my symptons, I hope they go away soon. They aren't as bad as

> they used to be and I can tolerate them.

> Thanks so much for sharing.

> Betty

>

>

>

>

> PS If your are expecting an answer from me, and you don't get it, please

> email me back with a friendly reminder.

> " To err is human; to forgive, divine. "

>

>

>

[Guest guest]

Hi Jbabe-

Writing everything down is a good idea.

But, how in the world do you get an internal medicine resident to call you

back (endocrinology is a fellowship following residency)? I'm married to an

attending physician at a busy level 1 trauma center and they just don't have

the time to do that. Even my endo, who I think is wonderful, will not call

me back for a few days and only then when I refuse to talk to his nurse and

sometimes threaten to increase/decrease meds on my own. I want to know why

he's doing what he does and his nurse doesn't know enough to tell me. He's

too busy. He also doesn't see other post-RAI patients once they're

stabilized (no functioning thyroid gland) so I'm lucky that he's taken me as

a patient. I think the only reason he continues to see me was because my

husband was a resident while he was an attending at the hospital.

The only reason that I ever saw anyone about it was because I read a 1999

study saying that some post-RAI patients did better adding T3 to their T4.

I was very angry that I had been told that I only needed a simple T4

pill/day for the rest of my life when our thyroids naturally produce about

10 mcg of T3 for every 100 mcg of T4. As a biologist, it doesn't make

evolutionary sense to not replace it because our bodies wouldn't waste

energy making something we didn't need. After I really started looking into

it, it became clear that they don't understand thyroid function all that

well.

Anyways, there is no possible way that any of my problems would ever have

been diagnosed as thyroid related unless I had aggressively pursued it after

I had read that study. Otherwise, I would have just thought they were

autoimmune related or that I was getting old. My exasperated family

practitioner (who had diagnosed me with chronic fatigue syndrome) finally

did refer me to my endo and I'm very thankful for that.

I just can't help but think that if it took 11 years for anyone to figure

out what was wrong with me, what happens to folks that don't have all the re

sources that I had. The most important thing I've learned throughout this

is that you can't rely on doctors to figure out what's wrong for nebulous

symptoms. I'm married to a fine physician but he says it's very difficult

to diagnose something based on symptoms that are common to many diseases.

Unless standard thyroid lab tests are off (TSH/many endos don't use anything

else) the chances of a diagnoses are low. So that's where doing your own

research pays off.

Take care,

dx & RAI 1987 (at age 24)

> Hi Betty,

>

> I just joined this group last week and was browsing through some of

> the messages previously posted.

>

> I was trying to get a feel for the place and am very plesantly

> surprised to see all the support here in this group.

>

> I also had RAI last summer.

>

> You reminded me of the way I felt after I had done it.

>

> Not knowing what to expect, going through fazes of panic attacks,

> calling my endo. every second day...

>

> I didn't realize that there were support groups out here pre-rai, but

> I probably would have done it anyway.

>

> Circumstances etc...

>

> It sounds like you have a very good endocrinologist and lots of

> support around you.

>

> I don't know what I would have done without my own personal support

> group. thanks " A "

>

> I was lucky in a lot of ways. I have a great endocrinologist who I

> really trust, an understanding family and terrific friends. None of

> which knew what RAI (let alone what Grave's Disease) was before I had

> it.

>

> So many questions to be answered. As a result, I surfed and surfed

> the internet and have made some really good friends because of this.

>

> What I did when I first had RAI was make a file. It's called

> my " Grave's file " .

>

> Included in there, was a " symptoms " section. Every time I had any

> kind of symptom, I would jot it down and then go through it with my

> endo. whenever I had an appointment.

>

> I found that this really helped because without my file, I wouldn't

> remember all the things I wanted to ask him.

>

> He even ended up filling in my " Lab results " for me!

>

> I have a few sections in it, including " lab results " , " procedures and

> treatments " , " medical phone numbers " , and a " calander " . I also have

> my dog's photo in there. )

>

> Also, if your endo. is not available on weekends, perhaps you could

> ask him for the phone number for the endo. residents at a hospital.

> I don't know if you have that there but most hospitals have endo.

> residents on call, 24/7. They are usually very helpful.

>

> I hope my 2 cents helped and I hope that you are doing well.

>

> If you have any questions you want to ask me, I will do my best to

> try and share my experiences with you.

>

> My levels are stabilized with 0.125 mg of synthroid and I won't have

> to see my endo again for another 3 months. To date, I have only had

> to have one adjustment. From 0.123 mg to my current 0.125 mg.

>

> Hope this helped... Jbabe

>

>

>

> > In a message dated 5/25/2003 10:06:53 PM Eastern Daylight Time,

> > cfyoung2@j... writes:

> >

> >

> > >

> > >

> > > You know, we may just end up liking your endo a little ;-) It's

> very good

> > > that he wants to have the labwork to discuss with you at your

> > > appointment. Try to get a nurse to give you the numbers over the

> phone a

> > > day or two before so you can share them with the group if you

> have any

> > > questions.

> > >

> > > have a great weekend, Fay

> > >

> >

> > Oh Fay, you made my day. Anything good that he (ENDO) does makes me

> feel

> > better.

> > I will let you all know when I go and when I get the results.

> > Thanks so much and have a great day.

> > It is dark, windy and rainy here. But, I have my 6 yr. old

> Granddaughter here

> > with me, so for me the weather doesn't matter. I just love her to

> pieces. LOL

> > Betty

> >

> >

> >

> > PS If your are expecting an answer from me, and you don't get it,

> please

> > email me back with a friendly reminder.

> > " To err is human; to forgive, divine. "

> >

> >

> >

[Guest guest]

In a message dated 5/28/2003 1:28:01 AM Eastern Daylight Time,

aldente@... writes:

>

> Now, years later with most of it sorted through, I can say with some

> authority that it does get better, you will comprehend as time goes on if

> you keep on reading here, sharing test results here, and using this group to

> help find your way.

>

> It gets better!

>

> Terry

>

Hi Terry, thanks for the encouragement. Right now, I feel like I am drowning

in knowledge that I don't understand.

I am glad you understand what i am feeling. I am sorry thought that you had

to go through it.

Because of this list, I do feel like I am on the right road anyway. That

helps a lot.

You know what bothers me the most? When I read about children having this. I

feel bad for them, and their parents.

One of these days, I think I am going to wake up and all of this is going to

make sense to me.

Thank you again Terry, I needed your encouragement.

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

[Guest guest]

In a message dated 5/28/2003 2:28:38 AM Eastern Daylight Time, jutek@...

writes:

>

> I just can't help but think that if it took 11 years for anyone to figure

Hi ,

I guess I was lucky.

I guess it was around Oct, 2002 that my hair was falling out. Then I was so

tired.

sleeping 12-15 hours a day and no energy. Tremors, terrible fingernails, cold

etc.

I think it was in March that I had to go to my PCP for a regular check up. I

told him what was going on and he had me go for blood work. That is how I knew

about the thyroid. My PCP then sent me to an Endo Dr.

For me everything was so fast, that i didn't even really get time to persue

any info about it.

Do you think there will ever be a REAL cure for this? Not just regulating it.

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

[Guest guest]

, what an interesting letter. Thanks so much.

I believe that drug companies have a lot to do with research. They make a lot

of money off us and insurance companies.

Gee, look how the insurance companies tell us how many day's we can stay in

the hospital for different procedures.

It appears that everything is about money.

I live in a very small town, but we do have enough PCP's in the area. Not in

my town, but close by. I don't know about Endo's but I do know that we only

have 2 Gastrointerologist in my area.

I hope they find a cure real soon. Especially for our children and

grandchildren.

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

[Guest guest]

Hi Betty-

Part of the problem where I live is that there is a lot of poverty here and

not a lot of doctors. There are roughly 50 primary care physicians for

every 100,000 patients. And with endos, it's even worse. There are only

about 6-10 endos in the Fresno county region and we have a population of

over a million.

And, yes, I do think there will be a cure eventually but probably not for at

least 10 years. They won't be targeting thyroid disease though. They'll be

targeting really nasty autoimmune diseases like systemic lupus and

rheumatoid arthritis but the process is the same and someone somewhere will

apply it to us. Heck, I even think they'll be able to help those of us that

don't do well post-RAI using our own stem cells to grow a new thyroid

someday. I'm not so cynical that I think all research will be stifled

because of a conspiracy by the drug companies as some do (and some has

been). That's where we come in because they can't sell us on something that

we won't buy. And I know that my children might be predisposed to thyroid

disease and they'll probably want to keep their thyroid glands. There's a

good chance that since I didn't do well post-RAI, and since they carry my

genes, they wouldn't do well either so they'd probably refuse. If enough

people feel the same way, that starts an incentive for biotech companies to

start looking into something different.

So, I'm very optimistic that there will be help someday.

Take care,

dx & RAI 1987 (at age 24)

> > I just can't help but think that if it took 11 years for anyone to

figure

>

>

> Hi ,

> I guess I was lucky.

> I guess it was around Oct, 2002 that my hair was falling out. Then I was

so

> tired.

> sleeping 12-15 hours a day and no energy. Tremors, terrible fingernails,

cold

> etc.

> I think it was in March that I had to go to my PCP for a regular check up.

I

> told him what was going on and he had me go for blood work. That is how I

knew

> about the thyroid. My PCP then sent me to an Endo Dr.

> For me everything was so fast, that i didn't even really get time to

persue

> any info about it.

> Do you think there will ever be a REAL cure for this? Not just regulating

it.

> Betty