Re: osteoporosis

August 24, 2002

Hi Dianne,

Graves can also cause osteoporosis as well. Those who have had RAI are at

risk for it...extra calcium taken no greater than 500mg at one time and with

vitamin D can over some good protection and help to reverse things. When a

person has graves, insurance companies very rarely turn down yearl bone

density scans. My new primary has ordered one called a DEXA for me which I

will have on 9/4...he says it is more sophistcated than the bone density

that the hospital routinely does. When I go, I will ask lots of questions,

differences and share what I learn on that day.

On the other hand, my joints, muscles and lower back are always in great

pain when I am hypO...so I need to ask you, what treatment are you on? If

your on atd's, what kind and what dose? What blood work does your doctor

run on you, do you get copies of your labs? How long have you been on your

dose?

Could it be that you are over medicated and either hypO or heading that way?

Please, whatever you do, don't ever believe your symptoms are 'all in your

head'...a favorite verse they must treat doctors just before graduating med

school as they seem to use it so often on us.

Take care,

Jody

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August 25, 2002

Jody and others who have had bone density tests, what is involved? I think I

should get one since my grandmother has osteoporosis (well, she did, but

it's reversed now since she did NAET). The thing is, these days I really

don't trust doctors and all their tests, so part of me just says forget it

and just keep taking care of myself and it will all work out.

Pam B.

My story: http://www.webmosaics.com/thyroid/

Open Letter to the newly diagnosed:

http://www.webmosaics.com/thyroid/letter.htm

August 25, 2002

And please...

What is the difference between a bone density test

and an ultra sound to screen bone density ?

-Pam L -

August 25, 2002

Hi Pam B.,

When I took the bone density, they put something, don't remember what as I

was hypO at the time, underneath my lower back, put me in the 'cat scan'

machine...no dye is used but radiation is.

I will let you know what the DEXA comes back as after I have it done on

9/4...it is suppose to be much more accurate but have no clue what it is

like...but this time I am not quite so hypO as I was the last time.

Sorry I couldn't be much help on this.

Jody

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August 25, 2002

Hi Pam L.

>>>What is the difference between a bone density test and an ultra sound to

>>>screen bone density ?<<<

Ultrasounds use no radiation BUT I thought ultrasounds worked only on soft

tissue...was not aware of them working on bones...so if you do this, I will

be interested in hearing all about it! I know I would prefer having

something done that uses no radiation.

Jody

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August 25, 2002

O.K. Jody,

Your explanation of the CAT scan and radiation made up MY mind.

I'm going for it. I am sure a doc somewhere could say the CAT scan is better

...but logic tells me...least invasive first ! And for $35 I bet I get some

basic idea of where I am at. I was asking not because of the cost, but I can

see where this set up could cost me at least half a day.

I have been watching the bone loss in my dental Xrays since this whole thing

began, and now find myself a bit freaked out.

-Pam L -

August 25, 2002

In a message dated 8/25/02 9:22:24 AM Pacific Daylight Time,

PamB@... writes:

<< Jody and others who have had bone density tests, what is involved? >>

Dear Pam B,

You pretty much just lay on a table and this big hooded thing scans over your

body. A nurse or tech tells you which way to turn. They enter the findings

in a computer.

Pam R.

August 25, 2002

Here is the info on the ultrasound screening for osteoporosis.

http://www.lifelinescreening.com/Default.asp?Page=Screenings

It is the picture of the woman with her heel in a 'thing'. Then click of

this picture and it explains more.

-Pam L -

August 25, 2002

Thanks Jody and , Pam L. I'm with you, I'll go for the least

invasive one first.... but I'm thinking why do any if I'm making a point of

taking care of my bones now anyway? I don't mean to sound argumentative, I'm

just thinking out loud, and remaining leery of tests and MDs. What will

" knowing " make me do differently?

Pam B.

My story: http://www.webmosaics.com/thyroid/

Open Letter to the newly diagnosed:

http://www.webmosaics.com/thyroid/letter.htm

August 25, 2002

Really? I should dispute them! Mine was turned down completely--the goooood

news is that my bones are AOK!

Terry

>

> Reply-To: graves_support

> Date: Sun, 25 Aug 2002 00:26:24 -0400

> To: graves_support

> Subject: Re: osteoporosis

>

> When a

> person has graves, insurance companies very rarely turn down yearl bone

> density scans.

August 26, 2002

Pam B.

Thank you for your web-site for the newly

diagnosed.

My browser did not show what you were referring

to when you said " This is for patients'

families " . did you have a link or book

recommendation? I am not a computer whiz, is

there something I can do to see these?

Kit

--- Pam B wrote:

> Thanks Jody and , Pam L. I'm with you,

> I'll go for the least

> invasive one first.... but I'm thinking why do

> any if I'm making a point of

> taking care of my bones now anyway? I don't

> mean to sound argumentative, I'm

> just thinking out loud, and remaining leery of

> tests and MDs. What will

> " knowing " make me do differently?

>

> Pam B.

>

> My story: http://www.webmosaics.com/thyroid/

>

> Open Letter to the newly diagnosed:

> http://www.webmosaics.com/thyroid/letter.htm

>

__________________________________________________

August 26, 2002

Hi Kit, the links were not showing up but I fixed it... I think the link you

are talking about is this one:

http://www.webpak.net/~deecee/spouseletter.htm

Pam B.

My story: http://www.webmosaics.com/thyroid/

Open Letter to the newly diagnosed:

http://www.webmosaics.com/thyroid/letter.htm

August 26, 2002

Thank you Pam!

--- Pam B wrote:

> Hi Kit, the links were not showing up but I

> fixed it... I think the link you

> are talking about is this one:

>

> http://www.webpak.net/~deecee/spouseletter.htm

>

> Pam B.

>

> My story: http://www.webmosaics.com/thyroid/

>

> Open Letter to the newly diagnosed:

> http://www.webmosaics.com/thyroid/letter.htm

>

__________________________________________________

August 26, 2002

,

Yes..Fosamax seems to be the right word !

http://www.endocrineweb.com/osteoporosis/fosamax.html

Looks like this might just be the ticket...keep in mind I refuse to take

estrogen.

Pam B...check it out...it even has a picture of a heel. I wonder why? Maybe

this is a good place to be checking ? I like your idea of checking before

your treatment and then after. I bet not many have ever considered that.

The burning question still is : If the heel ultra sound is a good system,

then why do they do all that other stuff with the radiation and big cost ?

Suddenly I have become a newbie...and I see an other whole subject I need to

study.

The plot thickens...

http://imaginis.com/osteoporosis/osteo_treatment.asp

-Pam L -

August 26, 2002

Hummm...

Forteo is identical to a portion of the human parathyroid protein, a hormone

responsible for bone formation

http://imaginis.com/osteoporosis/news/news5.14.2001.asp

I still do not have a complete handle on this stuff...but look at this. To

me it raises the question of what other damage RAI creates...since the

parathyroid is right there, and we do hear of folks having it damaged by the

radiation.

So if a woman had RAI...and then had bad osteoporosis...do you think they

would ever admit the RAI had anything to do with it?

-Pam L -

August 26, 2002

Hummm...

Forteo is identical to a portion of the human parathyroid protein, a hormone

responsible for bone formation

http://imaginis.com/osteoporosis/news/news5.14.2001.asp

I still do not have a complete handle on this stuff...but look at this. To

me it raises the question of what other damage RAI creates...since the

parathyroid is right there, and we do hear of folks having it damaged by the

radiation.

So if a woman had RAI...and then had bad osteoporosis...do you think they

would ever admit the RAI had anything to do with it?

-Pam L -

August 27, 2002

Pam L -

Evista was the other one I was thinking of. But I don't quite understand if

that has estrogen or not. What the heck does selective estrogen-receptor

modulator mean? Does it provide more estrogen or work with the already

existing estrogen in your body? That's why I'm not sure about that one.

See my previous post to you and Pam B. about osteo - there's some sites

there about the ultrasound test!

Good site on osteo treatments, thanks! Half of them I never heard of before!

Re: osteoporosis

> ,

>

> Yes..Fosamax seems to be the right word !

> http://www.endocrineweb.com/osteoporosis/fosamax.html

>

> Looks like this might just be the ticket...keep in mind I refuse to take

> estrogen.

>

> Pam B...check it out...it even has a picture of a heel. I wonder why?

Maybe

> this is a good place to be checking ? I like your idea of checking before

> your treatment and then after. I bet not many have ever considered that.

>

> The burning question still is : If the heel ultra sound is a good system,

> then why do they do all that other stuff with the radiation and big cost ?

> Suddenly I have become a newbie...and I see an other whole subject I need

to

> study.

>

> The plot thickens...

> http://imaginis.com/osteoporosis/osteo_treatment.asp

>

> -Pam L -

>

August 27, 2002

Pam,

>>>So if a woman had RAI...and then had bad osteoporosis...do you think they

>>>would ever admit the RAI had anything to do with it?<<<

I don't think that in our life times they will ever admit how bad I-131 used

in medicine is...if they did, think of the law suits because it has been

used for so long.

Jody

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February 24, 2006

Hi ,

I'm glad you found out about the osteoporosis, but sorry that it was

not better news. There is a liquid calcium and you can break vitamins in

half to make them go down easier. As to the Androgel cream, what was the

purpose of prescribing it? I only ask because of what we experienced with

Jeff. I think we've already decided that Jeff and Mark are a lot alike

developmentally. When I took Jeff to the Endocrinologist, I made it very

clear that we were only there to prevent osteoporosis. He prescribed

Testosterone injections because Jeff hadn't started puberty and since the

bone mass thickens during puberty, he felt that was the most natural way to

solve the problem. I didn't know then, what I know now. Jeff had no

concept of puberty and didn't know that he was different in any way. The

Testosterone did what it was suppose to do as far as putting him into

puberty. I then had a young man that was still a child mentally, in a man's

body. Since Jeff wasn't completely toilet trained, all the pubic hair made

things more difficult. I have to shave him daily as he has a very heavy

beard growth. Plus Jeff became much stronger muscle wise. I now know that

there are other things they can do to prevent osteoporosis. I guess what

I'm trying to say is if Mark isn't aware that he is different and it doesn't

bother him, you might want to think twice about introducing him to hormones

that will bring about puberty. Just know that there are other options to

prevent osteoporosis.

Smiles from,

Baker - Mom to Jeff (21 yrs. CHARGEr), Steve (22 yrs. & attending BYU/

Provo, & getting married in 3 weeks), and others with families of their own,

providing me with 4 handsome, active grandsons, and 2 beautiful,

curly-haired granddaughters,

one a special angel with CdLS (Cornelia de Lange Syndrome).

Idaho, USA

http://www.caringbridge.org/me/jeffbaker

osteoporosis

> Hello,

> Well we have started yet another journey in our latest health

> issue.

> My son Mark who is 22 went to his Dr and I mentioned he should have a

> bone

> scan well our baseline turned out to be more than that, He had already

> shown

> signs of severe bone loss. We were sent to an endocrine specialist and he

> is

> now on Calcium twice daily and a multivitamin along with Androgel cream.

> (he

> still has swallowing problems so I am already looking for a different

> Calcium

> and vitamin the one's recommended were way too big) I should have seen it

> coming. I might be saying goodbye to the " baby face " he has had for the

> last 22

> years. I cannot believe how this latest issue has affected me I am a bit

> on

> the emotional side over it. We'll see. Just thought I would share another

> chapter.

>

February 24, 2006

My son is 23 and he had a bone scan done about a year ago. It showed

some bone loss. He's been on Calcium + D since. He's done very well. I

understand the baby face, looks 12. He is not on hormones, the doctor and

I

have discussed this at length and decided not to give them. too is

skinny (long legs like a giraffe) he's 5' 2'' and only weighs 82 pounds. Eats

like a horse. I have found a pill he can swallow easily, thanks to our

pharmacist. Good to read all the posts.

Mom to ph 23 cHaRGE

February 24, 2006

Michele-

To know about bone density you have to get a DEXA scan-the regular x-rays don't

give enough information.

Barb

--------- Re: osteoporosis

>

> Hi, I actually have found a liquid form of calcium/magnesium and

> vitamin D at Whole Foods. It cherry flavor and is relatively cheap

> ($15) for about a months supply.

>

> >

> > -

> > I found calcium capsules with added magnesium and vitamin D. Nate

> has to take three of them a day, but they are much easier to get down

> then the huge calcium pills.

> > And I can relate to the baby face issue. Nate has been small for

> soo long and is now beginning to grow-thanks to the growth hormone.

> He gained about four pounds and got an inch and a half taller since

> December. Major growth-still super skinny and little but we can see

> those changes...

> >

> > Barb-mom,(CHARGE)12 next Thursday, Rosie18

> >

> > -------------- Original message ----------------------

> > From: KAV427@...

> > > Hello,

> > > Well we have started yet another journey in our latest

> health issue.

> > > My son Mark who is 22 went to his Dr and I mentioned he should

> have a bone

> > > scan well our baseline turned out to be more than that, He had

> already shown

> > > signs of severe bone loss. We were sent to an endocrine

> specialist and he is

> > > now on Calcium twice daily and a multivitamin along with Androgel

> cream. (he

> > > still has swallowing problems so I am already looking for a

> different Calcium

> > > and vitamin the one's recommended were way too big) I should have

> seen it

> > > coming. I might be saying goodbye to the " baby face " he has had

> for the last 22

> > > years. I cannot believe how this latest issue has affected me I

> am a bit on

> > > the emotional side over it. We'll see. Just thought I would share

> another

> > > chapter.

> > >

February 24, 2006

This was whatever you get for growth from the endo. Would it have been a

DEXA or not?

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

RE: Re: osteoporosis

Michele-

To know about bone density you have to get a DEXA scan-the regular x-rays

don't give enough information.

Barb

--------- Re: osteoporosis

>

> Hi, I actually have found a liquid form of calcium/magnesium and

> vitamin D at Whole Foods. It cherry flavor and is relatively cheap

> ($15) for about a months supply.

>

> >

> > -

> > I found calcium capsules with added magnesium and vitamin D. Nate

> has to take three of them a day, but they are much easier to get down

> then the huge calcium pills.

> > And I can relate to the baby face issue. Nate has been small for

> soo long and is now beginning to grow-thanks to the growth hormone.

> He gained about four pounds and got an inch and a half taller since

> December. Major growth-still super skinny and little but we can see

> those changes...

> >

> > Barb-mom,(CHARGE)12 next Thursday, Rosie18

> >

> > -------------- Original message ----------------------

> > From: KAV427@...

> > > Hello,

> > > Well we have started yet another journey in our latest

> health issue.

> > > My son Mark who is 22 went to his Dr and I mentioned he should

> have a bone

> > > scan well our baseline turned out to be more than that, He had

> already shown

> > > signs of severe bone loss. We were sent to an endocrine

> specialist and he is

> > > now on Calcium twice daily and a multivitamin along with Androgel

> cream. (he

> > > still has swallowing problems so I am already looking for a

> different Calcium

> > > and vitamin the one's recommended were way too big) I should have

> seen it

> > > coming. I might be saying goodbye to the " baby face " he has had

> for the last 22

> > > years. I cannot believe how this latest issue has affected me I

> am a bit on

> > > the emotional side over it. We'll see. Just thought I would share

> another

> > > chapter.

> > >

February 25, 2006

,

I am very concerned about giving Mark the male hormone. He is

developmentally delayed and will never be independent. His family Dr was not

sure she would want to go that route, the specialist ordered it. I have many

mixed emotions about it. My Mark this last year had a huge growth spurt. He is

5'5 1/2 and weighs 166! HE is bigger than I am now. He is 22. I am a bit

shook up over the whole thing.

February 25, 2006

In a message dated 2/24/2006 12:37:04 P.M. Eastern Standard Time,

Bakersmom@... writes:

The