It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Osteoporosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-25-2005, 11:39 AM   #1
Veteran
(female)
 
Join Date: Nov 2004
Location: Iowa
Posts: 316
ZoeGirl HB User
Those under 40 yrs, T-scores and treatment results

I'm 34 with osteopenia; hip t score is -1.4 and spine is -2.5

At the moment I am doing exercises to improve bone mass. I also have increased my calcium intake, but I was already taking a good amount. Both of my sisters have osteopenia and my grandmother and aunt had osteoporosis (hunched over).

Those who are in the younger group that have been in treatment over a year (with drugs or just diet/exercise): how are your results?

It's hard waiting a year to find out if what I am doing is working!

 
Old 03-25-2005, 12:06 PM   #2
Veteran
(female)
 
Join Date: Oct 2003
Posts: 393
Kaitrin HB User
Re: Those under 40 yrs, T-scores and treatment results

Welcome!

I'm 28 and was diagnosed in October 2003. I've been taking Fosamax since then. My T-scores, -2.8 spine and -2.4 hip, have not changed so far. I just added Evista to the Fosamax, so we'll see if that helps!

 
Sponsors Lightbulb
   
Old 03-31-2005, 10:57 AM   #3
Newbie
(female)
 
Join Date: Mar 2005
Posts: 8
sorocha HB User
Question Re: Those under 40 yrs, T-scores and treatment results

I'm so glad to find other realtively young people who have been diagnosed.
I'm 31 years old and had a heel scan 2 years ago as part of a general medical which put me at high risk category. Gave results to my GP who would hardly look at them saying that I'm not even thirty yet and I eat a diet rich in calcium sure I have nothing to worry about, that the heel scans aren't even reliable ! Now two years later I went back asking for a dexa scan - I basically had to demand a referral for it or I wouldn't leave the office.
Am I glad I did - have diagnosed osteoporosis -2.7 in spine, over -3.0 in one vertebrae and -2.3 osteopenia in hip. Well they got a shock - didn't know what to do with me since I was so young they thought it very strange. Have been to a Consultant Rheumatologist, have had every recommended test - blood / hormones etc. available to find out a secondary cause but nothing detected except Vit. D deficiency. No history of it in my family. Basically they're stumped - even mentioned that the equipment may have been faulty since he can't explain it or want to deal with it ! I'm very angry at that reaction, I have a feeling that if I was 60+ years of age I would be looked after much better :-( Since they couldn't find a cause for it basically told me to stop worrying about it - one doctor even told me to look up any information on the web - I wonder what I've been paying him for ? I swear I knew more about the subject that he did !
My current problem is that I was on fosamax and the consultant took me off it stating that I was in "child bearing years" (Typical male - I'm not even sure if I want to have children !) that he wasn't comfortable since it wasn't tested on pre-menopausal women. So at the moment I'm on no medication and trying to usual excersise, diet, calcium + vit D supplements etc. to increase my bone mass. Am arranging a second opinion with an osteoprosis specialist that I found myself.
My question is that has anyone else who has been diagnosed at a young age been frustrated with their doctors reactions or have found that theres not much help / advice available to someone of their age. If you have been put on medication has anyone discussed any possible risks etc., if having children ?

Last edited by sorocha; 03-31-2005 at 11:00 AM.

 
Old 03-31-2005, 11:26 AM   #4
Veteran
(female)
 
Join Date: Oct 2003
Posts: 393
Kaitrin HB User
Re: Those under 40 yrs, T-scores and treatment results

Wow - I'm sorry that you haven't had much luck so far, Sorcha. I am taking both Fosamax and Evista now. Neither of them has been tested on pre-menopausal women, but my doctor didn't say a word about that. I don't know if it might cause problems down the road, but there's nothing out that has been tested on pre-menopausal women, and I don't want to just do nothing and let my bones get worse. It does seem like nobody knows quite what to do with younger osteoporosis folks.
I'm glad you're getting a second opinion. I hope you'll let us know what the specialist tells you!

 
Old 03-31-2005, 11:42 AM   #5
Newbie
(female)
 
Join Date: Mar 2005
Posts: 8
sorocha HB User
Re: Those under 40 yrs, T-scores and treatment results

Thanks Kaitrin - I feel the same way as you and would rather be doing something about this instead of taking a wait and see approach. If I do decide to have a child soon I would like to get more info on how pregnancy could affect osteoporosis as regards the extra weight pressure on the spine, hips etc, the issue of a growing foetus absorbing a mothers levels calcium and the possible strain of childbirth on spine and back. However as it isn't an issue for the vast majority of people diagnosed with osteoporosis I'll probably not find much info. I really think more research should be done on younger age group. At least if its caught early in life then women may not have as many problems when we get older. Hopefully I might have more luck with the next specialist but have to wait a few weeks for the appointment - will let you know how I get on.

Last edited by sorocha; 03-31-2005 at 11:43 AM.

 
Old 03-31-2005, 12:03 PM   #6
Senior Member
(female)
 
Join Date: Sep 2004
Location: Southern California
Posts: 230
Aleta145 HB User
Re: Those under 40 yrs, T-scores and treatment results

As far as I know, Fosamax has not been tested on pregnant women. (I doubt many would sign up for THAT study.) However, it has been known to cause birth defects in rats. I wouldn't risk it.

Sorocha, have you had any low-trauma fractures that you know of? Any other risk factors for osteoporosis, such as heavy smoking, family history, eating disorders, high protein diets, medications, etc.?

 
Old 04-01-2005, 03:56 PM   #7
Veteran
(female)
 
Join Date: Nov 2004
Location: Iowa
Posts: 316
ZoeGirl HB User
Re: Those under 40 yrs, T-scores and treatment results

I was like you. I worried that I wasn't being treated, but the alternate methods to drugs do work in some. Sadly bone growth is slow, so you won't know until you get another scan in another year.

I did get the same reaction. My oldest sister has osteopenia, so I requested the test. They were reluctant, but also the nurse made a mistake in measuring my height... saying I was 5'3" instead of 5'4" (I didn't shrink I am 5'4") so they let me get the test.

My OB/GYN called me sounding shocked. Which was amusing, because I was informed because of my sister. She referred me to someone though. And he's having me do the weight bearing exercises and increased my Vit D and calcium. Basically, because I haven't had a large number (or any for that matter) or breaks and fractures this seems to be the first step.

My sister did take fosomax. My dr didn't want to for the same reason, it's not tested in pre menopausal women and they don't know the long term effects. My sister HATED the fosomax (side effects) and went off after two weeks.

She has seen an increase in bone mass with just running and other exercises.

So while I'd like to be popping a pill that might be helping, I've come to learn that that isn't always the best solution. Getting a second opinion is good. Get someone who recognizes the problem and will work with you.

Still I was curious if anyone in this age range has taken medication and seen large improvements?

I am confident that because I caught it this early I won't be hunched over like my grandmother and aunt.. but it still scares me to death!

 
Old 04-07-2005, 08:54 AM   #8
Newbie
(female)
 
Join Date: Mar 2005
Posts: 8
sorocha HB User
Re: Those under 40 yrs, T-scores and treatment results

The more I read about osteoporosis the more I'm beginning to think I'm better off trying to increase my bone density with natural methods since I'm young. Even though I don't have plans to have a child in the immediate future I will probably do so in the next year or so. Don't think I could relax if I had been taking a drug that may / may not have an effect. I donít think I could like live with myself if I did have a baby that wasnít healthy and I had knowingly been taking a drug that wasnít recommended.

Aleta145 Iíve looked into all the known risk factors for osteoporosis and canít find a thing, its not in my family, I did smoke but quit 5 years ago. Broke a collar bone and wrist in my late teens from a fall but nothing else. Only risk factor I think is an issue is that I was always very petite Ė only 5ft 1Ē and for most of my 20ís only weighed between 7-7.5 stone, size 4-6 dress size. Am lucky as I never dieted in my life, I eat like a horse, played lots of sports and now have only put on extra weight since I reached my 30ís. When people asked me where I put all the food I ate I used to joke that I had hollow bones Ė quiet funny now that I have osteoporosis :-)

Zoegirl Ė looks like Iím in a similar position as you. I have had lots of x-rays and blood tests like bone, vit / mineral levels, liver, kidney mal-absorption diseases among others - all fine except low vitamin D levels. My doctor calls me her mystery lady as they were shocked at the results but have no answers. I tend to agree and I think Iíll take my chances with exercise, calcium and vitamin D etc. If over the next year or two my T scores donít improve then Iíll look into medications again.

 
Old 04-07-2005, 12:56 PM   #9
Senior Veteran
(female)
 
Join Date: May 2003
Location: Michigan, USA
Posts: 519
CrohnieToo HB User
Re: Those under 40 yrs, T-scores and treatment results

Low vitamin D levels? Osteomalacia. Talk to an Endocrinologist about osteomalacia. Fortunately, exercise, vitamin D and calcium are the answer for osteomalacia too, but in different ratios, especially for the vitamin D. Have your parathyroid levels checked and both ionized and serum calcium. Vitamin D 25 hydroxy (calcidiol) is the important one to be checked rather than vitamin D1, 25 hydroxy (calcitriol).

 
Old 04-11-2005, 03:37 AM   #10
Newbie
(female)
 
Join Date: Mar 2005
Posts: 8
sorocha HB User
Re: Those under 40 yrs, T-scores and treatment results

Thanks for the tip CrohnieToo - I thought it may be osteomalicia instead of osteoporosis but the consultant I saw ruled it out from the blood tests I had done - I'm not 100% sure why. However I saw my own doctor last week and have asked for further tests to make sure and to double check what tests have been done so far - possibly will get another opinion. I'll look into what you've suggested as I do have pain which no-one can explain, therefore I definitely want osteomalicia checked out again as pain can be a sympthom of it.

 
Old 04-11-2005, 05:45 AM   #11
Senior Veteran
(female)
 
Join Date: May 2003
Location: Michigan, USA
Posts: 519
CrohnieToo HB User
Re: Those under 40 yrs, T-scores and treatment results

If your vitamin D levels were low I'm not quite sure how your consultant could rule out osteomalacia. But then he's the doctor, not me, and I'm just learning about this stuff. I do know there are two vitamin D blood levels to check: the vitamin D 25 hydroxy (calcidiol) and the vitamin D1, 25 hydroxy (calcitriol). The Endocrinologist at Mayo said the calcitriol is the WRONG one to check. A 24 hour urine collection test for calcium levels is also sometimes used from what I've read. Unfortunately, the Endo at Mayo Clinic is not the one treating me. I just saw him the one time two years ago. I wish he was the one treating me!!!! But 12 hours is a long one way drive to have to make the trip very often.

 
Old 04-11-2005, 09:18 PM   #12
Newbie
(female)
 
Join Date: Apr 2005
Posts: 4
too young HB User
Re: Those under 40 yrs, T-scores and treatment results

sorocha, i hope you don't mind me intruding on your thread.......... i myself am 30 years old, and have been diagnosed with osteoporosis in january. i just had a baby this past november and b/c i was on heparin during my pregnancy ( so they say) it created this massive bone loss. i was hospitalized in december b/c of severe back pain and muscle spasms which was all muscle related......... and by all the testing and xays of my back, they suspected some bone loss, which is how i was lead to getting a dexa scan. my T score is an average of -2.5 and my hip is worse. this battle i have been fighting is just the beginning. i have not been able to lift my baby at all. they tole me i could easily break my back, and basically they scared the heck out of me to move the wrong way. my osteo doc put me on actonel, and i am so scared to take it d/t the unknown long term effects, and i am so young. she basically told me i need this drug or else. i started it three times, and all three times i have been so sick. i get the fever, shakes, vomit, ........... anyway, i am so scared and i don;t know anyone to go to for help. my doc is really no help either. i want to try and find a specialist who deals with young people with this diagnoses. oh by the way, i too am vitamin D deficient. all other tests were negative too. is there any chance we could just exersise and take calcium and build bone on our own? i would reallly appreciate your response. good luck with your appt.........

thanks again,

"too young"

 
Old 04-11-2005, 10:16 PM   #13
Senior Veteran
(female)
 
Join Date: Jan 2005
Location: California
Posts: 2,704
taape HB Usertaape HB User
Re: Those under 40 yrs, T-scores and treatment results

TooYoung,
Did your doctor prescribe you Vit D supplements to take? I have a friend with osteoporosis who is Vit D deficient and takes 50,000 Units per day plus Forteo and is getting good progress. It's a male though so I don't know if they need different treatment or not. Just a thought.

 
Old 04-12-2005, 05:17 AM   #14
Veteran
(female)
 
Join Date: Nov 2004
Location: Iowa
Posts: 316
ZoeGirl HB User
Re: Those under 40 yrs, T-scores and treatment results

I am in awe at the different opinions doctors have on this. I can't believe someone told you you could break you back from lifting your baby! My t-score is -2.5 and I lift my 5 yr old! Have you had fractures/breaks that would cause them to say this? It sounds like pure ignorance if not.

My sister is in Boston and I in the midwest have both been told to exercise (run) and take calcium/vit D supplements. My sister's doctor has the opinion that this is all we can do until we hit menopause. I haven't been told this, but they are giving me a year to build bone mass without drugs.
I know osteomalacia is not the same as osteoporosis, but I honestly have not heard of anyone being told the things you have without some other symptoms.

Others recommend The Myth of Osteoporosis - and I agree, it's the best thing to do once diagnosed. Maybe buy a copy for your doctor.

 
Old 04-13-2005, 08:28 PM   #15
Newbie
(female)
 
Join Date: Apr 2005
Posts: 4
too young HB User
Re: Those under 40 yrs, T-scores and treatment results

Taape and Zoegirl, thank you for kind advice. yes, i am on the 50000 units of vitamin D, though i had the vomitting and bad side effects from the actonel at the same time, and at that time, was not sure which was causing it. i later found out it was the actonel, so i will start them again. i do have 2 vertebrae at T11 and T12 that are not compression fractures, but there is some "dishing" of the vertebrae, meaning that they are starting to look like they could compress if i don;t be careful. i have waited for many years of infertility and i finally have my miracle baby, and i am not allowed to pick her up. isn;t this awful? my doc told me after 3 months of the actonel, i can have less restrictions with her. i just pray i can take this drug. i started to take the 5 mg tablets daily, to see if that helps with the side effects, instead of once a week, which made me so sick. the pain in my back does not help. they say it was from the pregnancy, and the immobility i had for so long after the pain for so long, that my muscles atrophied and became weak, so i have therapy 3 days a week for it still. this is not supposed to happen when you have a baby. i just pray my muscles heal and this osteo disappears some day. sorry to blab too much, i just wanted to vent and explain to someone who understands..................

oh, zoegirl, you said you pick up your 5 year old????? maybe my doc is a little too much this restriction bologna? thanks for your response.

take care,

too young

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
To everyone...those having surgery soon and anyone who is hurting (or has hurt) painaway Pain Management 11 01-31-2008 10:19 PM
Just my story, for those that have an hour to read it :) Graciecat Anxiety 5 08-21-2006 08:48 AM
those day April414 Fibromyalgia 2 02-09-2006 04:28 PM
1stime mom question for those who've done this B4 babygirl224 Pregnancy 3 07-04-2005 02:56 PM
Question for those with Back Pain Neverenoughslee Fibromyalgia 6 02-22-2005 02:27 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



phylwill1152 (22), turtlelady (8), Piano0105 (7), taape (4), Titchou (3), Precious55 (3), Arggg (3), Sensitivo (3), dorri (2), Millard (2)

Site Wide Totals

teteri66 (1180), MSJayhawk (1005), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 01:37 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!