Help! 21 year old with advanced osteoporosis...

Hey Everyone. Here is a brief summary of my situation. I was diagnosed with Advanced Osteoporosis October 2007. The reason we came upon this discovery is because I had three disc herniations and 3 cracked vertebraes from a fall in the shower. My DEXA scan then revealed I have sever osteoporosis. I AM 21 YEARS OLD!!! YOUNG!!! Shouldn't have osteoporosis...much less ADVANCED osteoporosis. My doctors are puzzled. I am seeing an orthopedist, spine doctor, family md, endocrinologist and no one can put the pieces together. I did have a baby boy July of 2007...and I personally think that may have something to do with it. My endocrinologists has labeled it "idiopathic" which I am not happy with...because that means there is no known cause for me having osteoporosis. I am basically looking for some insight on this disease at my age and if anyone knows of causes at this age. I am a very fragile 21 year old and I have to be extremely cautious with every day tasks. At any second I could fall and break something else, so Im constantly nervous. Please help! I live in Louisiana, and if anyone knows of a great doctor in this state for this condition please let me know!!!

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Hello:
It's hard to know how to begin a reply as I know that you must be devastated at this diagnosis. Having been in this field as long as I have, you are not the first person with such a story; nonetheless, it is very hard for you to comprehend. I have several ideas for you:
1. You are going to several doctors. It is imperative that you are seeing people who are knowledgeable about osteoporosis and its consequences; unfortunately, this is not always easy--you need to ask questions and expect answers but not all of the medical professionals you see will have satisfactory answers for you. I would suggest using the resources of the National Osteoporosis Foundation and also look into such organizations as the Foundation for Osteoporosis Research and Education (FORE) in CA, NIH, National Osteoporosis Society (NOS) in UK, and there is also information available through the American Physical Therapy Association (APTA.)
2. You are still of an age that you can work on attaining more peak bone mass. About 98% of peak bone mass is attained by age 19 but you continue to grow into your early 30's. Get all the information you can on diet and exercise to help you with this. A couple of good books I have used include The Osteoporosis Solution by Carl Germano and Better Bones, Better Body by Susan Brown. There are others but be sure to check author credentials.
3. I have spent the last 25 years specializing in the physical therapy management of osteoporosis and could probably recommend someone in your area who has taken my training. My website is www.sarameekspt.com and if you contact me via email, we could converse privately to see if there is someone who can help you. You have to be careful with exercise as, for someone with your severe condition, spinal flexion, rotation and side-bending exercises would be contraindicated. You cannot simply go into any exercise class and expect a program that is safe for you.
4. Please don't despair--there is much you can do. You might need a brace and you are fortunate (in a way) that a very good one is now available. The "bottom line" is to stop the fractures as soon as possible and strengthen your back muscles for support.
Hope this helps. Please feel free to contact me personally via email.

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Hi,

I’m so sorry that you are going through this at such a young age. I have a rare case of male osteoporosis that was also classified as being idiopathic.

I have read that pregnancy associated Osteoporosis is very rare. If you had this, I would hope that your doctors would have recognized it. You may wish to seek the opinion of an Endocrinologist who has a special interest in Osteoporosis. Perhaps contacting the Endocrinology department of a local hospital or asking your doctor would help you identify some one near where you live.

I wish you and your baby the best!

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Hi Again,

It seems to me that at your age your long term prognoses is excellent and a full recovery is very likely.

Good luck.

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Sara'a advice above is excellent and I would definitely take her up on her offer, if I were you.
Good luck, and please keep in touch with this group.
We'll be rooting for you!
Lucy Buckley PT

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Thank you all for all of your support and input! FYI I do have a back brace that I wear all day at work when I am sitting at my desk and when I am doing physical activities. I have an apt. with an endocrinologist at the end of next month, he does have a lot of experience with osteoporosis in women...so I am hoping he can shed some light on the situation. FYI my calcium is elevated...the problem is that we can not figure out why my body isn't absorbing the vitamins, minerals, calcium, etc.! I think I have an underlying condition...whether it be rheumatoid arthritis, pernacious anemia, celiac...etc....I think that is what is causing the great bone loss. I like to think its not idiopathic. I was in nursing school up until I broke my back...so I have some medical knowledge and spend plenty time researching reasons why I could have this condition.

Once again thanks for all your posts....it is truly comforting knowing Im not alone with this condition.

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scallicoatte: Sorry to hear you have osteoporosis at such a young age. Unfortunately your story is not unusual. I hope your Endo figures out what's going on.

You mentioned elevated Ca, would you mind saying what your score is and whether it is an ionized Ca or total Ca test? I also have elevated ionized Ca and no one can figure it out, except that it explains my bone loss. Generally they'll test your PTH levels first, with elevated Ca, and then go from there. How's your D level is it okay. Are you spilling Ca as well in your urine. My urinary Ca is normal as well as PTH, but I have low D and high D 125, so my labs don't make any sense.

I was dx with osteo at 30 and am now 54, with many vert fx's and surgeries, but I'm almost finished with Forteo and my scores have gone up a whole point ( -3.6 to -2.6).

If you find out what's causing the calcium issue that might explain why you're leaching it from your bones. Let us know what you find out I would be very interested.

Good luck and glad you could join us!!!

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I'm glad you've found someone to work with. The chances are fairly good that your osteoporosis is caused by a secondary condition. To the best of my knowledge, osteoporosis associated with pregnancy is usually transient; however, I suppose that is not always the case.
What kind of a brace are you wearing? If it is supporting only your lower back, it's not going to help the thoracic area which is where you will have most of your problem with osteoporosis.

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I wholeheartedly agree with the recommendations made by osteoporosis expert Sara Meeks. The book that Sara recommends, " Better Bones, Better Body," by Dr. Susan Brown, gives a wealth of useful information you can use your whole life.

Susan Brown is Director of the Osteoporosis Education Project. I also recommend her website,
www.betterbones.com.

I have posted a series of articles on this site on yoga and osteoporosis. I will post another series next month. The books listed on my website below have chapters on yoga for healthy bones that you may find useful, especially the stories written by people with osteoporosis.

Best wishes,
Suza Francina,
Certified Iyengar Yoga Instructor
www.suzafrancina.com

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I am a man with osteoporosis. The cause is Celiac Disease which is 97% undiagnosed. I have had for years but only discovered it recently. Another symptom of Celiac is anemia. My hips are so thin they could break without falling or any trauma.

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I was tested for celiac...and that did infact come back negative. I do have anemia. Not quite sure on all the levels for my Ca, etc. Never have actually seen the results just told their elevated, not high, low, etc.

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I'm real sorry to hear of your troubles. My dad has advanced osteo. When I was 22, I was put on a drug by a quack psychiatrist who thought I had epilepsy. I gave me anemia, and I went from 160 pounds to 75 lbs in 6 months. Every rib was showing and I couldn't eat at all! At the end of this, I was hallucinating, the floor shifted and things like that. My parents had to cart me to the e.r....death's doorstep! well ,as you can see from my photo I'm very healthy, weigh 170, and feel good....I am very leary of doctors, and observe common people very closely...I've learned more from this site than anything....I would advise you to begin lifting small weights and gradually build up. I'd love to be 21 again.!! Start with 3 pound weights.

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I have a male friend who has severe osteoporosis. His doctors have determined that he has an absorption problem which has caused his osteoporosis. He is still going through testing to determine exactly what is the cause. There has been some discussion about Chrone's Disease as being the cause. I know that the Celiac disease can cause osteoporsis. That too comes under the heading of malabsorbtion. There is an easy antibody blood test for that.
Good luck with your visit with your new specialist.
Sunny1

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One of the members suggested that you lift weights.
It's important that you be evaluated by a physical
therapist who is an expert in osteoporosis before
you lift weights. The wrong exercise program can cause profound harm, and although many physical therapists say they can work with you, they do not have the expertise. Good luck.

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I'm so sorry for what you are going through. I was diagnosed at age 28 (am now 30) because my Dad is a dentist and he has noticed through the use of digital x-rays that more and more patients of all ages have suspiciously dark looking jawbones. He saw this in my 24 year old sister and sent her to the doctor and they determined she had osteoporosis in her spine. So he sent me. I have it as well. My Mom and her sister have osteopenia, but my grandfather died of osteoporosis related decline after almost all the vertebrae in his spine collapsed. In the past two years I have been to so many specialists, it's insane. I have also been the acclaimed Johns Hopkins Hospital in Baltimore because it is relatively close and they have no answers. We have found that I have ideopathic hypercalciuria ( I pee out too much calcium). You should check for that more than once because results could differ on different days. I am now trying a diuretic to help me retain calcium and taking 1890mg of calcium a day with 1200 IU of vitamin D. We are still awaiting results of that- I am hopeful it will work, but I just don't know. I am hoping to have a child soon, but worried about all these problems, and worried that if I already have low spine density that having a child will make my weak bones collapse since i have been fortunate thus far to not break a bone in my spine. If I find out more, i will let you know.

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Wow! Our cases seem so similiar it is scary. And I can empathize with the wanting a child. I was told I would never have kids due to endometriosis and ovarian cysts, so when I became pregnant and actually had a healthy baby boy...needless to say I was beside myself with joy. I say go for the pregnancy. It will be a long, painful road but the birth of your child is way worth the torture it does to your body. I have 3 herniated discs due to the pregnancy...and 3 fractured vertebraes but I would go through evey ounce of pain again just to have my son. I am not planning anymore pregnancies...because I do not know how much deteriation my body can handle. But I hope you make the right decision.

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I am 24 and have just found out I have severe osteoporosis (equivalent to a 70 yr old). I have a 7 month old baby. I also have a herniated disc in my lower back that I believe is unrelated. Is it best just to wean my baby and with hold on drugs if I want more children?

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My daugther is 19 and has low bone density diagnosed on DEXA. We do not know why yet. She has a number of hormonal issues including PCOS, insulin resistance, low estrogen levels etc. She was also on growth hormone treatment when she was younger. All of these things can have effect on bone density I have learned. Right now the endo is recommending estrogen patch and calcitonin spray but we are very hesitant to do this. These treatments are for postmenopausal women and they don't seem like they are getting at cause of her issues. I am hopeful that at her age, we may be still able to build bone mass as it seems you may be able to do.

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I got severe osteoporosis during pregnancy at the age of 31. They tried to find out why years ago but they never could figure it out. Not to say there aren't a lot of underlying conditions that may have caused your osteoporosis. When I joined this site I was truly amazed at how many women were in exactly the position as myself at even younger ages. I also read on this site that breastfeeding could cause more bone loss. There are many knowledgable people on this site. I have learned a lot. Good luck with everything but you do have your age on your side so you can still build up that bone mass.

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Hello ladies - there are a few separate discussions on this website now, so check the others too. There are many of us! SO comforting after years of feeling somewhat alone on this journey. I was diagnosed with severe osteoporosis at 31 after I fractured my thoracic spine in 4 places lifting my 4 month old son in his infant carrier. I went to Dr Bart Clarke at the mayo clinic for the most thorough work up that you can imagine (including a bone biopsy from my hip!). No secondary causes. I went on to have another child 4 years later! You CAN have kids, but you have to be careful. When I fractured in 2005, I was at an average of -3.5. I recovered naturally (no drugs although many had considered Forteo) and came back to -2.8. Your estrogen is extremely high during pregnancy, and estrogen is the most important factor in preventing bone loss. It is after the delivery that your estrogen plumets as your body prepares to lactate. For me, breastfeeding was as natural as having my children. I REALLY wanted to do it with my second as I did with my first. I had a bone density 1 week after delivering my second on 8/29/08 and I was still at -2.8. I felt great and decided to breastfeed. Well, 4 mos later I had major back pain again (almost overnight). I was terrified that I'd fractured again and was sure that I had. I had another bone density and it showed me at -3.1. I was told to stop breastfeeding immediately so that my estrogen could come back up and my body could start to recover. Breastfeeding is very hard on your bones and when we have a lower baseline like we seem to have. It seems to me that it takes about 3 to 5 mos of breastfeeding to decline significantly. I'd LOVE to have a third, but I'm sure that my dr's would frown upon it (I am 35 now and trying to get strong again). If I did have a 3rd, IF I breastfed at all, I'd probably only do it for 1 month. Lots of if's and my husband is happy with 2 anyway. I feel so thankful that it seems that I have not re-fractured. In December, I would have sworn that I re-fractured based on the pain. Maybe it was God warning me since I didn't think that osteoporosis hurt until you fractured. After not lifting (extremely hard to do w a 5 month old), not breastfeeding and taking a birth control pill with estrogen, I am feeling much better! I am now ready to start physical therapy and need to find someone in my area who knows that I am not supposed to do sit ups, back arches etc. FYI - there is a study going on at Columbia University for the use of Forteo in premenopausal women with ideopathic (unexplained) Osteoporosis. You have to have your period for 8 of the past 12 mos though and so I will recover for 8-12 mos on my own and then think about this study. Forteo is the only drug out there that does not stay in your body. It is the 'big gun' against osteoporosis, I'm told. I am glad that I didn't do it at 31, but I may be more open to it at 36. ALL of the Dr's that I've spoken to are very pro - doing this study. They like the idea that you are heavily monitored, that you get free drugs and free follow up and also that you would be contributing to the premenopausal data that we desperately need. You can find the study and contacts by googling premenopausal and forteo. Stay in touch and don't lose hope. I healed without a brace and without medication and went on to have a second. Once desperate and in pain, but now hopeful and healing, Stephanie

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Elevated calcium?
Check parathyroid hormone (PTH).

Many doctors misdiagnose this disease.
This website tells you everything you need to know about hyperparathyroidism: www.parathyroid.com

If you have high calcium levels and high PTH levels, you have hyperparathyroidism.
But here's the catch: If you have high calcium levels and normal high (in the higher end of normal) PTH, then you still have hyperparathyroidism.

Look at the symptoms. Do many of them match?
Hyperparathyroidism can cause osteoporosis, lack of absorption, etc.

The good news is that osteoporosis caused by hyperparathyroidism is 100% reversible.

Another cause of high calcium and osteoporosis is hyperthyroidism. This cause of osteoporosis is also reversible.

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