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!!!

By YoungMum88
Posted March 21, 2009 at 8:34 pm
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Hi Scallicoatte, can i just say i really feel for you having to live with this debilitating disease. I can totally sympathise with you because i too am a mother aged 21. I was diagnosed 3 months ago and am recovering from six fractures in my spine whilst trying to look after a 6 month old. Like your story the doctors have no insight into this disease at our age and have been no help whatsoever. I believe mine was caused from pregnancy as i had no prior warning until all of a sudden 7 weeks after giving birth my spine literally collapsed and it felt like my world fell apart.

I am so glad and sorry at the same time that i have met someone in my exact same situation. I also believe mine could have been partly from the steroids that i took for many years as a child to treat asthma. But like i said it wasnt until i had breastfeed for 7 weeks and suddenly rushed to hospital 3 seperate times and finally diagnosed with severe osteoporosis. I am constantly in pain and am scared that i will have to live with this forever and also one of the biggest questions i have is will i ever be able to have any more children? I am also currently looking into kyphoplasty as an option but im not convinced as i know there are many side effects.

So i guess just hang in there, i know theres not much else you can do but keep going, especially when we have beautiful babies to look after. But i do know how HARD getting through each day is.

All my thoughts and prayers youngmum Xx

By LindaS
Posted March 19, 2009 at 12:45 pm
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I got osteoporosis during the pregnancy of my daughter over 18 years ago. When I joined Inspire, i was shocked to learn how many women got osteoporisis because of a pregnancy. I don't think doctors are aware of how often this happens. I believe it is much more common than than the so called experts know.

By twentytwo
Posted March 19, 2009 at 2:52 am
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Im so glad I have found this site.
I am twenty two yrs of age and was diagnosed with osteoporosis last yr,The dr says I have the bones of a 60 yr old.I seen an endocrinoligist but she could not help me ,she tested me for celiac and the test results came back negative.She said because I am a sporty person that that was the reason,how does that make sense??I would really appreciate if anyone had some advice for me.
Please help

By Wendyday
Posted March 18, 2009 at 5:29 pm
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I wanted to let you know what the Endocrinologist said about my results. My worst number was a -2.88. All my blood/ urine tests came back normal.

He told me that your bones don't stop growing till age 35! He said that my numbers can be so low because I have not hit my highest point age (35) and because I have not been taking calcium during pregnancy or nursing.

He recommended daily walking, 1500 mg calcium, and 4000 IU daily Vit D (that's a lot isn't it!) He told me to get another scan in a year, and that will tell us a lot. If it hasn't improved he wants to think about drugs. I pray that it will improve.

Overall, I feel really good about the visit. Glad to know that our bones are still growing and building. He said I would be fine becoming pregnant again because our body protects your bones while you are pregnant (just not nursing) Oh, one other thing, he said that during pregnancy you should take an extra 500 mg of calcium a day and keep up the vit. D.

By xoluvableflurtox
Posted March 10, 2009 at 7:03 pm
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Look into your parathyroid. A disease in it can cause elevated calcium levels. Hyperparathyroid disease often goes undiagnosed! If you get tested make sure your doc tells you the number. If he says its slightly elevated. (Even just a little bit elevated means you could very well have it) The calcium levels even fluctuate which makes it difficult to diagnose. I can go on and on about it but its best it you just read about experts telling you. They have so much info on it at parathyroid.com.

By waters
Posted February 12, 2009 at 4:12 pm
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Hi Scalliscotte - did you breastfeed your baby boy? It seems that of all of us on this site, that most of us with 'idiopathic' osteoporosis had babies and breastfed and then fractured 3-6 months into breastfeeding. I literally went to the Mayo Clinic and had a bone biopsy taken of my hip in surgery so that they could study it for underlying causes. There were none. I think that I had low bone density before I had my baby, and then the breastfeeding (and low estrogen while doing it) along with insufficient calcium intake while nursing my first time sent me over the edge. Looks like your fractures were in 2007. How are you doing now?

By waters
Posted February 12, 2009 at 3:59 pm
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Hi gg522 - I hope that my experience encourages you. I was diagnosed with osteoporosis after breaking my spine in 3 places when my first son was 4 months old. My hip at that time was only -1.6, but my spine was -3.4 or so. I went on to have a second child 4 years later (they are 3 yrs and 10 months apart). When I got pregnant with my second, my spine was -2.5 and my hip was -1.2. I was very worried, but my bone density did very well during my pregnancy (-2.8 in spine, -1.4 in hip). Your estrogen is so high during pregnancy which is very protective against bone loss. You are most vulnerable if you breastfeed which I learned the hard way the first time. I did breastfeed my second, but 4.5 months in had a bad scare and realized my bone density plumeted to -3.1 in my spine in only 3 mos (I was checked a few weeks after delivery). I stopped right away :( and went on a birth control pill for the estrogen (ovcon-50) and I feel GREAT now (I'm so thankful as I thought I'd fractured again). I will only stay on ovcon-50 for 5 months and then I will drop to ovcon-35 which has a more standard level of estrogen. I'd feel fine about having a second if I were you. I may however consider a c-section in case you have a big baby since you won't be able to to check your bone density before delivery (I had c-sections for both which was lucky since I didn't know I had osteo at the time). Also - if you breastfeed, I'd do it for a short time and see if you can get them to do a bone density every 30 days. I totally want a third (my husband is happy with two though). I am 35 though and our second is only 5 months old, so by the time we'd do it again, I'd be 37 or 38 which brings on other risk factors. We'll see - I'm not giving up hope and am leaving it in God's hands. Best of luck to you and write with any other thoughts or questions. I wish I had this support network when I fractured the first time! Stephanie

By gq522
Posted February 12, 2009 at 1:29 pm
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Hi.. I was just diagnosed with Osteoporsis. I am 30 years old and so far -2.6. The Dr.'s are concercened that I will fracture my hips from the weight of the baby if I get pregnany. It is my dream to have 1 or 2 more children. I have 1 now. I do not have Osteoporosis in my spine.. but I do have it in my hips pretty bad. Was this a concern for the Dr's for you at all?

By CindyBindi
Posted January 22, 2009 at 5:53 pm
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Don't let the word idiopathic scare you. No known cause really means that your doctors don't know what specifically caused it. Of course there is a cause, and you are intelligent enough to research further into the matter. Sometimes, patients come up with the answers that their doctor's overlook. If you come to this point, present your doctor with all the evidence (medical research, clinical studies, medical journals, etc.) to support your theory. Doctors put much more weight on something that is backed by evidence than guess-work.

By CindyBindi
Posted January 22, 2009 at 5:33 pm
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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.

By waters
Posted January 22, 2009 at 2:43 pm
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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

By LindaS
Posted January 22, 2009 at 11:22 am
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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.

By justfortoday
Posted January 21, 2009 at 9:03 pm
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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.

By Wendyday
Posted January 21, 2009 at 1:34 pm
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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?

By scallicoatte
Posted April 28, 2008 at 8:51 am
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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.

By dithyroo
Posted April 26, 2008 at 12:56 pm
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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.

By Jacqueline
Posted April 20, 2008 at 11:06 pm
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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.

By sunny1
Posted April 19, 2008 at 4:20 pm
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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

By oreo
Posted April 16, 2008 at 2:26 pm
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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.

By scallicoatte
Posted April 16, 2008 at 8:27 am
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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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