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Old 12-23-2007, 12:19 PM   #1
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Anyone Else With Osteoporosis at a Young Age? Cause?

Hello,
I am new to this board and so thankful to have a resource and community of people who understand what I'm going through.

I happened to come across this board while searching for more information. I have finally realized I need to take charge of this condition. After being referred to specialist after specialist and completed test after test, noone has been able to find a cause for my osteoporosis. Every test comes back "normal." However, what is not normal is that I was diagnosed with this at age 21 when things were already so bad I got a hip fracture after a jog one day. Since then, the only medication that gave me significant improvement was forteo, but when I stopped that, my scores went south again.

I don't want to be too long-winded with my first post, but I am just trying to find out if there are other young people with this condition and if so, are there any illnesses that could cause this? They've ruled out Celiac Disease, Chron's (sp?) Vit D and Calcium deficiency, absorbtion problems, bone biopsies, liver CT scan and probably more I can't remember right now. In college, I had not been eating healthy and exercising too much, but it's been almost 10 years since then and I have long since abandoned those unhealthy eating patterns.

I'm meeting with my GP next week and would plan to have lots of info to see where we can go from here. Any information you can provide, would be greatly appreciated!!

Thank you.

 
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Old 12-23-2007, 03:26 PM   #2
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Hi,
While I don't fit into the "young age" category I did take Forteo and had improvement. Like you, as soon as I stopped taking it my scores were worse than when I started. Mine may be due to menopause though. I hope you find out the cause and find a treatment that will help you. Forteo is great but only a time limited treatment.

 
Old 12-23-2007, 06:21 PM   #3
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Hi atmdg: Welcome to the board, glad you could join us!!! Have you tried looking up secondary causes of osteo, at the library or other places (book stores etc)? It sounds like they've checked a lot of things, but you didn't mention thyroid or parathyroid problems. Usually when you have this with an unknown origin they check all the things you mentioned, plus thyroid/parathyroid. Are you still menstruating? If not that can definitely cause a drop in your bmd. How about any arthritis, or other autoimmune problems like rheumatiod arthritis, lupus? Both of these types of arthritis can cause bone probs. Do you have scoliosis, or dengerative disc disease? If you look at another thread here I listed quite a few of the secondary causes, but I didn't list them all since there are so many of them. Also ankylosing spondilits, which is a auto immune disorder that can cause this as well.

Have you taken any corticosteroids, like prednisone, or cortisone for "long" periods of time on a daily basis? Steriod induced osteo is another type or cause, which Forteo works well for. Deproprovera, also causes some osteo, did you ever take that (long acting birth control)? Another one to check might be osteomalacia, which is a similar disorder but different in how it manifests, since it's considered a "soft bone" disorder.


I've been taking Forteo for 19 months and have great results, but like everyone else I have to find something at the end of 24 mos, to follow up with so I don't loose my gains.

Unfortunately being young and having osteo isn't unusual anymore. Recently it has been classified as a juvenile disorder, and there are others here, that post, who are young, just go back a couple of screens or do a search on the young people with osteo, using the healthboards search feature at the top of the opening screen.

I found out I had it in my 30's from a bone biopsy, but I only "continued" to take vits (cal, phos, D, multiple, mag, K2 etc) and exercised, but it didn't work for me, but for some this approach works so don't go by my results. It wasn't until I had a QCT, 15 years later, that I found out what my bmd was, and unfortunately I didn't take the first dx very seriously, in my early 30's plus there were no drugs then anyway, or dxa's. I also went through early meno and have a family history of it, plus a lot of the bone probs I mentioned above that can cause it.

Good luck with you next move, if I think of any others I'll repost. Look at the post below and check out what was said there about secondary causes.

[url]http://www.healthboards.com/boards/showthread.php?t=562550[/url]

Sorry this is so long winded, put if you stick around, which we really hope you do, you'll notice all my posts are like that I just did a search on this board using "young people and osteo" and it pulled up people in the age range of 10, 19, 22, 25, 27, 29, 30 etc. I'm sure you could find even more than that. There are also some with even younger children with juvenile osteo at 5 years of age. Unfortunately young people get osteoporosis to, which they mainly blame on lack of exercise, due to computers, less sunshine, and poor eating habits.



Last edited by DesertBloom; 12-23-2007 at 07:21 PM.

 
Old 12-24-2007, 04:57 AM   #4
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Hi atmgd! I am fairly new here also but just wanted to drop in and say I was diagnosed with osteoporosis via DEXA scan in August 2006 (t scores -3.2 spine and -1.8 hip) at 34 years of age. All the conventional tests they ran for me were normal also, with the exception of my hormone levels (estrogen, testosterone, and progesterone levels). I did have a complete hysterectomy/oopherectomy a year prior to the dexa but have been on hormone replacement. Nevertheless, it was not being absorbed correctly. Also, since it had only been a year between my hysterectomy and dexa scan, I am assuming the process of bone loss started much earlier. My other risk factors include hypothyroidism and being treated with synthroid for over 18 years, being a bit underweight and a history of anorexia in my teens, being lactose intolerant (therefore not getting enough calcium through diet), having endometriosis on my ovaries so that they were not functioning optimally, taking various birth control forms, family history.
I also have delt with depression for years and have discovered this condition can also cause bone loss. Ironically, new studies are showing that some of the anti depressants used to treat depression can cause bone loss as well, specifically the SSRIS.

There just is no concrete reason for me either, but I did find that upping my calcium intake, increasing my vitamin D daily intake, weight bearing exercise, maintaining a normal body weight and a healthier diet, and taking a stronger hormone replacement and getting my estrogen levels back up there all led to an improved dexa scan result this last September (-3.0 in spine and -1.4 in hip). I have not had any fractures yet (that I am aware of) but do suffer with fibromyalgia and have constant pain in my muscles and joints. I also have a stooped posture and rounded back and will be starting physical therapy and pain management in January. Exercise is a challenge but I still do it.

I hope you get things figured out and find a treatment plan that works for you! It is hard to have to deal with this at such a young age and not know what the future holds. All we can do is the best we can! Good luck to you and welcome to the group!
Elaine

Last edited by moderator2; 12-24-2007 at 05:22 AM. Reason: posted commercial website

 
Old 12-24-2007, 09:59 AM   #5
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

ATMGD-Welcome to this board. I feel for you with osteoporosis at an early age. But, I am hoping that the doctors will figure out your situation and that you will be able to get effective treatment. DesertBloom, wrote you a good message and you may want to check what she recently wrote to JJ95 a few days ago about questions to ask the doctor.You said that you had improvement with forteo but stopped and the numbers went down. Did you follow up the forteo with any other drug to maintain your gains? One thing that I would say with my osteo experience is that just keep pursuing what you need until you feel that you have found a doctor who is competent to help you , and that you feel you can communicate with. It may take some time , or not- in any event, you owe it to yourself to get answers . I wish you the best on this journey and hope that you have a Merry Christmas.
Elaine- Welcome to you too!! I am so glad to hear that you have had such good improvement with hormone therapy. I am about 20 years older than you are . I too have osteo with some not great numbers and am now on forteo. I also have hypothyroid , though I was diagnosed only recently. It sounds like you are really on the right track though with the recent dexa improvement! Was the dexa done on the same machine that you were checked on previously? I am now post meno and had not done hormone therapy. But for various reasons I feel that now is the time and have seen a specialist to get this going. The doctor wants me to check with the bone specialist , a rheum., to make sure it is ok to start now while on the forteo. Could I ask what hormone therapy you are on? How has it gone for you?
It is great that you will start pt soon. I have received so much help and encouragement from phys. therapy. You do , however need to be careful that your pt has experience/ knowledge with osteo. From my research that started over a year ago, I found that Sara Meeks is very highly regarded in the field of pt for osteo. She is inFla but travels throughout the US to train therapists. You can do a search on her name and learn quite a bit about her program. I bought her book , it is a small book called Walk Tall. Two therapists I have seen were trained by Sara and use her program. With your stooped posture , I think you would like the program . She has a series of resistance band exercises that you do each day, in a lying down position. My husband and therapist say that over this past year they have seen a big difference in my posture. Also Sara's book has an excellent section on how to modify daily activities to do them more safely. Somehow it just settled me down somewhat to know that I was moving more safely and on a good program that I could work with. I highly recommend her program. You can also check with Sara for a recommendation for someone she trained in your area. I live outside a major metro area no where near Fl. In my med. size city, I found several ther. trained by Sara. In the major metro at the best outpatient pt clinic , the 2 ther. running the osteo program were trained by Sara and the pt told me Sara is considered the best. I wish you the BEST with your phys. therapy! Merry Christmas

Last edited by osteoblast; 12-24-2007 at 10:03 AM.

 
Old 12-24-2007, 12:14 PM   #6
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Thank you all for your welcome to the group and advice! And so quickly too. There is a lot of positivity here and it is comforting to know that others understand where you are coming from. It gives me renewed hope that not all is lost, and that I just need to keep searching for a treatment that is effective for me. I am definitely going to comb through this message board to read prior posts and follow up on the links mentioned. I had no idea that osteo was that prevalent in younger and younger people these days.

When I stopped the forteo after the time limit I started back on Fosamax, however my husband and I wanted to start a family and we asked several doctors if they knew what/if any effects there would be after taking these medications. Noone was able to give any specifics about how long these meds stayed in the body, but they did tell me I shouldn't take while I was pregnant so I stopped the Fosamax to give as much time as possible (and being that my scores were so good I didn't worry about that). I became pregnant in August 2006 and throughout the pregnancy I tried to keep my Calcium + D intake especially high. Our son was born this year and so far thankfully, he seems very healthy. I know that a good portion of my calcium resources were depleted by my pregnancy and nursing, I just didn't think it would be that much. My DX in 2006 after Forteo was my best ever -0.7 hip and -1.3 spine and a year after that it was -1.1 hip and -2.3 spine; it is still better than at my worst when they first diagnosed in 1998 of -1.8 hip and -3.6 spine.

I have to look back at my medical records and confirm, but I do think they checked my hormone levels and thyroid function and that has always been within normal range. However, at an early age I had irregular menstrual cycle and they put me on many birth control pills (never the shots or other long acting kind). Perhaps this is an area I need to explore.

DesertBloom, thank you for your list of other illness that could cause osteo. I'm definitely going to do more research on that. I have not been on steroids or experienced joint problems, but something else might stick out for me. The only consistent anomaly throughout everything is slightly elevated liver enzymes. They were only slightly above normal and never seemed to cause any docs concern, but given the osteo, I'm looking into everything!

I want to wish everyone a very Merry Christmas or Happy Holidays and a wonderful 2008!

 
Old 12-28-2007, 03:30 PM   #7
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Hi, ATMGD,

I'm young, I guess, 34. This all started for me 10 years ago, well at least my first onset of pain that was most likely a compression fracture. It happened after I bent over to pick up my then 2-month old son. I went to several doctors at that time but of course this was never considered since I was 24. I even had a bone scan!! I gave up. I went on to have 2 more children and nursed all 3 and I don't have periods while I'm nursing. I guess if this would have came about after my third child, it would make sense, but I first started having real symptoms after my first and only 2 months into nursing. But I took extra calcium along with my prenatal vitamins, because I've always been paranoid about bone loss. So now, after a kyphoplasty 2 weeks ago, I'm looking into Forteo but I also feel like I need to find an endocrinologist to find out what's really going on underneath it all. I feel there has to be a real cause because I just don't feel it's that normal. Or at least it shouldn't be. I refused the Fosamax. I just didn't like the way it sounded. And as crazy as it seems, I'd love another child! Go figure.

My DEXA score is -2.4 overall, some better areas, some worse.

 
Old 12-28-2007, 03:32 PM   #8
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Hi again, I'm considering getting tested for celiac sprue. This could explain malabsorption.

 
Old 01-07-2008, 06:19 PM   #9
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Hi,

I stopped by to see what's up on this board. I'm kinda young. 48 and not postmenopausal quite yet although I did have a hysterectomy with one ovary removed in my early 30's. Menopause is looming and my hormone levels are just starting to bounce but I was just diagnosed a little over a month ago when one of the docs thought it would be a good idea to do a bone density scan. I have higher than normal density in the spine but my hips and femurs ain't doing too well at all. I have no idea how long I've had a problem.

I am hyperthyroid. Well, mostly. I also have some hypothyroid thrown in. I have a condition known as pituitary resistance to thyroid hormone. Had it all my life. I also got diagnosed with chronic (15 years) renal tubular acidosis this last fall. A vitamin d deficiency was also picked up although I'm a milk drinker and love the sun. Oh, let's add 2 years of prednisone in my mid 20's. I've also developed diabetes with no family history. I'm considered petite and my mom has severe osteoporosis. My gp says that every one of my problems is related to the thyroid condition.

I was started on once monthly Boniva by the endo who was more concerned with the osteo than the thryoid and just had my second dose on the first of the month. I'm also experiencing severe pain throughout my body right now which started the other day. I'm beginning to wonder if the Boniva's the right route to take After reading up on it today, I'm even more confused. I found it interesting how it greatly reduces the number of spine fractures but when you look at the actual numbers on the hip and femur fractures, people on placebo seem to fair a tiny bit better even though it increases the bone density in those areas. Did I read right?

Stephie, I was tested for celiac in October. Negative. But from what I've read, it can cause severe malabsorption. It's worth looking into.

 
Old 01-07-2008, 07:32 PM   #10
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Access Hi and Welcome to the Osteo Board ! I know you and appreciate you from the Thyroid Board. Sorry to hear about your diagnosis. Luckily though your spine is ok and it is just the hips. Knowing what an exellent researcher you are, I can well imagine that you did a great job researching Boniva. I expect to be starting a bisphos. soon and expect it will probably be Actonel. While I have a very poor dexa number -3.4 on the spine , my hips are into osteoporosis as well but more like 2.7 or so.I can't recall exactly right now. I have had so many dexas and on different machines , so there have been alot of numbers and I just focus now on what I can do about it. Also I have been on forteo now for a little over a yr.Anyway I recently read an article that may be of interest to you and others in making your decision--The article is titled"Study of Over 33,000 Women Comparing Two Most Prescribed Osteoporosis Treatments Shows Significant Difference in Hip Fracture Reduction." There is a sub title"Actonel almost halves the risk of breaking a hip when compared to Alendronate in the First Year of Treatment." Also I read another article that I will try to find again and post the title that talked about the various bisphos. , and a Doctor from Cleveland Clinic with the Women's Health Center said that recent studies supported her view that Actonel was her #1 choice, Fosamax a close #2, and Boniva #3. And, I have also read another article that talked about Actonel having fewer gi upset issues than fosamax. A number of people on this board are also using strontium which you may find interesting as well.There is alot to research in this field and sometimes research seems to directly contradict what seemed settled a few months earlier.So, I know you will have plenty of fun researching! Sometimes it seems the doctors and researchers are only just beginning to understand how the drugs work-even those that have been out on the market for quite some time. Again, welcome to the board !

 
Old 01-08-2008, 02:43 AM   #11
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Hey osteo, so good to see a familiar face. Was just hoping I wouldn't have to join yet another board. It's been one yuck year spent gathering all these diagnosis and I'm running out of research time. But it's amazing how all these things can be so interconnected. Thanks for the pointers.

I did something I don't often do and took the boniva on blind faith. I got the diagnosis while my mom was in the hospital after falling and breaking something for the third time in 6 weeks. When they did a ct to find out why she was falling, they found a bleed in her brain and all hell broke loose as they whisked her by helicopter to the trauma center. We almost lost her. She spent a month and a half in icu. She's home now and doing better.

Yesterday's the first time I really had a chance to read about boniva. I was trying to figure out this awful pain that started the other day. I wasn't real happy with what I read. I shall be back among you with a thread of my own. I have a million questions. I have to get ready to go terrify a dentist today. For some reason, they're scared to death to work on me but I had 3 teeth break on me recently and it's time to do something about em. Perhaps another connection???

 
Old 01-08-2008, 03:10 PM   #12
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Access-I am sorry to hear that it has been such a difficult time for you. Thankfully, your mom is home and doing better. I wish you the best with the dental issues and look forward to your thread here.

Last edited by osteoblast; 01-08-2008 at 03:11 PM.

 
Old 01-08-2008, 07:46 PM   #13
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Hi accessn12: Welcome to the board!!! That's so heartbreaking to hear about your mom, I know how tough that can be, since loosing both my parents to a similar situation. Hang in there and I hope she continues to improve.

Sometimes we have to do things on blind faith, but if you are having symptoms that are unbearable to live with, at least you know they are true side effects. Don't get me wrong but sometimes our minds can contribute to the effects we sustain, but if you didn't read about those side effects until after they manifested, at least you know they are biological reactions and not something our fantastic mind can conjure up, even though those type of effects are as real as those caused by the rest of our bodies. Do you get my drift? Hope so. Maybe I took too much psychology in college. Good luck with whatever treatment you decide on.

 
Old 01-09-2008, 03:26 AM   #14
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Re: Anyone Else With Osteoporosis at a Young Age? Cause?

Hi desertbloom. It's nice to meet you. I took a bunch of pshychology too. The mind is an incredible tool. Not only in the way it can trip you up but also in the way it can help you. There isn't a medical condition out there that the mind doesn't play at least some role in. I'm a strong believer in the power of positive thinking. I knew about the stomach effects cause I've been listening to sally fields for years now. However, I have a stomach of steel. I figured no prob. This pain literally took me to the floor. Couldn't stay there though cause that set off new waves of spasms. Why doesn't sally talk about that? Something tells me I've got a lot to learn.

 
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