Here's a crazy thought. What if LOTS of young women have this disease, but we simply don't know about it because they aren't tested? What if this is not as "rare" as it seems?
Maybe those of us with less dense bones are simply ahead of the game because we found out at a young age, so we can help protect ourselves and be careful as we age. Maybe women who are getting tested at age 55 have had low bone density for 20-30 years, but they just never knew about it.
It's possible, right? The truth is that there's simply no data on people like us. And yet we're terrified and feeling extremely vulnerable... and perhaps that's not entirely necessary.
I don't mean to dismiss the seriousness of this disease. I was devastated when I received my diagnosis at age 27. Now age 30, I'm still single without children, and reading about the struggles of those who have children, and those who want to have more, has really opened my eyes to some serious risks I will face in the future. These things are very real, and very serious.
But, my life hasn't changed much in the last three years. Aside from exercise, calcium, all the stuff we read about, what more can we really do? Why live feeling scared and vulnerable any day when, really, we can't do ANYTHING about this?
Here's a bit more about my story, and I would certainly love any advice and recommendations you have.
From age 25-28, I battled bulimia. I was on the Pill for part of that time, so I never missed periods. But I was about 15 lbs below a healthy weight. My doctor could see I was struggling and prescribed a DEXA scan, among other things (very proactive on her part). All tests came back healthy except the DEXA. I was shocked and terrified.
After I was diagnosed , I first saw a rheumatologist in Washington, DC, who recommended the typical stuff (exercise, calcium, blah blah) and another DEXA in a year. Didn't want to put me on osteo meds because of my age. One year later, my DEXA scores were the same, despite the fact that I was at a healthy weight, participated in consistent weight-baring exercise (3-4 times/week for one hour), cut out all soda and caffeine, taken calcium supplements, and even paid for 5 months of acupuncture and Chinese herbal supplements.
I then saw an endocrinologist, who ran the battery of tests and determined that I do not have a secondary illness. They did a brain scan - no tumor on my pituitary. There's no history of osteoporosis in my family, and my Mom just got a healthy DEXA reading at age 56. My vitamin levels have remained healthy. And I have never broken a bone.
The endo's feedback surprised me: He's not concerned. He said that several factors contribute to broken bones and other negative side effects of osteo. Younger bones, no matter how dense, are more flexible and less brittle than older bones. He said perhaps I was just born with less dense bones, and that there is no data to help determine if this is rare. He did not want to put me on any medication because he feels the risk is too high - no long-term studies to determine if these drugs are harmful for young women.
He put me back on the birth control pill (I had stopped taking it due to headaches). This is to regulate my estrogen, as it seems that my body doesn't produce enough without the Pill. Even now, three years later with the Pill, I miss periods. My Ob/Gyn says this is normal as well, and that so long as I am taking the Pill, I am getting the estrogen benefits that help protect my bones.
Reading this board has me thinking I should visit a new doctor. I have moved from Washington, DC, to San Francisco and may seek out a third opinion. I'm just curious to hear reactions from you and if you have any recommendations for doctors in my area.
As an aside, the experts have said that because I developed the eating disorder so late in life (rather than as an adolescent or college student), it's not likely to have completely "caused" the bone disease. Especially in only 3 years.
Other considerations: I have never been overweight. I have a very small frame (5'1") and have always been athletic. When not on the Pill, I got my periods every 45 days or so, and they were very light. They started at age 12. I am not on any other medications and maintain a very healthy diet. I do cardio-kickboxing 4 times a week for an hour.
Any and all advice is welcome. Thanks for listening!
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What if this is actually "normal"?
- By jax4short
- Posted March 21, 2009 at 9:38 pm · 14 replies
- In Premenopausal women (ages 25-50) with osteoporosis
- Shared with the public
- Edited March 21, 2009 at 10:08 pm
Explore topics in this discussion:
Exercise Arthritis Boniva Back pain Forteo Fractures Physical therapy Reclast Menopause Pain Acupuncture Osteoporosis Cortisol Bulimia Stress
14 replies
- Oldest first
- Newest first
- By justfortoday
- Posted March 21, 2009 at 10:24 pm
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I have thought some of these things also. Exactly what is "normal". It seems there are so many people which are coming up outside of normal range on these tests many which have never broken bones. I would be very curious to learn how the norm reference group was formed. This is group of patients we are compared to on the DEXA. How big was the group for example. If anyone has info on this, it would be great.
- By PikaB
- Posted March 22, 2009 at 1:33 pm
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According to one of the charts at http://courses.washington.edu/bonephys/opbmd.html#tz , only 1% of US Caucasian women of age 25 have osteoporosis.
- By Loods
- Posted March 22, 2009 at 2:09 pm
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I couldn't agree more. I am sure there are millions of people walking around with osteoporosis and will only find out if they break a bone or (like myself) have a scan.
Are we better off for knowing? That is a difficult one because the medication on offer at the moment doesn't seem to offer the cure we all hope for.
It sometimes feels that no matter what you do, whether it is diet, exercise or medication it still makes little difference. You are either lucky or unlucky whether you break or not.
Of course the additional stress of knowing you have Osteoporosis doesn't help. It can be all consuming, so I try to live my life pre-diagnosis, just with a bit of extra care.
- By catwoman
- Posted March 22, 2009 at 3:55 pm
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I agree! I've long suspected that I've had low bone density from an early age. When I was a kid I broke 8 fingers and an arm at various different times- and I was NOT a super active kid who played rough. No- one mentioned osteo or anything at the time- just set the bones and let them heal. But I'm wondering if my T scores now may be no worse than they were when I was 8 years old- I just don't have a baseline!
- By Gatekeeper
- Posted March 22, 2009 at 5:41 pm
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Mankind has been studying the human body since way back before they could see cells or even had a clue which organs did what. Over time, hundreds of years and all those millions of bodies, I'm sure it was noticed that the majority of bones/organs had a certain "look" to them, if you know what I mean. :)
Jax, imho, I think you're better off for knowing, perhaps the supplements, vitamins and better diet have made it so you've stopped losing bone? Perhaps in the years to come you will gain. I would think that being low in estrogen would be a big factor since many of us start losing bone when we hit menopause. If your mom isn't also low in estrogen or of menopausal age, it doesn't surprise me that she would not be one of us osteo-gals (yet). :-}
Re: New doctor. Look for a female doctor who specializes in women's health and has knowledge on herbal supplements. San Francisco surely has someone of that ink. ~ JJ
- By jax4short
- Posted March 22, 2009 at 9:03 pm
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We are barely scratching the surface in terms of our understanding on overall health and wellness. So I have to disagree with the idea that we would've 'figured this out.' Further, only a DEXA scan, which hasn't been around long, is the very trusted source of information on bone density. X-rays often do not tell the story for us.
Regardless, I think awareness is obviously a plus. I just think we are all reacting rather blindly to the diagnosis, and in some cases, experiencing a great deal of anguish. And yet... for all we know, we have lived very healthy and productive lives with low bone density since the dawn of time.
- By JilleWhite
- Posted March 22, 2009 at 10:17 pm
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I don't have time to read all of the posts here on this subject, BUT believe it or not, I've had two drs. tell me the same thing. Since I have had no fractures, they toss around this idea that maybe my bones may be strong even though they look so weak. The way we discovered mine was severe back pain, and in an xray it showed up! Obviously with the percentage of loss that I had I needed some help, but they are wondering if, as a whole, just because a woman's bones may not be at 100% does that make them "bad"???
- By jax4short
- Posted March 22, 2009 at 11:57 pm
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To Jill's point, the doctor told me that while my bones lacked density, they very well may be flexible and therefore less likely to break. He said bones have several characteristics, and density is just one of them. As I age, he said, I will definitely need to be careful and be mindful, but this diagnosis doesn't mean I'll shatter my hips or wrists any time soon. As I mentioned earlier, I've never broken a bone. Even still, and I participate in high-intensity cardio kickboxing (hitting bags, etc) several times a week.
Just hopefully a bit encouraging to others who may be feeling "doomed" right now post-early diagnosis.
- By SequoiaHealth
- Posted March 23, 2009 at 7:07 am
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Hi jax4short:
After reading The Myth of Osteoporosis by Gillian Sanson, (which I recommend by the way) I would say the trend is just the opposite. There are many more women given a "diagnosis" of osteoporosis that probably have no real risk of fracture.
Remember, the DEXA scan only measures bone density, not bone strength. So there is much controversy as to how valid the DEXA really is in determining future fracture. If you think about it, fracture is your main concern anyway.
As for treatment, we have had good results with women who have a program that includes:
1. A diet that contains more fruits and vegetables. Fruits and veggies contain greater amounts of water and minerals with generally lesser amounts of animal protein.
2. Adequate water intake. Water is very important in helping the kidneys regulate pH and detoxify the body.
3. Stress reduction activities to help lower Cortisol and reduce calcium loss.
4. Year round vitamin D3 levels in the 50–80 ng/mL (or 125–200 nM/L) as confirmed by 25-hydroxyvitamin D testing.
5. Sufficient weight bearing exercise to stimulate muscle growth which is essential for bone strengthening determined by regular full body strength testing.
Hope this helps.
Woody McMahon
Reston/Herndon Osteoporosis Support Group Leader
- By jax4short
- Posted March 23, 2009 at 11:33 am
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Woody, so given your finding, what does this mean for the diagnosis? If we aren't at risk for fracture, then aside from what you recommended above, is there anything more we can and should do? I don't want to 'pretend' that everything is just fine, but it seems like that could be the case.
- By April995
- Posted March 23, 2009 at 7:03 pm
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Hi Jax,
You make a good point.
I had a DEXA a few years back and they said I was Osteopina. Last year the DEXA said I was Osteoporosis. Was told I should have Reclast, or Forteo (it freaked me out!)
My Dr wanted me to have the DEXA cause I compressed a vertabra (think it was that) in my lower back by twisting putting a plate in my deep dishwasher.
I was so sick for two weeks taking Boniva. I'm not doing that again.
But I go to Physical therapy, and was told by my Drs. and P.T. NOT to twist at the waist.
I'm 66yrs.
They call Osteo the silent killer (nice huh!), but I have now noticed I have allot of Arthritis, which hurts at different times!
I have started taking Strontium, D3 2000 iu to 4000 aday, Mag, and two different types of Calcium, & C..
this is just for the Osteo.
I have NEVER drink Soda, coffee, smoked, etc.
That being said, since the Drs. told me I have Osteo, I'm scared to do anything, and its depressing.
I like to Garden etc. and spring is coming up.
At this point, I say hell with the Osteo, I'm doing what I want, but I'am going to be careful not to twist at the waist.
Btw Estrogen is stored in the Fat Cells, and since Your thin, maybe that is reason yours is low!!
I have always been under a 100 lbs, for many years 86 lbs, then 92 lbs. (not in the last 10 yrs. now about 128 lbs. I use to be 5'2 3/4, now I'm 5'1..I'm Very smalled boned, and have a hard time finding shoes that run narrow. Anyone have a suggested for that, and I like stylish shoes!
Have you lost any hight?
I went through a natural menapause at 38yrs. I started taking E&P at 48 Cause the hot flashes where so bad. Took it for almost 10 yrs. Not sure if that helped me or not!
But I use to be allot more active then I am now since the Drs said I have Osteoporosis.
Take care,
April
- By Gatekeeper
- Posted March 23, 2009 at 11:40 pm
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April, I'm with you on doing what you love. I know I've often pulled a muscle or hurt my back being too impatient for one of my guys to help me pull a plant from the pond, or some other task. I suppose if I got hurt bad enough that my acupuncturist and/or muscle relaxer can't fix perhaps I'll slow down. ;-) ~ JJ
- By SequoiaHealth
- Posted March 27, 2009 at 11:22 am
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Hi Jax:
When you say, “is there anything more we can do?” 90% of the women I have worked with are NOT doing the basic 5 lifestyle changes I have outlined for you. We have to get the lifestyle changes in place even for medication to work properly. They are not an afterthought. The lifestyle changes mentioned above are extremely important to integrate into your program
Based on the research; bone density is not an absolute predictor of fracture. Fracture is a good predictor of fracture.
Sadly, the reaction most women have with an osteoporosis diagnosis is to go into protect mode. They get less active reducing muscle and bone strength.
Always remember, healthy bones are a result of a healthy body. Bones don’t reduce density just because they feel like it. There is always at least one (usually more) cause.
Hope this helps.
Woody McMahon
Reston/Herndon Osteoporosis Support Group Leader
- By jax4short
- Posted March 27, 2009 at 4:24 pm
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That makes perfect sense. Thank you. I'm surprised to hear that women seem to close down and ignore the fundamentals post-diagnosis. I by no means want to support that thinking.
On the contrary, I guess I've felt frustrated because I continue to 'follow the rules' and maintain a very healthy and active lifestyle, and yet, I wish I could do more to protect myself further. I feel like it's simply not enough, because despite my actions, I have found myself among those diagnosed. So I simply want to encourage women who HAVE done all the right things to push for further information from medical professionals about why we have low bone density.
In sum, it seems that even healthy, active women can have low bone density... so, perhaps the bone density measurement is less relevant than the other components. Rather than stress the osteo test results, we should really be looking at all the OTHER tests.
Are we basically on the same page, Woody?
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