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My question is about having osteopenia. I am 41 an recieved this disagonsis a couple of months ago. My doctors don't reallyseem interested if findong the cause. since I am not post menapausal am I correct in thinking that the ostepenia was caused by something else. If that is true can you tell me somethings that I should be looking for.
thanks
karenwb2
Exercise Celiac disease Surgery Osteopenia Provera Menopause Progesterone Cushing's syndrome Osteoporosis Cortisol Stress Asthma Heart disease Hysterectomy Arthritis Forteo Reclast Actonel Depression Dieting Hypothyroidism
Karen,
Cushing's Syndrome is a long shot, but doesn't hurt to read a little bit about it. You can ask you doctor for more information if it seems like a possibility. Here's a link to the Mayo Clinic site: http://www.mayoclinic.com/health/cushings-syndrome/DS00470
Your doctor may not want to test you for it because it's not too common. I read somewhere that only 10 in a million get it. But like the ads for the lottery say, "some lucky dog's gonna win it."
My earliest visible symptom was 30 pounds weight gain in just a few months, with no change of diet or eating habits. Symptoms besides osteoporosis can include weight gain, depression or moodiness, high BP and cholesterol, weakening of core body muscles-especially thighs, and more that you can read about on the Mayo site. For me this probably started sometime in my late 30's, early 40's.
Some things not mentioned on any of the lists include (for me, anyway) constant bloated feeling and swelling of legs and ankles. These two were gone within a week of my adrenalectomy. 60 pounds gone in 1 year, 2 months, with no dieting.
Good luck to you Karen. This website has a lot of interesting information. Hopefully you will find some answers here. Even if you don't find a cause for your osteopenia, keep on top of things.
Susan, thanks so much for taking the time to answer me and yes, I read the whole thing. I didnot skip down to the bottom. Since I last wrote that I hae gone back to the doctor and talked to him about how I feel and what is possibility going on. He was sure that it was my thyroid also. Well the test came back that my thyroid was fine. But the symptoms are no better. Plus in 10 months time I have gained 18 pounds. He feels that the reason why I am still feeling bad is because of the weight gain. I donot feel that is the isue my eating habits havenot changed and actually i do exercise more than ever. so the weight gain is a serious bother to me. But i dont know if you get this way but I feel like people want to tell me that it is all in my mind so once again I am starting to keep it to myself. But thanks so much for your thoughts and I will keep it in mind.
thanks once agin,
karen
Karen,
(Scroll to the end if you don't want to read all this blah, blah, blah.)
I found out I had osteopenia in my early-mid forties but nobody was particularly interested in finding out why. I didn't worry too much because my doctors weren't worried. I attributed it to several years' of drinking copius amounts of diet Coke, plus several months' of heavy-duty hormone injections (to simulate faux menopause). I cut out the Coke and started taking calcium supplements.
Then three years later I started breaking bones. After breaking a wrist, and eight months later, two bones in my elbow, another DXA scan showed 10% improvement! No doctors seemed too concerned about my breaking bones. Six months later I broke my elbow again. Oops!
Over a five-six year time span I had a huge weight gain (60 lbs) and my blood pressure and cholesterol went through the roof (at one point bp was 200 over 100something). My pulse, at rest (before medication) was anywhere from 90-120 beats per minute. My doctor said "stop eating so much fat" and "exercise." I also had a partial hysterectomy (leaving one ovary).
A couple of years later I had a physical for a new job, and that doctor said he thought I had something wrong with my thyroid. A month later I saw my new primary care doctor, and he said there was something wrong other than my thyroid. In two visits he figured out I had a large tumor on my adrenal gland that was producing 10X the normal amount of cortisol (a catabolic steroid--has opposite effects of Barry Bonds' anabolic steroids.) My condition was Cushing's Syndrome, and it causes osteoporosis (and more, Oh my!) and my endrocrinologist thinks I had it eight to ten years.
I now have full blown osteoporosis.
The moral of this story is:
1. Steroids can cause osteoporosis, either produced by your body in the form of excess cortisol, or drugs for asthma, arthritis, transplants, etc.
2. Stress can also cause you to produce too much cortisol (see #1 above).
Take care, Karen, and good luck. I admire you for being proactive. I wasn't and I regret it.
Susan
Hi Karen:
Risk of fracture is what you want to focus on. Was your fracture as a result of trauma? Remember, bone density is only one of many factors associated with osteoporosis /osteopenia. Some people have naturally low bone density but do not fracture; some just the opposite.
You should score yourself on FRAX which looks at risk of fracture before you decide to give-up too many activities. You can find the FRAX tool at http://www.shef.ac.uk/FRAX/ and go to Calculation Tool at the top.
The Myth of Osteoporosis by Gillian Sanson is a worthwhile read. She presents some compelling reasons to take the finger off the panic button and start looking at moving to a healthier lifestyle. She challenges the current thinking on the “diagnosis” of osteoporosis and brings up some interesting epidemiological studies that raise questions on DEXA scores.
The best website that fully describes the literature and current research on vitamin D is run by Dr. Cannel. The web address is www.vitmindcouncil.org
Osteoporosis/osteopenia is very much a lifestyle based condition. Making positive changes in your lifestyle will help you significantly. I have seen changes in lifestyle alone improve bone quality.
I always say to clients, ‘if you want healthy bones you need a healthy body.” I think you going to find that osteoporosis, just like heart disease and arthritis, are strongly affected by lifestyle. .
From my experience, changes in lifestyle are very important and cannot be overlooked. A healthy body requires what I call the “Big 5 for Bone Health” lifestyle changes. These are:
1. A diet that contains 50% fruits and vegetables. Fruits and veggies contain greater amounts of water and minerals with generally lesser amounts of
animal protein.
2. Adequate water intake for maximum hydration. Water is very important in helping the kidneys regulate pH and detoxify the body.
3. Daily stress reduction activities. This helps lower cortisol and homocysteine levels reducing calcium loss.
4. Year round vitamin D3 levels in the 50-80 ng/mL (or 125-200 nM/L).
This should be confirmed by 25-hydroxyvitamin D testing.
5. Sufficient weight bearing exercise to stimulate balance and muscle growth which is essential for bone strengthening determined by regular full body strength testing.
As always, no one change will give the results you seek. The body is too complicated and finely regulated for that to happen.
Woody McMahon
Reston/Herndon Osteoporosis Support Group Leader
Request blood test for celiac disease. Osteo is a common symptom and the cause for me. My report shows T scores. I am 34. Is Z scores better at my age? How do you get Z scores?
I am 29 and I have basicly been on the depo for 11 yrs now. I was off of it for a 1 1/2 before I finally got prenant but within that time I never had my period which since I have been on it I have not had. Any how, I now have a new problem! In the past year I have fractured my right foot 3 times and my left foot 1 time in just the one years time. The funny thing is: is I didn't do any thing to them eiather time. I am now seeing a new Dr. to whom found out I was on the depo and imeditly said I want you off that now!!! Thats your problem.. She said it casuses bone density problems and I now at the age of 29 now have osteoporosis and rumitiod arthritus because of the shot.
Hi April,
I was told by the endocrinologist that the diuretic has a side affect and that is it retains calcium in the system.. and it's a low dose so that I'm not running all the time...
I hadn't considered my irregular periods but I had them until my partial hysterectomy at age 33... so who knows how my hormones were doing.. I was originally told it was due to early menopause.... of course between then and now with mood swings after surgery they kept saying I was within range on my hormone levels... but I hear it's a pretty wide scale.. so I wonder if I just barely passed the finish line with those normal hormones...
I have had a density test since being on Forteo a year and have improved from a -3.8 to a -3.2. I am on it for another year... then she says maybe reclast yearly.... of course just read about it here.... lol... I'll talk about it with her when I have to....
So in essence we do have to keep pushing for our own health... if we don't who will? I never used to question a doctor but I sure have learned to now...
Hi Karen,
I'm still learning myself... and I wondered how you were Dx'd... I was under the impression that Drs will typically check bone density (with DXA) on younger women (like you) only for a reason, something "known" that could *cause* or *indicate* abnormally low-density bones. If they aren't talking about causes, and since you mentioned a fracture, I'm guessing they must think it was a "low impact/trauma" fracture, meaning whatever caused the fracture was thought to be too little force to fracture a "strong" bone (like if you hopped off a curb and landed square on your feet, and it caused fracture).
Having a low-impact fracture is serious business. I'm just a newbie at this and not a Dr! But it stands to reason that if there's an underlying cause that can be identified and safely treated, it's in your best interest to do so! That could effectively "plug some holes in the bucket," which would be a lot better than trying to add more & more water in the hopes it doesn't run out too fast.
I've also read that Drs will do DXA only if they intend to "treat" the patient if the scores warrant it, something like that. Didn't give this much thought when I read it, but I figured there may be cases where knowing this information (DXA results) may make no difference in treatment? And to some Drs, maybe "treatment" is just "write bone meds prescription" but I think that's far too short-sighted. I think if the bone density is "low" for the age/sex/ethnic/wt group (in other words, a Z Score of less than -1), "treatment" really should include other evaluations to determine if there's a treatable underlying cause! (Notice that's "Z" Score and not "T" Score)
That being said, here's another angle to consider. You haven't said what your (T or Z) scores are BUT according a chart I have, it's considered "normal" for some 40 yr old white females 25-100kg to have osteopenia in the hip. I don't know if this is "only/mostly the ones who have reached menopause" or what! One should ask a good Dr or bone scientist about this. If your Z Score is greater than -1 (like -0.5 or -0.1 or 0 or 0.5 etc.), this means you're statistically in the "normal" range (even though you have osteopenia --- based on your T Score of less than -1). This seems weird, to be labeled with a condition that's actually "normal" for some, but the definitions of osteopenia and osteoporosis are like that. I mention this because (depending on your Z Score) your Dr may think you're in the "normal-for-your-age" range, which could suggest there's no other causes to be looking for (chalk it up to age and menopause)!
But if you have a low-impact fracture then I would certainly think more investigation is warranted.
You're not crazy!! Please try other Doctors if you can --- it sounds like you really are NOT asking for too much, and I would like to think you can find a decent one there somewhere!
Don't be bashful about asking more questions in the group here; people are willing to help as they can and there's a lot of good knowledge being passed around --- not to mention moral support...
The few gals I know with osteoporosis and Z Scores less than -1 were tested (shortly after the DXA) to look at "possible causes" (blood and urine tests). I don't know why osteopenia would be any different, especially given your young age, and fracture.
Hope this helps some... if what I wrote isn't very clear then let me know so I can try again...
I want to thank everyone for there thoughts. It has been a hard go for me. The doctors that I have talked too, really seem not to know alot and are not really interested in the cause.
Chirp, you asked if I was Dx by dexa scan, yes I was. Does that make a difference? It only took 4 months after I hair line fractured my ankle. It is just so hard to find a doctor who is welling to look at the whole picture. but thanks to you guys I know that I am not crazy.
Once again thanks to everyone that answered me. I hope that I can repay you on day.
karen
Hi Karen,
There are many other causes to look for -- some relate to calcium and vitamin D (like you may not get enough or your body may not metabolize it properly for some reason)... some relate to hormones (low estrogen in pre-menopausal women, thyroid imbalances) ... use of steriods or Depo Provera ... several medical conditions ...
Many causes are described here:
http://www.webmd.com/osteoporosis/living-with-osteoporosis-7/causes
With menopause, women lose bone density faster. If you now have some other underlying cause you can identify and treat, it can really help in the long run.
Sometimes, the cause isn't known.
No matter what, you can make sure your diet, lifestyle, and exercise choices "tuned" to good bone health.
If your Dr isn't concerned about a cause, I would ask him/her why not. I would consider seeing another Dr if you're not satisfied. It seems like (from reading this site) a lot of Drs aren't up to speed on osteoporosis & osteopenia; it's up to us to be serious advocates for our health care.
Were you diagnosed based on a DXA bone density scan?
Hi Kathy,
I do not understand. If your taking a Diuretic how Calcium would stay in your kidneys longer, when a diuretic has you urinating more offen?
If your Dr. tested your urine, did it show up that most of your calcium was not being obsorbed, and going into your Kidneys?
I just found this on a Google search.
((Calcium enters the body through the small intestine and eventually is excreted via the kidney. Bone can act as a storage depot. This entire system is controlled through a feedback loop; individual hormones respond as needed to increase or decrease the serum calcium concentration.))
I went through a natural menapause at 38 years. When I started not getting my period on time, my Dr. took blood tests.
It showed up on a blood test, that my Estrogen & Progesterone etc. was low. Which is not good for your bones, and explained why I was not regular, and I was going through Menapause.
Since you have been taking Forteo have you had another Osteo scan?
If so, has your scores inproved?
Take Care,
April
Karen,
I agree with Kathy, I would be proactive and try to find out what is the underlying cause of your low bone density. I was in the osteopenia stage 4 years ago and now I have full blown osteoporosis and my doctors were NOT the ones to ask for the most recent bone scan...I was!!! I know what caused mine...I had many risk factors...menopause, hypothyroidism, genetics. Unfortunately, I am on bone building meds now.
My advice to you is to do your research on calcium and start taking it on a daily basis and stay on top of your bone scans...I would have one done annually if your insurance allows. I wish I had done this it might have saved me from ended up where I am now.
I am optimistic though...I am taking Ezorb Calcium and so are some others here on the message board. Some have experienced excellent results so I am hoping I will too and maybe be able to come off of my Actonel.
Good luck!
Andrea
Karen,
I found out I had osteo a year ago and I am postmenopausal... the doc didn't seem interested in how I got it either... lol... but I was... being the analytical soul that I am and because my insurance allows for me to go see other specialists w/o a reference I did just that... I'm not sure if your insurance gives you that freedom but maybe checking with a Rheumatologist to eliminate causes would be good... If you can at this point get on your supplements have a yearly screening to see what direction you're headed is definitely in order. I think as we get older we realize that we have to take control of our health whether our docs see importance in it or not... keep checking into it...
Just to let you know that I was told that it was due to early menopause, but what I was able to discover is that it is due to the kidneys not retaining calcium... so I take a diuretic to help hold it back in the system... along with Forteo and calcium supps...
Karen,
In my case, I had Celiac Disease (gluten intolerance) and never was able to absorb much calcium (or anything else). This led to my OP eventually.
However, you being female, I think there are many more secondary causes? Come on gals, feel free to chime in here.
Tom
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