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cralls posted:
I was diagnosed 2 years ago. I am a 34 year old male. Never smoke, no drugs, no alchohol, no meds, no family history. For 2 years I have been taking vitamin D and calcium. My scores have gradually declined from -3.2 to -3.4 on spine and -1.7 to -2.1 on hip since diagnosis. I currently see an endocrinologist. I was wondering if there is a specialist or facility that would be better at handling this or have a better chance of figuring out what the cause is. Of all the testing I have had (which is alot) , the only things that sticks out is my first vitamin D (when I didnt take supplement) was low at 24 and my testosterone was in the low normal at about 260. Took Test..shots for a year, but a second endo.. felt like it wasnt neccesary and took me off of it. At my age I really should stay above 650. I kind of lost on which direction to go with this now. I don't really want to take any bone meds., I just want to find if there is a cause before treating symptoms and the osteo.. Any help would be appreciated.
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bonebabe responded:
I'm hoping one of the WebMd site will weigh in on this too.

First, at 32 you don't have a diagnosis. Only men older than 50. What you have is low bone density and 99.9% of the time it's secondary to another condition - as your doctors are aware of. The testosterone is very important. I think I'd reconsider that.

Not sure if it applies in your situation, but my brother was found to have low bone density when he was 40. We finally determined it was the result of his drinking during high school and college (bone forming years) that suppressed his testosterone and depleted his bone density. He went on Actonel and now Reclast and has rebuilt his bone strength. Having more than 3 alcoholic drinks a day is a known risk factor.

If I were you, I'd look at the ISCD website (www.iscd.org ) to find a certified osteoporosis clinician or center near you. ISCD is the International Society for Clinical Densitometrists and is the gold standard of all things osteoporosis.

If you click on "Accreditation" at the top of the site, then select "Registry" you can look by state to see where an accredited osteoporosis center is. There are only 15 states with accredited centers in the US. I would suggest having your testing done at one of these.

You can also look at the "Certification" tab and select "Registry", put in your state and see who's certified with the ISCD to perform and/or interpret bone density testing.

It's a good place to start. Even if you have to pay out of pocket for another test, I'd do it. Going to someone who's not been certified by the ISCD can make all the difference in your test results. Even a half inch difference in placement on the table can alter your scores.

Ask questions. Be assertive. Ask your endo and testing tech if they're certified by the ISCD. If not, go elsewhere. Get a good baseline, find out what your bone density really is and go from there.

By the way - nobody wants to take bone meds or any other kind of med, but sometimes it's the best answer for you. You certainly don't want a series of compression fractures, where you become bent over and physical contact with loved ones can result in another fracture. You don't want your activites limited by poor bone density. As I told my brother, run to the nearest pharmacy to get your RX filled so that you can continue to live your life, not sit on the sidelines.

Also go on the National Osteoporosis Foundation website, www.nof.org to get a lot of good information. They have a booklet I suggest your order called "Boning Up on Osteoporosis." It costs a dollar and will become your Bible.

Good luck to you and keep us posted.
 
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cralls replied to bonebabe's response:
Thank you for the information!! What is the difference between low bone density and osteoporosis?? Why do you have to be older than 50 to have a diagnosis? The reason I seeked help when I was 32 was because of repeated rib fractures, joint problems, and fatigue.
 
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bonebabe replied to cralls's response:
Low bone density is a condition. Osteoporosis is a disease. Big difference if you're applying for life insurance or listing any other medical problems.

It is defined by your T-score. T-scores are given for post menopausal women and for men over age 50. The reason for that is that men are bigger boned don't have the bone loss that women do until later in life. By the age of 70, men and women are even in their rate of bone loss.

Joint problems and fatigue are not indicative of osteoporosis in themselves. Non-traumatic rib fractures are. It sounds more and more like you may have an autoimmune illness that is also causing you to lose bone mass. I assume your doctors have tested you for this? Have you seen a rheumatologist? That's something you might consider, in fact it would be a good idea.
 
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cralls replied to bonebabe's response:
Again thanks for your reply. good information for me! I was under the impression that osteoporosis was related to how low your T score is and not age, but I am new to this. Not sure if I have been tested for the autoimmune illness. What types of tests are needed for this? I have not seen a rheumaologist only endocrinologist. That was my biggest concern, whether I am seeing the correct specialist or not. I have had alot of blood work done and some urine analysis, that's about it. I have composed all of my blood and urine work into an Excel spreadsheet that will allow me to quickly look at blood scores over last 7 years quickly (all of it fits on two pages so far). Hopefully it can also help doctors just as a reference, as I am sure they will want to test me themselves. The advice you have given me has been much needed insight. I just want to get a good clear aim of the direction I need to pursue. I would be fine with taking the bone meds if I had more peace about whether not I have an underlying cause that needs to be addressed.
 
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cralls replied to bonebabe's response:
So I just went to the ISCD website and looked at my state Oklahoma and was surprised to see that the only one in my state is the the town I live in! Duncan is a small town, so I was surprised since there are so few listed on the website. Does this look like the one I should use? Or are they only listed for the DEXA scan credentials?
 
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bonebabe replied to cralls's response:
Yes, you should use this one. It is a lot more involved than just the DXA scan credentials. We have to jump through a lot of hoops to become accredited. I'm in NC, also a small town, and when we got our accreditation, we were one of only 14 internationally accredited sites.

If it's time for you to have another DXA, take your referral to Duncan Ortho. and have the DXA done there. You can be sure you'll get a top of the line test and interepretation.

If it's not time for your test, call them, explain what you want to do and that you're willing to pay out of pocket for the test. It's not much. Ours are in a hospital setting are are $232. It may be more in a non-hospital setting.

Once you have that done, the doctor doing the interpretation should give recommendations in his/her report. Take those to your primary care physician and ask for a referral to a rheumatologist. Even if the test results aren't what you're hoping for, you can be assured that they are correct.
 
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cralls replied to bonebabe's response:
Okay I will call them. Just to clarify, they will do the DEXA, but not neccessarily be the specialist that treats me or the one that tries to find an underlying cause??
 
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bonebabe replied to cralls's response:
Correct. They will do the diagnostics and should make recommendations as to treatment according to WHO guidelines and your test results. This information should be given to your primary care doctor for a referral to a rheumatologist.
 
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cralls replied to bonebabe's response:
So if my scores there differ or - .5 or even 1.0, I should still seek help on this. The bottom line is that a Rheumatologist is the best person suited to my problem, rather than an endocrinologist? I called the place that was here and on the ISCD list and they said they could do the scan, but would need to seek a Rheumatologist. They used to have one there and immediatly gave me the rheumatologists' phone number, because she left them and started an office on her own.
 
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mountainmom48 responded:
I was thinking along the lines as bonebabe. Have you had a full thyroid panel including antibodies testing? If not, I think you should ask your endo for this. Perhaps you have thyroid disease causing low bone density and low vitamin D.
 
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bonebabe replied to cralls's response:
Yes, that's what I would do. Once you have a good basic scan that you know is done according to protocol, you can go from there with that information. I do think you should see a rheumatologist.
 
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cralls replied to bonebabe's response:
Well not really sure what all they tested for and looked for. I am so new at this. This is why I wanted to get more involved and learn about it. I have all my blood and urine test compiled into one spreadsheet that is only two pages, if anyone is interested in peeking at it. I know very little at what to look for. Sound like I need to find good Rheumatologist. Will any Rheumatologist work or are there special ones that better relate to osteoporosis?
 
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cralls replied to cralls's response:
My blood work can be viewed from https://www.dropbox.com/sh/sp8de76wgdo51tm/_ewlKU1etF
 
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bonebabe replied to cralls's response:
I'm not a physician, so looking at your labs wouldn't mean anything to me.

Look again at the ISCD site for Certification then Registry for your state. Look for CCD's. Those are the doctors certified to manage osteoporosis patients. Also look next to their name to see if they're members of the ISCD. I'd go for one who is. It doesn't give their speciality so you'll have to google them to find out, but that's the best way to get what you want.


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