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    Old 01-29-2007, 12:40 PM   #1
    kkl
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    Unexplained bone loss

    Hi,

    I'm hoping someone here could help me. I am experiencing a progressive loss of bone in my jaw. I had a heel scan a few months ago and it was normal. My grandmother and mother have osteoporosis. I have seen numerous dentists and all agree I do not have gum disease. My doctor has not been able to find a cause, and will not agree to a DEXA scan because of my age (40). Are there any other causes of bone loss? I am thinking thyroid and have also posted on the thyroid board. I have other symptoms as well. My physician has run some basic blood tests , but so far, everything has come back normal. I plan on making another appointment to see her, but am wondering if there are any other tests I should ask for. I have an appointment with an endocrinologist, but can not see her until the end of March. I really don't think I can wait that long.

     
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    Old 01-29-2007, 03:59 PM   #2
    DesertBloom
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    Re: Unexplained bone loss

    Hi kkl: I'm a little confused here. If you have bone loss in your jaw and a family history of osteo, why won't the dr order the dexa, age is irrelevant? Maybe you need to remind this dr that osteo occurs at any age given the necessary causes. If you have insurance, can't you just "tell" the dr to order the test and that's it!

    I'm pretty sure the Endo will order the dexa, when you seem them, but do you want to wait until then? Waiting another 2 months or so, probably won't hurt, but that still doesn't explain your dr calling the shots, so to speak.

    The heel scans are okay, but I wouldn't use the results of that test to determine my "overall" bone health.

    There are other things that cause bone loss, but without the dexa, you don't know what your t and z score are. I don't think it would be good to speculate at this point until you know more (dexa) or endocrine tests.

    It is a little strange that you don't have peridontal disease with this bone loss, since that's what causes that, plus osteo, but isn't that even a better argument to have a dexa?

    There are endocrine disorders that can cause osteo, which "usually" can be found with some blood tests and maybe an ultrasound/scans etc, so I would let the Endo handle that, and they will know what to order. Check out all the primary and secondary causes of osteo, and see if you have any of those risk factors, if so use that to bolster your demand for a dexa.

    If you absolutely can't get the dr to order the dexa, which seems absurd to me, then wait for the Endo to do it, and *make sure* that's part of the testing they order.

    I wanted to add that a similar experience happened to me when I was 32, because I was told I had very soft bones determined from many back surgeries and that if I didn't have osteo then, I would certainly get it later, but they kept telling me much later like 30-40 years later. I ask the dr what to do to treat this and all he said was to continue my daily exercise as always, calcium, vit D, scripted Vit K and magnesium, because according to him there was no other treatment, no dexa's then and I don't think they were using bisphosphonates at that time except for cancer treatment. I started my daily regimen of the above vits at the age or 6, due to extreme muscle cramps and muscle siezures, and always exercised throughout my entire life. I contiuned to do this religiously and now at 52 have severe osteo. Back then there weren't many things that could be done to treat it, but I did all I was told to do. I just don't want them to make you wait until it gets worse, when it becomes much harder to treat. As a result of taking the above I still had 6 fractures where in one case rods and pedicle screws just fell out of the spinal bone which was unheard of at that time. Just don't let anyone delay your treatment to the point where it progresses beyond a point where it's hard to return your bmd to an earlier age.

    Good Luck...

    Sorry if I wasn't much help...

    Last edited by DesertBloom; 01-29-2007 at 05:49 PM.

     
    Old 01-29-2007, 06:51 PM   #3
    montesflus
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    Re: Unexplained bone loss

    HELLO KKl :

    WHO DIAGNOSED YOU WITH JAWBONE LOSS? WAS IT YOUR DENTIST? ALSO, WHAT SYMPTOMS (IF ANY), DID YOU HAVE FROM THE JAWBONE LOSS?

     
    Old 01-29-2007, 07:02 PM   #4
    kkl
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    Re: Unexplained bone loss

    DesertBloom,

    Thanks for the reply. My doctor won't order the Dexa, because she mentionted that my insurance (HMO) won't cover it. At this point, I don't care if they don't cover it. I just want to get checked out. I'm wondering if I have a thyroid problem since for many years I have suffered from thyroid like symptoms ( muscle aches, tingling, twitching, hair loss, fatigue,etc.) The bone loss has been an ongoing thing which I thought was a dental problem, but after talking to so many dentists I think there must be something else going on. My dentist saw the bone loss 2-3 years ago, but since it wasn't a huge amount he made no mention of it until I asked. Since then, the bone loss has continued. My bite and teeth have also completely shifted, and now my jaw joints are affected. I am praying that I find an answer to this, before my teeth fall out. I was talked into braces by an orthodontist, but now I'm wondering if I made the right decision. I plan on seeing my primary care physician and will be pushing for more tests. She did do order a TSH test for thyroid, but it came back normal. My understanding is that there are additional tests for thyroid (T3 and T4), but she did not order these.

     
    Old 01-29-2007, 09:47 PM   #5
    DesertBloom
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    Re: Unexplained bone loss

    Quote:
    Originally Posted by kkl View Post

    ... My doctor won't order the Dexa, because she mentionted that my insurance (HMO) won't cover it. At this point, I don't care if they don't cover it. I just want to get checked out.

    ...I'm wondering if I have a thyroid problem since for many years I have suffered from thyroid like symptoms ( muscle aches, tingling, twitching, hair loss, fatigue,etc.)

    ...The bone loss has been an ongoing thing which I thought was a dental problem, but after talking to so many dentists I think there must be something else going on. My bite and teeth have also completely shifted, and now my jaw joints are affected. I am praying that I find an answer to this, before my teeth fall out.

    ...She did do order a TSH test for thyroid, but it came back normal. My understanding is that there are additional tests for thyroid (T3 and T4), but she did not order these.

    Hi: When you say that you don't care if they don't cover it... Does this mean you would be willing to pay for it? If so the last quote I got was $150.00 (dexa) but that may have change. The reason I had a QCT is a long story, but the prices for those and dexas are about the same, however, you *DO NOT* want to get a QCT only a dexa. Does your HMO has some sort of appeals process that you could pursue? I had to do something similar with my insurance (not an HMO) and I did get them to pay for a QCT (similar to a dexa) but your dr has to be willing to help you explain medical necessity. Also, with all insurances don't give up on the first try, keep at them with ever step they allow, it's time consuming but worth it. Since you have included more medical info, it sounds even more important to get the dexa.

    Did your dr test you for these other symptoms you mention above or just the few blood tests? It's good you have an appt with the Endo, and hopefully they can shed some more light on this.

    The tests you mentioned for the thyroid are correct plus they would probably do some others like PTH, Vit D and D3, no need for the technical names right now. Also a thyroid or parathyroid ultrasound or nuclear scan if anything is found in the manual exam (enlargement). Also a total calcium and ionized cal, 24 hr calcium among others should be done, but like I said before, the Endo should be up on all this.

    Did you have any dental implants done? I've heard of problems with bone loss with these but only in *really* rare cases. Did these dentists check for anything that would explain this? Could they possibly have checked for mandibular problems or joint disorders? Do you have any loose teeth, and I'm assuming you've never taken any bone meds since you haven't had a dexa? Sorry for all the questions but it's the only way I can get a handle on this.

    I think you may a have to fight if it's the insurance standing in the way, but like I mentioned, go for it with what ever appeals process they have, this doesn't sound like something that you should let go.

    You situation sounds more complex to me now, not that it wasn't before, but there must be some way around the HMO to get something done that is considered a medical necessity.

    Good Luck and post back if you have any other questions for us.

    Last edited by DesertBloom; 01-29-2007 at 10:00 PM.

     
    Old 01-29-2007, 10:25 PM   #6
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    Re: Unexplained bone loss

    Quote:
    Originally Posted by montesflus View Post
    HELLO KKl :

    WHO DIAGNOSED YOU WITH JAWBONE LOSS? WAS IT YOUR DENTIST? ALSO, WHAT SYMPTOMS (IF ANY), DID YOU HAVE FROM THE JAWBONE LOSS?
    Hi Montesflus: I hope you don't mind me jumping in here, since you asked kkl this question... I have a tremendous amount of jaw bone loss, which I found out about 12 years ago through a routine dental x-ray. I also have periodontal disease which along with osteo, and age causes jaw bone loss. The only symptoms I have are receding gums, which I have to maintain with special types of scaling/cleaning at the dentist. Also they start you using a special electric toothbrush with a strong antibiotic rinse for several months, tongue cleaner and toothpicks for cleaning between the teeth, then you continue with the toothbrush and a special gel toothpaste to keep you teeth and gums as clean as possible. I don't have any other visible or mechanical problems, like kkl has, so obviously there are differing types of symptoms for this.

    I do have another problem, and that is I need to have a tooth extracted, but since I took actonel the oral surgeon doesn't want to touch me. Right now I don't know what to do since I have a dentist who says the tooth has to come out, and a min met dr and oral surgeon who says to leave it until it absolutely has to come out which makes no sense to me. I know what they are worried about, but in either case I'm left with a horrible problem.

    But anyway jaw bone loss is pretty typical as you age, especially if you had a lot of extractions for implants or dentures, and I have had neither of those yet.

    Last edited by DesertBloom; 01-29-2007 at 10:35 PM.

     
    Old 01-29-2007, 10:52 PM   #7
    kkl
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    Re: Unexplained bone loss

    Hi Desertbloom,

    I never had any dental implants done. In fact, I haven't had a cavitiy in the last 17 years (knock on wood!). I've seen about 6 dentists. Two think my bite is contributing to the bone loss, but most can not come up with a reason for the bone loss. I do grind my teeth at night, but I was wearing a nightguard to protect my gums/teeth. I also have TMJ.

    The orthodontist who I am seeing (he is head of the ortho. department at the local dental school) thought that he could fix my bite, but did not necessarily think it would stop the bone loss. I do have a few loose teeth. He mentioned that there is a hereditary component to jaw bone loss, but I don't know of anyone in my family that suffers from it. I do have some family members that have periodontal disease though.

    As for other medical tests, I have been tested in the past for rheumatoid arthritis and lupus. After a very traumatic miscarriage, I had really horrible joint pain and saw a rheumatologist who then diagnosed me with fibromyalgia/chronic fatigue. He actually mentioned that I did not exhibit the classic signs of fibromyalgia, but did not know what to label my symptoms.

    You mentioned serum calcium levels. I did have low normal calcium levels.
    My calcium # was 8.7 and the normal range was 8.5-10.1. I also suffer from irritable bowel syndrome so I wonder if I have some malabsorption problems with calcium and vitamin D.

     
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