Sherry M
01-27-2005, 03:32 PM
Hi, I'm new here. I am 50 years old and was diagnosed with osteoporosis about 2 years ago with T scores of -2-4 in the hip and -3.7 in the spine. Recently, I had a followup DEXA with resultant T scores of -2.6 in the hip and -4.5 in the spine after taking Fosamax, calcium, vitamin D, and estrogen (I have had a previous hysterectomy with removal of both ovaries). I walk for at least 30 minutes 7 days a week. My bone density scores have gotten worse with treatment. I have constant, dull pain in my low back and hips. I am told by my doc that pain with T scores like this is common. She doesn't seem to be concerned about any of it. She says that treatment is adequate with the Fosamax, calcium, vitamin D, and estrogen and refuses to try an alternative medication to see if it works better. I cannot lose any more bone. I am looking for any information or feedback regarding the worsening in bone density, bone pain, possible exercses, reaction of my doc to the situation, etc. Any and all feedback is welcomed.
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hummingbirdkiss
01-27-2005, 10:30 PM
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Sherry M
01-28-2005, 09:48 AM
Thanks so much for your reply. After getting red-faced upset with the doc, she finally agreed to do some testing. She is doing a parathyroid check, a check for celiac, and a U/A check to see if there is calcium loss there. I am still waiting for results on those. However, the tests were taken over a week ago and I am thinking they are all normal, as I have not heard anything from them (they notify me if there is anything abnormal). I am wondering how bad your osteo had become when they found the parathyroid problem, and what they have done to correct it?
Thanks again for the reply.
Thanks again for the reply.
Oldbones
01-31-2005, 04:54 AM
Sherry M....... May I ask what kind of doctor you are seeing about your severe osteoporosis? Before I was started on Forteo injections, my rheumatologist did parathyroid tests, 24 hour urine calcium, 25 hydroxy-D (I think that's what it was called) :confused: and other tests that I can't recall right now. He wanted to rule out any other cause of my bone fracturing problem before starting me on Forteo. All my tests were normal so my parathyroid was not causing the bone loss.
Oldbones
Oldbones
Dodie
01-31-2005, 08:18 AM
My doctor also did the parathyroid test, celiac and allergy test to foods. To my surprise my parathyroid test were abnormal and I have a severe milk and beef allergy. This is something you might consider also. God Bless!
Sherry M
01-31-2005, 01:27 PM
Thanks for your replies!
To answer your question, Oldbones, I am seeing a military doctor, a young female captain, because of my husband's past military service. Our insurance is such that she is my PCP and I cannot see any other doctor without her referral (it is an HMO plan). She is an internist. I have asked her if there is such a thing as an osteoporosis specialist, she knows of none. My impression of her is that she has little or no experience with "old people's diseases" as osteoporosis most often is. It is my impression that she neither knows or cares, as she is about to leave the clinic to become a civillian provider where she can "make more money" per her own statement. Does anyone know how to get a medical provider to listen to you without getting red-faced upset? Does anyone know how to get a medical provider to listen to you when you suggest to them that you actually may know something about the problem you have without making them defensive (all of us patients are supposed to be stupid don't ya know, especially if we're female)? Seems I am turning this into a gripe session for uncaring medical providers.....but what's a person to do?
Well.....I have taken it upon myself to do more investigation, not with regards to the condition, but with possible solutions since my provider doesn't seem to know or care. I have come across something called ipriflavone. I quote a site giving information on it......"After 7 successful years of experiments with animals, human research was started in 1981. Today, ipriflavone is available in over 22 countries and in most drugstores in the United States as a nonprescription dietary supplement. It is an accepted treatment for osteoporosis in Italy, Turkey, and Japan." I am wondering if anyone has any experience with this?
Thanks to all for your replies! They are appreciated.
To answer your question, Oldbones, I am seeing a military doctor, a young female captain, because of my husband's past military service. Our insurance is such that she is my PCP and I cannot see any other doctor without her referral (it is an HMO plan). She is an internist. I have asked her if there is such a thing as an osteoporosis specialist, she knows of none. My impression of her is that she has little or no experience with "old people's diseases" as osteoporosis most often is. It is my impression that she neither knows or cares, as she is about to leave the clinic to become a civillian provider where she can "make more money" per her own statement. Does anyone know how to get a medical provider to listen to you without getting red-faced upset? Does anyone know how to get a medical provider to listen to you when you suggest to them that you actually may know something about the problem you have without making them defensive (all of us patients are supposed to be stupid don't ya know, especially if we're female)? Seems I am turning this into a gripe session for uncaring medical providers.....but what's a person to do?
Well.....I have taken it upon myself to do more investigation, not with regards to the condition, but with possible solutions since my provider doesn't seem to know or care. I have come across something called ipriflavone. I quote a site giving information on it......"After 7 successful years of experiments with animals, human research was started in 1981. Today, ipriflavone is available in over 22 countries and in most drugstores in the United States as a nonprescription dietary supplement. It is an accepted treatment for osteoporosis in Italy, Turkey, and Japan." I am wondering if anyone has any experience with this?
Thanks to all for your replies! They are appreciated.
Aleta145
01-31-2005, 02:50 PM
Hi Sherry. Osteoporosis treatment falls under the purview of endocrinology and/or rheumatology. You should look for doctors in those specialties and ask whether they treat many osteoporosis patients.
Regarding your question about ipriflavone, research does not support its use as an osteoporosis treatment. According to a controlled study published in the Journal of the American Medical Association, they found no increase in BMD and in fact there was a troublesome side effect in some of the women taking it that wasn't present in the placebo group: it actually lowered levels of lymphocytes, a white blood cell important to maintaining a healthy immune system. The authors of the study set out to prove beneficial effects and instead did the opposite.
If you want to read the JAMA abstract yourself, Do a Google search using this for search criterion: "Ipriflavone in the Treatment of Postmenopausal Osteoporosis".
Regarding your question about ipriflavone, research does not support its use as an osteoporosis treatment. According to a controlled study published in the Journal of the American Medical Association, they found no increase in BMD and in fact there was a troublesome side effect in some of the women taking it that wasn't present in the placebo group: it actually lowered levels of lymphocytes, a white blood cell important to maintaining a healthy immune system. The authors of the study set out to prove beneficial effects and instead did the opposite.
If you want to read the JAMA abstract yourself, Do a Google search using this for search criterion: "Ipriflavone in the Treatment of Postmenopausal Osteoporosis".
Oldbones
01-31-2005, 02:57 PM
Thanks for your replies! To answer your question, Oldbones, I am seeing a military doctor, a young female captain, because of my husband's past military service. Our insurance is such that she is my PCP and I cannot see any other doctor without her referral (it is an HMO plan). She is an internist. I have asked her if there is such a thing as an osteoporosis specialist, she knows of none. It is my impression that she neither knows or cares, as she is about to leave the clinic to become a civillian provider where she can "make more money" per her own statement. Does anyone know how to get a medical provider to listen to you without getting red-faced upset? Does anyone know how to get a medical provider to listen to you when you suggest to them that you actually may know something about the problem you have without making them defensive (all of us patients are supposed to be stupid don't ya know, especially if we're female)? Seems I am turning this into a gripe session for uncaring medical providers.....but what's a person to do?
Sherry M.....
Actually, an Endocrinologist is probably the best choice for osteoporosis with the next best being a Rheumatologist. A lot depends on the doctor and how knowledgable they are of osteoporosis and treatment. There are probably some GP's out there that are good osteo doctors but you just never know. I go to a Rheumatologist with a sub-speciality of Internal Medicine. He's wonderful. What's strange is that my Ortho doctor who I am seeing for my fractures had never heard of Forteo. I had to bring him the information (that's scarey!). My Rheumatologist was very familiar with the drug and all the pros and cons. It sounds like your military doctor is only fulfilling her duty and isn't interested in her patients. I wouldn't want to be one of her patients once she is a civilian doctor. I'm sure there are good military doctors. My father-in-law thought his was great. You just got stuck with one who seems to not care (or maybe she's just stupid).
There are some doctors who just refuse to listen to any suggestions of their patients. Thankfully, most of mine are very considerate of my concerns and discuss everything with me (and listen to my input). I'm sure you will get some suggestions from others on how to approach doctors such as yours.
Best of luck to you and hope you can find a doctor who will talk to you and listen to what you have to say.
~Oldbones
Sherry M.....
Actually, an Endocrinologist is probably the best choice for osteoporosis with the next best being a Rheumatologist. A lot depends on the doctor and how knowledgable they are of osteoporosis and treatment. There are probably some GP's out there that are good osteo doctors but you just never know. I go to a Rheumatologist with a sub-speciality of Internal Medicine. He's wonderful. What's strange is that my Ortho doctor who I am seeing for my fractures had never heard of Forteo. I had to bring him the information (that's scarey!). My Rheumatologist was very familiar with the drug and all the pros and cons. It sounds like your military doctor is only fulfilling her duty and isn't interested in her patients. I wouldn't want to be one of her patients once she is a civilian doctor. I'm sure there are good military doctors. My father-in-law thought his was great. You just got stuck with one who seems to not care (or maybe she's just stupid).
There are some doctors who just refuse to listen to any suggestions of their patients. Thankfully, most of mine are very considerate of my concerns and discuss everything with me (and listen to my input). I'm sure you will get some suggestions from others on how to approach doctors such as yours.
Best of luck to you and hope you can find a doctor who will talk to you and listen to what you have to say.
~Oldbones
Sherry M
02-02-2005, 03:35 PM
Thanks to all for your replies!
With reference to the ipriflavone, the website I quoted previously goes on to state "Numerous double-blind placebo-controlled studies involving a total of over 1,700 participants have examined the effects of ipriflavone on various forms of osteoporosis.26–37 Overall, it appears that ipriflavone can slow the progression of osteoporosis and perhaps reverse it to some extent. For example, a 2-year double-blind study followed 198 postmenopausal women who showed evidence of bone loss.38 At the end of the study, there was a gain in bone density of 1% in the ipriflavone group and a loss of 0.7% in the placebo group. These numbers may sound small, but they can add up to a lot of bone over time." It goes on to list those studies, a long list. For me, I always take with a grain of salt what the AMA says, as it is my belief that their first concern is not my health (but that is a different subject, and I won't go into it here). I guess you can believe a study done by one group whose interest it is for the test to fail or you can take tests done by 66 different groups whose interest is neither pro or con showing it is affective. I knew about the possible affect on the WBC count. My WBC count is okay, my bones are not. My concern at this time is, at age 50, a T score of -4.5 in the spine which represents a worsening over 2 years' time with treatment and the constant pain I have as a result. I cannot lose any more bone. I would ask you about side affects with Fosamax, Actone, Forteo.....? My doctor will not try another medication than the Fosamax I have been on for 2 years, so I have to attempt to help myself. This is why I brought up the question about ipriflavone.
As to the type of doctor, your point is well taken. I would first seek out an endocrinologist and second a rheumatologist. The problem is that my PCP will not refer me out and I cannot afford these services myself. When she leaves, I may get lucky and get some doctor who does care, maybe not. I can only hope and wait to see how it turns out.
Thanks again for all the replies!
With reference to the ipriflavone, the website I quoted previously goes on to state "Numerous double-blind placebo-controlled studies involving a total of over 1,700 participants have examined the effects of ipriflavone on various forms of osteoporosis.26–37 Overall, it appears that ipriflavone can slow the progression of osteoporosis and perhaps reverse it to some extent. For example, a 2-year double-blind study followed 198 postmenopausal women who showed evidence of bone loss.38 At the end of the study, there was a gain in bone density of 1% in the ipriflavone group and a loss of 0.7% in the placebo group. These numbers may sound small, but they can add up to a lot of bone over time." It goes on to list those studies, a long list. For me, I always take with a grain of salt what the AMA says, as it is my belief that their first concern is not my health (but that is a different subject, and I won't go into it here). I guess you can believe a study done by one group whose interest it is for the test to fail or you can take tests done by 66 different groups whose interest is neither pro or con showing it is affective. I knew about the possible affect on the WBC count. My WBC count is okay, my bones are not. My concern at this time is, at age 50, a T score of -4.5 in the spine which represents a worsening over 2 years' time with treatment and the constant pain I have as a result. I cannot lose any more bone. I would ask you about side affects with Fosamax, Actone, Forteo.....? My doctor will not try another medication than the Fosamax I have been on for 2 years, so I have to attempt to help myself. This is why I brought up the question about ipriflavone.
As to the type of doctor, your point is well taken. I would first seek out an endocrinologist and second a rheumatologist. The problem is that my PCP will not refer me out and I cannot afford these services myself. When she leaves, I may get lucky and get some doctor who does care, maybe not. I can only hope and wait to see how it turns out.
Thanks again for all the replies!
linda.b
02-07-2005, 03:18 PM
Drs are often poorly informed about primary hyperparathyroidism (pHPT) and its associated symptoms.
Raised serum calcium in the presence of raised parathyroid hormone is diagnostic.
pHPT can cause bone pain, osteoporosis, and many many other symptoms.
Fosamax will not help your bones if you have pHPT, and bone loss will continue until the overactive gland is removed.
Look up sites on hyperparathyroid disease.
I had severe osteoporosis resulting from pHPT.It's now 4 years since surgery and my boneloss has now stopped. I take HRT only.
Maybe you should check your results are in and ask for the numbers ?
Hope you get some answers soon.
Raised serum calcium in the presence of raised parathyroid hormone is diagnostic.
pHPT can cause bone pain, osteoporosis, and many many other symptoms.
Fosamax will not help your bones if you have pHPT, and bone loss will continue until the overactive gland is removed.
Look up sites on hyperparathyroid disease.
I had severe osteoporosis resulting from pHPT.It's now 4 years since surgery and my boneloss has now stopped. I take HRT only.
Maybe you should check your results are in and ask for the numbers ?
Hope you get some answers soon.