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My Doctor told me to see either an endocrinologist or rheumatologist. I have bone loss due to a Spinal Cord Injury.
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What type of Doctor oversees your Osteoporosis?
- By Norm
- Posted June 15, 2009 at 10:45 am · 28 replies
- In Finding a healthcare provider
- Shared with the public
Explore topics in this discussion:
Exercise Cancer Acid reflux Forteo Diabetes Fosamax Breast cancer Reclast Osteopenia Hyperparathyroidism Actonel Pain Osteoporosis
28 replies
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- By Ron1
- Posted July 23, 2009 at 4:49 pm
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Endocrinologist. Same people who treat diabetes.
Ron
- By Nevadamtnbear
- Posted July 23, 2009 at 10:21 am
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I also wanted to add a comment in conjunction with Carollyn50's response -
I'm a huge advocate of taking a multi-disciplinary approach, and using as many different specialists to get to a solution/management plan.
I'm 35, and I just found out I have at least one t-fracture on Tuesday last week. I go in for my DEXA scan this morning, so I'll have a little more information shortly. But, my PCP's reaction was disturbing to say the least when he came in after reading the x-rays he took to rule things out. Hah, we all just figured I had some strained muscles...for months I've been thinking it was purely muscular.
But, my PCP is at the med school here, and I know that the school has some excellent endocrinologists (my former secretary see's one for a mystery thyroid disorder that no one can figure out). My plan (as I'm assuming at this point its osteo) is to have my PCP, the endocrinologist and my OBGYN involved (as I also have a high risk of breast cancer and now that I've weaned my 5 month old, I'll be going through the genetic testing for the BRAC gene). I want my doctors collaborating together to manage what's going on.
Anyway, I guess if you can, find a team of physicians wiling to work together, collaboration is good, and I have found in the past you get the best of all worlds that way.
- By Nevadamtnbear
- Posted July 23, 2009 at 10:03 am
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Cher1,
Have you thought about going to UC Davis Medical School? I'm in Reno, and right now I'm going to my PCP at the UNR Medical School. I do know that when people here need to find specialists, we often head to UC Davis. Just a thought.
- By kathleen1130
- Posted July 22, 2009 at 6:06 pm
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Sandi-
thanks! I'm usually an optimistic and positive person. I was just having one of those days of ultimate frustration. All the same, reading the affirmations and staying positive in light of difficulty is what makes us survivors.
No one can change my attitude, only I. :)
Best wishes to all.
- By sdivas
- Posted July 22, 2009 at 5:52 pm
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kathleen, if you are going to stay up all night with thoughts about osteoporosis, may I suggest that you print the NOF affirmations and focus on sending your mind some positive bone thoughts. Please check Affirmation discussion on Home page and scoll to NOF's affirmations. Thanks. Sandi
- By orotrot
- Posted July 22, 2009 at 4:54 pm
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I just had a bone scan done and was told the results were low enough that the dexa scan "computer" recommended taking two additional images to see if any spinal vertebrea were "collapsing." I am a little alarmed about this ... does anyone know how bad my test results could be? My gynecologist is sending me for blood work to test my vitamin D level ... I have lots of low back and hip pain..... would love some input from someone who has "been there=done that."
- By kathleen1130
- Posted July 22, 2009 at 4:27 pm
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Thanks guys for your suggestions and information. I did not know there was a Vitamin D injection. It gave me something that made me stay awake all night thinking.... yes, all night. lol I keep thinking maybe it is the route these meds are given to me is failing. Even for pain control- I have an intrathecal pump.
Anyway, I will be ready on July 12 with a plethora of questions for the doc and I'm not going to let him leave the room until I have answers, the real possibilities of what I'm looking at as far as quality of life and why wait 3 months to start a new treatment?
- By Pouchie
- Posted July 19, 2009 at 11:12 pm
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I go to the Bone and Mineral Clinic located in the Center for Advanced Medicine at Washington University. This is with Barnes Jewish Hospital in St. Louis MO.
- By Carollyn50
- Posted July 18, 2009 at 5:56 pm
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Even if you need an osteoporosis specialist, you might not be sure where to find one because no one type of physician is defined as an osteoporosis specialist. An osteoporosis specialist is any doctor who has the interest, training, and experience to study bone health in depth. Types of physicians who are often osteoporosis specialists are gynecologists, endocrinologists, orthopedic surgeons, and geriatricians. Osteoporosis specialists are not limited to this group; you may also find a specialist in any area of medicine. However, it doesn't guarantee that they are experts in osteoporosis.
Some clinics like the one that I go to provide multidisciplinary care with physicians, nurses, dietitians, physical therapists, and radiographic technologists participating in your evaluation and care.
If you decide you need a physician specialist, talking with your primary care physician is a good place to start. You can also check this website for a list of physician specialists throughout the country.
- By Eamenard
- Posted July 18, 2009 at 4:08 pm
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Dear Kathleen1130
I'm surprised that your doctor wouldn't start you on Vitamin D3 injections right off as I haven't seen anyone with problems getting Vit D injections.
Forteo is the only med that is known to build bone and can't understand why the Doc wouldn't just go there. I'm against meds in general but with your set of problems, I wouldn't hesitate giving Forteo a try. The biophosphates tho are really scary stuff.
I don't think anyone really understands the bone building/loss chemistry and everyone seems to be guessing or are giving out the drug company party line. Good luck and do your own research as far as you are able. Your condition sounds rare. Wish you the best.
- By Maroulina
- Posted July 18, 2009 at 11:06 am
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Oh, Kathleen, I do so empathize with your situation... I too am at a crossroads wondering which doctor's advice I should follow. (I live in Greece, by the way, it;s the same everywhere...) Have osteopenia for hip (-2.4) after 6 years with Miacalcic (+Ca+D3+Mg+ some exercise). This is just a breath away from osteoporosis, all that medicine for nothing and to think I was proud to have started early on, while still having my period precisely because I wanted to make sure I have good strong bones. (I am 59, BTW, had periods till I was 56.) Frustrated, I saw an orthopedic doctor who immediately prescribed Actonel. Started to take it then got scared and stopped and went to see another endoctrinologist, who said I should not be taking anything because I do not have osteoporosis. Now, I read here that some people are seeing rheumatologists... You are so brave, keep fighting -- I wish you all the best.
- By PCB
- Posted July 18, 2009 at 10:28 am
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I see an endocrinologist once a year, but am also monitored by an internist - who identified the acid reflux caused by my 5+ years on Fosamax.
Internist took me off the Fosamax; endocrinologist concurred, commenting that "Five years on Fosamax is about protocol, since the long-term effects of the drug are still unknown."
Currently just take OTC: Citrical and Vit. D. Due for a DEXA scan this fall.
- By kathleen1130
- Posted July 17, 2009 at 5:14 pm
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A terrible one.
Forgive my attempt at a joke. I'm frustrtaed. I do see an endocrinologist and have been worked up at Mayo Clinic.
Now I'm facing my 9th fracture; thoracic is gone. I've had kypho in those that I can, but the ones higher up are too risky. Anyway, After a year of Fosamax; I was deemed to be a treatment failure and once again VItamin D deficient. Now he wants to wait 3 months before starting another tx regimen of either Reclast or Forteo. Does that make sense to anyone? Obviously the Fosamax did NOT work "severe decline" in two hip regions and lumbar. By my left forearm is OK! Yay! I'd like to use it to slap him, but I'm right handed.
My next Apt with him isn't until Aug 12th- I'm not one of those sit back and wait people. After a year of Fosamax not working, let's get busy with the next and see if it does any good. I'm 39 and not going to spend my 40th bday in a wheelchair, in bed (unless Brad Pitt is with me). Does anyone have an opinion whether rheumatologists are more aggressive than endocrinologists in general? I could see a rheumatologist but don't know if I"m just going to be starting all over at page one.
Good Question and I'm sorry I didn't have an answer only a little more bitterness to throw in for flavor.
My best wishes are with you all- Hang in there :)
- By huessysignoret
- Posted July 17, 2009 at 10:00 am
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I see only my primary care doctor and pain management specialist for the osteoporosis. Neither are particularly knowledgeable. We don't have an endocrinologist in the area, and the rheumatologists are not good.
- By Cher1
- Posted July 17, 2009 at 2:26 am
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I live in Roseville, CA, near Sacramento, and have had trouble finding an endocrinologist that specializes in Osteoporosis. I asked my internist to recommend someone and the endocrinologist told me that I didn't need to see her since my calcium levels were fine. I was upset, to say the least. Does anyone know a doctor that has experience in osteoporosis in my area?
Thanks
- By KMFDallas
- Posted July 15, 2009 at 9:39 am
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I go to an endocrinologist and also a bone and mineral specialist in Dallas
- By Caleigh
- Posted July 15, 2009 at 9:10 am
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My GP monitors my case. However, I am going to ask for a referral to a specialist. I live on a small Island in Canada(Prince Edward Island) so will have to travel to a larger area to see a specialist.
- By AnnieO
- Posted July 15, 2009 at 9:01 am
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Hi - from what I've read, an endocrinologist or rheumatologist are excellent for covering the metabolic testing and assessment for osteo. In addition to an endocrinologist, I'm also seeing a physical therapist to cover specific osteo exercises for my hip osteoporosis and spine osteopenia. She has participated in Sara Meek's seminars and is really great to work with.
http://www.sarameekspt.com/seminars.asp
- By Jeffer
- Posted July 15, 2009 at 7:44 am
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So far, I only see my primary care physician. She hasn't recommended an endocrinologist yet.
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