Looking for a doctor in Midwest
I am seeking a physician to treat my osteoporosis and reside in Wisconsin. I can see a few choices available between Milwaukee and Madison, but am not against looking further away if that would allow more progressive treatments than what I have been on. The last 3 years I’ve mainly only had Alendronate. My T score has remained abysmal at -3.7 at now 64 years of age. I’ve attempted to get a second opinion from Cleveland clinic. Who highly suggests I take a different path to rebuild bone. So with that said, could look to Cleveland for a physician. Or perhaps Mayo Clinic? I can be messaged or comments placed here. Whatever is most appropriate, if anyone has suggestions, I would greatly appreciate them. I’m not sure what else would be helpful. But please ask. Thank you in advance
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Is there anyone in the Midwest dealing with osteoporosis?
I’m curious as to what Cleveland suggests for your osteoporosis, I dislike taking the Alendronate ite but I’m afraid of the other choices available. Are you able to exercise ? I
71. I walk 2 miles every day and do low impact aerobic every day for an hr (sometimes more. ). I have not broken any bones but my spine & hip scores are 4.2. Not good.
Cleveland thinks alendronate will not be building any bone. They had several suggestions that could, so I am scheduled for an appointment in May. I also have one scheduled in April with a provider in WI. I agree with you. I don’t like drugs at all and my scores are bad also
Following- also in Wisconsin
Who and where?
North shore of Milwaukee!
Oh how awesome! I have two appointments scheduled for second opinions. One is at the medical college of Wisconsin and the other at clinic.
Hello, your post especially caught my eye because I’m in the same boat ( finding a provider who specializes in osteoporosis, orders appropriate labs( bone turnover markers such at CTX and P1NP) as well as fluent in prescribing medications).
Long story short:I’m 56, sustained an L3 compression fracture in Nov. 2024 and diagnosed with “severe”osteoporosis in January 2025. ( -3.6 T scores in my spine and not much better hips).
Frustrated with my local experience getting seen in a timely manner and getting to a diagnosis, I decided to start my journey at Mayo Clinic( I have family in MN and likely to retire here). I was able to get an appt with an Endocrinologist 1 week from when I called.
I went to Mayo with an open mind, full questions and hope, however, experienced many “highs” and “lows,” over the course of 2 days.
One round of fasting labs were completed an hour before my endocrinologist consult such that the Dr. could share those findings: all within normal limits. From what I can tell, they are the same tests as the comprehensive metabolic panel I had at home ( which also were within normal limits) + there were some new tests. Two of the new tests that caught my attention were the B-CTX( value 279 )( I believe this is a bone turnover marker( BTM) indicating osteoclast activity) and a “Bone Alkaline Phosphatase, S” test ( value 13) ( I’m not certain this is a bone marker test for osteoblast activity. **Dr. Mc Cormick( Great Bones book/ author) strongly recommends the P1NP in addition to CTX.
The summary of my endocrinologist visit at Mayo:
- this Dr referred to my osteoporosis as “moderate”
- agreed hormone replacement therapy ( HRT) probably would have helped me( a had asked my local provider at every annual exam if I should start HRT, but never encouraged to, despite my family history)
- Gave me a list of 5 appropriate anabolic drugs my insurance would pay for, listed in order of fastest working : Forteo, Tymlos, Evenity, Prolia, Reclast).
- advised 1200mg calcium intake daily
-advised at least 600 IUs vit D daily
- advised no lifting > 10-15 #, no golf, pickle ball or other “explosive” activities, avoid falling, etc.
- advised weight bearing exercise
- ordered the 24 hour Urine test
- I asked specifically about having a P1NP test as a baseline BTM and was told something to the effect they don’t do that one anymore…..?
-** informed me I could follow up with him in 1 year at which time he recommended a DEXA scan, preferably from the same imaging center that did my first one for comparison.
** I explained I thought he was going to be my endocrinologist and actually start me on treatment….. he clarified, he can only follow up with me in 1 year, insurance wouldn’t pay for me to see him sooner…. I needed to find a provider ( a primary provider or an endocrinologist)to start me on the medication I chose to use.
I specifically asked again about a P1NP test ( I now had a CTX value per the labs he ordered) prior to starting any treatment in effort to monitor if therapy was working in a couple months vs waiting an entire year for a DEXA scan, but he reiterated a 1 year follow up DEXA scan is his recommendation.
I asked what if I would pay for them out of pocket- same answer.
He went on to say there is a shortage of endocrinologists across the USA. Furthermore, many endocrinologists are not fluent in osteoporosis nor prescribing osteoporosis medications.
I asked for guidance in finding an appropriate provider. He only gave me regions to consider: University of Wisconsin?, Chicago, Seattle, Boston are the ones I recall him saying.
(** In my own search, I came across the Osteoporosis Bone Center at Cleveland Clinic and have an upcoming appt with a rheumatologist in May. )
To find out my vertebral fracture assessment results as well as the other labs he would message me in my Mayo Clinic patient portal.
He did message me my remaining results which were all within normal limits except for too much calcium in my urine for which he did prescribe a medication to help prevent developing a kidney stone but I would need to follow up with someone back home to monitor how I’m doing with it.
He also sent me a link/ resource for making an appointment to establish a Mayo primary provider if I wished, but noted they can take a month or longer to get into.
Overall, he was kind. I had many questions and the consult I was charged for was 30 minutes( I’m certain we( my husband ) were in there closer to 45 min). Although it wasn’t the outcome I had hoped for, I learned a lot.
After this visit, I returned home and did get in to see a local endocrinologist, but have not yet started treatment, still waiting for test results he ordered. My understanding if all tests are negative he will prescribe Forteo . I still have questions for this provider, though, especially wanting CTX and P1NP bone turnover marker baselines before starting treatment as well as to determine if treatment is working. This provider had the same recommendation: repeat DEXA scan in 1 year. He ASSURED Me Forteo “will work!” He said the people it doesn’t help are patients who continue to smoke, poor diet, inactive, etc.
This is my first time sharing in this support group. I know this is a lot of information, hopefully helpful. Most disappointing about Mayo is not having at least ONE follow up visit with the Endocrinologist before I left for unanswered and new questions, after digesting everything I learned while I was there( 2 days).
I wish you the best in finding a “good” provider as well as the best treatment options for you!
Hi @fireweed4286 thank you for sharing your story and personal experience at Mayo Clinic!
What tests did your endo at Mayo do to check any possible secondary causes of your osteoporosis, considering you had a vertebrae compression fracture at a young age of 56?
In case you are interested in knowing your P1Np, there is a way to order online yourself but with self pay only. Link for the thread:
https://connect.mayoclinic.org/discussion/self-pay-for-ctx-p1np/
Hypercalciuria is a concern in the overall picture. I'm sure your docs will want to sort out possible cause(s) and a plan for management and or treatment.
Keep us posted and best wishes to your bone journey!
Wow. So upsetting to read what you’ve went through. Awful really. But it seems to be a bit of a pattern I see with this unfortunately.
I don’t know what this means?
I specifically asked again about a P1NP test ( I now had a CTX value per the labs he ordered) prior to starting any treatment in effort to monitor if therapy was working in a couple months vs waiting an entire year for a DEXA scan, but he reiterated a 1 year follow up DEXA scan is his recommendation.
I had the Dexa for 3 straight years-no improvement -but the CTX and P1NP? What kind of tests are those & what is learned from them?
Thanks for sharing your history. It does help
I’m currently scheduled in Menomonee Falls medical college of Wi and Cleveland clinic in April.-also on waiting lists to get in sooner. I may go to both if needed. In Green Bay all I’ve gotten is Alendondrate and that hasn’t made any progress. Cleveland did a virtual. They stated that alendondrate will not improve my density.