Newbie confused by doctor options to choose, including Keith McCormick

Such a well written post @stacibw! You articulated so many of my concerns and questions so much better than my original post. Thanks for the well thought post

My gyn is not up to date with osteoporosis, but told me she would work with a functional doctor if I found one - as long as she felt they would use meds if needed, and as long as they would work with her.

My PCP won’t work with anyone (she is about to be replaced).

I have a referral for a local endo - and an appt in August, but don’t know if she is open to working with anyone else or not.

Thanks for the feedback. I’m sending in my info to McCormick in hopes for a consultation before my other appointments to get me headed in the right direction.

Thanks,

I googled “how to get an appt with mayo” and a screening questionnaire was completed. Then I waited for them to call me.

Excellent! I'm presuming the appointment is via Zoom or are you close and go in person?

@stacibw I haven't told my doctors that I talk with McCormick!

I wonder if you can get on the cancellation list (and call at 10 am to see if there are any!).

Could you make an appointment with McCormick that comes after your Mayo consult? Then if your consult goes well, you could cancel the McCormick appointment. If you think you want a second opinion, you could keep the appointment.

Hi stacibw, it's great that you found this platform. Given how young you are, it's also great that you're trying to get a handle on what is best to do. First of all, nothing is urgent. Your condition is not going anywhere and any deterioration is slow. The most important thing other than fact finding and making appointments is to avoid situations where you could experience a fracture. So waiting for months for an initial consult is fine. Osteoporosis (OP) treatment is usually managed by endocrinology and rheumatology, though PCPs will and do manage care also. In my opinion, it's best to go to a specialist with training and experience in treating OP.

My PCP referred me to the care of my rheumatologist who simply prescribed Evenity based on my DEXA scan results and did no lab work whatsoever. I then scheduled with an endocrinologist who is a leading researcher in OP and waited a year to see her. My insurance denied Evenity, my rheumatologist then prescribed Tymlos and I declined that. They are both similarly priced and it didn't sit well with me that my insurance was dictating treatment, so I waited. While waiting, I had a consultation with Dr. McCormick, who recommended the lab work and also recommended Evenity. He shared an interesting tidbit, that he had seen a few clients whose distal radius scores got worse after Tymlos, and given that my worst score is there (at the wrists), he was glad that I had declined to take it. A year later I saw the endocrinologist who ordered all the labs but one and also prescribed Evenity to be followed by Reclast as I had had one infusion back in 2018 with no adverse side effects.
So, I knew what I needed and when my insurance declined again, this time dictating that I do Tymlos and Forteo beforehand (another story about the stupidity of that), I looked into paying out of pocket. I got one quote of $13K per month (uh huh!) and another at the retail cost of $2,650 or so per month. I agreed to pay that, and then the pharmacist worked with the Amgen rep and appealed the decision and won! Somehow they were able to get the medical part of my insurance to cover some of the cost (vs the medication part of my insurance run by Caremark), which qualified me to apply for Amgen's support program. I now pay $25.00 per month and have had eight treatments thus far. I mention this because you will probably run into this issue as well.
So my OP is being managed by an endocrinologist (who does all the testing and DEXA scans), rheumatology (through which I get the treatment), and I continue to consult with Dr. McCormick and use his supplements. I also work with functional integrative MD and their nutritionist for IBS. From diagnosis to treatment start took about 2.5 years for me, but only because I refused treatments that were covered in favor of getting the treatment that was prescribed. There is a lot . . . a lot of information to gather and learn, so take your time, take a deep breath and know that Mayo endocrinology and Dr. McCormick will most likely give you the best advice for your needs. Good luck!

McCormick did Forteo himself and has done well. He broke cortical bone. I did Tymlos first and my hip (including cortical) gained quite a bit. I think it is reasonable to do Tymlos first and then Evenity. McCormick is a big fan of Evenity right now, it seems, but the other meds are good too. You can do Tymlos, covered by insurance, and if gains are not enough, iinsurance should then cover Evenity. That is what I am doing. Just my two cents!

Just to be sure I was giving accurate information, I emailed Dr. McCormick to verify whether or not he can order tests, and/or prescribe medications. He just got back to me. This was his reply, "I am working with people on an information and educational basis only...not as their doctor. They still need to work with their medical professional. I am just here to help them understand bone loss and to help in the way they can receive good care from their doctor. I do not prescribe and can give ony general advice on how to approach their skeletal health. Hope that helps clarify. Keith"

Hello dna41 and thisoldewe -
How long have you been taking Prolia? And has your doctor been open to help you wean off Prolia? Are you going to take another osteoporosis medication or going to manage it without medications?

I would like to get off Prolia and plan to talk to my endo in June. I've taken Prolia 3 times and would like to not take it come the 4th time. Any suggestions on best way to approach this subject with the endo?

All the best to you both.