← Return to Newbie confused by doctor options to choose, including Keith McCormick

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@roisin11

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!

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Replies to "Hi stacibw, it's great that you found this platform. Given how young you are, it's also..."

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!

Thank you for this well written and thorough response. It is really helpful. I feel like every day is crucial and that is adding a lot of unnecessary stress. Finding providers has been incredibly difficult. I really want to find someone in my area (Atlanta or Athens ga) who is an “expert” but thus far am coming up with no one. I want functional medicine, but am shocked at the rates ($660 for initial consultation and $350 thereafter) which insurance doesn’t even acknowledge.