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Getting insurance to cover an anabolic
Just had my first endocrinologist appointment. What a disappointment that was! My hips/femur are osteopenic and my spine has a T-score of -2.3, but my TBS is severely degraded at 1.19. My endocrinologist said she has no experience treating someone with a degraded TBS and I'm the first patient she saw with that information. She said it absolutely makes my bones much more fragile than the T-score alone would suggest, but she said insurance will not cover an anabolic for me because my T-scores aren't low enough and they won't approve an anabolic based on TBS alone. She suggested I go on HRT since I'm only 8 years out from menopause and I have bad menopause symptoms. I'd love to take HRT but I'm a high risk for breast cancer so I'm scared to take it. She said HRT doesn't cause breast cancer and I know that, but if any cancerous cells do appear the HRT will "feed" it and I certainly don't want to do that! I asked her about Evista and she said "absolutely not"-since I already struggle with hot flashes she said Evista will make my life hell. She doesn't want to give me bisphosphonates since she said they cannot be taken long term and I'm young to start taking them, but she said that would be the only other option. I'm inclined to just up my strength training and modify my diet for the next two years and then get another DEXA-I suspect that by then my BMD will have fallen at or bellow -2.5 and perhaps then I can get an anabolic. What would you do?
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Looks like your doctor is correct in not starting you on a bisphosphonate for the low TBS as they don’t appear to improve it. This report discusses low TBS and related conditions that may be contributing to it. I assume she has explored those in your case.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10118821/
If I were you, I’d examine my lifestyle for areas to improve it (diet, exercise, stress reduction) and adopt a wait and see attitude. If your T-scores decrease then perhaps you can start an anabolic then.
Not everyone who has osteoporosis fractures and while an anabolic can reduce the risk, the absolute risk reduction percentage is only 2 to 6% depending on which one you take. This means that few actual fractures are prevented. For example, for Evenity, out of 100 women treated with the medication, 6 fractures were prevented (6%) while 12 fractures occurred in the control group not taking Evenity. It’s good news for those whose fractures were prevented but overall, the vast majority of women (88) did not fracture.
While it’s good to reduce your odds of a fracture, it’s also important to understand that medications are not a fix for this disease and are just a tool to help you avoid fracturing along with other approaches like HRT, diet, exercise, etc.
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4 Reactions@oopsiedaisy Thank you for your reply! Yes, my endocrinologist also explained to me that these medications can only offer a slight risk reduction at best. She also told me that once the trabecular bone is degraded there's really no going back-those connections are gone forever. Anabolics can thicken the remaining trabeculae but they can't reconnect any broken struts-my bones will always be weak. I felt as if she was telling me my situation was pretty hopeless so I felt pretty depressed coming out of there. Of course, I'm going to do all I can to try and live as best I can without breaking any bones, but damn....I felt so discouraged.
Have you calculated TBS-adjusted FRAX? It may tip the intervention threshold in your case and help support insurance approval for anabolic therapy.
Your endo had all the right points. But if you’d like to improve TBS without insurance coverage of an anabolic, self-pay teriparatide (generic Forteo) via Mark Cuban’s Cost Plus Drugs maybe the most affordable option - using HSA or FSA could further reduce cost.
Has Duavee been discussed as an option? It seems like it could align with several of your goals - menopausal symptoms relief, modest antiresorptive benefits, and potentially a more favorable breast safety profile given your family history. Depending on your priorities, it could be used either to help prevent further bone loss, or as a follow-up antiresorptive measure after teriparatide, maybe??
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1 Reaction@soggybones I'm so sorry! That news would be very difficult to hear. I wish you all the best!
@mayblin My FRAX without TBS is 7% likelihood of a major osteoporotic fracture in the next 10 years. Adjusted for TBS (according to AI) my FRAX is 10%. I was surprised because I would expect it to be much higher. I didn't discuss Duavee as an option, but if it can relieve hot flashes, slow bone loss and not increase my risk of breast cancer than I'd like to look into that. I will definitely bring that up with my doctor. Thank you!
@oopsiedaisy Thank you! The whole appointment was actually pretty depressing, but I felt as if this doctor was just being honest with me. What can I do? except solider on!
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2 Reactions@soggybones I feel so disappointed with the state of osteoporosis care.