Recently diagnosed with severe osteoporosis of lumbar spine -3.4 T sco
I just saw an endocrinologist (referred by my OB/GYN) and all of my bloodwork came out within normal ranges. Although she did not test my sex hormones (which I believe is the cause of my sudden diagnosis - went from osteophenia of lumbar spine in July 2021 and repeated my bone density test in January 2023) (2 1/2 years later) which revealed my t score of -3.4 (from -2.3). I went through menopause at age 60 as well in 2022. She now wants me to take a 3 step therapy program with either Evenity, or Foreto or Tylmos and then after this therapy is finished to go on Prolia several years and then take an oral or iv bisphosphonate. Has anyone else been on any of these medications and did you have success with bone density and did you experience any severe side effects?
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@mayblin at 18 months on Tymlos my P1NP was 35 (54 before treatment) and after Evenity it has been similar. But I had 20% gain in spine, going from severe to borderline, and 9% in hip. I can only assume that at 18 months, bone growth had stopped. The Evenity score is a big mystery and I am unsure whether to continue, to be honest. At this time I am not going to rely on the bone markers . CTX is consistently low at al these testing times, so anti-resorption may be going on. P1NP goes up very rapidly and then back down again with Evenity so I may have missed it! Who knows...noone seems to!
I am going to ask for another DEXA and will pay...that is the only way to really know about bone density. Of course that still leaves bone quality as an issue! That is what I liked about Tymlos...I felt it improved quality and decreased fracture risk. I would imagine the first 6 months of Evenity do that too.
After seeing the REMS mentioned on this site, I looked into this and discovered one in Calgary, Alberta Canada. I live near Vancouver, BC, but am going to book an appointment in Calgary, a short cheap flight from here. They said the cost is $150.00
Sorry for the late response, and thanks so much for your detailed response. My endocrinologist said it takes awhile for the new collagen to mineralize enough to show up on a DEXA scan. She didn’t say how long, but let’s hope your BMD escalates with your next Dexa in 12 months time🤞. Your CTX is quite high and your P1NP has dropped. How is your doctor interpreting that? I don’t know any endocrinologists in Canada that use the biomarkers, probably because they aren’t covered and like Windyshores said they don’t give the magic answers.
Thanks babs10. I'm in Canada and most blood tests are covered by my provincial health care plan, except of course CTX and P1NP! I think it will cost me around $230 Canadian to get them done.
I'll need to pay out of pocket, too. Glad there is that option and that I (we) can afford to pay - many can't.
Hi doglover1962. It’s such a shame that we are put on such a spinning wheel, but yes, I am on a wait list to see another endocrinologist, plus I’m migrating to a new DEXA machine at a different location that has TBS score capability. I’m getting my baseline DEXA on this new machine on April 9, two days before I get my first teriparatide injection. My family doctor is ordering baseline blood work for me. I need to find out what I should include. I was thinking CTX and P1NP … but reading your post on calcium loss, I was wondering what baseline measures you did and what measures will test again 3 months later?
lynn59, if you haven't already, it may be a good idea to do a 24hr urine calcium to make sure you are not losing calcium via kidney.
As for btms, idk how it works for Canada. In US, if one were to pay outpocket, we could bypass doctor and order online directly. When the tests are on sale, which happens very frequently, they are about 20-25% off, our pocket still hurts though.
I had a 24 hour urine calcium test done in October 2023 for Dr. McCormick and again in early February for my endocrinologist, so I’m sure if something was awry one of them would have told me. In Canada, bloodwork has to be ordered by our doctor, so I want to make sure I have a good baseline requisition request for my family doctor to make happen. Then I need to know when to test again, and what measures. I believe Dr. McCormick recommended retesting CTX, P1NP, Homocysteine and CBC after 3 months of Forteo therapy but I don’t remember anything about retesting calcium in the blood or urine. What are you testing before/after therapy?
Hi Lynn59,
My functional medicine aprn did order tests for vitamin and mineral deficiency which resulted in not enough Omega 3s. I then had more tests done, CTX 742, P1NP 68, Homocysteine 6, Estradiol < 15, alkaline phosphate isoenzyems 90, intestinal isoenzymes 21, bone isoenzymes 46, liver isoenzymes 33, placental isoenzymes 0, macro hepatic 0, N telopeptide 63, creatine, random urine 67, Gliadin (deamidated) AB (IGG, IGA) < 1 and 2.3 for (Igg). No antibody detected. I also had a comprehensive stool test which shows i have Dysbiosis. My aprn wants me to go on a dairy and gluten free diet for 2 weeks and has prescribed supplements as indicated in McCormick's book Great bones. I will be doing this in a few weeks since dairy is my main source of calcium. I have no stomach or digestive issues but I obviously have some inflammation in my gut that I was never aware of. I'm not throwing out all the food I have already purchased and will slowly transition over to this diet.
Hi Lynn59 again! I also had my insulin tested because of family history of diabetes and they came back normal. Also, I'm unable to take HRT because I carry the gene factor 5 leiden heterozygous which means I am more prone to getting blood clots.