1. < Osteoporosis & Bone Health

Recently diagnosed with severe osteoporosis of lumbar spine -3.4 T sco

Posted by doglover1962 @doglover1962, Jan 26 12:46pm

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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windyshores | @windyshores | Mar 27 10:12pm

@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.

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debbie1956 | @debbie1956 | Mar 27 11:20pm
In reply to @babs10 ""Radiofrequency Echographic Multi Spectrometry (REMS) is a non-ionizing technology that evaluates the bone status at axial..." + (show)
@babs10

"Radiofrequency Echographic Multi Spectrometry (REMS) is a non-ionizing technology that evaluates the bone status at axial skeletal sites by analyzing raw ultrasound signals."

Very hard to come by. I've seen them available in the Chicago area, NJ, NC and MA.

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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

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lynn59 | @lynn59 | Mar 29 5:22pm
In reply to @mayblin "I only have p1np at 13 mo, which was 400, then was tested again at 17mo..." + (show)
@mayblin

I only have p1np at 13 mo, which was 400, then was tested again at 17mo for both ctx (910) and p1np (200). The baseline wasn't tested and I won't have it ever (lost opportunity). Tentatively I will be tested for both markers every 3 mo going forward. This frequency maynot be necessary but i like it. It is said if one is to take forteo/teriparatide, it's best to get at least p1np tested at 3-6 mo after the start of forteo to ensure the drug is working. Some insurances may not pay for bone markers even if you have your doctor's order. You will know after your first test. If insurance covers btms, I don't understand why doctor won't write the order if a patient requests them, although interpretation of tests is another matter.

Get a dexa with a tbs is a good idea. You might have to call radio,ogy dept directly. My results 13mo post forteo isn't remarkable. But I was comforted by my tbs improvements to the bottom of the normal range, whatever it might mean. And it's important to stick with the same dexa machine or facility from this point on for future comparison. Not sure if many ppl get scanned for the forearm, I did read some ppl's forearm t scores reduced after the therapy. Not sure the significance for it. But I'd prefer to have a stronger spine and femur/hip than a stronger forearm personally. There was a MD, whose mom has op and fell, broke her arm. The MD was glad that she didn't break hip/femur. I felt the same, although we don't have a choice when we fall.

100% agree with @windyshores : bone markers are not magical solutions, neither can they offer a solid base for our decision yet (but who knows how it might evolve in the future)? The usage of them entirely is up to you and your doctor. In the end dexa is still the golden standard for now. Our ultimate goal is to try our best not to frature.

@windyshores it seemed like you might be a (btm) non-responder to anabolics. Dr. P Miller mentioned he came across a few ppl like you but turned out they had great improvemnts with their dexas. My btms is out of normal range yet bmd increases are not reflecting correspondingly.

"we are all looking for certainty and there isn't any!", hope someday we have one!

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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.

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lynn59 | @lynn59 | Mar 30 8:45am
In reply to @babs10 "@lynn59, Make sure your family doctor says the tests are "medically necessary" or they may not..." + (show)
@babs10

@lynn59, Make sure your family doctor says the tests are "medically necessary" or they may not be covered.

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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.

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babs10 | @babs10 | Mar 30 8:58am

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.

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lynn59 | @lynn59 | Mar 30 9:05am
In reply to @doglover1962 "Sounds so familiar with my endocrinologist. She said to take the injection for 2 years and..." + (show)
@doglover1962

Sounds so familiar with my endocrinologist. She said to take the injection for 2 years and repeat a dexa scan after. I was lucky enough to see a functional medicine aprn that although she is not an osteoporosis specialist, she has ordered various tests including the bone markers. I have an upcoming appointment with Dr. McCormick in May. Don't get discouraged because you have to keep trying and get a 2nd opinion with another endocrinologist. I just made an appointment with UCONN Osteoporosis center but that's in July. In the meantime, perhaps your family doctor can send a referral to another endocrinologist? That's what I did because you have to be your own health advocate. Sounds like you are doing that but keep up and don't let your endocrinologist rule you and even ignore you. They should be working for you!

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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?

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2 replies
mayblin | @mayblin | Mar 30 9:24am
In reply to @lynn59 "Hi doglover1962. It’s such a shame that we are put on such a spinning wheel, but..." + (show)
@lynn59

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?

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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.

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lynn59 | @lynn59 | Mar 30 9:35am
In reply to @mayblin "lynn59, if you haven't already, it may be a good idea to do a 24hr urine..." + (show)
@mayblin

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.

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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?

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1 reply
doglover1962 | @doglover1962 | Mar 30 10:01am
In reply to @lynn59 "Hi doglover1962. It’s such a shame that we are put on such a spinning wheel, but..." + (show)
@lynn59

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?

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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.

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2 replies
doglover1962 | @doglover1962 | Mar 30 10:03am

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.

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