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

I agree with what you're saying to ingest less calcium. Will confirm that with aprn! To me, that's common sense to reduce dietary calcium if calcium is high in urine and Forteo pulsing at the parathyroid every day to build bone and possibly raise calcium levels.

I’m starting teriparatide in a week or so, and I’m worried I’m not going to be properly monitored either. My endocrinologist set up the prescription and said come see me in two years, your family doctor can look after you in the meantime! My family doctor’s mouth dropped open as she has no experience with this drug.

When I asked my endocrinologist about a baseline DEXA, she said the one from 8 months ago was good enough and I didn’t need another one until after I finished in two years. When I asked about blood tests, including bone markers, at various stages through the treatment, she didn’t even answer me! I just send her an email asking if there are any tests she recommends to make sure I’m responding appropriately to treatment, as I don’t want to continue taking the drug if I’m one of the people it doesn’t work for, nor do I want to stay on it for 2 years if 18 months is enough. I won’t be surprised if I don’t hear back from her. She is a world renowned researcher in osteoporosis and parathyroid issues. I’m sorry I went to her, as she is more interested in her research than taking take care of her patients. Any advice?
I’m trying to get an appointment with Dr. McCormick but he is busy and getting ready for the Boston marathon.

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!

I agree, I just don’t want to delay treatment any longer. My T-score dropped 5% down to -3.1 in my spine in two years, and it’s been 8 months since I found that out. It has taken me this long to come to terms with medication and which one is the best for me. My family doctor will order whatever blood tests I feel are necessary, so I’m very lucky that way.

I was one of the people (among others) who brought Keith McCormick into the discussion here . I have seen two endocrinologists and have seen McCormick for years. I am just a little afraid people are getting too focused on bone marker tests. My main endo says that they don't give a full picture of what is going on in bones. My P1NP did not show Tymlos was working but I had a 20% gain in DEXA. My P1NP did not rise with Evenity either but I didn't stop (and if I stop it won't be for that reason). My other endo, who does use bone marker tests but with some skepticism, says that studies are showing there is no need to monitor CTX when transitioning to Reclast from other meds, as McCormick suggests in "Great Bones."

I am just saying that all of this is controversial and not studied enough for us to base decisions on CTX and P1NP. There are other tests too, like bone alkaline phosphatase, PTH etc. I don't know what to think. I do feel we are all looking for certainty and there isn't any! And for me anyway, there are no magic side effect free answers either.

Hi @lynn59, have you had some tests done to rule out secondary causes for your bone loss? There are a few important ones I think worthy to rule out.

Personally if I were you, I'd like to have a dexa scan and a set of bone markers done as close to the start of forteo. Depending on facilities, a dexa can cost from $300 or more cash price. You could also get bone markers done at major labs such as Quest without your doc's order. The downside is no insurance coverage, they cost about 100-120$ each.

My Dx was in May 2022 with a dexa scan, and was on forteo by Sept 2022. During that time I saw my endo twice and she ruled out some major causes of OP, later did more tests. I am monitored by dexa on a yearly basis, now bone marker every 3 months. For you, if you have a dexa 8 month ago, it will be hard to tell the magnitude of the gain on forteo at one year after forteo, should your gains on forteo be small (hypothetically there is some bone loss during the 8 mo). If you'd only be monitored by dexa after the completion of forteo (2yr), then the scan 8 mo ago probably is fine. I feel you'd need bone marker done to make sure that forteo is working for you.

Thanks so much for your comments. I have no known secondary causes, I’ve been tested including celiac. What bone markers did you get done, and your endo felt every 3 months was necessary? I’m trying to get a baseline DEXA at a facility that will measure my forearm as well as TBS, but it’s like pulling teeth to find a place that offers TBS in Toronto. No one who answers the phone seems to know the answer! I’m prepared to pay out of pocket. I’m only allowed one every year if I want it covered, so this one 8 months later will be on me, but another on a year later will be covered.

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!

"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.

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