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?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@windyshores

It is possible that you are ingesting too much calcium. On Tymlos I had calcium intake of 800mg not the usual 1200 and the levels stayed stable. Everyone is different. It's great that your blood tests were fine. You can ask if the higher level in urine means you are ingesting too much!

Jump to this post

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.

REPLY
@doglover1962

Thank you for your response. I get all my calcium from my diet (dairy, nuts, seeds, vegetables and fruits). I take 3,000 ius of vitamin d. The pharmacist at CVS Specialty said you should have both blood and urine test for calcium prior to using Teriparatide. My endocrinologist never tested my urine for 24 hour test. She tested my blood for calcium and calcium ionized both of which are in normal range. I'll see what my aprn has to say about this. I was also thinking of lowering my dietary calcium a bit to maybe 1,000 mg for now. Will have to wait and see. I shouldn't have to see more than one provider about my osteoporosis, but sadly, this is the case.

Jump to this post

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.

REPLY
@lynn59

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.

Jump to this post

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!

REPLY

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.

REPLY

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.

REPLY
@lynn59

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.

Jump to this post

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.

REPLY

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.

REPLY
@lynn59

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.

Jump to this post

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!

REPLY
@doglover1962

No, I haven't. What is that type of scan? What can it show? My endocrinologist never suggested this scan.
Thank you for replying to my concern.

Jump to this post

"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.

REPLY
@lynn59

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.

Jump to this post

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

REPLY
Please sign in or register to post a reply.