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Recently diagnosed with severe osteoporosis of lumbar spine -3.4 T sco
Osteoporosis & Bone Health | Last Active: Apr 1 6:51pm | Replies (68)Comment receiving replies
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.
Replies to "I’m starting teriparatide in a week or so, and I’m worried I’m not going to be..."
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.
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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!