Dexa Scan after 18 mo on Tymlos

Posted by kathleenintexas @kathleenintexas, Sep 13 6:54am

DEXA scan of spine from June 2022 showed T-score of -4.7 (age 71). I had a baseline scan November 2022 before starting Tymlos at a different facility showing -5.1, but I am not sure it was accurate, because a recent scan result from there was not believable.
Decided to go back to the original facility in August 2024. T-score was -4.1, which is a 12% improvement from the 2022 scan, so the Tymlos is working. I am very pleased with the results. If the -5.1 scan was accurate, then the improvement is even more impressive.
I am working with Dr. Keith McCormick (phone consults as he is in Massachusetts and I am in Texas) and after the Tymlos he will recommend the next medication to protect the bone I've gained. He is so knowledgable and I trust him. He was diagnosed with osteoporosis at age 45, successfully increased his bone density and has maintained it for over 10 years. I had seen two endocrinologists and my primary and they didn't know a fraction of what Dr. McCormick knows. I really recommend you work with a true expert who knows about bio markers (P1NP, etc.).

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

ann707 | @ann707 | Sep 13 10:05am

Machines can make a significant difference. I went to a rhematologist that had the top of the line of dexa machine and my spine was -4. When he left his practiced I went back to my old doc and machine and the reading was -3.6

jacklin | @jacklin | Sep 14 11:25am

Is Dr McCormick at the Brigham and Women in Boston?

doglover1962 | @doglover1962 | Sep 15 9:29am

In reply to @jacklin "Is Dr McCormick at the Brigham and Women in Boston?" + (show)

@jacklin Dr. McCormick has his own practice in Belchertown, Mass. I consult with him and he is fantastic and so knowledgeable. I highly recommend him.

jacklin | @jacklin | Sep 16 4:20pm

Thank you for the info, I’m about an hour away from Boston, will look him up.

windyshores | @windyshores | Sep 16 6:37pm

In reply to @jacklin "Is Dr McCormick at the Brigham and Women in Boston?" + (show)

@jacklin Dr. McCormick is not an MD. He is a chiropractor in private practice who now focuses on osteoporosis. His first book was "A Whole Body Approach to Osteoporosis." His more recent 700 page book is "Great Bones."

McCormick cannot prescribe so @kathleenintexas how do you get around that?

My doctor does not do bone marker testing and explains that they do not tell us everything going on in bones. One example: my kidney disease affects CTX. I have talked with McCormick for maybe 16 years and of course he relies on bone markers. There are other areas where they differ. I like having different opinions, actually, though it is hard too.

judy58 | @judy58 | Sep 16 8:18pm

In reply to @ann707 "Machines can make a significant difference. I went to a rhematologist that had the top of..." + (show)

You should always try to use the same machine. If you change machines they are each calibrated differently.,

zooie | @zooie | Sep 17 10:39pm

In reply to @windyshores "@jacklin Dr. McCormick is not an MD. He is a chiropractor in private practice who now..." + (show)

I'm wondering how you are able to navigate having different specialists, each with his own opinions. Are your specialists aware that you are also working with other specialists?
Since I've only been recently diagnosed with severe osteoporosis, my primary concern was to get on Tymlos asap and I am currently only working with an endocrinology PA. However I'd like to work on building a team with doctors who specialize in osteoporosis. I'm wondering what the best approach might be.

windyshores | @windyshores | Sep 18 6:21am

In reply to @zooie "I'm wondering how you are able to navigate having different specialists, each with his own opinions...." + (show)

@zooie I have had a very good endocrinologist at a major teaching hospital for 20 years. He does not do bone markers and says they give an incomplete picture of what is going on in bones.

Two years ago I saw another endo who does bone markers a couple of times and yes, told her I was also seeing the other endo.

I have also talked with McCormick at various times over 15 years or so. My endo doesn't know I talk to McCormick though I have mentioned McCormick's use of bone markers.

McCormick is not on my portal, obviously, so there is no need to tell any doctor about him. MY PCP knows because I ask them to order bone markers. I have considered talking to my endo about how everyone is reading "Great Bones" and watching videos and discussing bone marker testing so often!

You don't need a team. You do need a doctor you can trust. Osteoporosis is a long term issue with long term treatment for many of us.

When I had cancer I got 4 opinions. Seeing different providers is not making a team. It is just getting different perspectives and then deciding which one to follow or in some cases combining them.

drummergirl | @drummergirl | Sep 19 3:57pm

In reply to @windyshores "@zooie I have had a very good endocrinologist at a major teaching hospital for 20 years...." + (show)

I have been concerned about taking any of the bone building drugs, since I have also had cancer and worry about stimulating bone leading to reoccurrence. Did any of your doctors shed any light on this? I can’t get a good answer.

windyshores | @windyshores | Sep 19 6:15pm

In reply to @drummergirl "I have been concerned about taking any of the bone building drugs, since I have also..." + (show)

@drummergirl I had breast cancer- and Reclast, Fosamax, Zometa, Prolia, Xgeva are all used not only to protect bones during treatment but also for their potential to prevent spread to bones, I was told.

Noone has gotten cancer from Forteo or Tymlos. I felt comfortable with them. They work through the parathyroid and I have no issues there.

Prolia is the one that concerned me the most at first, and my doctors agreed. My immune system is a little wonky (lupus, sensitivities etc.) and I worried that any suppression of immune strength might let cancer back in. Apparently this is not a valid issue but noone was dismissive because it was apparently a concern when Prolia first came out.

Finally, I have read (and been told by McCormick) that Evenity may affect the B cell immune system. It suppresses sclerostin which has functions all over the body. I don't think anyone really knows what long term effects might be but I have not read anything about cancer. That doesn't mean there isn't anything out there. Have you asked your doctor? Let us know!

I felt safest on Tymlos to be honest which is ironic since it was the only type of drug with a cancer warning! I am 10 years out from cancer now. Knock on wood. Hope you find an answer for yourself.