Supplements with Tymlos or Forteo

Posted by drsuefowler @drsuefowler, Aug 19 11:42am

I tried for years to improve my bones naturally with diet and exercise. Then I broke 4 bones in 13 months. I tried the full dose of Tymlos and had horrible side effects. I then tried 20mcg (2 clicks). I suffered a fragility fracture of my left foot by just going for a walk. I increased the Tymlos to 40mcg (4 clicks). I continued eating very well taking lots of good supplements. I thought that the combination would help my bones. After three 24 hour urine tests, I have finally lowered the amount of calcium in my urine to 252 (reference range is 35 - 250) by cutting out all calcium supplements. I am still taking collagen, boron, vitamin K2 MK7, vitamin D, and a very small amount of Magnesium. I don't feel well since I cut back on the calcium and worry that I am not getting enough. I would like to take more Magnesium, but don't want it to interfere with calcium absorption. One endocrinologist thought it was OK to lose 388 mg of calcium in 24 hours. The second endocrinologist wanted me off Tymlos immediately to protect against kidney stones. Both don't seem to care what other supplements I take.

I want to know if the Tymlos is even working. Last December on 20 mcg, my P1NP was 78 and my CTX was 519. In May my P1NP was 190 and my CTX was 1401. According to the ratio, I was not doing better. Recently, I had another CTX test and that was basically the same at 1414. The Endo refused to order a P1NP and then left the practice. I'm trying to get the other endo to order one. I'm afraid to increase the amount of Tymlos because my calcium blood level is at 10.0 (reference range 8.6 - 10.4). I am afraid to try Evenity, since I am sensitive to almost all medications. If there is a side effect, I usually get it.

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windyshores | @windyshores | Aug 19 12:26pm

@drsuefowler I have wondered if 20 mcg would do much, but what did your doctor say?. I hope that the discussion of "ramping up" doesn't give the impression that we should not keep trying to go higher. The ramping up method does not eliminate side effects. For me it simply made them tolerable.

My blood calcium is always 10.3. I did 7 clicks most of the time on Tymlos after ramping up from 2. My doctor had no worries about my calcium level or kidney stones. But your problem of urine calcium is more of an issue than blood calcium, from what you have written (I don't know much about urine calcium). Its great that you got it down but how does that affect calcium in the blood? Are you eating dairy?

Your P1NP had a much better value than mine at 18 months on Tymlos, or mine on Evenity. Your CTX is way higher. What does your doctor say about this? Or can you consult with Keith McCormick on this? My values don't match what seems to be going on at all! (I often wonder if my kidney issues are affecting the CTX)

ps I take magnesium two hours away from calcium so they don't compete- read that a long time ago but double check with doc!

drsuefowler | @drsuefowler | Aug 19 4:41pm

Thanks @windyshores. You are always so helpful and it is much appreciated. My endocrinologist originally told me it doesn't matter how much Tymlos I take because of the way it works. I read that on the Tymlos trials 20 mcg didn't work so they increased the amount. I think there was some response on 40 mcg, but better on 80 mcg. Probably 60 works well, but they didn't check it. I eat cheese and yogurt but I don't tolerate milk. Fruits and vegetables also have some calcium. I get about 600 - 750 mg of calcium per day from food. Since your blood level was 10.3, maybe I don't have to worry about mine being 10. Tymlos increased it from 95. I don't know what my baseline urine calcium level was, but I assume that it increased as well from the Tymlos. Thanks for the suggestion about taking magnesium away from calcium. I wonder if it matters when the calcium comes from food?

I have arranged for a P1NP test and will see my endocrinologist next month. I am considering a consult with Dr McCormick. I love his book, Great Bones, that you recommended. I doubt that I can find a health practitioner who will work with him, since my docs are way too busy.

Interesting that your bone markers don't match your excellent DEXA results. Maybe that's why some docs don't like to do those blood tests. I get the feeling that my docs just want to put me on something and forget about me. They keep pushing Prolia and say that most of their patients are on it. I don't want a lifetime medication that doesn't build bone.