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Has anyone had a rems bone scan or tbs bone scan?
Osteoporosis & Bone Health | Last Active: 4 days ago | Replies (82)Comment receiving replies
@glojo
I agree with open-minded; but not with automatic compliance. I was on thyroid meds for years until it was decided that I had been misdiagnosed and then taken off of the drug slowly over the span of a year. My thyroid is functioning normally. I was misdiagnosed with COPD (non smoker) during the COVID pandemic and put on an inhaler giving me side effects that made it more difficult to breathe and actually lost my voice. I convinced my GP to give me a referral to UCLA where it was determined I did not have COPD, just severely scarred up lungs from most likely untreated childhood asthma. I am now on the appropriate maintenance inhaler.
When diagnosed with osteoporosis I was given the choice of Tymlos or Prolia. I went with Tymlos; unfortunately I developed hypercalcemia and had to discontinue the treatment after five months. Tymlos is an amazing drug for folks who tolerate it. Now I need to find another path.
I state these instances solely to illustrate that I have over my life time been very open-minded and compliant when a physician prescribed meds. I now go into research mode first. There are constantly new developments and there is no way health care professionals and keep up on all of it with their expansive caseloads.
I believe all of the doctors that treated me over the years had only the best of intentions. It is in no way personal nor a dig at the medical community writ large.
I just know that in the end it is up to me to make informed decisions and hopefully find physicians who will work with me.
Replies to "@glojo I agree with open-minded; but not with automatic compliance. I was on thyroid meds for..."
@lhankins, I am impressed that you have done so well discontinuing thyroid meds. I have been on them for 20 years. Originally, my TSH was 3.88, but I was tired all the time. I went to the Mayo Clinic in Rochester for evaluation. The endocrinologist said that I was borderline, and I could choose to take medication or not. I didn't know that it was a life sentence, wanted to have more energy, and decided to take it. Now that I have Osteoporosis and have broken 5 bones in 18 months, I see endocrinologists again. I have asked 2 endocrinologists if I should cut back on the thyroid med, but they seem to think it's not important. They just want to prescribe meds for osteoporosis. I have been on a half dose of Tymlos for 10 months and now Forteo for 3 months. My 2nd REMS test shows improvement in my spine and no change in hips after 6 months on a half dose of Tymlos.
Did your Dr follow you when you slowly discontinued your thyroid med or did you just do this yourself? I was able to get off proton pump inhibitors after 11 years by slowly weaning off them myself. It was not easy! Now I have to be very careful about what I eat.
In my experience, doctors will keep you on any medicine they can forever. It's just easier for them. I think that's why so many of them prescribe Prolia. One endocrinologist told me he has 150 patients on that drug. The gynecologists' office here only prescribes Prolia for osteoporosis with no discussion about side effects or other options. They don't tell you that it may be a lifetime medication. As you may have read on this website, there can be problems with it.
I research everything as well. Treated for R knee pain with 7 injections over about 2 years when pain management finally told me, since the only injection that helped was the first one, that I needed a TKR. Went to knee surgeon and he did an MRI and said it's not my knee, it's my back!!!! MRI of spine showed severe scoliosis and pinched nerve in 2 places. Years and years of knee pain radiating into shin. Several doctors including NIH. Went to walk in clinic complaining of severe pain right shin, like the bone was replaced with hot metal (the very definition of pinched nerve) and sent home with no diagnosis. That was an exacerbation of the pinched nerve. I had L3-5 laminotomy 2 weeks ago. Knee pain...gone.
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What a horrendous path you have been on! Totally agree that compliance is not always, if ever, the best way to go when dealing with the medical profession. I imagine there are notes in my medical chart that state “patient is not compliant.” I will own that one!