Has anyone had a rems bone scan or tbs bone scan?

I go to Dr. Kennel at Mayo. He is very flexible and a great listener.

@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.

@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.

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.

@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 go to Dr. Kennel at Mayo. He is very flexible and a great listener.

@drsuefowler
The original endocrinologist stated I was borderline but prescribed a medication called Thyrolar 3 (I believe, this was more than forty years ago). I was in college at the time. It had significant side effects a few hours after taking it. Never really tolerated it. Graduated from college, moved to a new area and the new endocrinologist put me on Synthroid which I tolerated better. Years later after my first child was born, the endocrinologist suggested I start to wean off, but take my time. His theory being that originally I may have had some type of infection instead. Since the original test showed borderline, he thought that I may have a ‘working’ thyroid gland after all. I did it very slowly over the course of a year subsequently moving to another area. New doc tested my thyroid off the meds and yes, I was on the lower end but not what he deemed enough to treat. I have had no problems since. My mother was also border line but her doctor never treated her for it. She lived a normal life all the way to 96 years old.

I believe I got lucky with that endocrinologist who took the time to see if I really needed the meds or not. I also believe that was back when doctors took more time with their patients and it wasn’t such a drug driven era. This is pre HMO’s and small private practices were common; not these huge medical groups with drug reps dropping by constantly with designer drugs and perks for the docs.

Prolia is the big push right now. Undoubtedly effective for people already fracturing. My rheumatologist says it is safe for life and that is what he wants for me. My primary care PA stated “I don’t know why all of you seem so scared to take Prolia, it has a fantastic record”. Apparently she has other squeamish patients. No mention of potential side effects, like it’s a multi vitamin.

When I have stated my hesitation about the side effects it’s always a come back of “It impacts a very small percentage of people”. Welp…someone always occupies that percentage. My rheumatologist stated he never had anyone suffering from hypercalcemia due to Tymlos. Well, I developed it, so I occupy that small percentage.

Bottom line; we all have to come to our own peace with the treatment plan we follow. God help us all.

Not all DEXA machines have the option of TBS software. In my area it was plain DEXA. My score of severe osteoporosis (-3.8 and -3.6 for two vertebrae) seemed off because of the big variance between low and high scores. Plus I fell several times after the scan and nothing broke despite my doctor telling me I was very fragile. I got a REMS and scored as osteopenia. The doctor looked at my DEXA scan and said it was done wrong. Whether the tech positioned me wrong, or my vertebrae distorted the x-ray, or the machine wasn't calibrated correctly, I don't know. As of 2024, Medicare didn't cover the REMS procedure. Mine cost $150. Medicare did cover the doctor's cost, both the initial visit and a follow-up consult. If there is a DEXA machine near you with TBS, you have to ask for TBS beforehand, they don't automatically provide it. The doctor who oversaw my REMS said he was comfortable with me getting a DEXA scan again but only with TBS. It's easier for me to do the REMS so that is what I will continue to do. Here is a link to a REMS locator. I don't know if all providers are doctors. I felt comfortable using the relatively new technology because it was offered by an orthopedist who is becoming somewhat of an expert on the equipment in the US: https://www.echolightmedical.com/en/find-your-rems-center-in-usa/

Do you happen to be in the Twin Cities of MN? I'm interested in knowing where you got a REMS for $150 as Osteostrong is around $250 I believe. Thanks.