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Has anyone had a rems bone scan or tbs bone scan?
Osteoporosis & Bone Health | Last Active: 5 days ago | Replies (82)Comment receiving replies
@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.
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@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.