List of questions for the MD - what do you wish you had asked?

Posted by babs10 @babs10, Apr 28 5:39pm

I have an appt with an endocrinologist (my 3rd) on Wednesday. The first two docs were not very interested and the visits were perfunctory. The one I am seeing this week was actually recommended through this group (thanks @mayblin). I am compiling a list of questions so I am as prepared as I can be and I'd love any suggestions.

A little bit of background info: Lumbar spine density is in the osteopenic range, but my L hip is -3.5. I have taken 3 falls in the last year while prepping for hiking and cycling adventures and also fainted in March (virus) and fell on a tile floor - staples in my head, but no fractures.

My mom had OP, but she had lupus/lymphoma and was on prednisone for years and also endured chemotherapy. She didn't ever exercise. The docs put her on Fosamax (20 years ago maybe) and she had a spontaneous fracture of her femur (related to the meds? I don't know.)

My DXA scan was on my left side only and included L1-4, the femur neck and hip. I have asked for the images, but they have not been forthcoming. I'll go in tomorrow and see if I can get a copy.

My insurance has approved Tymlos and Teriparatide ($$$$$, but I'll get it if that's what is recommended).

If you had an appt with a new doctor, what are the things you wish you had asked and didn't?

Thanks so much.

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

@susanfalcon52

mayblin,
Not offended. The problem that I face- and others face - is that Dr McCormick knows more than our doctors. I see an endocrinologist and a rheumatologist. Neither had heard of McCormick. Neither was interested. When I asked them questions that were generated by McCormick’s book, they were challenged.
Without his books, I would be navigating this disease blind. Just accepting whatever my under educated doctors tell me.

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Agreed. I have learned a lot from his books and used some of the research articles he cites about med sequencing in my insurance appeal.

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@babs10

Hi @mayblin,
Over the weekend, another person on a different site also mentioned the hip score deviating from my other scores. She thought it was odd because there is more trabecular bone (than cortical bone) in the hip so she thought that score was atypical and an outlier. No one else has mentioned that so I definitely will. She thought it may have been a positioning error on the DXA machine.

I do not have a TBS score. I'm going over to the imaging center today to see if I can get any more detail plus an actual copy of the images. I'd love to get another scan but have not found a location that has the TBS software. Maybe Dr. M. will have a recommendation.

Thank you for weighing in and for all else - and stay tuned.

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@mayblin, I WAS able to get a disk of my DEXA scan and am really happy to have that. There is no deeper level of detail on my report. I

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@babs10

@mayblin, I WAS able to get a disk of my DEXA scan and am really happy to have that. There is no deeper level of detail on my report. I

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I’m happy for you! If you are going to have a new Dexa (with tbs hopefully), see if you can find a big university hospital or medical center where they use mychart. All my records including all images, labs, clinical notes are in there and could be easily pulled out for any doctor to see. Very convenient!

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@susanfalcon52

mayblin,
Not offended. The problem that I face- and others face - is that Dr McCormick knows more than our doctors. I see an endocrinologist and a rheumatologist. Neither had heard of McCormick. Neither was interested. When I asked them questions that were generated by McCormick’s book, they were challenged.
Without his books, I would be navigating this disease blind. Just accepting whatever my under educated doctors tell me.

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I was simply stating a fact, and am glad you understood.

No doubt McCormick book is very valuable and worth every penny. He pulled and presented vast information together. The book is a good investment of our money.

Too bad many doctors nowadays are too “busy” to spend quality time with each patient. But the best doctors I’ve encounted so far, spend a lot of time listening and discussimg with me without rushing. It is just very hard to find them. Good endocrinologists are far and between. If you could find an endo do 100% bone consulting you are in luck. If you find one who does or did real bone research and still seeing patients, you hit a mini jackpot. For most of us, I think finding one endo who has treated sufficient op patients and who keeps up with most recent treatment/management trends, is already good enough.

This forum is so rich of info and it’s free! I regret joining too late.

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My beginning would start out with demanding bone markers. There isn’t or shouldn’t be a plan until you know what your bone health looks like and you can then make a path for what the next step looks like for you. Don’t get put on meds until you capture that picture we should have ALL HAD!

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@frogwhizzer, Thanks. I agree and it's on the list! Thanks for weighing in.

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@mayblin

I’m happy for you! If you are going to have a new Dexa (with tbs hopefully), see if you can find a big university hospital or medical center where they use mychart. All my records including all images, labs, clinical notes are in there and could be easily pulled out for any doctor to see. Very convenient!

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@mayblin, I have My Chart, but the scans do not appear. I hope the disk is of good integrity!

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@babs10

Hi @mayblin,
Over the weekend, another person on a different site also mentioned the hip score deviating from my other scores. She thought it was odd because there is more trabecular bone (than cortical bone) in the hip so she thought that score was atypical and an outlier. No one else has mentioned that so I definitely will. She thought it may have been a positioning error on the DXA machine.

I do not have a TBS score. I'm going over to the imaging center today to see if I can get any more detail plus an actual copy of the images. I'd love to get another scan but have not found a location that has the TBS software. Maybe Dr. M. will have a recommendation.

Thank you for weighing in and for all else - and stay tuned.

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My hips were the first to show bad numbers on Dexa. But, my spine eventually followed and is now just about as bad. I had a spine fracture after slightly improving numbers. I did finally have a TBS score, but no charts, it shows mild degradation, just slightly above the worst zone. I work out 2-3 hrs a day, partly in pool after fracture. I’ve always exercised. I’ve been on progesterone for years. Now trying other hormones. I’m afraid part of the reason some doctors seem short, aside from time, is that they’ve seen in the majority of cases, that for people who have true osteoporosis, nit osteopenia, that exercise, diet, and maybe even hormones aren’t enough. That said, I don’t want to add other new medical issues.

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Additionally, my CTX-375, P1NP-51 were all at pretty good levels. So, that made me think that’s why doctors don’t always rely on those. I still fractured and DEXA and Tbs aren’t good.

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@babs10

@mayblin, I have My Chart, but the scans do not appear. I hope the disk is of good integrity!

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Did you have your appointment? How did it go?

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