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.

@mayblin

@babs10 did he tell you the reason for your hip reading, which is an outlier? This doesn’t reflect the normal bone loss pattern in post menopausal women due to estrogen deficiency.

Could you share your bmd readings for different areas? Thanks

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@mayblin, No, I did ask and he was non plussed. He said it could be structural from birth. Other than that, he had no comment and was not concerned. I'll follow up - it's on my list of follow up questions.

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@mayblin

@babs10 did he tell you the reason for your hip reading, which is an outlier? This doesn’t reflect the normal bone loss pattern in post menopausal women due to estrogen deficiency.

Could you share your bmd readings for different areas? Thanks

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@ripley here they are

(and all comments are welcome!)

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@ripley

Would you mind sharing your DEXA numbers? Can you offer any details on what activity or movement caused your fracture? Thank you.

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@ripley, I shared my numbers under a different person - sorry.

I think you have me mixed up (so maybe you didn't want MY numbers) because I have not ever fractured.

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@babs10

@ripley here they are

(and all comments are welcome!)

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@babs10 maybe I missed, is it a hologic or GE Lunar?

Guess this is your report written part. Mine has a total of 8 pages with graphs

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@babs10

@glojo It IS Paul Miller! How did you know?

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He referenced the Alex Azar story in a you tube video, so that was one hint. I knew he was around 80, and I had heard his philosophy about medications, which sounded basically like what you were told….so…..I don’t think there are too many 80 year old doctors who specialize in osteoporosis anyway!

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@mayblin

@babs10 maybe I missed, is it a hologic or GE Lunar?

Guess this is your report written part. Mine has a total of 8 pages with graphs

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@mayblin, Count your lucky stars and I'm so envious of your detailed report!!! That is mine in total. I asked Dr. Miller why it was so scant on information and he said that's how some of them are. They gave me a disk at the imaging center, but it wouldn't open and they didn't offer any written reports or images. UGH. I spent some time calling hologic centers today, also looking for TBS software and so far, nothing. Needless to say I don't plan to go back to the same place for my next DXA (which also concerns me b/c we are supposed to go to the same place). I thought all DXA centers, machines and techs were fundamentally the same when I started this process so it didn't occur to me to do anything differently -- I went to the center where I get my mammogram. This process has been frustrating.

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@glojo

He referenced the Alex Azar story in a you tube video, so that was one hint. I knew he was around 80, and I had heard his philosophy about medications, which sounded basically like what you were told….so…..I don’t think there are too many 80 year old doctors who specialize in osteoporosis anyway!

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@glojo, good memory and dead giveaways!

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@frogwhizzer

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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would yoube kind enough to list the bone marker tests please? Thank you

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@babs10

Yes, I did and it went well, thanks for asking! The MD spent almost an hour and a half with me. I sent a summary to a friend and will include it here:

This is an older, very experienced MD. He is an 80 year old gentleman and knows his stuff based on his vast local, national and international experience.

He asked me about any falls/fractures and also if I have lost height. His standard is that if you have lost more than 1.5" it is a strong indicator of OP and its severity. Along with fractures, it is one of the top determinant within his practice. If someone has lost height he tests for silent fractures to check for an OP diagnosis because once you fracture from a "non traumatic event," your bones are considered osteoporotic. He also considers balance (says to do balance exercises every day b/c the vast majority of fractures are from falling vs. spontaneous).

When the T score was developed, they had to decide on a severity scale and wondered if severe should be at -2.0 or -3.0 and they compromised and settled on -2.5. Not exactly scientific, but that became the standard. He said that there is hardly any reimbursement for DXA scans anymore and, as a result, almost 50% of the machines have been taken out of practices (especially smaller practices).

He asked about my family history and had reviewed my blood work, etc. Nothing stood out except age and being post menopausal. That's what I figured. He said I can't compare myself to my mother b/c she was on prednisone for many years and that has such a big and significant negative impact on bone density.

He confirmed that the DXA score is only part of the equation - there is also the bone quality and strength.

He wasn't concerned about me only being scanned on one side. He said there is usually minimal variation. He gave me a list of places to go for a DXA that have TBS software so I might do that on my own. He said that it was developed in Switzerland but the raw data isn't the best and he says it might indicate a partial measure of bone quality. I haven't looked into cost. He was "meh" on Echolight/REMS. It seems like he's fine with DXA scores and not impressed by new technology, but that's a guess on my part. He said that for many practices, Echolight/REMS is a money maker not an evaluation that reveals discrepancies or sheds new light that changes anything. Often, the place that offers them will be like Osteostrong and the people don't know how to interpret the results. My impression is that he thinks of them as more of a novel gimmick. He said that when you get a DXA, make sure you go to a place where the techs have ISCD certification - that is the indicator that they are trained.

When he prescribes Tymlos on smaller framed people, he starts with 4 clicks and builds up to assess tolerance. He gets a baseline CTX and P1NP on every patient. He retests 3 months after starting medication and then every 3 or 6 months depending on the patient and the baseline/follow up results.

He recommends 1200 mg of calcium/day and said to get as much as you can from food. The Chronometer app is an easy way to track it. He said an easy way to supplement is to take one Citracal with vitamin D per day. There are some contraindications for certain conditions (hypothyroidism when person is taking synthroid is one) so would need to check that.

He embraces Felicia Cosman's medication sequencing - don't start on bisphosphonates if what you really need is an anabolic.

He prescribes Evenity for 12 months and then an antiresorptive. He likes Reclast. He also said Evenity has practically no side effects which does not seem to be accurate based on anecdotes from the various forums I follow, including this one. I wonder if it has to do with severity of the symptoms?

An aside: He said the price of Forteo is so high because of Alex Azar who was Trump's secretary of health and human services. He was a top manager at Eli Lilly and was directly responsible for the steep increases of insulin and other drugs including Forteo - this lined the their pockets. They created the generic teriparatide, but only decreased the price by 20% so it's still unaffordable for many people who make more than the financial assistance cut off, but do not make enough to pay up to the $8000 cap per year.

He said with my T score, if I was 70, he'd put me on meds, but because I am younger than 70 and have a personal trainer, work on balance, am doing my exercises, have changed my eating, he doesn't think there is any rush. He told me to keep doing what I'm doing. I had the blood work done on Friday and will meet with him after that. Whatever those numbers are could change everything.

Evenity has the best outcome for hip fractures (that's me). I have fluctuating blood pressure (since I fell and hit my head) and was diagnosed with blood clots at a college infirmary in my early 20s (not sure it was accurate) so I'm not inclined to choose that, but we'll see.

I liked him a lot better than the others I've seen and I appreciated that he took the time to get to know me a bit. He asked me many questions about my interests, my lifestyle, etc. It was kind of a throw back to the olden days. I am working on a list of follow up questions for my next visit.

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@babs10 that was a really useful post detailing your doctors visit. Great example of the care those of us with bone loss need to get. Each of us can contrast that with our dr visits.
I've listened to a couple of interviews with Dr Paul Miller but your report really adds to the picture of what he's doing with patients. Thank you

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@mayblin

No intention to offend anyone here: Dr. K McCormick is not a researcher in basic or clinical science, nor a medical doctor. He is a doctor of chiropractic medicine.

According to his popular book “great bones”, which I have a copy, he personally had used FORTEO then fosamax for his own osteoporosis. He did extensive readings and reviews on this topic including etiology, diagnosis, treatments and management. He provided some case studies of his “clients” in his book. Undoubtedly it’s a valuable resource for those of us facing a new diagnosis of osteoporosis and trying to comb through the mirage of information out there.

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mayblin,
I saw from a previous comment that you had recommended or other had specific individuals that you or other had found knowledgeable. Would you please share that with me please?

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