Researching a 2nd Opinion Site

Posted by doglover71 @doglover71, Feb 7 8:31pm

Does anyone have any comments about the programs below? Thanks

* Cleveland Clinic: Osteoporosis and Metabolic Bone Disease Center

* Washington University in St. Louis: Division of Bone & Mineral Diseases

* Mayo Clinic: Rochester, MN Campus

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

Thanks for posting this - interested in any replies you get! I also think I should get a 2nd opinion from a top osteo MD after disappointing Tymlos results. I'm a bit disappointed by my current doc who just rattles off all the existing options - prolia, bisphosphonates, etc. and leaves me hanging: no insight as to which might be best strategy. Dr. Google could do better than that.

I know many here recommend Keith McCormick, but I'd really prefer a degreed MD endocrinologist first.

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I am with you concerning good consult.

I have come to conclusion that medicine is a hit-or-miss world. Physicians have experience but with each patient its just trial and error as in real life.

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@katwhisperer

Thanks for posting this - interested in any replies you get! I also think I should get a 2nd opinion from a top osteo MD after disappointing Tymlos results. I'm a bit disappointed by my current doc who just rattles off all the existing options - prolia, bisphosphonates, etc. and leaves me hanging: no insight as to which might be best strategy. Dr. Google could do better than that.

I know many here recommend Keith McCormick, but I'd really prefer a degreed MD endocrinologist first.

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@katwhisperer , please tell me why you were disappointed with Tymlos results.
How long did you take it, how much, etc. Thank you.

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Researching opinions -something we should do, but boy! So many differing opinions. Look at this one that came to me today from a healthy minded “guru” I enjoy reading:

https://open.substack.com/pub/robynopenshaw/p/why-i-dont-get-bone-scans
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@rajmayo22

I am with you concerning good consult.

I have come to conclusion that medicine is a hit-or-miss world. Physicians have experience but with each patient its just trial and error as in real life.

Jump to this post

I felt the same. It's hit and run for each individual with a particular drug. Unforturenately a few of us are outliers when our results are compared to the average that were achieved during clinical studies. Like @katwhisperer, I had a lackluster 1year results after forteo. Now looking at my frax score, it seems I have a relatively low 10yr fracture probability after all, before treatment as well as at 1yr after forteo. So I'm looking into a second or third opinion for long term management also. But we do need a good anchor doctor who listens well and who is a bit flexible depending on individual's needs.

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@joyboudreau

Researching opinions -something we should do, but boy! So many differing opinions. Look at this one that came to me today from a healthy minded “guru” I enjoy reading:

https://open.substack.com/pub/robynopenshaw/p/why-i-dont-get-bone-scans

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I thought she raised some interesting questions but then she lost all credibility with me when she started promoting a specific brand of vitamins.

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@katrina124

@katwhisperer , please tell me why you were disappointed with Tymlos results.
How long did you take it, how much, etc. Thank you.

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I took the full daily dose and saw 5% spine improvement after 1 year. Zero hip or femoral neck gains. Still in osteoporosis.

Seems like many here report better results- i.e. double digit %?

My doc insists I need 2 years, but I'll likely stop at 18 months and switch to a maintenance drug, as I keep reading that 2nd year usually doesn't work as well and this drug is costing me a fortune.

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@katwhisperer

Thanks for posting this - interested in any replies you get! I also think I should get a 2nd opinion from a top osteo MD after disappointing Tymlos results. I'm a bit disappointed by my current doc who just rattles off all the existing options - prolia, bisphosphonates, etc. and leaves me hanging: no insight as to which might be best strategy. Dr. Google could do better than that.

I know many here recommend Keith McCormick, but I'd really prefer a degreed MD endocrinologist first.

Jump to this post

I'm reading McCormick's book Great Bones. It starts with a great intro to osteoporosis for the lay person. But I'm also interested in a solid MD opinion as I have experienced 2 atypical femur fractions. I feel like my bone care plan may include medication and dietary/holistic components.

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@joyboudreau

Researching opinions -something we should do, but boy! So many differing opinions. Look at this one that came to me today from a healthy minded “guru” I enjoy reading:

https://open.substack.com/pub/robynopenshaw/p/why-i-dont-get-bone-scans

Jump to this post

Very interesting! I've spoken another person who has much of the same opinions. You're right. So many different opinions that can be overwhelming!

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@normahorn

I thought she raised some interesting questions but then she lost all credibility with me when she started promoting a specific brand of vitamins.

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There is so much junk in the supplement world, that I actually search for such recommendations from people I have grown to trust.

She doesn't have me 100% on solutions, but I do use her to keep me up on health issues. Offering another opinion in my homework. I have no problem with these spokes people making money to compensate their hours of giving - and after a few years of following, she doesn't have a greedy bone in her.

I work closely with a very honest R&D department - 39 years old - and we have found some amazing stuff on the store shelf. Let me give you one example of many: bottle was labeled 100% standardized Grape Seed Extract in a health food store - there was not one grape molecule in it. It was cherries.

A former White House nutritionist told our marketing team one year that 60% of the labels on the store shelf were dishonestly labeled. Ugh.

But, in this article - that same R&D department created our version of Calcium Complex and promotes the need for D and K2 to direct the benefits to the bones? They are prestigious scientists with no need to be greedy, only honest (they get paid well not based on the company sales)...so I find it hard to swallow her view point on this all being useless for our bones.

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