why does everything have to be so hard???

Posted by bmblsad @bmblsad, 4 days ago

Warning, minor rant here. I was diagnosed recently with osteoporosis and have been gathering information on next steps. I want to explore HRT (among other things) but my NP didn't sound knowledgeable/confident about using it at my age (I'm 65 and never did HRT before). So, through posts here I zeroed in on finding a functional medicine person in my network. The first 4 I tried aren't seeing new patients. The 5th is, but soonest she can see me is december 2027 (not a typo). Next, I thought okay how about endocrinology. First, almost none of those coming up in my insurance's care directory are accepting new clients. One that is has terrible reviews. The other said I need to get a referral from my PCP. So, now I'm back to dealing with my NP again. Why is getting care so f'ing hard? It's been almost 3 weeks since my diagnosis and I'm still at square 1 for finding care. Paying Dr. Doug (or some other concierge doc) $14k is starting to sound like a good idea, that's how desperate I'm starting to feel (And no, I can't afford that...). Seriously you guys - how did you find people to take care of you?

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

Profile picture for oknowwhatpixie @oknowwhatpixie

@bmblsad
The following videos helped me greatly when first getting started. I knew when i finally got in to see a Dr what questions to ask and to make sure tests (blood & urine) were run. Because if they don't understand the underlying reason for your osteoporosis you could start a treatment and not get the results exected.

Causes and treatments



Secondary causes of osteoporosis

When i finally decided to go the HRT route the functional medicine Dr ran a Dutch Test and Bloodwork to understand my hormone levels before starting. I also chose topical creams for my hormone therapy, as this has the least amount of risk in my opinion.

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@oknowwhatpixie
Michael Lavacot's videos are the best for simply explaining what your options are. Watch them. Watch them twice (once on the treadmill, once taking notes).

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I agree! I am going crazy trying to figure out what to do. The side effects on all the meds they want me to take are horrible! There has to be a better way.

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Profile picture for oknowwhatpixie @oknowwhatpixie

@bmblsad
The following videos helped me greatly when first getting started. I knew when i finally got in to see a Dr what questions to ask and to make sure tests (blood & urine) were run. Because if they don't understand the underlying reason for your osteoporosis you could start a treatment and not get the results exected.

Causes and treatments



Secondary causes of osteoporosis

When i finally decided to go the HRT route the functional medicine Dr ran a Dutch Test and Bloodwork to understand my hormone levels before starting. I also chose topical creams for my hormone therapy, as this has the least amount of risk in my opinion.

Jump to this post

REPLY
Profile picture for bmblsad @bmblsad

@roseincalifornia
Thanks for the encouragement! I do have to laugh about insurance. I just became eligible for Medicare this year, and ended up picking a medicare advantage plan based on my belief that I was healthy. So, I didn't think too much about drug formularies, specialist copays, deductibles, or their in network. The interaction I've had this far with them in terms of getting clarity on coverage hasn't left me with many warm fuzzies. The good news is I can ride them out for the next 6 months and find a better/different plan in January. Wish I'd gone medigap supplement instead of advantage. Oh well!

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@bmblsad better to off to get off the advantage plan and get supplemental drug if it’s in your budget. WellCare is zero premium cost for me. That’s a drug plan and idk y it costs me nothing!

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Profile picture for candaceb @candaceb

I agree! I am going crazy trying to figure out what to do. The side effects on all the meds they want me to take are horrible! There has to be a better way.

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@candaceb

As with any prescription, just reading about the possible side effects can be scary. It is more common here to read about the reports of those who develop side effects. It is less common to hear from those who have no noticeable side effects. My experiences have not been negative. No noticeable side effects with alendronate, forteo, evenity and Prolia. I am not trying to influence you one way or another. Each of us is an individual with a unique medical history. You are not alone trying to find the best path for you. Keep us posted . Your experiences will help us all

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I've been treated for various things over the past few years, and there is no question that osteoporosis is the most poorly-covered illness of anything I've experienced. Doctors who don't know what they're doing... recommending Fosamax all the time because that's what they learned about 20 years ago... no knowledge of bone markers... not knowing the standard protocols. And, just finding a doctor who knows *anything* about it is a nightmare. Think about it: there are people on this board who know far more about osteoporosis than many doctors.

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You found functional medicine doctors that are covered by your insurance? I saw a functional medicine doctor who was also a cardiologist that was willing to submit for the cardiology and I paid for the functional medicine side of things. I just tried to see if my insurance was covering it no but interestingly they have taken the find a provider page down…not sur what is up with that!

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Profile picture for njx58 @njx58

I've been treated for various things over the past few years, and there is no question that osteoporosis is the most poorly-covered illness of anything I've experienced. Doctors who don't know what they're doing... recommending Fosamax all the time because that's what they learned about 20 years ago... no knowledge of bone markers... not knowing the standard protocols. And, just finding a doctor who knows *anything* about it is a nightmare. Think about it: there are people on this board who know far more about osteoporosis than many doctors.

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@njx58 No kidding! It has been eye opening how poorly osteoporosis is understood and treated. Ideas all over the place. Supplements and how much, exercise and what, osteo PT (none I can find with that specialty where I live), DEXA accurate or not (gold standard??), REMS, TBS, bone markers useful or not (I had to ask for CTX after one year of fosamax, now my doc runs them regularly, why not earlier in the game?). Add to the mess is the fact that there is not an osteoporosis-ist (like cardiologist, gynecologist, etc.) speciality - yet. Drugs are available (a good thing!) but which? Which work and why? I read on this site about how many people get very little or no gains on so called powerful meds - what's the point of the meds then? To not get worse? Maybe that's the best we can hope for. Sheeeesh!

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Profile picture for jozer @jozer

@njx58 No kidding! It has been eye opening how poorly osteoporosis is understood and treated. Ideas all over the place. Supplements and how much, exercise and what, osteo PT (none I can find with that specialty where I live), DEXA accurate or not (gold standard??), REMS, TBS, bone markers useful or not (I had to ask for CTX after one year of fosamax, now my doc runs them regularly, why not earlier in the game?). Add to the mess is the fact that there is not an osteoporosis-ist (like cardiologist, gynecologist, etc.) speciality - yet. Drugs are available (a good thing!) but which? Which work and why? I read on this site about how many people get very little or no gains on so called powerful meds - what's the point of the meds then? To not get worse? Maybe that's the best we can hope for. Sheeeesh!

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@jozer

I totally agree with you both. Our medical system is struggling here in the u.s
Not to mention the historic lack of funding for women's healthcare research.
Check out. .... . patientrevolution.org

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Profile picture for gravity3 @gravity3

@jozer

I totally agree with you both. Our medical system is struggling here in the u.s
Not to mention the historic lack of funding for women's healthcare research.
Check out. .... . patientrevolution.org

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@gravity3 Try finding research on *male* osteoporosis treatment. There isn't much. My orthopedist didn't even mention OP to me, even though I presented as a 63-year-old male with a compression fracture not caused by trauma or fall. Not a word!

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