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New DX with a lot of Confusion and Stress

Posted by 2young4bones @2young4bones, Jan 7 5:21pm

Recently diagnosed w/"severe" OP at 61 following an overexertion lumbar fracture. I also fractured 2 lumbar vertebrae 4.5 years ago from an accident. I've seen endo and they are recommending Evenity followed by Reclast or Reclast only as a 2nd choice. Not thrilled w/Reclast - or any bisphosonate - because of the risks of kidney and jaw bone damage.

DXA scan scores: Spine L1, L3
BMD: 0.832 g/cm2, T-score: -2.8, Z-score: -1.4
Left Total Hip
BMD: 0.656 g/cm2, T-score: -2.8, Z-score: -1.7
Right Total Hip
BMD: 0.604 g/cm2, T-score: -3.2, Z-score: -2.1
Mean Bilateral Total Hip
BMD: 0.63 g/cm2, T-score: -3.0 , Z-score: -1.9
Left Femoral Neck
BMD: 0.603 g/cm2, T-score:-3.1, Z-score:-1.8
Right Femoral Neck
BMD: 0.576 g/cm2, T-score: -3.3, Z-score: -2.0

All bloodwork came back w/in normal range except my Vit D was high (74.5) but I do take a quality D3/K2 which is now reduced to 3x/wk.

Light chains also showed high free Lambda (35.9), Normal Kappa (18.4) and Normal Ratio (0.51)

24 hr Calcium in urine was high (387.9) so endo doesn't want to try Tymlos or Forte which was the orignal plan pending blood tests.

I did read that high Vit D can cause high calcium in urine. Should I ask for the test to be repeated now that my Vit D was adjusted?

They do not want me to take a Calcium supplement believing I have adequate dietary intake. I also take Mag at night.

I've been reading multiple posts here many with differing personal opinions or results. Endo understands I'm hesitant to take any meds but specifically ones that can ultimately do more harm than good. I asked his nurse practioner why there's no mention of nutrition or excercise in the treatment plan with literally no answer.

I'm in PT from the recent fracture at the end of October and subsequent vertebroplasty on Dec 1st where, after core strengthening, we will be focusing on lifting. I keep prodding PT for an Osteo specific treatment plan, but they state they don't normally see patients to develop a program like that. Odd, because my Drs are all associated with one of the largest teaching hospitals in the Midwest!

I'm scared - scared of taking the meds and scared of not taking them. Endo said my risk related to a fall and fracture are greater than the risks of taking meds. When I asked the "what if" of jaw necrosis, he replied he would find me a great oral surgeon. Has anyone done just Evenity for 12 months and not followed up with another biphosonate med? What are the risks? Asking because the one other test I researched -C-Telopeptide, Beta-Cross-Linked, Serum was normal for my age - 525 pg/ml and since this is a biomarker for bone resorption do I need a drug to slow that down?

I have a desk job which doesn't help to have gravity make my bones stronger. I recently ordered a sit to stand desk and have been standing for the majority of the day. Looking into programs offered at our local Y and open to suggestions!

Too new to this to wrap my head around it all. Looking to the many experts on this site who can calm my nerves and provide guidance.

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

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codythedog | @codythedog | Jan 14 1:25pm
In reply to @pd999 "@gravity3 It is maddening when they (endocrinologists and other physicians) do not follow the findings of..." + (show)
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@gravity3 It is maddening when they (endocrinologists and other physicians) do not follow the findings of medical societies they are part of and which provide their certifications to practice medicine. It is also maddening that I have to make an appointment and pay for an office visit to find out their "stance" on HRT/BHRT. I had an experience with an OB-GYN who would not prescribe HRT unless I got a D&C; he initially was going to require me to have endometrial ablation before he would prescribe the HRT. I challenged him on the endometrial ablation procedure as I had NONE of the symptoms indicating that procedure and my insurance would not pay for it. I did have to get a D&C and anesthesia--totally unecessarily, just to get the HRT prescription. Not surprising, this doctor owns the clinic locally that does endometrial ablation. You know, when you have the hammer, everything looks like a nail. He also did not give me the correct HRT medications for someone with a uterus; he prescribed the estrogen patch and micronised progesterone to be taken 2 days per month, i.e. he was setting me up to need an endometrial ablation.

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@pd999

I am so sorry to hear this, I feel like I am up against a wall with trying to get BHRT.

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gravity3 | @gravity3 | Jan 14 2:20pm
In reply to @codythedog "@pd999 I am so sorry to hear this, I feel like I am up against a..." + (show)
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@pd999

I am so sorry to hear this, I feel like I am up against a wall with trying to get BHRT.

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@codythedog

Try a functional medicine provider.

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pd999 | @pd999 | Jan 14 5:21pm
In reply to @dvargo "@pd999 You should be taking Progesterone every night. The medical community is set up for profit." + (show)
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@pd999 You should be taking Progesterone every night. The medical community is set up for profit.

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@dvargo Right--I learned that online and found another doctor who would prescribe HRT correctly. But what if I didn't know that or know how to get that information?

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dvargo | @dvargo | Jan 15 5:19am

We have to be advocates for ourselves. The medical community will not do that. I have coverage for functional medicine but it is a $6.000 deductible.

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blueberre | @blueberre | Jan 15 6:28am

Mybe someone mentioned this already, but did you have your parathyroid glands checked. High calcium in urine can indicate leaky parathyroid gland which will cause osteoporosis. Removing them is the fix for that. My endo did a 24 hour urine sample and my calcium level was ok.

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mcchesney | @kathleen1314 | Jan 16 7:59am

Your doctor will be checking your parathyroid glands based on the calcium test. Ask for the parathyroid testing, if he/she does not do this. Parathyroid problems are relatively easy to remedy and will make a huge difference in osteoporosis. BAsically , you can't absorb calcium with a parathyroid problem, so your bones can't grow and you lose bone and fractures/osteoporosis result.
Quote from a research article:
"Parathyroid problems (hyperparathyroidism) cause excess parathyroid hormone (PTH), which pulls calcium from bones into the blood, leading to weak, brittle bones, osteoporosis, and fractures, rather than poor absorption; it actually increases calcium in blood and decreases it in bones, disrupting the balance needed for strength. While you can't absorb well due to vitamin D issues, the main issue is bone loss, not just lack of growth."
The reason you are diagnosed with "severe" osteoporosis is because of the fractures; the numbers on your dexa are not horrible. I would like to see a TBS read, bone quality, from those DEXA numbers though.

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gravity3 | @gravity3 | Jan 16 1:50pm
In reply to @jozer "I think we are all scared of taking meds, also of not taking meds. I too..." + (show)
Profile picture for jozer @jozer

I think we are all scared of taking meds, also of not taking meds. I too have “severe” OP numbers similar to yours. I did not receive any information about diet or exercise other than “resistance exercise” (been doing aerobics with weights for decades) and “eat calcium rich food, here is a list”. No PT until I asked since I need to have a referral to schedule. No specific osteoporosis physical therapist that I could find, but I did learn a lot from the one I saw. My CTX which I requested after reading about bone markers was at 52. Have no idea if that means anything; also had NTX which according to the lab paperwork was in normal range. Fosamax 8 months then reclast last July. I also am checking out the Y for weight bearing machines as the PT said that would possibly help. The doc scared me with the lecture about holding handrails, no shoveling, no bending or twisting, no golfing etc. made me think I should wrap up in bubble wrap and stay home! PT rolled her eyes a bit and said, after watching my so-called golf swing that I’d be fine to golf. She said strengthening core and keeping back flat; don’t bend over curved like a shrimp. OP was silent for me, no back issues like you. I did break my wrist in a car wreck couple years ago, EMT and ER doc said happens all the time (airbag injury) and the surgeon who fixed it said my bones looked good. He isn’t a DEXA machine though! I am 68, asked about HRT or BHRT and that was a hard no from gyne, mom had breast cancer.

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@jozer

Try melioguide.com from a pt who specializes in helping those with Osteoporosis.

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jozer | @jozer | Jan 16 7:23pm
In reply to @gravity3 "@jozer Try melioguide.com from a pt who specializes in helping those with Osteoporosis." + (show)
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@jozer

Try melioguide.com from a pt who specializes in helping those with Osteoporosis.

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@gravity3 thanks! and I have checked her out and seems really helpful actually was going to research her a bit more

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