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Update after seeing Stanford Bone Clinic endocrinologist

Posted by oopsiedaisy @oopsiedaisy, May 21 1:07pm

Someone asked me for an update after I had seen an endocrinologist affiliated with the Stanford Bone Clinic.

I had my appointment in late April and it was quite interesting. The doctor told me that she suspected the Fosamax had stopped working for me and that was why my bone density decreased and I fractured. That wasn't something I'd considered at all. I was on Fosamax for over five years.

She ordered a bunch of tests (many are mentioned in the Great Bones book by Dr. McCormack) including CTX, cortisol, and 24 hour urine.

Turns out my cortisol level is low (big shock as I thought it would be high). I am getting retested on Friday.

CTX was in the mid-300s.

I also have hypercalciuria. I have really upped my protein intake since my fracture and have to wonder if this may be a factor.

She quickly got approval for me to start Evenity and I have my first shots on Friday.

I was very pleasantly surprised about how thorough and knowledgeable this doctor is when compared to the rheumatologist I saw last year and am very glad I pushed for a referral. I feel like I am now getting better care.

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

mayblin | @mayblin | May 22 11:13am

It's nice to know your bone specialist's decision. Hope evenity will work great for you!

I have a few questions:

What's the reason for repeating the cortisol lab? When my endo ran the diagnostic panel, she did a dexamethasone suppression test.

Any remedies that your endo mentioned to have your hypercalciuria corrected? Any adjustments to your intake of calcium (especially supplements), protein, salt or sugar needed? I have a friend who has hypercalciuria (not on any bone meds yet) also, it will be nice to know how other endos manage this condition. Thank you @oopsiedaisy

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2 replies
oopsiedaisy | @oopsiedaisy | May 22 12:18pm
In reply to @mayblin "It's nice to know your bone specialist's decision. Hope evenity will work great for you! I..." + (show)
@mayblin

It's nice to know your bone specialist's decision. Hope evenity will work great for you!

I have a few questions:

What's the reason for repeating the cortisol lab? When my endo ran the diagnostic panel, she did a dexamethasone suppression test.

Any remedies that your endo mentioned to have your hypercalciuria corrected? Any adjustments to your intake of calcium (especially supplements), protein, salt or sugar needed? I have a friend who has hypercalciuria (not on any bone meds yet) also, it will be nice to know how other endos manage this condition. Thank you @oopsiedaisy

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I did not speak with her. She left a message stating that she'd like to do it again but did not say why. My guess is to make sure the first wasn't an anomaly,

I also have not had a conversation with her about the hypercalciuria.

My next appt with her directly is in three months. I see her assistant for the Evenity shots.

If I have any conversations with her about either, I'll post an update.

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carolcav | @carolcav | May 30 1:15pm

How long did it take for Calcium to come down,

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1 reply
sebutler | @sebutler | May 31 8:40am

Hi, oopsydaisy -- Did the doc consider whether you might have hyperparathyroidism, which can cause hypercalciuria? I ask only because my huperparthyroidism turned out to be the reason my bones were not absorbing all the calcium I was ingesting (and unfortunately the docs never took action after tests showed the high blood and calcium levels in my urine).

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1 reply
oopsiedaisy | @oopsiedaisy | May 31 7:45pm
In reply to @carolcav "How long did it take for Calcium to come down," + (show)
@carolcav

How long did it take for Calcium to come down,

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I have not had a repeat test. My doctor told me to reduce my calcium intake to 1000 mg per day, I try to get most of that from food but was supplementing to 1200 mg. Most days I take no calcium supplement or only one pill.

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oopsiedaisy | @oopsiedaisy | May 31 7:47pm
In reply to @sebutler "Hi, oopsydaisy -- Did the doc consider whether you might have hyperparathyroidism, which can cause hypercalciuria?..." + (show)
@sebutler

Hi, oopsydaisy -- Did the doc consider whether you might have hyperparathyroidism, which can cause hypercalciuria? I ask only because my huperparthyroidism turned out to be the reason my bones were not absorbing all the calcium I was ingesting (and unfortunately the docs never took action after tests showed the high blood and calcium levels in my urine).

Jump to this post

I have had my PTH levels tested a couple of times and they have always been normal.

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oopsiedaisy | @oopsiedaisy | May 31 7:51pm
In reply to @mayblin "It's nice to know your bone specialist's decision. Hope evenity will work great for you! I..." + (show)
@mayblin

It's nice to know your bone specialist's decision. Hope evenity will work great for you!

I have a few questions:

What's the reason for repeating the cortisol lab? When my endo ran the diagnostic panel, she did a dexamethasone suppression test.

Any remedies that your endo mentioned to have your hypercalciuria corrected? Any adjustments to your intake of calcium (especially supplements), protein, salt or sugar needed? I have a friend who has hypercalciuria (not on any bone meds yet) also, it will be nice to know how other endos manage this condition. Thank you @oopsiedaisy

Jump to this post

Update on the hypercalciuria. My doctor advised me to cut my calcium intake to 1000 mg. I was getting 1200 mg per day in food and supplements.

My repeat cortisol test was in normal range.

I started Evenity on May 23. First dose went well and I haven’t had any side effects.

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1 reply
sebutler | @sebutler | May 31 9:25pm

Ah! Good to hear. Actually, my PTH levels were in the normal range, but over several years of testing showed rising levels (low normal to high normal). Weird, but that, two episodes of kidney stones, and my DEXA scan, started the trip down the road to investigating the possibility of hyperparathyroidism.

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missey | @missey | Jun 1 10:03am

I have always questioned my parathyroid to due to the amount of calcium loss through my urine! My bones are so problematic right now. My endocrinologist has recommended medication‘s that are contraindicated with my heart condition! I had to correct her which is unbelievable! She still insisted I take Evenity , I guess her perspective is, it’s OK to die of a heart attack in two days if I have a reaction to it versus having bad bones! Always do your research.

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mayblin | @mayblin | Jun 1 11:49am
In reply to @oopsiedaisy "Update on the hypercalciuria. My doctor advised me to cut my calcium intake to 1000 mg...." + (show)
@oopsiedaisy

Update on the hypercalciuria. My doctor advised me to cut my calcium intake to 1000 mg. I was getting 1200 mg per day in food and supplements.

My repeat cortisol test was in normal range.

I started Evenity on May 23. First dose went well and I haven’t had any side effects.

Jump to this post

Thanks for sharing @oopsiedaisy.

Are you taking HRT currently?

Wish you a great success with Evenity!

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