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nightengalesknd in osteo_health

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I don't see a lot of posts here besides articles so I hope this is OK. Just starting out looking for information.

The short version is that I was diagnosed last April with osteopenia at the age of 30. My doctors at the time sort of shrugged it off because we figured it was related to my other medical conditions, but my current endocrinologist is looking for a cause and would like me on treatment. I've been on Vitamin D and calcium since April but have been reluctant to go on fosamax/actinel for a couple of reasons.

Other health issues include hypothyroid (I've been on replacement hormone since 1998 and stable until 2006 when my levels went up and then down. I'm stable now on a slightly higher dose of replacement hormone), Type 1 diabetes and cerebral palsy. I walk so I don't have any issues of bone fragility due to immobility or lack of weight bearing or similar. My mother has osteopenia and has been on actinel. She was much older than I am when she was diagnosed, though.

There's a question of if I have PCOS and if so, if it could be explaining the bone density problems. I have some symptoms but not others, and if it doesn't affect my bones I frankly don't care if I have it or not because the symptoms don't otherwise affect my life. I found some articles that suggested PCOS might actually be GOOD for bones.

My endo has ordered a gazillion tests. My alkaline phosphatase is low. We doublechecked. It's still low. This has something to do with the bone growth cells not being active enough. It still doesn't explain WHY they aren't active enough, however. Most of what I've read about low alkaline phosphatse doesn't seem to apply to me. It can happen with hypothyroid but mine has been well controlled. We're checking my parathyroid hormone level (it was normal in April) and phosphorus level and going from there.

I broke my toe last month by dropping a jar onto it from the top of my refridgerator. Thankfully I got the ER doctor to say anyone could break a toe under those circumstances because otherwise my endocrinologist was threatening to hook me up to a fosamax IV right then and there!













Comments

Welcome! I'm so glad that you've shared your story. I'm actually in the same boat. I was diagnosed with osteopenia at 26 (I'm 29 now). My first experience with this came from one of those ankle scans done at a local health fair, but they assured me that it wasn't terribly accurate but I should have it checked out to be on the safe side.

Well, I did, and the numbers were distressingly low. Bloodwork came out pretty normal, just a little low on potassium.

I've been on Actonel for a few years now with no problems, although I don't yet know if it's helping my bones. My PCP finally turned me to an endo, I and I feel like I'm finally getting some answers after a ton of bloodwork. My endo has concluded that I've got Hashimoto's as well as celiac disease, which means not only do I have a low thyroid level, I'm not absorbing all of the nutrients I should be through my intestine. Until recently, I was not aware that there was more to celiac disease than a wheat/gluten allergy (I have neither). While this isn't great, it's more information than I had three years ago. I don't have any health problems outside of this (to my knowledge). None of this runs in my family.

Currently, I take 100,000 IU of vitamin D each week. My endo has remarked that Actonel is the wrong kind of medication for someone my age, and wants to put me on Forteo, which is the only medication on the market shown to build bone in the spine (8-10% in the first year). Unfortunately it's a daily injection, it's expensive, and insurance does not cover it.

My doctor also requires me to take Citrical Plus twice a day. This whole situation still puzzles me because I've always been a big dairy consumer and I get lots of dark leafy green and colorful veggies in my diet.

Three days a week I hit the gym for weightbearing exercise. I do other activities on my "off" days like walking around the house with weights on my ankles or carrying heavy stuff up and down the stairs. I avoid elevators when possible, and I work hard to make sure that my diet is well-stocked with the appropriate nutrients. I see my chiropractor weekly to keep my spine aligned. Then I hope for the best.

It's unfortunate that most of the information out there is targeted at women twice our age. I have found a few books though with good information:

The Bone-Building Solution by Sam Graci, Leticia Rao, and Carolyn DeMarco

Strong Women, Strong Bones, Updated by Miriam E. Nelson and Sarah Wernick

Osteoporosis for Dummies (no, really.)

Hope to hear more from you. We could probably learn a lot from each other!
So far my reading has been limited to google and a (usually pretty good) medical database. I suppose it's time to get my head out of the sand and start researching this one. My biggest concern about Fosamax/Actinel is the having to take it on an empty stomach. I'm seriously underweight and have a lot of restrictions from the diabetes already, so I'm not really willing to put off breakfast once a week. My endo's response to this is to offer it to me as an IV infusion for 3 hours every 3 months. . . I'm still deciding.

That's interesting to hear you had undiscovered celiac as well as Hashimoto's. Do they think celiac is a possible cause? I've been ruled out for celiac as well as autoimmune adrenal problems. I don't think there are too many autoimmune things left to test me for. . .

Unfortunately I can't do too many of the exercises like you describe. I can't climb more than a flight or two of stairs in a day or walk with weights. I'm pretty much limited to walking on the flat and occasional dancing for exercise.
hey, welcome!

I have no story in particular, but I do my best to keep myself informed of things.

depending on the severity of your CP, there might still be some things that you can do to work some weightbearing things.

a friend of mine has CP as well, and I know that he used resistance training to strengthen some of the weaker limbs.

if you are too unstable on your feet, there are several yoga and pilates motions that can be used with light dumbells. Would that be something that would work?


Thanks for the welcome!

My CP is really mild as far as my ability to walk and do daily life activities, but I have failed at any weight-resistance activities in the past. I've been in PT a bunch of times and I think it was 1 lb weights I couldn't lift both for wrist exercises and on my ankles for leg raises.

Just found out my PTH is low. Now I need to go figure out what that means. It was normal in April!

Re: Side comment about Fosamax

you might want to start with the elastic resistance bands then, they start with surprisingly low resistance, working up to pretty high.

a lot of the cardio machines also have resistance settings, it might be that starting from a dead stop is problematic, but while you are in motion it isn't as bad.

PTs usually have a good deal of suggestions for stuff like that, please don't get too frustrated, there are many people that have a very gradual slope of progress with these things, even without added complications.

Side comment about Fosamax

I work for an oral pathologist, and his comment talking to me one time was to not take any bisphosphonates (fosamax is one brand name) except as a last resort. Bisphosphonate use can lead to osteonecrosis of the jaw.

Re: Side comment about Fosamax

I suppose the question is which is worse - the theoretical risk of osteonecrosis of the jaw or the theoretical risk of a severe hip fracture following a fall.

I haven't got an answer to this one, possibly because I can't calculate the theoretical risk with any accuracy.

October 2008

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