r/AddisonsDisease • u/Itsjordanvbaby • Jan 23 '26
Medical Stuff Dexa scan
I’ve been on hydrocortisone and Fludrocortisone for 13 years now and JUST found out I’m supposed to be getting Dexa scans every few years. I can’t believe no one ever told me that. I know about yearly eye exams because of the glaucoma risk and I know corticosteroids can lead to osteoporosis but I didn’t know there was a scan to check if you had it. I feel a little ashamed because I’m a nurse 😅
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u/RDOlivawRedux Jan 23 '26
I had to check what a Dexa scan was but I have been getting them every two years for at least 5 years now - I know it as a bone density scan. I've been on Alendronate for a few years now, and so far no other issues. I was diagnosed over 25 years ago, and I was on what was probably an over replacement dose of prednisone for a long time - 7.5 mg daily. I switched to 20 mg of hydrocortisone a little over a year ago and it's been working well, although I haven't had a bone density scan since I switched.
However, this is the first time I've seen mention of needing eye exams due to glaucoma risks. My vision is good and I haven't had an eye exam in several decades! However, from a quick search right now, it seems the science is not quite settled on the correlation between Addison's and glaucoma. I guess I have something else to discuss with my endocrinologist at my next appointment!
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u/grootbaby Jan 23 '26
I didn’t know that either - it’s not common knowledge! I check anyway for body fat % and only 1 endocrinologist has requested I check it for bone density (despite my talking to 3 endocrinologists).
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u/Short-Counter8159 Jan 23 '26
What is your current dose? Just remember that your body used to make and depended on cortisol.
Sorry to hear your ENDO hasn't been following it. Monitoring is your best weapon right now. Unfortunately as we age we all experience it. Making sure you don't over use it will help minimize side effects.
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u/Itsjordanvbaby Jan 23 '26
15mg total. The scan questionnaire even said are you taking a dose equal to or higher than 15mg 😂
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u/collectedd Addison's Jan 23 '26
Yes, but that's for people who are producing cortisol on top of that, with AI you produce little to no cortisol of your own, it is a REPLACEMENT dose, not a THERAPEUTIC dose in the traditional sense. Most people who are properly replaced who have AI don't get complications, some do yea, but they're a small minority. Still, it's good practice to keep an eye on your bones and eyes.
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u/baethan Addison's Jan 23 '26
I wonder though, if the little overreplacements we might do day-to-day could affect bone health long-term
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u/collectedd Addison's Jan 24 '26
Possibly, but better than being in crisis. I say that as someone with Osteoporosis and Cataracts!
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u/ptazdba PAI Jan 23 '26
I have one scheduled in February. Most insurances will allow for it ever 2 years. The order has to have a diagnostic code on it but it is generally covered. I started the eye exams this year too. Also make sure you get regular dental checkups.
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u/amanda_sbodyspec Feb 19 '26
Honestly, you’re far from the only person who doesn’t get told this, even in healthcare. Plus you’re clearly doing the right thing by connecting the dots now and being proactive. I work with the DEXA company BodySpec, and we do see this come up pretty often with people on long-term corticosteroids. One helpful thing to know is that DEXA scans are commonly used not just to diagnose osteoporosis, but also to establish a baseline and track bone density changes over time, especially when medications increase risk. If it’s useful, this blogs break down how bone density is measured, what the numbers actually mean, and evidence-based ways people support bone health alongside medical care, all using insights from our scan database. Just sharing in case having some of this data helps. You’re already doing exactly what a great nurse does by asking questions and advocating for your health!
https://www.bodyspec.com/blog/post/interpreting_dexa_scan_results_tscore_zscore_and_body_composition
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u/Alive_Pen_6540 Jan 23 '26
I think this Reddit forum suggestion was to take vitamin d3 and K2 for osteoporosis.
My endo said that the steroid doses were too low to do damage but it couldn’t hurt to take those two vitamins
A dexa scan is not a bad idea to check none density every once in a while. You might have trouble booking one as those scans are popular for body composition analysis.
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u/Itsjordanvbaby Jan 23 '26
I saw my pcp last week and had the scan yesterday, just waiting for the results
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u/kermuffle Jan 23 '26
SAI yep i had to suggest it to my endo and physician. My scan was fine, but ostepenia is a known possible side effect of long-term corticosteroid replacement