i have osteoporosis

hey there,

i'm 38 (had the DS in 2011) and just found out i have osteoporosis (i'm right on the borderline of being osteoporosis). I'm so upset, scared and confused:(

I'm already on creon, due to past complications. I'm 95kg (put on 10kg once I started Creon).

I'm going to start doing weight bearing pilates and exercises, and doctors will give me Zoledronate IV treatment every year, starting from March 2020. Should I do yoga, or do I have to lift weights at the gym (which I really hate)? What about walking?

1) Could someone pls advise me what kind of Vit K (1&2) I should be taking?

This is what I currently take daily:

2,200 ug K (1000 µg K1, 1000 ?g K2 (menaquinone-4), and 200 µg K2 (as menaquinone-7)

2) How do I check my vit K levels on my blood results?

My recent blood results
Parathyroid Hormone 36.85 (range 15-65)
Total Protein 76 (60-80)
Albumin 43 (35-50)
Calcium 2.31 (2.20-2.60)
Adjusted Calcium 2.33 (2.20-2.60)
B12 852 (1 197-771) i've lowered the dose (1,000 ug) from once a month to every other month
D 100 (75-200)

3) Can the osteoporosis be reversed? Was it due to the DS? my mom and grandmother also had some for of bone osteoporosis / osteopenia

K2 is the version of K that helps with bones.

I also have osteoporosis. I don't know if it was the RNY or the fact it runs rampant in my family - could be either. I didn't have a baseline before I had RNY, so I'll never know.

there are several drugs that will keep you from losing more bone and some that will even rebuild bone. I'm on zoledronic acid (Reclast) as well, but in my case, it hasn't helped. I'm scheduled to see an endocrinologist at the end of the October who specializes in osteoporosis. I'm assuming she'll want to try a different drug.

as far as exercise, they recommend weight-bearing exercise - so weight lifting is good - but so is anything where there's weight coming down on your bones, like walking or dancing. Yoga is great for flexibility and balance, but not sure about osteoporosis. Maybe some of the "power" varieties (??). I never really thought of it as particularly good for osteoporosis, though..

Hey catwoman7,

Thanks so much for your reply. I heard medication for osteoporosis can be unpredictable. Good luck with your future treatments.

I also thought that yoga was not going to help much. My pilates trainer is going to teach me weight bearing exercises using my body weight for now, cause to be honest, i just cannot move so much. I've lost so much strength after having 3 plastic surgeries to remove excess skin. And recovery took me a few years cause in the meantime I developed wheat intolerance, and my dairy intolerance got worse.

If you'd like to, please do let me know what treatment your endocrinologist recommends?

Thanks.

P.S. high B12 is rarely a problem. Mine has been over 2000 at times. It's been hovering around 800-1000 lately, and that's fine for me. Some people don't feel well when it gets much lower than that, even if they're still within the "normal" range.

Please get a second opinion and do your research before you select a treatment. Once you go down a particular path or class of medicine a lot of the effects cannot be reversed.

I got my duodenal switch at 47. I went from a normal dexy scan to full blown osteoporosis in one year with all normal labs. I found out I had osteo process from a double fracture in my wrist from a very I found out I had osteo process from a double fracture in my wrist from a very slight fall.

I am so fortunate that I found an excellent endocrinologist who knew that many of the classes of osteoporosis meds would not grow new bone just harden the bones that I had which could then further cause higher risks of breaks.

At diagnosis I had severe osteo in my spine and my femur in fact I had lost a 1/2 an inch due to micro fractures in my spine.

I started on Fortero in May of 2018. I have provided a link that compares the different meds. With a year and a 1/2 on the meds I have gone back to a normal dexi in my spine and all expectation is that by will have a normal dexi on my femur next year. In fact I actually gained that half inch back meaning that the micro fractures healed and I grew new bone and gained back half inch.

Fotero is the only med that actually increases the number of bone-forming osteoblasts.

https://www.health.harvard.edu/womens-health/osteoporosis-drugs-which-one-is-right-for-you

After 2 years on fortero the plan is for me to go on a med that your doctors recommanding like re clast that will harden and solidify the new bone growth I achieved. You need to try to have new bone growth and then solidify that improvement just my opinion make sure you're seeing an endrocrinologist who specializes in osteoporosis.

Blessing

Julie

Hey Julie,

Thank you very much for your reply.

Would you mind explaining why so many DSers see an endocrinologist? Is this a must? Are they familiar with the DS?

I've made an appointment to see a specialist Rheumatologist, who also deals with osteoporosis. Is this ok, or does it have to be an endocrinologist?

Thanks for the link - it'll be very handy. And i'll mention the Fotero with my Rheumatologist.

Just another question please? Should DS patients be treated for osteoporosis differently? Should we have a higher dosage because we malabsorp nutrition?

Thanks.

I doubt all DSers need to see an endocrinologist. I only needed one once I was diagnosed dxd with osteoporosis. Not all are capable of dealing with DS. Many want to lump us in with bypass patients. Be sure your doc has that understanding.

Relative to your question about treatment. Fortero is a daily injection so no issues with absorption. I have had great success with Fortero. It is the only need in its class that actually grows new bone. I grew a half inch on it in one year at 54 years old. That's amazing.

Best wishes on your journey.

Blessings

Julie

I just wanted to add a couple of things I have seen in posts. Your labs look good with a good PTH so you may be fighting genetics as opposed to a DS related vitamin deficiency issue.

How much calcium and magnesium are you taking and what kinds. You may want to add something like Jarrow or a different kind of calcium. I've seen people post that they up their vitamins and the mix with some good results but it seems to be a long process.

It's good you have the chance to react before things got really bad.

There really isn't a way that I am aware of to measure the K2 and its effect from blood work. Most people seem to work on their mix of calcium, mag, D, and K2 to make sure their PTH stays low.

Pete

Hey PeteA,

Thanks for your reply.

Below are the vits I take. I've read that taking magnesium together with calcium can help?

Some years back I tried taking a different kind of calcium (can't remember which one), I ended up taking the wrong kind was not absorbing them.

I have an appointment at the end of this month, with an endocrinologist (who has seen other DS'ers), hope he'll give me specific vitamin advise, and which treatment to go for.

My vit schedule:

Breakfast
3 x 50 mg ZINC CHELATED

1st 30g protein shake
2 x 25,000 CREON
1 x B COMPLEX '50'
1 x 210 mg MAGNESIUM CITRATE
1 x 400 E iu, dry
2 x 25,000 iu A PALMITATE
3 x 250 mg CALCIUM CITRATE

2nd 30g protein shake
2 x 25,000 CREON
1 x 210 mg MAGNESIUM CITRATE
2 x 25,000 iu A PALMITATE
1 x MULTIVITAMIN
1 x 50,000 iu D3 CHOLECALCIFEROL
3 x 250 mg CALCIUM CITRATE

3rd 30g protein shake
2 x 25,000 CREON
2 x 25,000 iu A PALMITATE
1 x 50,000 iu D3 CHOLECALCIFEROL
3 x 250 mg CALCIUM CITRATE
1 x 2,200 ug K (1000 µg K1, 1000 ?g K2 (menaquinone-4), and 200 µg K2 (as menaquinone-7)
1 x 400 ug FOLIC ACID, every week
1 x 1,000 ug B12, changed it to every month

Middle of the night
1 x 2500 ug COPPER CHELATED
3 x 25 mg IRON CARBONYL
2 x 1,000 C mg

Full vitamin schedule you have there.

You are probably thinking about calcium carbonate which we don't absorb very well and caused problems for many of the early DS'rs.

A couple of questions come to mind reading through your list.

You take a lot of vitamin A, do you have trouble with your levels (for example I take 1 biotech 25k a day)?

Did you really need the B50 complex or just a precaution (some B's can get too high like B6 I think).

What is your D level? Many people working on Osteo try and have a higher level to interact with the calcium, magnesium, and K2. I was at 2 per day and cut back to 1 every day and 2 every other day since I suddenly got a little higher than I cared for (over 100).

You might think about adding more additional K2, I see you take a combined k and adding some extra wouldn't hurt (maybe in the middle of the night since it doesn't cause a problem for anything.

You might also add a 3rd magnesium ( a lot of people have some ratio of magnesium to calcium they take but I don't do that).

All just suggestions that may or may not help but won't hurt.

Pete