Jump to content

Osteoporosis


Recommended Posts

I haven't posted for awhile. I wasn't blowing you guys off. I just wasn't feeling too well and it was hard for me to be my upbeat self. But here I am, with a question for anyone who might have some answers...

I was diagnosed with POTS 2 1/2 years ago at age 41. Yesterday I fould out that I also have osteoporosis. My t-score was a -3.0. I guess this is pretty unheard of in someone my age. So now my doctors are doing more tests to see if there's another underlying cause of the osteoporosis. I have taken prednisone off and on the past couple of years for the POTS, but more off than on and at relatively low doses. I know that prednisone can cause osteoporosis, but does anyone know if there's a connection between POTS and osteoporosis?

Thanks

Bren

Link to comment
Share on other sites

Hi Steph

Thanks for your reply. I never took Florinef. I was searching a lot last night and I found a connection between osteoporosis and familial dysautonomia but I think that if you have that, the symptoms manifest themselves at birth (although it is a Jewish genetic disease). I was supposed to see Dr. Grubb in November, but my appointment was cancelled because of his health. I have tried to reschedule it and Shari tells me it's better to stay on the reschedule list (I'll get in sooner). My doctors here are treating me, but it's the same old thing and now I have lots of new symptoms. I was in the emergency room a few weeks ago because I had vertigo so bad I couldn't tell which end was up. They think that I might have Meneire's disease. On top of everything else, the insurance company is questioning my disability. Right now, I'm hanging on to the end of my rope by my teeth and I'm trying soooooo hard to remain positive....

Bren

PS At least I forwarded stupid e-mails to you now and then :)

Link to comment
Share on other sites

Bren

Hey, I love your emails all though there have been a few sad real life ones. I appreciate all that you send and I usually get a lot of mileage out of them.

I'm heading to bed otherwise I would investigate this further right now. I did a search on what causes osteoporosis, you might want to do the same. Also medications would be any of the steroid ones. Milk too! Yep, milk causes osteoporosis.`

Link to comment
Share on other sites

Hi Bren, good to see you back! Sorry to hear you have not been feeling that well.

I had my first bone density in my late 40's and I also have osteoporosis in some areas and osteopenia in others. I never thought about the question of could it be related to POTS before your post. I took florinef for 3 years and know that it is a contributing factor but I have a strong family history plus thin frame so just "assumed" that is the issue.

The real problem for me is that I cannot take any of the meds due to issues resulting from POTS, particularly GI problems. I did try the nasal spray but had to go off it a month later. I have worked with my doctor and a nutritionist/pharmacist to try a wide variety of calcium supplements with no luck. When I take calcium supplements I get muscle and joint pain, an uncommon reaction for most. One of the supplements I tried also caused heart pain. It is very frustrating. I haven't been able to start an exercise program with weights due to tachycardia whenever I pick up anything, but am trying yoga and walking and hopefully can over time work up to weights.

good luck to you and I will be very interested if anyone knows of a connection between POTS and osteoporosis.

Link to comment
Share on other sites

I don't think that the POTS itself would cause osteoporosis, but two of the primary causes of osteoporosis are lack of weight-bearing exercise and stress. We don't get as much exercise as most others probably do because we feel so badly, and stress ... well, when you're chronically ill, stress is obvious. That's my totally non-medical opinion.

Amy

Link to comment
Share on other sites

Bren, I have meneires and the only good thing about it is it's an approval for disability. It's on their list. I've had it for a long time and I really sympathize if you've got it. Let's hope it's an acute labrynthitis or something that resolves itself. It's what I take my valium for and I still have attacks fairly frequently. It's why I don't drive anymore. Have an ENT do a BAER test, I believe it's what it's called and you can get a definitive diagnoses. If that's not the name, then it's the test where they put a little probe in your ears and it buzzes for 25 minutes or so. Not painful, but annoying. I have it in both ears which is not that common. One side has hearing loss and the other doesn't. The problem with meneires is you can't have salt, it makes it worse. Or caffeine. All the things you need with POTS. Normal range for dexa scans for osteoporosis is 1 to -1. Osteopenia is -1 to -2.5 and anything over that is osteoporosis. It also depends on what kind of scan you had. If it was a heel or hand I would reccomend you get a dexa of the hip and back, as it is much more accurate. Mine is -2. I am having another one next week. I just turned 50 and the endocrinologist says it's significant, so maybe you should see one if you haven't. I don't tolerate the meds for it because of my gut troubles, so we just keep an eye on it. Viactive is a good source of calcium, but it would be good to know why you are losing all that bone mass. Good luck! morgan

Link to comment
Share on other sites

calypso--your thoughts make sense to me--also my non-medical opinion :) . Many of us do seem to have small frames, and some of us cannot exercise much. Also anyone of Northern European or Asian descent is at higher risk. Most of us using this site fit into one of these categories.

I also saw on Dr. Weil's website:

Several studies have demonstrated the harmful effects of high dietary sodium on bone integrity. Reducing sodium intake can reduce bone loss considerably.

Here are his dietary recommendations in case anyone is interested:

Eat calcium-rich foods every day. In addition to the dairy foods already discussed, you'll find calcium in fortified soymilk, some tofu, sesame seeds and black-eyed peas. Blackstrap molasses, poppy seeds, almonds and figs are also good sources of calcium.

Eat magnesium-rich foods every day. Our menu plan is rich in these foods which include spinach, tofu, almonds, broccoli and lentils. Pumpkin seeds and sunflower seeds are also good sources of magnesium.

Eat vitamin K-rich foods every day. The best sources are green leafy vegetables (see the calcium-rich greens listed above), but most vegetables are good sources.

A calcium/magnesium supplement. Although most forms of supplemental calcium are acceptable, calcium citrate appears to be better absorbed, especially in older adults. To ensure maximum absorption, take with meals and limit to 500 mg per dosage. Magnesium is also an important mineral in the bone matrix, and is usually provided with calcium to offset some of its constipating effects.

Vitamin K ? More recently identified as an important nutrient in bone health, vitamin K helps activate certain proteins that are involved in the structuring of bone mass. Talk with your doctor about the effects of vitamin K if you are taking a blood-thinning medication.

http://www.drweil.com/u/HC/HCA244/#3

Link to comment
Share on other sites

I had a regular bone density test. My spine was -3.0 and my hips was -2.3. I am undergoing additional tests. I have an appointment with my rheumatologist and also a nephralogist (sp?). Does anyone know the dosage and length of time you need to be on prednisone to link it to osteoporosis?

Bren

Link to comment
Share on other sites

I have osteopenia and it has gotten worse in 4 years...so i try to make sure I use weight bearing exercises at least 2 times a week. Nautilus for lower body and one safe back machine. I can't do much with upper body w.o trigger episodes.

BUT WEIGHT BEARING EXERCISE DOES MORE FOR OSTEOPOROSIS than meds and supplements!! Supplements are important but some aren't absorbed well. Calcium Citrate is best and more expensive.

See this site for strong women exercises.

http://www.strongwomen.com/faqs/strong_bones.stm

and

http://susunweed.com/susunweedarticles.htm#an5

this site talks about the importance of FLEXIBLE BONES not just stronger bones...herbal infusions can help but I know stinging nettles is a diuretic so that is a no no for some of us *sigh* Also Soy can LEACH calcium from our bones.

Link to comment
Share on other sites

I found this on a search of the National Osteoporosis Foundation website. I did not find the full article because it is part of a 153 page set of abstracts.

...Departments of Medicine and Public Health Sciences, St George's Hospital Medical School, London, UK Background. Hypertension is associated with increased urinary calcium (UCa) excretion. A high sodium intake increases both UCa and... http://www.nof.org/events/world_congress/abstracts.pdf

http://search.atomz.com/search/?sp-q=hyper...00001&x=13&y=21

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...