It appears that many POTS patients also have severe vitamin D deficiency. Mine has affected my bone density and parathyroid. Those of u with Vit D deficiency might want to get these checked out.

So my question is this how low has your Vitamin D been at your lowest? Did u find out a cause? How was it treated?

I have been on mega rx 50,000 units a week. Now, I am going to 50,000 twice a week and caltrate with D. AS soon as I would go off the Vit D rx, it went back down. Mine was 4. Yep, 4! The highest I ever got was 28, then back down to 7 and now 6. I really want to investigate how many of us have this. Bev (as in Grubb's Bev) said they have been noticing this in a lot of POTS patients.

How do you measure?

i was tested back in dec by the endo, mine was 22 (low) so he put me on mega doses, i have had pain in my legs, but when i take the vit D it seems to help, but when i dont the pain in my hips and knees come back. they say when the vit D is low it can cause lots of different things to go wrong in the body, because it actually works as a hormone.

Hi Neshema,
It is interesting as about a year ago (plus or minus) - my Vit. D level was 7. My doctor put me on 50,000 i.u. 3 or 4 times per week for about a month or 2 (it has been a while so I don't really remember how we tapered).

I am now on 50,000 i.u. per week and also am taking 1200 to 1800mg of Cacium with 800 to 1200 i.u. of Vit. D daily plus I have been put on Forteo (a daily injection for bone density).

I am 54 and have really bad bones (I don't remember the scores but they are very poor). I also suffered a spontaneous compression fracture of my T12 spine in January due to the honeycombed deterioration of my vertebrae.

I have some vascular lesions (essentially tumors) that cover my T4 through L1,L2 vertebrae that are probably contributing to my vertebral bodies.

I do have a very rare disease called Lymphangiomatosis (LYMF for short) and it appears that many patients with this disease have an accompanied other rare disease called Gorham's disease that is described as a "disappearing bone" disease.

I have not been offically described as having the Gorham's assoiation and am going to lots of doctors at Hopkins right now who may better determine what is happening in my body.

Anyway, that is my vitamin D story with associated issues. My vitamin D levels right now are very good and in fact are near the top normal range (I believe that is what my endocrinologist told me on my last visit).

One of my biggest problem right now is my inability to focus and remember what my doctors say. I have purchased a small digital recorder to help me with that - but I am still a bit awkward in using it whan I have my doctor visits as it is difficult to say to the doctor that I need to record our conversations so that I can remember later what we said.

Mine was 20. I treid the 50K pill and it made me purge. So I went to smaller dose pills taken daily and the easier way--getting in the sun. It was expected it would take 3 or 4 months to pull it up. I did it in 4 weeks! All I do is go out on the deck and drink my morning coffee (just 1/2 cup)in the sun and it worked! Now I'm at a solid 57 for D! But it DOES drop again--so this is a forever job. Seems to me to be an obvious side effect of long-term adrenal surge based on my web investigations. And a serious one as low d effects immune system, calcium in bones, neuropathic pain and all sorts of stuff I had!

Sandy

my vit d level was 10 (this was the combo of d2 and d3). the range was 25-80 so i was very very low. i take the 50000iu weekly and i'm not sure what it has changed to (yet).

i get very limited sun because i can't handle the heat. so no wonder i'm vit d deficient. lol

Boy do I hear that! The heat is a real killer in Fl right now! But I go out early in the morning before it gets too hot. Again, it only takes 30 minutes in the sun for 10,000 units of D! If you're light-skinned 15 minutes may even do it. Past this I try NOT to get much sun-the heat for one--but also the tanner you get the harder it is for your skin to absorb vitamin D. I also noticed that the large doeses of vitamin d made me even MORE queasy when hot--so keep drinking the water is what I do--or even better throw in some lemon juice and live the cliche'.

Hope this helps!
Sandy

BTW--not to belabor a point--but it will take 4 or 5 times longer to raise your D levels with pills than with the sun. Try to get ANY sun you can tolerate on as much skin as you're willing to bare. Again, 30 minutes is the maximum time you'd need--if you're dark skinned.

Sandy

I have been using a prescription capsule. On the bottle it says "Drisdol"...

I take it with a "high-fat" meal (as prescribed by my endocrinologist). I have not had any problems with it that I can tell.

I do not go into the sun very much at all as I do have a history of a melanoma (removed in 2001). I also do not do well in the sun (and in the morning when it is not so bad I am fighting my perennial "morning sickness" - nausea and many times vomiting.

Life is not always as easy as it seems it should be (to all of those who take being able to walk out of the door for granted)...

I have been there... yet it has been a long time since I have had such a privledge.

So sorry for your troubles--and I CAN relate. Morning are very tuff for me too. First there's the nausea--then it eventually clears some if I can just FORCE myself to move and drink a couple of bottles of water--then I have to force food to take meds--then the meds sometimes bring it all back. What a pain!

But getting outside a bit for a few minutes and seeing the birds and such seems to help me. Still, each person has to figure out what works best for them.

Sandy

Thanks, everyone. Has it affected anyone's PTH (parathyroid hormone)? Ok, gtg, I am going into seizure mode.

Hi Sandy,
I have to be very careful with water as if I drink too much it will become projectile water... It takes a while for water to "digest" in my stomach - which is kind of wierd but has been a problem for many years.

I know what it is like to try to force food so that my meds will work well and trying to keep it in. It is a constant cycle of struggles.

I agree that it is nice to get outside sometimes. I don't do well in the sun - ever...

I especially have a problem with the Baltimore weather where in the summer time it is hot and humid and that just does not do well for me.

I NEED A.C. to be able to breathe in this weather. Yes... we are all different in what our bodies will allow us to do.

Warmest regards,
Sharon

I had my first test for vitamin D 4 or 5 months ago. It was so low it didn't even register.

Ive been on 50,000/week ever since. I've never had any problems taking them with or without food. It was tested last week and was up to normal range, which surprised the doctor. She had told me it would take at least 6 months.

I have been trying to get more sun, which is hard for me because I hate heat. I do NOT like to be hot and I get hot very easily. AND I live in the deep south. I can remember as a kid just sitting in front of the window fan eating ice in the summer.

eeyore

Excellents news EEyore! I really do think the sun helps--even if you can only take a bit of it. BTW A popcicle might be a good idea!
BTW part two--mine went right back down again so it may be that this is a forever problem for us adrenal dys folk and we need to be vigilant.

Sandy

BUT PLEASE tell me if anyone has had associated increase in parathyroid hormone. It could be a tumor.