Low Vitamin D Levels

[Darlene]

my rheumatologist just called, said my vitamin d levels were pretty low. could this have caused all the pain i ve been in, and other symptoms i thought were caused from dysautonomia.

[puppylove]

I think there was a poll on this... mine were very low also. I know for a "normal" person you don't get symptoms or feel bad when your vitamin D is low. I'm not sure about us though...

[blitzk]

My vitamin D levels have been low as well. Along same lines, anyone else have low white blood cell counts?

[misstraci]

mine is also low!! hmmmm

[sue1234]

I did a poll on low vitamin D, and if I remember correctly, 75% of the people that answered were either under-range OR had not tested. Definitely the majority were under-range overall.

[issie]

Yes, low vit D levels can cause all kinds of pain and I do think most of us that know what our levels are - are all too low. I've been taking 7,000 a day and my levels are still in the 40's and they need to be up at least to 60. When we did this thread the last time, seems like someone said something about - there is an illness that the vit D levels need to be low - but can't remember what that was about. She was saying to be checked for that before we upped our levels. But, since mine has come up to 40 - I feel better than I did when it was lower.

Issie

[Katybug]

Mine are low. Vit D is essential for strong bones but also for your immune system to function well so low levels can have various implications. It is important to know that taking the supplement isn't enough. You still need to spend 10-15 minutes in the sun with exposed, unprotected skin each day to allow the Vit D to be properly utilized by your body. If you take supplements but don't get enough sunlight , you won't be able to absorb it very well. It also should be taken with a meal that has a substantial amount of fat in it as it is a fat-soluble vitamin.

[ramakentesh]

I have high vitamin D. Didnt stop my most recent relapse LOL

[Brye]

I've had issues with horrible fatigue/memory problems. I've found that when my vit d levels come back up with the supplements I feel a bit better. My lowest I think was 11.

Brye

[julieph85]

My rheumatologist says most people with autoimmune disorders have low vitamin D. mine has been low since i got RA. interesting connection

[Chaos]

Julie- that is an interesting connection. Dr G suspects autoimmune aspect to my dysauto symptoms but my testing always comes back normal. HLA B27 gene that I have seems to be connected to a lot of autoimmune diseases however.

[issie]

Chaos,

So do you have AS (ankylosing spondylitis). My father has it and I'm being watched for it because of changes in my back and pain that I have. I've never had the gentic testing.

[lillybits]

I have low d but high white cells low plateletts and hemoglobin. Low d is connected to a lot of different diseases and poor health conditions

[cindeebee]

Mine was low, about 31. And I had alot of pain, lack of energy and issues with sleep, which are symptoms of low vit D. My dr. put me on 50,000IU two times a week for about 6 months. I'm now taking 5,000 daily. Last I checked, my levels were around 50. It's definitely helped. I know all these symptoms are also related to our Dysautonomia, but if you haven't had those vit D levels checked...that would be a great place to start. I felt so much better w the vit D. Now, if it would only help with the dizziness...

[POTSMama]

I have had nonexistant vitamin D levels every time they've checked then, for years, but I do feel better on supplements (I use Carlson's oil-based drops usually, as my nutritionist said they were absorbed better). I live in Colorado where I get lots of sunshine but that hasn't made a difference.

I've found some discussions since I've also developed MCAD symptoms saying that osteoporosis is common in MCAD so assume there is a ink there. I've also heard that MCAD/POTS patients can have fluctuating high or low WBC counts. I'm no expert, just passing this along. But it seems enough of us have low D that it must be related to the POTS. Interestingly, though, I did not have pain with low D - - only lack of energy/brain fog were worse. But I don't have bone pain with my MCAD either like a lot of people do (knock on wood).

Don't forget to calcium supplement too while you D supplement, because you're probably low on calcium as well since it takes D for calcium to be absorbed/effective

[Christy_D]

When my son's was check 2 years ago, his was 7! He couldn't lift his head off the pillow, once he started the vitamin D supplement he got more energy. His D levels are fine now since he continues to take a supplement, but his other POTS symptoms are still severe.

[jangle]

Christy, what are your son's levels at now?

I read a case study where a person was able to achieve remission from POTS with a vitamin D level of ~40. It was posted on the thread, "Has anyone tried calcitriol"

[Christy_D]

I'm not sure what it is, but it was checked in October and they said it was fine. I should check the paperwork to see what the actual number was.

[we_don't_look_sick]

YES!!! I have found low vitamin D makes my pain worse & POTS/NCS symptoms worse.

I have been at 6; 6.5 and 7. I have extreme fatigue and more pain when the vitamin D is low. I have Increased heart rate & palpations.

I gave taken several Rx prescriptions of Vitamin D 50,000 IU 2x a week and other times the prescription was for 1x a week. I also have tried OTC and will say the capsules work better for me than the pill form.

I think someone with Lupus and Sarcoidosis have problems taking vitamin D but they need D so it would take a knowledgable Dr to help them.