Okay...here We Go. New Doc Has Reason For My Neuropathy.

[LindaJoy]

Okay, all. Here we go. I saw a new internal medicine doctor a couple of weeks ago. She tested me and found my Vitamin D to be low. Hmmmm....I'm not surprised as it's been low for over a year now!!! Actually, it's not nearly as low as it has been--it's now 18, as I'm getting out into the sun more, which isn't too far from the norm of 25. Anyway...

And, even though my Vitamin D is higher, my neuropathy is worse, yet the doctor just emailed me and said that she thinks the cause of my neuropathy is Vitamin D deficiency. (Dr. Shields, my neuro from Cleveland, said I have Neuropathic POTS. Is that caused by Vitamin D deficiency? Uh, I had POTS even with a normal Vitamin D. How many of you have heard of severe neuropathy, to the point of not being able to swallow very well, being caused by Vitamin D deficiency? Have any doctors researched this?

She wants me on 800IU of Vitamin D a day. Uhhhhhh, I can't even eat regular foods anymore, let alone take vitamins. I told her this, yet she insists that I "have to take it." I'm really not liking her very much.

Thanks.

Lindajoy

[pat57]

Don't you want to see if you respond? I sure would.

you can get D in liquid form.

http://www.vitamin-supplements-store.net/v.../vitamin-d.html

[LindaJoy]

Of course, I would LOVE to see if I respond, and wouldn't I love it if taking Vitamin D healed me, but, as I said, I cannot take vitamins without severe, severe gastric problems--that's why I'm seeing a specialist at Indiana University next week. I cannot even eat anything besides pork and white potatoes right now because of my severe, severe allergies and severe GI problems, of which I've written about here for the past year. I'm still struggling with all that. Anything new to my system either sends me into tach, anaphylaxis, or weight-losing diarrhea.

What I was questioning, when posting, was whether Vitamin D deficiency could cause the severe neuropathy that I'm having: weakness in my leg and arm to the point I drag my leg and can't lift my arm or write; can't swallow; can't expand my lungs to breathe; pins and needles constantly; muscle twitches so large that my whole arms lifts up; burning feet all the way to my knees. Can Vitamin D deficiency cause these severe of symptoms. I just don't want the easy way out, especially if it's not right. I've suffered too long for a doctor to do that to me, again. I've been to toooooo many doctors over the past year who want to blame my problems on one little thing or another, and this leaves me very leary when one says, "Vitamin D deficiency could be the reason for all of your problems," especially when I started having all of these problems long before Icbecame Vitamin D deficient, and when my problems are getting worse as my Vitamin D blood serum level gets better. It just doesn't make sense to me.

Linda

[pat57]

sorry, I thought the problem was with swallowing.A search of the subject " Neuropathy " does show dietary causes, considering what you just wrote, it seems quite likely your diet is deficent. Other vitamins are mentioned re neuropathy also.

Think you could get shots or IV?

[worththewords]

I have a Vit D deficiency and I take 400IU a day. I was told it may help relieve some of my joint pains and muscle aches when my numbers get in the normal range.

[beggiatoa]

This is an old post but one that's important. Really, you want your D levels to be above 30 ng/dl and even as high as 70 or more. You can take supplements that offer higher doses, even up to 5000 IU. I personally take 10,000 IU per day with no complications whatsoever.

Any of these would be fine

http://www.iherb.com/Search?kw=softgel&cid=3032

[iheartcats]

My Vitamin D was great when my POTS was at its worse (a few months after diagnosis). Even the Endo I saw at the time was like your Vitamin D is great (above 70, I believe) and to keep it up.

From her comment, I assume Vitamin D that's too low can make things worse (worse than I was! Agh!), but it didn't make me well.

[Mrs. Burschman]

I guess if you can find a way to take it, and it didn't work, it would at least rule it out as a cause. Then you could try to find the real issue.

She doesn't sound very nice, however.

Amy

[dsdmom]

Personally I'm a little skeptical that a vit D deficiency is THE cause of all your problems. I think a deficiency can definitely contribute to your symptoms but it seems to me like she is over simplifying things and not listening to your issue with even TAKING the supplement. I empathize with you there - ccan't take any vitamins/supplements because of severe GI issues. People think I'm nuts but they aren't the ones dealing with the pain, etc!

Of course it is important to keep your levels up so I would try to do what you can, but I'd bring this to the attention of your neuro if you have one.

[bjt22]

Well, according to many sources, most of us living in our neck of the woods are vitamin D deficient...yet few of us have disabling autonomic neuropathy.

About a year and a half ago, I was found to have a "profound deficiency"....the number I think my report said was "less than 5" whatevers it is they measure by. I did the huge 50,000 units once a week for a couple of months. I felt no different. Now, this isn't to say that a profound deficiency can't make the symptoms of the neuropathy worse...I think that's quite possible. But is it the cause? I doubt it.

[Maxine]

I think it's a lot of bullroar, and I doubt vitamin D would be the "cause". My vitamin D is profoundly low at 3-----now that's bad. My other vitamin D is in the normal range. My bone density test was fairly normal other then osteopenia of the hips, and some issues with my wrists. All my pain is from the EDS, and all instability and spine desiccation is from wear and tear on the joints and ligaments from being too hypermobile. Bones are pretty good it seems, and calcium levels are normal.

I couldn't take the vitamin D as it made me feel fluish. The doc doesn't know why, but he did wonder what else could be causing my vitamin D to be so low other then lack of sun. He's feeling I can't absord it properly, and the fact that I have trouble in the sun----and the sun making me sick may be something to followup on also----BUT he never followed up

They need to look into possible malabsorption problems. It's clear our bodies don't work properly, and they need to look outside the box and think of WHY we are so deficient-----------not always blaming lack of sun. You don't need a lot of sun exposure to have normal levels. From what I hear int's only about 10 minutes daily. http://nutrition.about.com/od/askyournutri.../f/sunlight.htm the source is in small pront below the article---NIH

Don't get me wrong, I still have to find a way to get vitamin D in me. 3 is way to low-----I was doing codliver oil----omega 3s, but I need higher amounts. I can't continue to be so low. The sun makes me so sick. The only time I can handle the sun is when the temps are around 65 degrees--- or low 70s for about a half hour-----------anything higher and just a few minutes I feel wiped out and sick. It's like my mainframe shuts down when exposed to heat of too much sun........

Maxine :0)

[erik]

From what I've read, some deficiencies can result in a neuropathy that doesn't recover fully even once the deficiency is corrected. However, further damage might be averted or some slow recover might come over time.

I've read thiamine can do that in beri beri (sometimes function comes back, sometimes not). Other things like B12, D, calcium deficiencies might be similar, not sure. Even this doesn't "prove" anything as a cause, but it can explain a circumstance where it could be a cause yet subsequent supplementation fails to correct symptoms at all (the nerves are reluctant to re-grow/re-activate).

[sue1234]

Low here also on vit. D. Someone mentioned that there might be reasons why our bodies are so stubbornly low on vit. D. One reason, I'll mention, is if calcium gets too high, vit. D is automatically downregulated in our system--in other words, our bodies quit making it. This keeps us from absorbing any more calcium from our intestines. I'm not saying all of here started out with high calcium, just mentioning this in case SOME of us might have calcium metabolic issues. I have not totally ruled that out in myself. When I turned 40(49 now), I thought I'd better start taking calcium supplements to help my aging bones. I felt AWFUL on them, bloated, etc. I was in the sun for hours during the day(deep south), so I should have been fine in the vit. D department. Quit taking the calcium. Over the next few years I spiraled down into pre-POTS, then full blown almost 4 years ago. But, I still do not tolerate calcium hardly at all, and don't tolerate vit. D at all either. I had to take the prescription dose at one time, and I felt just like people with hypercalcemia feel--higher b/p, faster pulse, worse insomnia, constipation. I quit the vit. D after a couple of doses. So, being that I fight these symptoms on a daily basis to some degree, I wonder. I urinate alot, and hypercalcemia causes excessive urination as the body is trying to get the excess calcium out. I think sometimes, if my vit. D were normal, would I be hypercalcemic daily?? In other words, would I have an outright case of hyperparathyroidism?? Of course, not many people with parathyroid issues complain about orthostatic issues, but could I be a subset because of the fluid losses and then not keeping bodily fluid homeostasis?? I think too much!

But, then again, if I don't think, who will--surely no doctor!

[erik]

This site is a bit of information overload, but it's an interesting look at parathyroid issues in case this matches anyone:

http://parathyroid.com/parathyroid-symptoms.htm

[mjan]

Dr Oz who has this new show and used to be on OPRAH.. says we need 1000 mg of Vitamin D..and that is for folks NOT with any autoimmune or other disorders..

Anyone take that??

Jan

[ramakentesh]

There is zero published data demonstrating that vitamin D deficiency is the cause of neuropathic POTS (that is high flow POTS where reduced peripheral resistance appears to be the primary problem).