This is going to be one part helpful, two parts venting and three parts of what the bleep, help me!

I have been having an odd constellation of symptoms lately, from increased muscle weakness to an increase in paresthesias of my lower legs to odd fatigue and spikes in my blood pressure (usually normal). It's true, I don't get out much but I was very taken aback by the test results I received this week. I have a Vitamin D deficiency. The rest of my metabolic panel was normal, though it was not done fasting. It is not low normal but below normal.

I have known about the prevalence of people with Vit. D deficiencies since 2000, when I did some design/writing consulting work at the Center where Dr. Greg Plotnikoff worked, who I knew as Greg. Sometimes Dr. Greg. Greg did a study way back then which clearly showed a preponderance of people with deficiencies of D. I have taken extra Vit. D3 ever since then. In fact, I have been taken at least 2000 IU's daily in supplements in the past several months and get more in the food I eat. Here is an excerpt from this article.

http://www.medscape.com/viewarticle/538290

So I'm particularly weirded out by having a deficiency. I have celiac disease but have been on a strict gluten-free diet since 2004. There may be cross-contamination but I eat mainly a whole foods diet and I've been rechecked for it and the antibodies were negative. So unless I have some liver or kidney problem, which I guess is possible, I have no idea why I should have a deficiency.

This made me think about you guys with MG who like being in the sun, like Desert Flower. Maybe it's the Vit. D you get that makes your muscles feel stronger, since a deficiency can cause muscle weakness. Interesting. Might be worth the simple blood test for it. It makes me wonder if I have other vitamin deficiencies as well.

Last April, I stopped having dairy due to an insane increase in mucous in all mucous membranes, such as coughing and feeling like my lungs were full of fluid after eating like a bite of parmesan cheese. I get enough calcium, though. I think I've had an inflammatory problem with dairy for quite a while. Like years. So maybe my GI tract is healing from years of an inflammatory process. Who knows. Everything else about my GI tract is completely normal, like no cancer, etc.



I'd like any input on this you have to offer. Obviously, I'm upping my supplements of D per my doctor, and changing the kind I'm taking. But what the heck else can I do? Sit in front of a window in the sun all day? I'm the kind of patient who thinks finding out why someone has a health problem is more important than simply "fixing" it. Why? Because adding Vitamin D might help but what if the underlying problem is not being addressed? The deficiency will continue.

This is how I feel about doctoring. I'm so sick of it. I could sit still and have something go wrong. What's next . . . bubonic plague?

Thanks for anything you have to add. I have massive amounts of doctoring fatigue and don't even want to see doctors anymore, let alone talk about them or even think about them.

Annie


More articles with good info.

http://www.mayoclinic.com/health/vit...28762-overview

http://www.foodconsumer.org/newsite/...210100720.html

http://ods.od.nih.gov/factsheets/vitamind.asp

http://www.fpnotebook.com/Pharm/Vitamins/VtmnD.htm

Hi Annie,
I'm sorry you're having to slay so many dragons at once. I totally understand. I have several health issues that I've put aside because I'm just so exhausted trying to work on my worst problems.

I too have tested low for Vitamin D. Back in the day when I had no idea what was wrong with me a read a book on vitamin D deficiency. I tried to find it again tonight so I could give you the title, but I couldn't (my study is a mess!). I looked on Amazon and I think it's the one that's named UV Advantage.. That book really opened my eyes. I'm pretty skeptical but this book had a lot of very well done studies. After reading it, I went to my (completely useless) gp and asked for a blood test. When it came back very low he asked me how I knew to get tested. He didn't know anything about vitamin D deficiency.

Since reading the book I have done a complete turnaround. I was the type of mother that slathered her children religiously with sunscreen and then put little sun hats on them, bodysuits instead of little bathing suits. The whole nine yards! I was the same way with myself (well plus, I had freckles which used to drive me crazy ). Now, I encourage my kids to get some sun in the summer, just like kids used to get. I smile when I see my youngest with a little color in his skin. I worry about my eldest who doesn't like to wear shorts.

I know this is completely unscientific but I have looked into a lot of neurological diseases: myotonic dystrophy, ms, mitochondrial diseases, etc. It seems like a huge proportion of patients have very low vitamin D levels. Everybody seems to question which came first: the disease or the deficiency. Of course you're probably aware of the strong link with locations with low sun exposure and high ms rates.

Personally, I have found that taking lots of vitamin D doesn't seem to help me feel that much better, but being out in the sun definitely does. I have twice spent a week in a sunny climate, thought I was going to completely crash, and then ended up feeling pretty darn good (for me). Also, when I am able to catch an hour lying on a lounge chair in my yard in the sun it usually makes me feel much better (but living in Oregon I usually have to wait for the summer). I know it's not supposed to work like that but I swear it really does with me. The actual sun is so much better than supplements. I grew up in San Diego and sometimes I just daydream about lying on the beach and soaking up the sun's rays. Something I never would have done when I actually lived there and was sun-phobic.

Anyway, I know that's not much scientific help, but I thought I'd throw my experience out there. I think you might live somewhere that has humid heat so that might create a problem as far as getting some sun. Still, if you get a chance, try it. Mmmm, it makes me feel so good.

By the way, sitting in front of a window won't do you any good (unfortunately), you have to actually sit in the sun. And don't feel like you haven't ingested enough - it's not your fault. It's almost impossible to get enough vitamin D from food. You have to get most of it either through sunlight (yay!) or supplements. Since cave men didn't walk around with vitamin D supplements, my theory is that there is probably some middle ground as far as sun exposure goes that is healthy.

A.

I have a Vit D thread here with two new medical videos:

http://neurotalk.psychcentral.com/thread92116.html

One cannot get Vit D synthesis from sitting behind glass. The UV is filtered out by the glass.

One cannot get appreciable D from food either. 8oz of fortified milk have 100 IU .

The only main way is to expose yourself to the sun. Or take supplements. D2 from doctors (the 50,000 IU RX form), has been shown over time to NOT WORK. So you will want to use a quality D3 supplement, in a oil/gelcap form, not powder. They are over the counter, and not expensive.

That link has links to medical information on the net. One good source is The VitaminD council. The other is Grassrootshealth.net

Hi Annie,

Sorry you are not feeling well. I hope I can be a bit of help to you....I have a vitamin D deficiency also. I took 4,000 IU or more for 3 years only to find my blood level had not budged. I had not been digesting the capsules. I switched to Carlson's Ddrops. It's liquid vitamin d and each drop is 2,000 IU and within 3 months my panel hit the low normal range for the first time.


If you recall, I have been dealing with blood pressure spikes also. I found out that mestinon can help control an oversympathetic system with issues such as random spikes and tachycardia. It seems to be working for me. Have you changed your mestinon dose recently or anything? Can you try a bit more and see if that helps?

Because of the the heart issues I am having, my doc is going to run a 24 hr urine collection to test for tumors on the adrenal glands and 2 tests for antibodies for autoimmune diseases associated with cardiac issues (one is Hu antibody and the other has to do with voltage gated potassium channel). In the meantime, he said to take the mestinon!!

debra

A. I like the abbreviation. Yeah, I know sitting in front of those darn windows doesn't work but it does feel nice. I live in midwest H@!! I can't go out in the summer due to heat and bees. I can't do the winter. So I guess I'll have to get my D in the spring and summer. Thanks for the info about the book. You know I'm an info hound. I also knew about that connection with MS, lupus and other diseases/conditions. Scientific help is all well and good but I like great instincts and experience too! I daydream about being on the beach too. It's my favorite place to be. There's nothing like a walk on a beach. It's great for getting rid of dead skin on feet too.

I know that food is hard to get D from, which is why I supplement. I do take a very good D3, in gel cap form, and have for a decade. Which is why I was so shocked about the levels.

Thanks for that info, Mrs. D. I've known about this stuff for years, and being one of those Northern Europeans who lives in the cold, dark, north, I knew I had to have it daily. My achlorhydria could be an issue but I do take Betaine HCL too. I just hope it's not a kidney issue.

Thanks, Debra. I wasn't sure about the liquid D. I take the Mestinon Syrup due to my lack of stomach acid and the fact that it absorbs more quickly. I'm no stranger to deficiencies, like iron, calcium, albumin and, of course, B12. I'm afraid it's not the Mestinon causing the BP nonsense. I take 90 mg. every 3 hours, round the clock. It may go up a little if my MG is worse but not much. That is so fantastic that your docs are doing more digging! You have such extreme weakness at times that they should. We can never assume it's "just" the MG. I may have to give the liquid D a try.

Since being specific about this issue is a good thing, I have to add that I take Vit. D twice a day. I'm taking it three times a day now, however. Geez, just set me up with an IV drip. I just looked it up . . . companies do make a sublingual vitamin D. Has anyone ever tried that?

I cannot believe how many people, even those who supplement like I do, have a deficiency. Get yours checked, guys!

AnnieB3, I totally get what you are saying as the docs still dont get that I was on what they would consider enough dietary vitamin D when I was tested. AND also I had moved and started doing a little walking so I had a bout 3 months of summer sun when they tested me and found it! So I dug into all the info I could lay my hands on. Some people just dont handle it the same in their bodies. I was even tested for a liver disease with a painful biopsy that can affect vit D. It is associated with Sjogrens which I also have.

That was back in 2006-2007. What I have learned is that the only way I get the strength back I can get from having generous levels of vitamin D in me is to tan ALOT. I didnt start to really recover till I experimented with tanning at a tan salon and increased to 3 -4 times a week. If I can do 10mn or more in the bed I can get enough with 3 times a week. But this year cause of mg hitting my eyes I can nolonger tan so I had to try to see how much I could get outside and never got above 42 which is where my endo wants me as if I am in the 30s as the charts suggested if I miss a week I start to drop.

I did try a home tan unit but it caused me to have fainting spells. It is an option tho for others. The best book I found on it was UV Advantage. Having enough vit D in me is enough of an edge to get over to see my grankids and keep infections down is what I have learned. Oh it also keeps my mood normal. Boy I was a different person when I hardly had any in me. It is scary to think it took and open-minded student to test me becasue of the level of pain I was in that didnt make sense.

Annie59

Hi Annie,
You offer so much support and knowledge to all of us on this forum. I wish I had additional information to provide you regarding your Vit D deficiency, but I really don't. I do understand your frustration and "doctoring fatigue."

Was this the first Vit D level that you had drawn? Is there a possibility that your Vit D level is falsely low? One of the links you provided (from NIH) mentioned the difficulty and variability of laboratory assays in determining serum concentration of Vit D. Although it appears that there has been some standardization across labs since 2009, I wonder if this is a factor in your lab results, particularly with you taking a more than adequate Vit D supplement.


I'm going to ask my doc about getting my Vit D level checked. I'm a little surprised that this wasn't done before I started on steroids. The docs just told me to take Vit D, but no reference as to how much. I do spend a fair amount of time outdoors and am fortunate to live in an area that gets lots of sunshine. However, I slather on the sunscreen, especially now, b/c the prophylactic antibiotics I'm on with the high-dose pred causes me to burn easily with sun exposure. Although my outdoor time boosts my energy level, I do wonder how much Vit D I'm actually absorbing?

I hope you have a sunny weekend!
Cate

Annie59, I won't do tanning beds due to the cancer risks. I'll have to sit in the sun. As soon as the mosquitoes are gone.

Catie, Thanks. Support is as wonderful, if not more, than information. Yeah, this was the first level ever drawn. My endocrinologist ran the test, without my asking, and it ran both D2 and D3 levels which add up to the total Vitamin D. I trust their methods and lab, since I've had labs run there before. I don't doubt that it's accurate, given my symptoms. I also took 800 IU's before the appt., so if anything it's falsely high! I suppose that's like eating a sundae before having your glucose checked.

Be careful with those prophylactic antibiotics! You could be setting yourself up for a clostridium difficile situation. Do you take probiotics like acidophilus? People on Pred can easily have problems with both D and Calcium. And taking flax or fish oil daily is essential. Those antiprostaglandin drugs reduce the gel coating of the stomach, can reduce stomach acid (heck, you're probably on an acid blocker too, right?) and can wreak havoc on the GI tract. Doesn't it suck that we have to be so vigilant about our health?

I'd rather take sensible supplements daily than be sick. It boggles my mind, though, when even those aren't enough!

Annie

Thanks Annie. I wasn't real keen on taking the antibx, but my doc was concerned about the risk of pneumocystis pneumonia on the high pred dose. I am taking acidophilus and fish oil daily. And, no...I'm not taking a acid blocker. I do need to add more Vit D.

I am tolerating the prednisone better than I anticipated--no weight gain (I know that's vain, but it was a big concern of mine), a little insomnia (restorative yoga has worked wonders for this). I've modified my diet to decrease calories, fat and sodium intake and I think this has helped my blood glucose decrease and blood pressure remain stable.

I do sometimes wonder if it's all worth it and I know it'll be a long road to wean the steroid.

Cate

Annie,
I understand the doctor fatigue. And I am completely frustrated by the lack of nutritional knowledge of most doctors, especially my neuro.

I have always been helped by sunlight. When I was a kid I would get sick if I didn't get at least a few days of sunshine every week. I lived for a while in a place that often had cloudy winters and that is when I developed allergies and the only thing that helped was to go for a long drive every weekend to a sunny place. I did try tanning beds and a sun lamp, both of which helped me (I never used these long enough to get tan, only to help my allergy symptoms).

After I realized that sun helped to minimize my MG symptoms, I have been trying to get 15 minutes of sunshine on most days. The good news is that my allergies seem to have disappeared since I started this routine.

I have never taken vitamin D supplements but now I am curious about getting my vitamin D level tested...oh, but I am not ready to go back to see any doctor.

I have read studies that show how sunlight is good for us, but I didn't save the links. I also read that eating good food, fruits and vegetables mostly, may protect your skin from sun damage. I decided that I'd take that risk of skin cancer, because the benefits of sun for me are so noticable. I do try to stay out of the sun in the middle of the day.

This is a good subject to learn more about.

What breaks down vitamin D in the body? Maybe there is something in your diet, vitamins, medicines that encourange the vitamin D to break down and therefore your body is not able to use it.

Here are some interesting articles:

-http://www.vitamindcouncil.org/treatment.shtml

-This site suggest that soy and omega-3 fatty acids are helpful for keeping vitamin D available for use in our body.
http://www.vitamindcouncil.org/cancerProstate.shtml

-I do read in many places that the D3 form is much better than D2 (as mrs D said), here is one site http://www.ncbi.nlm.nih.gov/pubmed/17023693

I think I'll go look at mrs D's thread.

Annie, I hope you find something to help you. Thanks for bringing up this topic.