Awhile back I posted that I was having some neurological issues - tingling, burning in legs and arms, weird shooting pains, leg cramps.... Saw my PCP who referred me to a neurologist. I am now undergoing all sorts of tests to rule out possible MS and other neurological conditions. In the course of this, my neurologist ordered a bunch of blood tests to check for various vitamin deficiencies and I've had some unexpected findings. I am wondering if anyone else has experienced this with vitamin deficiencies and what's causing them.
Vitamin D: About two years ago my Vitamin D level was very low at 12 (normal is between 30 and 74). I know this is a common thing for us lupies. I of course immediately began supplementing and my level went up to 42. However, my recent test shows my Vitamin D back down to 24 even though I have been supplementing all along. What is up with this?
Vitamin B12: My B12 test came back low normal at 333 which is actually considered low now. They are thinking of raising the normal range to above 400. And at 333 it can cause some neurological issues.
Vitamin B1: My Vitamin B1 came back low. This is very strange as it is pretty hard to have a low B1 level as it is easy to get in food. I read up on it and it says that it is rare to have B1 deficiency unless you are an alcoholic (I don't drink at all) or you only eat white rice and beef. I eat brown rice and chicken a lot.
Folate and iron are normal. Iron was high at one point though.
So it seems like this must be some kind of absorption problem, but I'm not sure why? Anyone have any ideas or experienced anything like this?
I have had almost the exact same numbers as you on Vitamin D, and I have been taking 50K ius once a week now for about a year. If I stop it goes right back to 12. Since I have been doing it I feel much better and if I skip a week I can totally feel it as I feel sluggish and bones start to hurt almost right away. It is amazing what a difference it makes.
Vitamin B12 I have not had it checked as often I do not know the number, but I am on Metformin due to PCOS and hormone issues so that cause cause some imbalance in vitamin B so I take some occasionally but not as often. I think I should more often. because when the doctor gives me a shot I feel SO much better! My iron is usually normal but it can be borderline low at times and then borderline high. My problem is my platelets are high so I have to be careful with iron and anemia. I see a great neurologist I have similar issues, but I had a brain spect which finally showed why I have the brain problems as all my other tests, MRI, spinal tap, CT scans came back normal.
You may want to see a naturopathic or integrative medicine type doctor. They can evaluate you further. A lot of us who have autoimmune diseases will have something called Leaky Gut Syndrome. You can take tons of oral vit's but if your intestinal lining is compromised you will be unable to absorb and utilize them, resulting in deficiencies. I am one who has this problem. Most mainstream physicians will not explore this and you will just keep getting worse.
Also, your genetics can be in play. Sometime down the road, if you can't get things figured out, you may want to consider genetic testing. I am currently waiting for my genetic results to come back. I did this through the following website. Then, once my results are back, I will be seeing a practitioner that treats patients with these mutations.
23andme.com
This link explains a lot about genetic mutation and methylation pathways. I know it's a lot of information but you may want to read through it.
How often does your doctor test your Vit D level? Just curious. You have Medicare, right?
Ally
Ann A. said:
I can only respond about vitamin D. Our bodies use it. They use it to help maintain the level of calcium in our blood within a very narrow range (helping to provide information that says get calcium from the intestines or get from the bone). Our bodies use vitamin D to fight infection. Our bodies use vitamin D to fight inflammation. Some research supports the hypothesis that our bodies use vitamin D to fight the inflammation that leads to heart attacks and cancer.
If you think that you are having a problem absorbing vitamin D through your digestive system (this happens to people with chrons and other chronic digestive system illnesses) try getting it through the skin - transdermally. I sometimes use a cream or a liquid. But I can also do it with the gel caps. I put a little carrier oil on a place that I am not going to wash soon, I like olive oil or coconut oil. Then drop on the vitamin oil from the gelcap. Gets me around my tummy issues.
When my severe vitamin D deficiency was first dx we tested every three months. We learned that even a small lupus flare, I mean tiny, would drop my vitamin D level 20 nanograms in a week. We also learned that a short course of Prednisone had the same effect. So between the little flare and prednisone I was down 40 nanograms in two weeks. My physician instructed me to increase the rate at which I supplemented. Now we try to keep my level high enough that I can drop 40 nanograms and still not be deficient. What happens to your vitamin D level when you increase the rate of supplementation?
So you might have an issue with absorption. But your body could simply be using the available vitamin D to fight off infections or inflammation. And you could be taking medicines like Prednisone or Nuerontin (any of the antiepileptic drugs) that interfere with its metabolism.
That’s really interesting about the fluctuating vitamin D. I wasn’t aware that it could fluctuate with flares. I’m getting the feeling that I do have some soirt of absorption issue. Could be leaky gut syndrome. I had given up gluten and dairy for a while and it seemed to help a bit with how I felt but I just got lazy. Guess it’s time to step it up again. Ann, I’ll definitely try your suggestion for applying it externally. Make sense to bypass the gut if its not working right.
Ally, thanks for the info about methylation. I have just been reading about that a few days ago so you’re suggestion was perfectly timed. I definitely want to find out if I have that gene mutation.
Thanks, they tried to nail me once on a vitamin D test. I had to appeal it several times. It's almost 300 dollars. These labs rob you for a test that is really listed for about $39. The doctor showed me the cost list.
Ann A. said:
Since I have been on Medicare I get vitvD test twice a year. Which is often enough once you know how your body uses it. If possible people need a winter test and a summer test or a spring and fall.
You're welcome heymj. I want to know too. I'm chompin at the bit here waiting for my test results to come back. Takes up to 6-8 wks lately cause so many people are getting the testing done, they are backlogged. There are other mutation besides the MTHFR that need to be addressed "before" MTHFR. You can read this link, it is important that these mutations are treated in a certain order.
The 23andme testing is now only 99dollars. It used to be1000 dollars when they started up. With so many people doing it, they were able to gradually lower the cost.
Ally
heymj said:
Ally, thanks for the info about methylation. I have just been reading about that a few days ago so you're suggestion was perfectly timed. I definitely want to find out if I have that gene mutation.
I have low vitamin d level and my gp said to sit in the sun for 15mins a day. I spend a lot longer than that outdoors. They are going to recheck it in a month. I said should i take vitamin supplements and she said no because it could give a false reading. It could be low because of the lupus or another problem. Always something else to worry about with this condition.
I just had this same issue and my Reumy is testing for Celiac, she says it is common to have these problems as Celiac and Chrons prevent nutrients from absorbing into the intestinal tract. I suspect that my results are in, but I missed the call from the doctors office and probably won't hear back till Monday. I would be glad to let you know what she says, it might help you make a connection and help to solve your problem.
Oh yeah, I also wanted to say that my Vit D was 19 and my Reumy put me on 50,000 units of vit D therapy for 5 weeks and 5000 units a day as well. This happened to me 2 years ago as well and I had the same therapy only with 2000 units a day supplement. I stopped taking the supplement when my RA went into remission and my Vit D dropped very low again. This is what sparked the test for Celiac. I am a Phlebotomist and I drew a man with Crohn's the other day and he told this is an issue with people with Crohn as well. Hope this info helps!
Hi Joanie, yes please let me know. I don’t really have any of the symptoms of Crohn’s, I have chronic constipation and all these weird vitamin levels though. They did do some testing for celiac and one of the autoimmune markers came back positive, but the GI doctor and every other doctor I’ve seen dismissed it because it was such a low positive. To me an absorption issue is the only thing that really makes sense. Any info you could provide would be great. Thanks !
Hi, heymj, it is not just vitamin D that your body is not obsorbing it is vitamin D3 that comes from the sun that you are low on and because the Sun can trigger a flare in us Lupies we tend to avoid the Sun. My Rhuemy has me on 4,000 units of D3 daily, folic acid, DHEA for energy, Omega 3&6 , Magnesium for muscles and I take a multi geared for women's health. With Lupus you must excersise daily or you will hurt all over moving helps the pain to stop along with your meds. Also find a web site that gives you a list of alkaline foods and drinks, one of the foods that is high in B vitamins is cucumbers I eat half of one each day with dinner soaked in organic Apple Cider Vinegar. I also have a Neuro, Gastro, Dermy and an Endo Dr. with all of these Docs and the high cost of medical care, I am so glad that we have ObamaCare.
Allergic, Wow! What an up charge... $39 to $300??!! No wonder healthcare is in the crapper. I read an article in TIME that said a hospital charged a man $12 for the pen the doc used to mark him before surgery. Like only 2 or 3 marks... $12!! This why I can't afford to get fully diagnosed. What test out of all the tests for Lupus would be the most beneficial for diagnoses, in anyone's opinion.... cause I know I won't be able to afford all of the tests my rheumy wants to run, til obamacare really starts, or I pop out a kid to get Medicare. Haha. I did want the vit D test done, but with the $300 price tag, that may have to wait.
Oh and all the leaky gut chat is eye opening as well. Thank you for that everyone, great advice. :)
Yea, it's messed up. Hospital sent me a bill for $83. I called an asked what it was for. They said it was for the 2 extra strength Tylenol that they gave me while I was in the ER. I told them, "hey, I'm on disability, this is ridiculous, can you cut me a break?" I had to nag them and talk to several different people and then finally they reluctantly"waived" the charge only because I had low income, someone else would have to pay it.
Plus mistakes are made on hospital bills, really need to check it because there have been outrageous mistakes like $1000 for a toothbrush, things like that. I avoid hospitals if I can. I found an interesting website...........
Check it out cause it might be an option for you to get a cheaper vit D test done.
Ally
Nic961 said:
Allergic, Wow! What an up charge... $39 to $300??!! No wonder healthcare is in the crapper. I read an article in TIME that said a hospital charged a man $12 for the pen the doc used to mark him before surgery. Like only 2 or 3 marks... $12!! This why I can't afford to get fully diagnosed. What test out of all the tests for Lupus would be the most beneficial for diagnoses, in anyone's opinion.... cause I know I won't be able to afford all of the tests my rheumy wants to run, til obamacare really starts, or I pop out a kid to get Medicare. Haha. I did want the vit D test done, but with the $300 price tag, that may have to wait.
Oh and all the leaky gut chat is eye opening as well. Thank you for that everyone, great advice. :)
Ann......I posted this website about home testing for Vitamin D for Nic961 and anyone without insurance. Do you know anything about this way of testing? Looks like the ZRT Lab is only $65.
Dear People with Lupus please do not risk causing damage to your internal organs by exposing yourself to the UV from sunlight.
If you cannot aborb vitamin D through your gut, absorb it through your skin. You can purchase D3 in creams and lotions or you can just poke a hole in a gelcap.
Ann, thank you!! I had a feeling you would know all about this website and lab. It's a good deal. I'm gonna copy and paste this for my records. It could help a lot of people.
Both organizations offer testing through ZRT Laboratory (www.zrtlab.com) at a cost of $65.
A test kit from ZRT Laboratory is sitting on my desk. I take it along to show to people who attend the workshops that I offer on vitamin D. The vitamin D test is blood spot test. The ZRT website offers a video on how to do a blood spot collection and a downloadable pdf document that repeats the the instructions that are found it the kit itself (http://www.zrtlab.com/resources/collection-instructions).
The link that you supplied goes to the page about testing on the website of the Vitamin D Council.