Vitamin "D" deficiency due to IVIG??

    • Anonymous
      April 26, 2010 at 11:25 pm

      Has anyone developed a sudden Vitamin “D” deficiency with long term IVIG usage and/or having CIDP ?? My blood work last 2 years is showing a large deficiency that I never had a few years ago.

      Any other vitamin problems you’ve developed after diagnosed/due to treatments???

      Has certain vitamin regiments helped you with having CIDP??

    • April 27, 2010 at 8:25 am

      We were a 22 last March, 17 2 months ago. I feel ours is due to the leaky gut, a malabsorption issue. There were other minerals that we were low on as well. I don’t suspect ivig is the culprit, but it is not like there is any research to help us with that answer. Part of the dx of Leaky Gut was the positive candida, low amounts of good candida, transferin issue, other mineral difficiencies etc. The leaky gut issue is part of the cause of autoimmune issues because it robs the body of the proper minerals and vitamins, slows down protein lets waste escape from the intestines to the blood which cause neuro toxins. An inflamatory process is born. It is obviously much more detailed than that.

      If you can keep your vitamin D at 30, you have a great chance of keeping other autoimmunes away as well as cancer. They would really like the number to be 50. Current recommendations are 10,000 IU, we are taking 50,000 IU in a liquid form that gets absorbed into the body. We drop 12 drops daily under the tongue. This insures it will be absorbed and not leak out via a pill and digestive process.

      I forgot, were you ever on steroids or cell cept, imuron etc? If so, LG is a strong possibility.

    • April 27, 2010 at 9:02 am

      Hi again Limekat,
      If you can wait till later, I have these 2 awesome abstracts that you can read. I just have to figure out how to get them from from “there” to here. I am somewhat remedial regarding computers!! here is one of the links, you can try.

    • Anonymous
      April 27, 2010 at 7:53 pm

      Thank you. Doctors are into checking Vitamin D and other ones they hadn’t been paying as much attention to before. Appreciate knowing the “good numbers” to have.

      I was on Methotraxate for 18 months and took pharmacy prescription Folic Acid every day when on it. Stopped it 2 1/2 years back. Cellcept made me to ill after 2 weeks so off it I went this time 2 years ago.
      If anyway to stay on top of CIDP I want to know.

    • Anonymous
      April 27, 2010 at 9:35 pm

      The most common cause for vitamin D deficiency is not getting as much sunlight–this is why a lot of people get vitamin D deficient in the winter in especially the Northern US (or colder parts of the world) when we stay indoors more and the days are shorter. Drinking vitamin D enriched milk can help prevent becoming deficient, but most people tend to drink less milk as adults than we probably used to as a people. Other causes of vitamin D deficiency are malabsorption in the GI tract (as Dawn reports) and kidney failure. People with darker skin are more likely to have problems getting enough vitamin D. People that take some seizure medicines or medicines for malaria can get vitamin D deficient. I have not heard of getting deficient from IV IgG. Steroids can affect vitamin D absorption. My guess is that one might get deficient from having CIDP because it is so much harder to get outside much. Fatty fish are fish are a good source of vitamin D which is part of the reason that our grandparents believed in Cod Liver Oil (Yuck!). Other sources listed are saltwater fish, liver, and egg yolks. My doctor has suggested that I take a calcium supplement with vitamin D to help keep my bones strong. People that are vitamin D deficient have diffuse pain in the the muscles and body. Since I started taking vitamin D, I feel better. I do not know if it is that or other changes, but it seems worth doing. Vitamin D is one of the fat soluble vitamins that one needs to be careful not to take too much of it because it is stored in the body. If one gets too much vitamin D (a lot more than 2000 IU/day for months), you can get “intoxication” from it with too high levels of calcium, confusion, vomiting and loss of appetite, muscle weakness, and bone weakness and pain. The recommended dose for an adult used to be 400 IU/day; now it is somewhere between 800 and 1000, with some places saying up to 2000 IU/day. 2000 IU/day is considered the maximum recommended dose for an adult and medical literature does NOT recommend taking more than 2000 IU/day routinely. Be careful not to take really big doses of it Dawn even briefly as you try to “catch up”. It is a really good thing at the doses that nature intended, but more is not always better. Many of the vitamins (like many of the Bs) will not hurt you if you take high doses since any extra just goes through the body, but you have to be careful with the fat soluble ones like A and D since they can be stored the body.

    • Anonymous
      April 27, 2010 at 11:21 pm

      I’ve been on IVIG for many, many years (2g/Kg ea 6 weeks for CIDP). My friend, a doctor took one look at me and said “Get your D3 level checked and if it is take use a Cholecalciferol supplement.” I had it checked and my D3 was quite low. Discussed w/my neuro and he said it would do no harm to take OTC supplement. I take 3000 IU daily and don’t notice any difference but my numbers went up. Evidently there is D and the seldom checked D3? Worth looking into. After all one never knows when something will actually work wonders. I keep looking and listening and sharing. Regards

    • Anonymous
      April 29, 2010 at 2:17 am

      really why would our immune system need vitamin D. well vitamin D is very immportant for many reasons that i may have mentioned but my most resent discovery is that our immune system is ACID. I dont know why I never put it together before but protien is acid!!!. after the immune response happens, calcium is used to neutralized it. vitamin D is used to grab up dietary calcium from the small intestine but what if the small intestine is erroded? our kidneys are partly responsible for regulating vitamin D, calcium vs phosphate, potassium vs sodium. kydney malfunction can cause secondary hyperparathyoidism which leads to low blood calcium. why are the kidneys malfunctioning? one reason could be the lack of reabsortion of calcium from the immune response. calcium could dump into the kidneys.
      vitamin K helps guide calcium where it needs to go. it is found in green vegitables but also in the intestinal flora (Good bacteria) in our gut. when we take antibiotics oh say bactrim for instance, we destroy this flora.

      my ana titer switched back and forth from 1:320 to neg one week later, 1:640 and 1:40 SSB and then negative one week later, 1:1260 and 1:60 ssb to neg one week later. my body was still able to nutralize the immune response. porphyria is not rare it is only rare that you dont get diagnosed with something else first. diagnosis slips through the cracks in these negative periods. anyway I have almost reached full remission. I am running on the tredmill now.

      I am going to leave you with one word… homeostasis.

    • Anonymous
      July 13, 2010 at 4:19 pm

      This is an interesting subject. The June-July issue of I.G. Living magazine, free to subscribers, and, available online has a good article on this subject.

      Haha! The catch is “free to subscribers.”

      I received the print copy at home because I did subscribe following a recommendation I read on this forum.

      At any rate, you may subscribe on-line here to read the online version:


      I chose this to share here: According to Cantorna, PHD, …”If you don’t have other risk factors … you won’t get autoimmunity even if vitamin D is very low…”

      The quote is attributed to Reference 3 in the article.

      Pubmed accessed at: [url][/url]

      has this too say-

      …”Epidemiological evidence indicates a significant association between vitamin D deficiency and an increased incidence of several autoimmune diseases..”

      Important NOTE, I have not found an association, yet, to CIDP in any article I’ve read so far.

    • Anonymous
      July 13, 2010 at 5:24 pm

      My neurologist and GP both have recommended 2000 IU’s for several years, and just recently suggested upping it to 4000 IU’s daily. I have read that decreased Vitamin D is implicated in the development of autoimmune disorders such as MS and CIDP.

    • Anonymous
      October 23, 2010 at 10:25 pm

      There is a difference between Vitamin D and D-3. You can have normal D but low D-3 ~ I don’t know why ~ but I certainly did. That being said D-3 as cholecalciferol was recommended (evidently there are other kinds). I did my research and like most of us in search of ‘the cure’ or even ‘a little better’ decided to try it. And as previously stated – didn’t work. Possibly I didn’t give it enough time or it just didn’t help. Who knows? However my sources were were a nurse practitioner (I get good information from nurses ~ and was actually properly diagnosed by a nurse in a few minutes after years of misdiagnoses by four MD’s). and my own research. I found it interesting, a possible connection and just want to share. My dosage was 4000 ICU/day for 60 days.

    • Anonymous
      October 24, 2010 at 3:30 pm

      Several months ago I was tested for the 3 components of Vit D:

      VITAMIN D, 25-OH,TOTAL, Vit. D, 25-OH D3, & Vit D, 25-OH D2.

      Each number has to be looked at individually, but typically it is the “TOTAL” that will be low and need to be treated (as stated by lab below). 30-100ng/mL is considered “normal” for the TOTAL Vitamin D level, but studies show levels of 50ng/mL are best & desirable.

      [COLOR=”Red”]This is the laboratory description of those 3 tests run:[/COLOR]
      25-OHD3 indicates both endogenous production and supplementation.
      25-OHD2 is an indicator of exogenous sources such as diet or supplementation.
      [COLOR=”Red”]Therapy is based on measurement of Total 25-OHD[/COLOR], with
      levels <20 ng/mL indicative of Vitamin D deficiency, while levels
      between 20 ng/mL and 30 ng/mL suggest insufficiency. Optimal levels
      are >=30 ng/mL.

      Actually, as of the last couple months, levels of 50ng/mL are what is desired.

      I was put on Rx Vitamin D 50,000IU (which is the D2 form-ergocalciferol), once per week for 12 weeks and is not available OTC.

      When we re-tested at 13 weeks I was at a stable level where I could switch to OTC Vitamin D3 (cholecalciferol) 5,000IU daily.
      It is important when on supplemental D vitamin to be retested so as not to go too high with a fat soluble vitamin. We will recheck again in about 6 months, now that I am hopefully on “maintenance”.

      Anyone wanting to do research now (today) will find that the RDA has been recently changed to 800-1000IU/day and lots of new literature regarding the hazards of Vitamin D deficiencies and the benefits of normal levels has been released.

      Before self treating with high doses though, it is important to get a laboratory test value so you & your Dr have a plan. 800-1000mg IU is generally safe/sufficient, providing one is not D deficient to start with.
      Most people tested ARE deficient though, studies show.

      A Google search will turn up lots of ‘new’ sources and research on the benefits of Vitamin D.

      Whether you think it contributes to CIDP or not, it is something worth looking into as the changes have been great in the past year and it is good for general health, “to have one less problem”! 😀

    • Anonymous
      October 25, 2010 at 6:47 pm

      I, too, was put on megadose of 50,000 units (not OTC) per week by an internist over 1 1/2 years ago. My total Vit D was very low. Interestingly he put me on it because my blood pressure was very high even with my medications for it. Now my blood pressure is now normal. This doctor quoted a study done on surfers (who get lots of sunlight). It found that those with high blood pressure had low Vit D levels. I was very skeptical about taking that much Vit D, but it worked on my my blood pressure problem. Since I was recently diagnosed with CIDP I never thought about the connection to Vit D until reading this forum. Our bodies are so complex and chemically interdependent. Medical knowledge is like an iceberg, we only have discovered a little on top of the water, but the majority is below the surface yet to be discovered. Today’s accepted medical treatments may be totally abandoned in the future. I try to keep an open mind and hope for the best.

    • Anonymous
      October 25, 2010 at 8:16 pm

      Read the last sentence of the second paragraph:

      Here is what the NIH says to ‘health professionals’ [I’m not one? But found a
      way to get the info…just try.]

      Because we don’t get around so well? We don’t get OUT that much, or at least, as much as we SHOULD. Good supplements help, but finding good ones is harder-some stores sell quality stuff, others iffy stuff. Do your research well in this quarter. It’s mind boggling to slog thru, but in the end? YOU WILL be a better consumer and patient!
      Don’t let this stuff scare you…knowledge is your key to prevention. A lot of the meds we take for pain? Are notorious for depleting calcium intake…no matter how good our diets.
      I started showing the ‘D’ Deficiency BEFORE I’d gone on IVIG… and I’ve found little in IT of itself to be a cause.
      One further step I have done, and suggest others do? IS to get tested by an Endocrinologist. Why? Because I’ve seen a lot of folks who have thyroid issues who have CIDP/GBS and of those? LOTS have autoimmune thyroid problems as well.
      It’s not as scary as it seems, you get tested? Get a sono, maybe get a ‘node’ biopsy and you get thyroid substitues to help asorbtion along. A good site to check out is URL… it’s a great site all about your endo system[s]! Good luck!