Over the past several years, the scientific and medical communities have begun to make a connection between Vitamin D (25-hydroxyvitamin D or [25(OH)D]) levels and the body’s immune response. We are writing this blog not to promote the use of vitamin D as a lupus treatment, but rather to help inform you as to some of the important research and information that is currently available on vitamin d deficiency and its role in lupus. Some studies have shown that as many as 67% (and even a higher percentage in other studies) of patients with SLE (see below for definition) are vitamin D deficient which makes this research all the more relevant to gaining more understanding about the connection between vitamin D levels and lupus disease activity.
Systemic lupus erythematosus (SLE) is a very long name for a very complicated disease that is more commonly known as lupus. Lupus is a widespread and chronic (lifelong) autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood, or skin. SLE can affect nearly every organ system in the body.
At times lupus patients may have periods with few to no symptoms, and at other times the patient may have high disease activity which often includes unpredictable and debilitating bouts with symptoms of the disease. These periods of increased disease activity are called flares.
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What is vitamin D and how does it affect the body?
What is vitamin D?
- It is the only vitamin that the body can produce on its own. Your body needs to get all other vitamins from the foods you eat or by taking supplements.
- Once your body gets vitamin D, it turns it into a hormone (called either activated vitamin D or calcitriol). It is the ONLY vitamin that does this.
Here are some of the systems and processes that vitamin D effects:
- It is essential for strong bones because it helps the body use calcium from dietary intake
- Muscle function
- Cellular growth and changes
- Circulatory/Cardiovascular system
- Respiratory system
- Brain development
- Anti-cancer effects
- The immune system’s T-cells and dendritic cells. Dendritic cells play an important role in protective immunity.
- Vitamin D is also thought to have antibacterial and anti-inflammatory properties
Many studies have now shown that there is a link between vitamin D and lupus. Here are some fast facts based on studies of vitamin D and lupus:
- People with lupus are more likely to have low levels of vitamin D.
- Lupus patients with higher levels of vitamin D tend to have fewer lupus symptoms.
- The risk factors for heart disease in lupus patients increases if D levels are low. A higher body mass index (BMI) may also increase a risk for heart disease.
- The risk for high blood pressure and elevated lipids is higher in SLE patients with a vitamin D deficiency.
- Some studies have shown that giving vitamin D supplements to lupus patients can reduce the chances and occurrences of flares.
- Adding vitamin D in vitro (test tube experiments performed with cells or biological molecules) has been shown to reverse abnormalities in the immune system characteristic of SLE.
What are the symptoms for vitamin D deficiency?
The symptoms for vitamin D deficiency can be very subtle but can include fatigue, general aches and pains or frequent infections. Some people may have no noticeable symptoms at all. If you have pain in your bones or weakness that causes mobility issues (this can be a symptom of severe vitamin D deficiency), please seek medical attention immediately.
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How is a vitamin D deficiency diagnosed?
According to the Vitamin D council, a blood test is the only accurate way to test for a vitamin D deficiency. There are three ways that you can have your vitamin D tested:
- Asking for the test at a doctor’s office: Ask your doctor to specifically give you the 25(OH)D blood test. There is another test called the 1,25(OH)2D test but the 25(OH)D is the only way to test whether or not you are getting enough vitamin D. You may want to check with your insurance to see if you are covered for this test prior to going in.
- Ordering an at-home blood test: The Vitamin D council has very good information, as well as an at home test that you can purchase and take in the privacy and comfort of your home. In-home tests are easy to use and involve you pricking your finger to get a small blood sample. You then send your test to a laboratory for results. One kit costs $50 USD and a test kit with 4 tests costs $180 USD. There are several other sources for order-at-home tests as well. ZRT labs, New Century Diagnostics (sells through a website called Home Health Testing), and City Assays (based in the UK but tests are only around $48USD or £25 and take approximately 10 days to ship to the US).
- Ordering a test from a website and have your bloodwork done at a lab: There are a few websites recommended by the Vitamin D council where you can bypass your physician and go straight to a testing lab: mymedlab.com, healthcheckusa.com, and privatemedlabs.com. All of these companies sell the 25(OH)D test. The price of these is a bit higher than the order-at-home blood test.
What is considered a good level for vitamin D?
According to Dr. Thomas, author of The Lupus Encyclopedia and featured in our Lupus Secrets Blog, a good level for vitamin D is 30ng/ml if on steroids, although he states that a Johns Hopkins study suggests around 40ng/ml.
*To reach and maintain the Vitamin D Council’s recommended levels of 50 ng/ml, a daily dosage of 5,000 IU/day of vitamin D supplement would be needed. To reach and stay above the 30ng/ml level recommended by the Endocrine Society, a supplement of around 2,000 IU/day would be advised. To read more on this and other guidelines for reaching certain levels of vitamin D, please visit http://www.vitamindcouncil.org/further-topics/i-tested-my-vitamin-d-level-what-do-my-results-mean/.
IMPORTANT NOTE: Nobody with lupus should attempt to take high doses of vitamin D to control their disease activity, and as always, please speak with your treating physician before starting or stopping any medication or supplement. There is no study as to the long term effects of high dosages of vitamin D. Currently the recommended daily allowance is 600IU a day until age 70, please consult with your physician before taking more than the recommended daily allowance.
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The answer is yes. Here are a several groups of people who are more likely to develop this deficiency:
- People with darker skin tones: Melanin protects the skin from UV rays. People with darker skin have more melanin and therefore absorb fewer UV rays. This means that people with more melanin make vitamin D much more slowly than those with lighter skin after sun exposure.
- People who spend a lot of time indoors during the day: Naturally, these people will have the least amount of UV exposure.
- The elderly: With thinner skin, the ability to produce vitamin D is reduced.
- Infants who are breastfed and not given a vitamin D supplement: If the mother takes a supplement, this can help.
- People who cover their skin all of the time or wear sunscreen to block out UV rays: This often includes many lupus patients who suffer from photosensitivity and need to avoid UV rays. Wearing sunscreen is still recommended but can limit your body’s ability to produce vitamin D.
- People who live in the Northern US, Canada or other locations in the upper Northern hemisphere: This has to do with the reduced number of hours of sunlight as you get further from the equator.
- During times of year where there is less sunlight (winter, for example): Interestingly, lupus patients often suffer higher incidence of flares during these months as well.
- Women who are pregnant
- People who are very overweight or obese
There are only three ways to get vitamin D:
- By exposing the bare skin to the sun
- By taking supplements
- Dietary intake
Vitamin D has long been known as the “sunshine vitamin” because it is produced by the body in response to ultraviolet light exposure from the sun. Therefore, exposure to sunlight is one way to get more vitamin D, with 20-25 minutes per day being a helpful amount to affect your vitamin D levels positively. If you have photosensitivity or live in a climate with less available sunshine, this may not be an option for you. Ultraviolet lamps and bulbs are also available for indoor use.
Vitamin D supplements are commonly prescribed to raise vitamin D levels. With supplements dosage can be controlled to meet the individual’s needs. Please speak with your doctor about finding the right dosage of vitamin D supplements for you. And do not begin taking any supplements without first speaking to your physician. If you are taking too much vitamin D you may get hypercalcemia and begin experience feeling sick, loss of appetite, being thirsty, frequent urination, pain in the abdomen, muscle pain or weakness, fatigue and/or confusion. Special care should be taken when taking vitamin D supplements for those who have the following conditions:
- Kidney disease
- Kidney stones
- Liver disease
- High blood calcium levels
- Hodgkin’s or non-Hodgkin’s lymphoma
- Granulomatous disease
- Hormonal disease
- If you are taking certain medications: This can include high blood pressure medications, medications for irregular heartbeat, and other drugs that may interfere with vitamin D and may require more than the usual dosage of vitamin D. Let your doctor know all medications and supplements that you are currently taking.
Vitamin D can also be found in certain foods as well. Some foods that contain high amounts of vitamin D are fatty fish (such as mackerel, trout, salmon, tuna and eel) and fish oils, egg yolks, cheese, fortified– meaning vitamin D has been added- cow’s milk (contains 100 IU’s in one 8 ounce glass), fortified cereals, fortified orange juice, and beef liver.
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While the research is certainly interesting and even promising, there is no conclusive research that shows that low vitamin D levels cause lupus nor can the physiological and clinical significance be confirmed. It is also difficult for researchers to determine whether low levels of vitamin D cause lupus or whether the lupus causes the low levels of vitamin D. Overall, more research and experimentation is needed to determine a more clear answer about the helpfulness of vitamin D to help manage and treat lupus.
What we do know is that, given its relative safety in combination with the beneficial effects on the immune system, there is optimism that correcting a vitamin D deficiency in patients with SLE may lead to better outcomes for those patients. We will keep reading and watching for any developing studies and information on this topic and, as always, keep you informed.
Sources: http://www.medscape.com/, http://www.medpagetoday.com/, http://www.vitamindcouncil.org/, http://www.webmd.com/lupus/news/, http://www.webmd.com/, http://www.health.com/
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**All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.