AutoimmuneGal: Vitamin D

Showing posts with label Vitamin D. Show all posts

Tuesday, August 6, 2013

Update: Vitamin D Yo-Yo

A little over a month ago I wrote about the drop in my Vitamin D levels and wanted to update my wonderful readers on recent developments. The basic story is that my doctor had suggested that I try reducing my D dose from 50,000 IU a week prescription to the daily recommended dose. This ended up being a mistake.

When I reminded my doctor to recheck my levels, they were low. (Yes, I had to remind my doctor to check.) As a result, I had to go right back on to the 50,000 weekly dose. It was a game of Vitamin D Yo-Yo.

The critical question is whether I'm feeling any different now that I have been on the higher dose for about six weeks? The answer, I am happy to report, is YES. I'm not sure I realized how badly I had been feeling over the last few months, particularly how severe my fatigue had been. From comments on my blog and Facebook, I know that others with autoimmune disease have had this experience too.

Even though it seems odd from something so simple, I clearly have more energy and stamina. I've actually surprised myself in being able to partake in a few activities that were a bit more than I thought that I could do. I went hiking. Granted it was a short hike, listed as easy and perfect for children, but that's just about the right speed for me. There was still the going down and then climbing up from the waterfall, which were a challenge. Yes, did I mention that I got to see a beautiful waterfall (pictured below). That was a bit of magic for me.

Since re-upping Vitamin D, some of my autoimmune symptoms seem to be slightly more tame as well. The new neuropathy that had developed in my feet a few months ago is less of a problem as is my joint pain and swelling. While I realize some of this could be chance and that I am just having a lull in disease activity, the fact that I am able to spend less time in bed and more time with family and friends is enough evidence for me that keeping my Vitamin D levels within normal range is important for how I feel. It would be hard for me to believe that the timing is purely coincidental and taking a prescription Vitamin is much easier to swallow than some of my other medications.

Tuesday, June 25, 2013

The Vitamin D Drops

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It seems almost every week I read a new article about the importance of vitamin D in protecting against autoimmune disease and preventing its progression for those who have it. A straight forward discussion of some these findings can be found here.

I've heard from many of my fellow bloggers and readers that when they were diagnosed with autoimmune disease, their vitamin D levels were low. The same was true for me. One of my doctors suggested a couple months ago that I try to move from taking 50,000 IU of D once a week to supplementation of 2,000 IU daily. A huge difference of 36,000 IU weekly. I figured this would be an experiment--a vitamin D challenge of sorts to see if my levels could stay within normal range.

Last week's doctor's appointment was the moment of truth. And it turns out that my D levels have plummeted since changing my dosage. As a result, I'm back up to 50,000 IU weekly, at least for the next 12 weeks.

What is particularly interesting is that over the last month, I noticed my energy levels had dropped and my brain fog was more apparent. I was definitely spending more time resting trying to fight that intense autoimmune fatigue. I'm wondering if there's a relationship here -- did lower vitamin D lead to more Sjogren's symptoms for me? It also left me thinking whether there is something about autoimmune disease that makes it difficult to metabolize or absorb Vitamin D, leading to the need for higher supplementation. But this is of course a question for the research physicians and scientists out there.

It is true that I don't spend much time in the sun and when I do, I always wear sunblock to prevent evil flares. However, I was still taking more than twice the Institute of Medicine's current daily recommended dosage as shown below in this chart from the National Institutes of Health Vitamin D fact sheet.

Table 2: Recommended Dietary Allowances (RDAs) for Vitamin D

Age	Male	Female	Pregnancy	Lactation
0–12 months*	400 IU (10 mcg)	400 IU (10 mcg)
1–13 years	600 IU (15 mcg)	600 IU (15 mcg)
14–18 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg
19–50 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)
51–70 years	600 IU (15 mcg)	600 IU (15 mcg)
>70 years	800 IU (20 mcg)	800 IU (20 mcg)

I now know that regular supplementation even with a conscious effort to eat foods high in D like fatty fish just doesn't cut it for me. I'll have to see what my doctor suggests in three months to try and keep these levels normal.

Have you noticed a relationship between your autoimmune symptoms and vitamin D levels?

Friday, December 7, 2012

Sjogren’s, Vitamin-D, Neuropathy, and Lymphoma

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Those of you who follow me on twitter (@autoimmunegal) know that I am always tweeting health and medical research studies on autoimmune diseases. Yes, that may make me a little bit of a nerd, but that is OK with me. Along those lines, I recently came across an interesting study (thanks to a tweet from the Sjogren’s Society of Canada) that I thought was very important to share. This study from the Journal of Autoimmunity found a link between primary Sjogren’s Syndrome (pSS) patients with low vitamin-D levels having peripheral neuropathy and having lymphoma.

It is important to mention that this research is the first to find a relationship between low vitamin-D and the risk of lymphoma for those with Sjogren's. There have also been very few studies to date examining vitamin-D levels and their impact on Sjogren's patients. The authors write with regard to neuropathy that “vitamin-D deficiency may be a component in the pathogenesis of neuropathy in pSS.” They then conclude that their research “may warrant the need for a tighter monitoring of vitamin-D among patients with pSS." You can see the article's abstract by clicking here.

Low vitamin-D levels have been correlated with autoimmunity in some studies. In addition, vitamin-D has been found to have a protective effect in preventing the development of AI diseases such as lupus, rheumatoid arthritis, autoimmune thyroiditis, and Type 1 diabetes. Some studies have even shown that higher levels of vitamin-D are associated with decreased cancer risk including for non-Hodgkin’s Lymphoma, but as is often the case with scientific research there have been conflicting studies and controversy in this area. Basically vitamin-D seems to be powerful stuff.

When I was diagnosed with Sjogren’s almost two years ago, I was found to have both low vitamin-D levels and severe neuropathy. This study might shed some light on patients like me and serves as big reminder that I best keep taking my vitamin-D supplement. I take a daily over the counter supplement and I do try to have foods high in vitamin-D a few times a week, but that doesn't always raise my vitamin-D level high enough. When my levels are low, my doctor usually prescribes a 12 week course of 50,000 IU of D3 once a week. That usually does the trick to get my vitamin-D in normal range.

The results of this study certainly gives me and others with Sjogren’s MAJOR reasons (lymphoma and neuropathy) to talk to our doctors about vitamin-D and take our supplements if they recommend it. I actually haven’t had my vitamin-D levels (a simple blood test) checked in some time so that will be added to the list to discuss for my next rheumatology appointment in a couple months. If you want to read more about vitamin-D and autoimmune diseases, check out some of the links I listed below (please feel free to add your own as this list is far from comprehensive). To learn more about lymphoma and Sjogren’s, click on this link to a recent post from Julia’s blog Reasonably Well on the topic.

Were your levels of vitamin-D low when you were diagnosed with autoimmune disease? By the way, make sure to talk your doctor before making any changes to your vitamin supplements.