Need help troubleshooting Vit D problem
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Need help troubleshooting Vit D problem
Hi, everyone - hope you all had a great weekend.
I had a Vit D test done and it came back a 16 (ouch!). It was't a huge surprise since none of my safe foods contain any, so obviously I needed to try supplements. My first try was a Now brand D3 drop, the only ingredient other than D being medium chain triglyceride oil. A few minutes after taking it I had a strange tingling/burning sensation on the tip of my tongue and itchiness around the outer edges of my lips that lasted for several hours. I thought maybe I had a problem with the MCT oil, so I bought Nature's Answer brand, which is just the D3 in a base of extra virgin olive oil. I have EVOO daily as my only safe oil to use, so I assumed that would be fine, but when I tried it I got the exact same reaction. It's as if my problem is with the D itself. I did find out that both brands use D3 sourced from lanolin, and I was able to find a couple of posts online from people with wool allergies who have trouble with the lanolin D3, but if I have a wool allergy it's news to me. I don't currently have any wool in the house to test myself with, but before I had my boys I used to knit quite a bit, often with wool and had no problems. Of course, I know I could have developed an allergy since then.
My next step was to do some controlled sun bathing. I got the D-Minder app, which helps determine the best time of day to get the most D in the smallest amount of time (I have very fair skin and can't be out for more than 10 minutes at a time), and tried this over the last 4 days. The first two days were completely overcast and drizzly, so I didn't get much. The last two days were better, about 50% direct sunshine vs cloud cover, but about an hour after coming inside yesterday (after 7 minutes out) I noticed I was mildly itchy all over and feeling nauseous, and not long after that my entire stomach broke out in tiny, red bumps that were furiously itchy. Eighteen hours later the rash is mostly faded, but I'm still itching like mad. Obviously sun bathing is out . It probably wasn't a great plan anyway with the full heat of a Texas summer right around the corner, but I'm pretty eager (desperate) to get my D level up.
The only other type of D3 I'm aware of is sourced from fish liver oil, usually cod. I have been nervous about going that route because of the high amount of Vitamin A that is often involved, and with my trigger happy mast cells I don't know if something sourced from fish is a great idea for me. If all else fails, is there any value at all in taking D2? I'm not confident my body would actually absorb and use it, given all of my issues.
Any advice would be greatly appreciated - I am feeling extremely frustrated and defeated right now, which I know is counterproductive.
I had a Vit D test done and it came back a 16 (ouch!). It was't a huge surprise since none of my safe foods contain any, so obviously I needed to try supplements. My first try was a Now brand D3 drop, the only ingredient other than D being medium chain triglyceride oil. A few minutes after taking it I had a strange tingling/burning sensation on the tip of my tongue and itchiness around the outer edges of my lips that lasted for several hours. I thought maybe I had a problem with the MCT oil, so I bought Nature's Answer brand, which is just the D3 in a base of extra virgin olive oil. I have EVOO daily as my only safe oil to use, so I assumed that would be fine, but when I tried it I got the exact same reaction. It's as if my problem is with the D itself. I did find out that both brands use D3 sourced from lanolin, and I was able to find a couple of posts online from people with wool allergies who have trouble with the lanolin D3, but if I have a wool allergy it's news to me. I don't currently have any wool in the house to test myself with, but before I had my boys I used to knit quite a bit, often with wool and had no problems. Of course, I know I could have developed an allergy since then.
My next step was to do some controlled sun bathing. I got the D-Minder app, which helps determine the best time of day to get the most D in the smallest amount of time (I have very fair skin and can't be out for more than 10 minutes at a time), and tried this over the last 4 days. The first two days were completely overcast and drizzly, so I didn't get much. The last two days were better, about 50% direct sunshine vs cloud cover, but about an hour after coming inside yesterday (after 7 minutes out) I noticed I was mildly itchy all over and feeling nauseous, and not long after that my entire stomach broke out in tiny, red bumps that were furiously itchy. Eighteen hours later the rash is mostly faded, but I'm still itching like mad. Obviously sun bathing is out . It probably wasn't a great plan anyway with the full heat of a Texas summer right around the corner, but I'm pretty eager (desperate) to get my D level up.
The only other type of D3 I'm aware of is sourced from fish liver oil, usually cod. I have been nervous about going that route because of the high amount of Vitamin A that is often involved, and with my trigger happy mast cells I don't know if something sourced from fish is a great idea for me. If all else fails, is there any value at all in taking D2? I'm not confident my body would actually absorb and use it, given all of my issues.
Any advice would be greatly appreciated - I am feeling extremely frustrated and defeated right now, which I know is counterproductive.
Hmmmmm. You've described quite a dilemma. Apparently you have a mast cell issue that causes urticaria (rash) from sunlight exposure. That's not a common problem, but several members here have to deal with it, also. It's best to not provoke the urticaria, because it can become a chronic problem that can be extremely difficult to deal with. I've forgotten whether you're the member who has had problems tolerating antihistamines, but if you can tolerate antihistamines, they will help to subdue the rash. If the regular labeled dose doesn't seem to help, immunologists prescribe up to 4 times the labeled dose in cases where the rash is persistent or refractory, but I wouldn't use more than that.
To resolve the vitamin D deficiency, I suggest you tackle the problem by using (as you suggested) vitamin D2. All prescription vitamin D is D2. Vitamin D2 (ergocalciferol) is produced from ergosterol found in yeast or mushrooms. Hopefully, you won't be sensitive to it.
Why prescription vitamin D is in the form of D2, is a mystery (since as you pointed out, D3 is much more effective). At any rate, it will work to raise your vitamin D level — it just takes more of it to get the job done. D2 is roughly 20 – 40 % as effective as D3, for raising blood levels of 25(OH)D. Typically, D2 is administered by single weekly doses of 50,000 IU, either in oral or injectable form, for 8 weeks, at which point your blood level should be tested again. Or you could just drop the dose to once every other week, and continue to use that rate indefinitely. Obviously the injectable administration gets around the malabsorption problem associated with IBDs.
A sublingual lozenge would also bypass a malabsorption problem, and allow the vitamin to be absorbed directly into the bloodstream, by dissolving it under the tongue, but while sublingual D3 lozenges are available, I would be surprised if D2 is available in this form. Still, it might pay to ask your doctor when you get the script, just in case it is available. It would be more convenient than going in for a shot each week (unless you self-administer the injections).
FWIW, I've been taking 5,500 IU daily (of D3) since early last fall (7,500 IU during December and January), and I did a test last week that showed a 25(OH)D level of 95 ng/mL. My previous test (1 year ago) showed 55 ng/mL, so I've decided to drop down to 3,500 IU until fall weather begins again.
There's almost always another way to skin the proverbial cat. Good luck with this, and please keep us updated.
Tex
To resolve the vitamin D deficiency, I suggest you tackle the problem by using (as you suggested) vitamin D2. All prescription vitamin D is D2. Vitamin D2 (ergocalciferol) is produced from ergosterol found in yeast or mushrooms. Hopefully, you won't be sensitive to it.
Why prescription vitamin D is in the form of D2, is a mystery (since as you pointed out, D3 is much more effective). At any rate, it will work to raise your vitamin D level — it just takes more of it to get the job done. D2 is roughly 20 – 40 % as effective as D3, for raising blood levels of 25(OH)D. Typically, D2 is administered by single weekly doses of 50,000 IU, either in oral or injectable form, for 8 weeks, at which point your blood level should be tested again. Or you could just drop the dose to once every other week, and continue to use that rate indefinitely. Obviously the injectable administration gets around the malabsorption problem associated with IBDs.
A sublingual lozenge would also bypass a malabsorption problem, and allow the vitamin to be absorbed directly into the bloodstream, by dissolving it under the tongue, but while sublingual D3 lozenges are available, I would be surprised if D2 is available in this form. Still, it might pay to ask your doctor when you get the script, just in case it is available. It would be more convenient than going in for a shot each week (unless you self-administer the injections).
FWIW, I've been taking 5,500 IU daily (of D3) since early last fall (7,500 IU during December and January), and I did a test last week that showed a 25(OH)D level of 95 ng/mL. My previous test (1 year ago) showed 55 ng/mL, so I've decided to drop down to 3,500 IU until fall weather begins again.
There's almost always another way to skin the proverbial cat. Good luck with this, and please keep us updated.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thank you for the wisdom, Tex. When I am ready I will try a D2 and pray, pray, pray!
I am pretty much intolerant to the H1 blockers, but take 40mg a day of an H2. I don't know that it will help me to clear out the itching, but I am deeply considering going up to 80mg a day for a while. As the day has progressed I have seen a return of many GI (and other) symptoms that had been gone for months. I am nauseous, my joints and head ache badly, very rumbly tummy and bowels, and I have a dull pain in my abdomen that heightens whenever I eat. Even my heart has joined the party, which is never good.
It never ceases to amaze me how sensitive our systems can be, and what a price we have to pay sometimes for our mistakes.
I am pretty much intolerant to the H1 blockers, but take 40mg a day of an H2. I don't know that it will help me to clear out the itching, but I am deeply considering going up to 80mg a day for a while. As the day has progressed I have seen a return of many GI (and other) symptoms that had been gone for months. I am nauseous, my joints and head ache badly, very rumbly tummy and bowels, and I have a dull pain in my abdomen that heightens whenever I eat. Even my heart has joined the party, which is never good.
It never ceases to amaze me how sensitive our systems can be, and what a price we have to pay sometimes for our mistakes.
Hi Donna,
The 5,000 IU vitamin D capsules that I've been taking are from Source Naturals. I like Natures Bounty for most vitamin needs (because they have the best design available for an easy-opening seal and cap, and most of them are free of all allergens), but unfortunately their vitamin D contains soy. I'm not sensitive to soy, so I don't always avoid it in vitamins, because it's not always easy to find vitamin D that doesn't contain soy oil. I think I'm going to order some from Freeda Vitamins though, because they make a 3,000 IU tablet that's free of everything, and it's just what I need for my summer dose.
Tex
The 5,000 IU vitamin D capsules that I've been taking are from Source Naturals. I like Natures Bounty for most vitamin needs (because they have the best design available for an easy-opening seal and cap, and most of them are free of all allergens), but unfortunately their vitamin D contains soy. I'm not sensitive to soy, so I don't always avoid it in vitamins, because it's not always easy to find vitamin D that doesn't contain soy oil. I think I'm going to order some from Freeda Vitamins though, because they make a 3,000 IU tablet that's free of everything, and it's just what I need for my summer dose.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I'm extremely "allergic" to the sun due to my autoimmune disease, dermatomyositis (with lupus overlap). I too have about a 5 minute maximum before I break out in crazy red little itchy bumps. It's pure misery, and it does take more than a day to clear, if it clears. I take D3 from Source Naturals or Carlson. I also take Cod Liver Oil for my Omega 3s to avoid having to take tons of fish oil gel pills.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
I take Carlson Solar D Gems
Vit D3 & omega 3
4000 IU soft gels
No problems, order from Amazon
Vit D3 & omega 3
4000 IU soft gels
No problems, order from Amazon
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease