If you move the decimal point on mg. you get ng, I think it's 6 places but I'd have to look it up. 50,000 units of Vitamin D is 2.5 mg.
I am going to keep tabs on this forum regarding the discussion of vitamin D and hope I can contribute useful information. Although 2/3rds of America have levels less than 32 ng., it is interesting that several people have commented about really low levels in ALS.
Although 2000 units is widely mentioned as a dose, how can anyone possibly know how much to take without a level? Studies have shown that 2000 units frequently isn't enough. The LOWEST normal level is 32 ng., but just like the HIGHEST normal cholesterol level in 1978 was considered 250 mg. by the medical authorities, they are once again wrong. Labcorp recognizes the normal level as 32 ng. to 100 ng. Male lifeguards at the end of the summer have levels near 150 ng., and not coincidentally that is the highest level the human being can have based on sunlight alone, without supplemental vitamin D.
With very low levels, either OTC Vitamin D3 or prescription vitamin D2 can be taken (D3 is the identical molecule that the sun makes, D2 is the vitamin D in plants. I have tested 1700 people with 25-hydroxy vitamin D level. 2/3rds are low; I haven't tested anyone with ALS (fortunately it is an uncommon disease), but those with cancer and lupus and rheumatoid arthritis and MS tend to be very low, not just low. By the way, 2 patients, women, who walk outside 6 miles and 2 miles respectively, had levels of 105 ng. without taking vitamin D. So that is why it is necessary to get a level and follow up levels. Noone would reasonably suggest that someone take a statin drug for cholesterol without getting a cholesterol level.
I have treated people with 50,000 units of vitamin D2 a week, which is 7000 units a day. However I have gotten follow up levels in 6 months initially to make sure it didn't get too high; it never has. D3 is not available over 1000 units in most drug stores. Some vitamin stores have it at higher doses. 5000 units is available by several companies. Solgar is the one I've seen the most (it is a non-public company and I have no interest in a particular company, other companies would be just as good.) Some stores carry 2000 units but not 5000 units but will take special orders. Where I go 120 capsules of 5000 units Vitamin D3 by Solgar is less than $20.00. That's $5 a month at a dose of 5000 units a day. That dose is 35,000 units a week. I have repeated blood levels in 6 months to make sure it's high enough, as I said it's never been too high. Occasionally people have required higher doses temporarily, but that has to be done with follow up levels. As far as toxicity, it is necesssary to reach a level of 200 ng. to get side effects. That requires 75,000 units a week for over 8 months to reach that kind of level. Noone would recommend a dose like that without getting folow up levels. Some recent doses have given very high doses for a period of 3 months to "jumpstart" the level.
Although prospective studies on Vitamin D and ALS are needed, I am not optomistic that will happen soon. Insufficient studies have been done with cancer and autoimmune diseases. However it is known with 100% certainty that correction of vitamin D to levels over 40 ng. increases bone strenght and prevents osteoporosis and fractures. Levels of 52 ng. have been shown to have a lower incidence of breast cancer. Some experts recommend a dose of 50 to 80 ng. and certainly in a serious disease with ALS it would be reasonable to have that level as a goal. Remember, if you go to the beach in August, you will see lifeguards with levels of 150 ng. Anyone who suggests a level of 50 to 80 is too high is saying something that goes against all research that has been done.
So it is extremely reasonable advice to say that anyone with ALS should test their 250hydroxyvitamin D level and treat any insufficiency. Goal would be to reach an ideal level in 6 monhts. (the blood test is covered by insurance that covers blood tests, and is a simple non-fasting test.)
Robert Baker, MD
Primary Care Internal Medicine