Biotin, MS, and the “H” factor

blurry picture of a woman with long hair

Biotin, or vitamin B7, is also known as vitamin H, because of its benefits to skin and hair (in German, Haar (hair) and Haut (skin)–biotin was discovered by a German researcher). It is often included in beauty products intended for hair, skin and nails.

A much talked-about recent study, published in early 2015 by a group of French researchers, seems to show that there is some relationship between very high doses of biotin and relief from symptoms among patients with Primary and Secondary Progressive Multiple Sclerosis (PPMS and PSMS). In progressive MS, unlike Relapsing Remitting MS (RRMS), setbacks are generally not followed by a period of recovery and better health. Degradation in progressive MS is cumulative and usually permanent.

Biotin, which is known to help in cell growth, the production of fatty acids and the metabolism of fats, is found in a number of foods, including peanuts, chard, kale, and liver.[1]  In the study, the researchers used extremely high doses of the drug, in levels not possible to be had in normal food intake.

The USDA “recommended” dose of biotin is 30 micrograms. Biotin is water soluble, so it doesn’t get stored in your body like a fat-soluble vitamin would – because of that, it is difficult to get too much of it. In fact, biotin deficiencies are quite rare, although it is unclear what role it actually plays in the body other than to help “process energy and transporting carbon dioxide from your body’s cells.”[2] It is also thought to play a role in controlling blood sugar levels,[3] and assisting in the relief of nerve pain.

I have seen a few pro-biotin beauty blogs where the author claims to be taking 300 milligrams, abbreviated “mg,” of biotin, which is pretty unlikely. The highest over-the-counter dose of biotin that I’ve been able to find is 10,000 micrograms, abbreviated “µg,” or “mcg” which is only 10 mg of biotin. (one beauty blogger showed the bottle and it clearly said 300 µg .) The MS study gave patients doses between 100 and 600 mg per day, which means between 10 and 60 pills daily at the highest over-the-counter strength.

There are some sources on the internet that warn about taking too much biotin, such as this blog entry from the Huffington Post. High levels of biotin can cause an extremely rare condition, eosinophilic pleuropericardial effusion, of which there has been one known case.[4] For the most part, biotin is considered safe, as any excess will be voided in urine. And there is no doubt, at least among shampoo companies, that biotin is an essential vitamin for hair growth.

So, back to the French study. This group of 23 patients, all of whom were already in poor health were given beaucoup biotin. The study experimented with doses between 100 to 600 MILLIGRAMS, which, since the recommended dose is 30 µg, or 0.03 milligrams, is a far cry from “normal.” The top dose in the study is a whopping 600,000 µg. The short story? People on the study got better. They regained vision from what had formerly thought to be permanent damage to the optic nerve from the common MS companion, optic neuritis. They regained mobility. Their EDSS assessments improved. This result, was quite frankly, surprising in the best possible way.

Here is a link to the actual study.

If you don’t want to read the medical lingo here is one post, describing the results of the study in layperson’s terms. The previous link also mentions a former study that showed lower levels of biotin in the cerebrospinal fluid of patients with MS and epilepsy.

If that last statement has you saying “what! CCSVI (chronic cerebrospinal venous insufficiency) might have something to do with that,” here is a blog post that discusses the biotin study from as CCSVI perspective.

I took a copy of the published study to my doctor, thinking she might read it . . . someday. To my surprise she sat down and read it on the spot, with her reading punctuated by murmurings of “wow” or “that’s incredible.” She paged back and forth for a while, finished the study looked me in the eye and asked “you want to try it? Biotin can’t do you any harm, and from what this says, it might help.”

I was a bit flabbergasted, but, since I was secretly hoping for her to agree that I try a mega dose, I was delighted to say yes. We settled on one 100 mg tablet, taken three times a day to get to the optimum dose suggested by the study, 300mg.

I’m on my third month of this dose of biotin. I don’t have the primary progressive form of MS, but rather the relaspsing-remitting. I think it’s making a difference. My balance is better, my stamina is better, and I am feeling a bit less ropey after a difficult summer in which the a/c conked out in my work office.

My previous post was on hair care, and more than you ever wanted to know about the history of my hair and my exploration of gluten-free hair products. On my last visit to the stylist, she kept messing around with the hair on top of my head. Again and again, pulling it up, snipping it, then pulling it up again, without snipping. As I had my glasses off, I couldn’t see much, but since she was doing this odd thing, I, tactful as ever, said “what the heck are you doing?”

She, who has been doing my hair for the past 10 years, said “you have an incredible amount of new growth up here.” I put on my glasses. She did the pulling thing again. “You can see where I just cut it,” she said. “All the hair that’s shorter is new growth.” There was a lot of it. I think the word “shitload” was mentioned rather than “incredible amount.” (Not by me, gentle reader. I just said the first half of that s-word.)

Without a doubt, I have new hair. There is still a thin area in front, but it’s filling in. There’s a postscript to the story, but I’ll save that for a future post. Until then, I’m taking my biotin like it’s a new religion.

Oh, and as the way with these things pharmaceutical, one of the study authors is patenting this dose. That’s right, biotin, a substance that’s been known about since 1936, is being patented.

Here’s the patent application. More on that later. I’m going to go watch my hair grow.

[1] https://en.wikipedia.org/wiki/Biotin

[2] http://www.huffingtonpost.com/2015/08/05/biotin-hair-skin-nails_n_4016804.html

[3] Most accounts seem to agree that biotin helps lower blood sugar levels in combination with chromium. http://www.biotin.com/diabetes/biotin-can-help-lower-blood-sugar-and-treat-neuropathy-in-diabetics

[4] http://www.livestrong.com/article/353466-side-effects-of-biotin-5000-mg/

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