Seth's Blog

A few weeks ago I blogged about a leukemia doctor’s disapproval of self-experimentation (“you won’t learn anything and others won’t learn from it, either”). What I wrote was reposted at The Health Care Blog, where it elicited this comment (by “rbar”):

Sigh. Mr Roberts did it again, he simply does not (want to) understand that anecdotal evidence is of little value (let me give you an example: I self experiment with traffic signals; I noted that I can considerable cut down on travel times when ignoring red lights and stop signs; there are no drawbacks whatsoever, no one get hurts, and even my gas mileage/carbon footprint got better) .

Individuals who have similar questions as Mr. Roberts should look up the following key words, because they may understand why controlled studies are far superior to anecdotal evidence:
-placebo effect
-regression to the mean
-misattribution error [apparently rbar means error in determining the cause of a change]
-self limited conditions/natural fluctuation of chronic conditions
-and in terms of drawbacks of experimentation: primum non nocere, and also the fact that anecdotal evidence adds relatively little to humanity’s knowledge base

Does all that mean that patients should not be well informed, active and making suggestions to their treating physicians? Of course absolutely not. Being knowledgeable about one’s condition is different from self experimentation. Is that intellectually challenging?

One reply to this comment said we should be aggregating data across patients. “I believe Mr. Roberts is alluding to the power of aggregating real-world data across patients to generate insights into what may and may not work, not to giving undue weight to any single anecdotal case.” No, I was looking at it from the point of view of the self-experimenting patient. If you have a health problem, and you can measure it often (daily, weekly) you can find out what works faster than your doctor — often much faster. You can test many more possible solutions. This is what Richard Bernstein taught the whole world of diabetes, starting in the 1960s, when he pioneered home blood glucose testing. Apparently rbar also objects to that.

Rbar’s comment is dismissive (“Sigh”, “Is that intellectually challenging?”) and partly obscure (“ignoring stop signs and stoplights” — huh?).  Because patients who self-experiment may make “misattribution errors” they shouldn’t self-experiment? That’s like saying because people may make reasoning errors they shouldn’t reason.

The true meaning of rbar’s comment may be hidden in his statement that it’s okay for patients to “make suggestions to their treating physician.” Which shows who he thinks should be boss in the doctor-patient relationship. When a patient self-experiments, the doctor is no longer boss. Maybe rbar is a doctor. Maybe he feels threatened by self-experimentation. If so, I hope he’s right.

More A later reply to rbar put it well: ” Your list of possible pitfalls . . . is similar to lists I remember seeing back in graduate school in various research handbooks. I do not see how you go from the fact that these effects and errors are possible to the conclusion that the whole endeavor isn’t worthwhile.”

Bryan Castañeda, who lives in Southern California, told me this:

The law firm I work at specializes in toxic torts. We represent people who have been occupationally exposed to chemicals and are now sick, dying, or dead. Most of our clients have been exposed to benzene and developed some kind of leukemia. We sponsor various leukemia charities, walks, and other events. [On January 21, 2012] in Woodland Hills, CA, the Leukemia & Lymphoma Society held its first annual Blood Cancer Conference. Although the speakers were mainly doctors, it was a conference meant for laymen. The chair was an oncologist from UCLA Medical Center.

After introductory remarks and the keynote speaker, there were several breakout sessions. I attended a session on acute lymphoblastic leukemia and acute myeloid leukemia. The speaker was [Dr. Ravi Bhatia,] a doctor specializing in leukemia from City of Hope in Duarte, CA. His talk was almost exclusively about new drugs and clinical trials. Very dry and dull. Things got more interesting during the question period. At one point, [Dr. Bhatia] told an attendee not to experiment on his own because “you won’t learn anything and others won’t learn from it, either.”

I would have liked to ask Dr. Bhatia three questions:

1. What’s the basis for this extreme claim (“you won’t learn anything and others won’t learn from it”)? Ben Williams, a psychology professor at UC San Diego, wrote a whole book (Surviving “Terminal” Cancer, 2002) about taking an active approach when faced with a very serious disease (in his case, brain cancer). Likewise, the website Patients Like Me is devoted to (among other things) learning from the experimentation of its members. Lots of forums related to various illnesses spread what one person learns to others. MedHelp has many forums devoted to sharing knowledge.

2. What’s so bad about “learning nothing”? Why should that outcome stop one from trying to learn? It doesn’t seem like a good enough reason.

3. Do you have a bias here? In other words, what do you want? Do you prefer that your patients not self= experiment? Doctors may prefer that their patients not experiment for their (the doctors’) own selfish reasons. When a patient self-experiments, it makes their doctor’s job more complicated and makes the doctor less important. If Dr. Bhatia is biased (he wants a certain outcome), it may bias his assessment of the evidence.

I know Robin Barooah from Quantified Self meetups. When I learned he had started taking Vitamin D3 early in the morning, I asked him what happened:

I’ve been taking it since December 20. I initially thought of trying it immediately on my return from London because I thought that it might help to reduce jet lag, given its apparent coupling with the circadian rhythm.

It didn’t seem to have a dramatic effect on my jet lag – which was as bad as I usually experience it for about the same number of days (around 3-4). However it had a very pronounced effect on my general energy levels. At first I was almost hyperactive, yet my concentration was good. I was using 5000 IU per day, at 7:30 am. The hyperactive feeling subsided but the dramatic improvement of my energy levels (and increased concentration) continued until I decided to reduce the dose to 2000 or 3000 IU per day [from 5000 IU/day]. My mood has improved too, although I think indirectly though feeling more capable and productive.

I decided to reduce the dose because I was concerned that my sleep wasn’t noticeably better than before taking the D3, and might have been worse.   Reducing the dose caused a huge reduction in my energy levels and concentration, and no improvement in sleep. After a week of that I went back to the 5000 IU dose, and again am very happy with the effects. The improvement in sustained concentration is so dramatic that it’s disturbing to think of how much this could have changed my life had I been using it for years (assuming the effect lasts).

It’s possible that my sleep quality has improved in some way that isn’t reflected in my subjective experience of sleeping, and this has caused the improved energy and concentration. I am sleeping about the same length of time, and waking up in the night just as often and feeling about as rested as before I started (which is not quite as rested as I’d like to feel, despite having a lot of energy). I am not taking a multivitamin, so it’s also possible that I’m not getting all of the possible benefit.

Without doubt, this is one of the most effective things I’ve ever tried.

Emphasis added. He takes Now Foods Vitamin D3 (easy to buy on Amazon), the 5000 IU and 1000 IU softgels. He also said:

I used to get quite severe tiredness (enough to need to lie down) at numerous times during the day. Now I seem to get tired just a little in the afternoon, and then progressively so into the evening. There’s a very distinct slowdown in my energy that happens very obviously around 5pm, which is coincidentally around dusk here at the moment.

I have noticed something similar. Before Vitamin D3 early in the morning, I used to get really tired around 10 am. Enough to make me lie down. This happened on more than half of all days. Now that I am taking a lot of D3 (8000 or 10000 IU) first thing in the morning (8 or 9 am) it doesn’t happen at all. (I may eventually go down to a lower dose, such as 5000 IU/day.)

I have been getting good sleep improvement from Vitamin D3 (early in the morning) using tablets. However, Tara Grant and Paul have gotten good results with gelcaps. Apparently both formulations work. Which is better?

This story, from a woman I’ll call JMW, suggests gelcaps are better:

Sorting out all the nutrition for [celiac disease], about 3 years ago, [my two boys and I] started taking D3 – 2000 IU of Solgar in capsule form. That first winter, NO ONE had seasonal affective disorder [= depression]. I had had it since I was 21, can’t remember further back than that, the youngest had had it since he was 4 yrs old, can’t remember the others.

We unintentionally proved it needs to be in capsules (i.e. oil) rather than tablets when I mistakenly repeat-ordered with tablets, and everyone got worse until I got the capsules again.

In November, I wrote about Tara Grant (aka Primal Girl)’s discovery that taking Vitamin D first thing in the morning rather than later improved her sleep. Then several people commented that they had observed something similar — some in response to my post (my post led them to try it), some independently. Perhaps people who tested her observation and found it wasn’t true didn’t comment.

One way to assess this possibility is to ask people who have tried it what happened. In the comments to one of my posts about this, Tyler Tyssedal said he would try it. A few days ago I asked him what had happened. Here’s his reply (shortened):

I have been tweaking the timing of my Vitamin D3 intake since I made that comment [on December 13 -- one month ago]. I have also made a few other life changes (such as supplements), so the changes I’ve experienced cannot be attributed only to Vitamin D3 (5000 IU) timing. But yes, taking D3 first thing in the morning instead of later noticeably improved my sleep quality. I have been experiencing perpetual, involuntary biphasic sleep on and off for years. I would go to bed around 11 and wake up every day between 4 and 6 am, conscious enough to check the time and sigh. I had been taking my D3 with lunch or dinner, sometimes never. I changed my D3 intake to first thing in the morning. Within a week I noticed I would wake up two out of three nights, around 6 (so a little later), a marked improvement.

I am a 6’2″, 160-lb male. I live in Minneapolis, Minnesota. Desk job, lift 2-3 times per week, 45 min-1 hr per session with 15 min walking to and from gym.  I typically eat two meals a day (1-2 pm and 6-8 pm). In the morning (between 7:30 and 10am) I consume about 20-30 oz of coffee with 1-3 T cream. I also eat 1 T coconut oil with my coffee and 1 T of it with my dinner.

When I changed my 400 mg magnesium citrate supplement to early afternoon rather than right before bed, I experienced even better sleep. After all these changes, I no longer wake up in the middle of the night. I sleep straight through. A week and a half ago I started taking ALA and NALC with my D3, coconut oil and coffee in the morning. The results have been fantastic and I feel a strong clear headedness in the morning.

Here’s a summary:

WAKE (7:30-9:30am): 5000 IU D3, 500 mg acetyl l-carnitine, 250 mg alpha lipoic acid, 1 T coconut oil, 20-30 oz coffee, 1-3 T cream.

LUNCH (12-2pm): 30% food for the day, typically lowish carb, 400 mg magnesium citrate, 1.2 g EPA/DHA fish oil (on days I don’t consume sardines or salmon, which is 2-3 days a week), Vitamin K2 (1000 K2 MK4, 1000 K2 MK7).

DINNER & POST DINNER: Rest of food (100-150 g carbs post workout workout days; 50-100 g non workout days). On restless nights, 2-5 mg melatonin.

I’ve been pleased with 2-5 mg melatonin before bed on days when I am not heavy eyed by 9:30 pm. I have taken melatonin on and off for years and would still experience biphasic sleep, with or without it.