OT: Your Data about your body

This is a fascinating TED talk about keeping simple data about your body and health and what it can do for you.

Now, what is it, if you had a thyroid problem and you went to the doctor, your doctor would actually test the amount of thyroid stimulating hormone in your blood. Fine. But the problem with that test is it doesn't tell you how active the hormone is in your body. So you might have a lot of hormone present, but it might not be actively working to regulate your body temperature. So just by collecting your temperature every day, you get information about the condition of your thyroid. So, what if you don't want to take your temperature every day? I advocate that you do, but there are tons of other things you could take. You could take your blood pressure, you could take your weight — yeah, who's excited about taking their weight every day? (Laughter)

FWIW here's the site in question:
Ted.com

JDS74 wrote:FWIW here's the site in question:
Ted.com

There are lots of really good talks on that site.

I don't have time to watch this week. Is there a brief list of data to be kept?

I use Excel to keep track of all my lab work results, going back 10 years, it gives me a idea of what's changing and when corrections need to be made, your doctor doesn't have time or want for.

I also use it to keep track of ordering med's, and print script instructions of the doctors, and logging doctor appointments. I can use it with my computers and android tablet too. So it could even go to the doctor with me. Jim

BlackSpinner wrote:This is a fascinating TED talk about keeping simple data about your body and health and what it can do for you.

I record and track of a bunch of stats every morning after waking but for some reason never even thought of recording temperature. I think I'll start doing this too just to see what I learn. Thanks for the link.

The problem with becoming an expert in your own data is finding a doctor willing to listen and to become a health partner as opposed to the only and final authority. I also find that summarizing the data in a way that the doctor knows how to respond is very tricky. None will mine the raw data with you so you have to become a medical expert in multiple fields to make a decent contribution. Maybe more on-line forums like this one can help close the gap? The base technology exists but the expert systems to collate and analyze the data seems so far away ...

A problem that doctors have is the number of patients they see and the number of times they see each patient.
They don't have the time to review your complete medical record each time they see you.
So, they have to go on the snapshot of the office exam, the office conversation, and the current medical test that you just had.

What the don't see is long term trend date. This means that, for example, if you have had several complete blood counts (CBC's) over the past few years and your mean corpuscular volume (MCV - a measure of how large your red blood cells are) has been gradually creeping up from 75 to 99 over that time, your doctor will see it as close to the normal range (he sees the latest 99 and normal range is 79-97) and conclude all is fine. But a trend like that is worth a closer look.

What you need to do is put the data in a form that is easily grasped so your doctor can readily see any embedded trends.
I have been tracking my apnea data daily since getting my new ASV machine last fall. Every day I track PTB%, AHI, RR, Vt and a couple of others. I create monthly graphs and summary graphs based on the monthly averages.

My sleep doctor finds it interesting that my number had a good trend down from October to April and then trend up since then. He's thinking about what the cause could be. We no longer spend time on the "how do you feel in the morning" dance but looking at the detail and summary data to see what is going on.

Because of the data from my Auto BiPap machine I used previously, he and I on the same day came to the conclusion that an over night ASV titration sleep study would be useful. Had the study, got the results, ordered the machine, and filed for reimbursement - just like clockwork.

That's one of the underlying reasons that people on this board hammer endlessly on getting a full data machine. Without that, its really hard to be engaged with your doctor. Same thing for lab work and other tests.

Get good data, organize it so it is readable and you can get your doctor engaged. You'll get better health care as a result.

SleepWrangler wrote:

BlackSpinner wrote:This is a fascinating TED talk about keeping simple data about your body and health and what it can do for you.

I record and track of a bunch of stats every morning after waking but for some reason never even thought of recording temperature. I think I'll start doing this too just to see what I learn. Thanks for the link.

.

You will need a special thermometer called a basal thermometer. It is what we use to track fertility, it shows very fine differences. You take your temperature before you get up in the morning, before moving around. You can get it in the pharmacy.

I have a database that I use to track my sleep and blood pressure info as it is clear to me that I need a combo of medication AND cpap to keep my blood pressure down. And a bad trend in sleep can send my blood pressure back up, even with the medication.

So, I have a chart that shows the date, time of reading (I usually take a few during the day), an explanation (before work, after work, day off, etc). blood pressure readings, number of hours slept, number of hours on cpap (I am not 100% and this affects my data), and my opinion of how I slept (excellent, great, good, bad, crap). When i print off the database to show my doctor, I use a highlighter to mark all good blood pressure readings, so it is easy to see a trend in good or bad.

I can also show that a spike in blood pressure is usually related to a spike in bad sleep.

Here is my summary graphs. All the underlying detail is recorded daily.

Month 1 is October 2013
Just an example of data presentation your doctor can see quickly.

I keep an electronic diary in my smartphone where I record lots of health stuff, along with when I eat, when I take meds, bathroom stops, stats when I visit a dr (weight, blood pressure, pulse), blood sugar levels. Also entries about my condition, how I am feeling, what I am feeling, problems or things that have cleared up etc..

Having is a refresher of what has been happening and occasionally helps be recall how and what I was doing when something occurred. Not that I give it to a Dr to browse through, but if they ask about certain periods I can give them actual info that was recorded at that time.

Very useful over time. Can give you a clue about certain issues you might have and what might be causing them.