Towards new diagnostics

Here's a slightly old paper I found on PubMed that really captures some of my thoughts on the usefulness of amenorrhea as a criterion for anorexia.

Towards a physiologically based diagnosis of anorexia nervosa and bulimia nervosa.

Here is the abstract from the article:

Diagnosis of anorexia nervosa (AN) and bulimia nervosa (BN), while including such physiological data as weight and the reproductive status of the individual, are primarily based on questionnaires and interviews that rely on self-report of both body-related concerns and eating-related behaviors. While some key components of eating disorders are psychological and thus introspective in nature, reliance on self-report for the assessment of eating-related behaviors and nutritional status lacks the objectivity that a physiologically based measure could provide. The development of a more physiologically informed diagnosis for AN and BN would provide a more objective means of diagnosing these disorders, provide a sound physiological basis for diagnosing subclinical disorders and could also aid in monitoring the effectiveness of treatments for these disorders. Empirically supported, physiologically based methods for diagnosing AN and BN are reviewed herein as well as promising physiological measures that may potentially be used in the diagnosis of AN and BN.

I don't think any decent physician will discount a person's personal experiences; those do have meaning in treatment. But when you're confused or unaware of what's really going on, it helps to have some objectivity.

This would also show things like the level of starvation and malnutrition, which, to me, play just as much a role in eating disorders as weight and the presence of menses.


fighting_forever said...

Sounds like the writer of this paper wants to take things the opposite way to me. I think the diagnosis should be based on psychological factors not physiological ones, since this is, as pretty much all doctors/reliable sources agree, a psychiatric illness.

Katy said...

Hmm...I'm mixed on this one. One the one hand, I think looking at physiological markers could be a huge breakthrough in terms of detection when it's not visibly physically obvious weight-wise and when the person isn't honest with a doc. There was an NYTimes article recently about how even people who purge 1-3 times a month and are at a normal weight are at risk for irregular periods, so clearly even seemingly "low-level" ED behavior has hormonal effects--people who purge or restrict infrequently might perceive themselves as "fine" and not self-report, so a physiological identifier could be hugely important here.

On the other hand, bodies react differently to ED behavior. Two different people at the same level of caloric restriction won't necessarily weigh the same amount or accrue the same amount of physiological damage. At this point, blood work is a pretty unpredictable way of judging degree of illness, as far as I know--I've had labs at times when I've been really sick be absolutely fine, and labs at times when I've been equally sick be totally wonky. In the period of a week. I've been really sick with a totally regular period, reasonably okay with a totally irregular period, etc., so it doesn't seem like hormone levels would be all that useful either. Maybe there are more accurate measures at this point--I don't know, and I'm too lazy to log into my lovely university-provided all-access pass to any journal I could possibly never want and none of the ones I could possibly ever want and actually read the article, so I may be making a whole bunch of unfounded assumptions, and if I am I apologize.

It's just that I'm not sure I like the idea of basing diagnosis on physiological measures and defining degree of illness based on those measures. I agree that self-report is kind of a lousy diagnostic tool in many ways, and so maybe the answer is to try to combine the two...but I'm not sure. I think part of what I find a little worrisome about it is that it could become just another exclusionary tool, the way weight and menstruation are with anorexia. You don't have the physiological marker, ergo you are not as sick as you say you are. You still have regular periods with a BMI of zip, you're not as sick as you say you are. You're still at a "normal" BMI even though you're eating an abominably small number of calories, you're not as sick as you say you are. (To belabor the point...)

I like the idea of expanding physiological study of EDs beyond weight & period and actually looking at the full range of effects of EDs on the body, but as a diagnostic tool for a behavioral illness (whether one sees it as psychological or physical, it's manifestations are behavioral and the effects on the body are the result of that behavior) I worry that non-behavioral criteria might miss or dismiss EDs that don't have what researchers consider "typical" physiological manifestations, ESPECIALLY considering how much research is done on AN or BN but rarely EDNOS, which actually encompasses the majority of EDs.

Anyway. Just my rambling early morning thoughts while I avoid finishing a final paper, so I can only hope they make at least a little sense...

A:) said...

I would be worried about physicians typing patients as "subclinical" (weight, menses present, etc) when they are clearly struggling with a signficant eating disorder.

I know my bloodwork was always 100%fine before I went into treatment, regardless of my weight. I didn't lose my periods until a lower BMI, whereas my first hosptialization I lost them at a higher weight. I also didn't have any major nutritional deficiences, besides being very underweight. . .

Physiological data can't tell us everything. I saw many people come into treatment at normal weights and have more difficult times adjosting to a healthy lifestyle than their emaciated counterparts.

Personally, I hate ED professionals that discriminate based on BMI.


carrie said...

Okay, oops. That wasn't exactly what I meant.

There are things like looking at hair to measure how many nutrients you are taking in. There are ways to measure whether your metabolism is lower than your normal (it's scientifically valid but sounds a bit hocus pocus). You can measure growth hormones, thyroid hormones, leptin/ghrelin levels, cortisol, insulin, etc.

Because the standard labs are usually not very telling. Neither really is menstrual status. And essentially, neither is weight. I was at my sickest, mentally and physically, at a weight that wasn't 5 pounds below "normal" BMI range.

Sorry for any misunderstanding.

Katy said...

Gotcha now, Carrie. Thanks for the clarification. I do agree that physiological criteria other than weight/menses could be helpful since physical impact of EDs is so much broader than either of those criteria--I just worry that the medical/INSURANCE community might use it as the sole arbiter of illness or health. I can see though that there's especially potentially great utility in using physiological factors to identify people unable/unready/too uncomfortable to admit to an ED.

And I find BMI massively frustrating as well--and love my N partly b/c she agrees (and partly b/c she's generally awesome and normal about food) and has very clearly said to me repeatedly that if my weight was at the level prescribed as "ideal" by the 100 lbs plus 5 lbs per inch over 5 feet (plus or minus 5 lbs) formula (considered perfectly healthy BMI-wise!) she'd be ready to chuck me in the hospital b/c I'd be keeling over. (I quote, "Katy, you're dense." And I'm pretty sure she meant physically. ;-) Though the other is true too sometimes...)

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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