louisev
04-12-10, 07:22 AM
CAH and BMI
CAH has been around, in the medical world, for a comparatively short time: the first true breakthrough in medicine occurred in the 1940's at the Mayo Clinic with the discovery of the universal hormone, cortisol, and the first understandings in the medical community of how steroidogenesis in the human body actually works and the isolation of cortisol, the endogeneous universal hormone. Research into steroidogenesis and the discovery of the chief genetic illness that impairs steroidogenesis, 21 hydroxylase deficiency, has led to the diagnosis and treatment of the largest population of those suffering from 21-hydroxlylase deficiency, including newborn and prenatal screening for the disease. It wasn't until the 1980's, however, that appropriate treatment, particularly treatment for virilization of XX patients, and the identification of the partial enzyme deficiency (known as simple virilizing CAH), mild enzyme deficiency (known as non-classical CAH), and other disorders of the biosynthesis pathways making up the other 8-10% of CAH cases became known. And the discovery of the second-most-common variety, 11-beta hydroxylase deficiency, is still poorly documented and researched, since it affects a far smaller population. (OR SO THEY THINK.)
The problem faced by all CAH patients, whether diagnosed and treated at birth or of the simple virilizing (generally diagnosed in early childhood or adolescence) or non-classical 21 hydroxylase deficiency (identified most frequently in puberty or adulthood) is one of inadequate cortisol production, the dependency upon steroid replacement, and other adrenal impairments. According to research in the past several years, deficiencies of the adrenal steroidogenesis are accompanied by (or correlated with) major gland dysfunctions in the thyroid. A trip to the CARES site about the lifelong management of CAH discusses "the tendency to obesity" and over-dosing of steroids and its effect upon the body.
But this understanding is clouded, and medical guidelines about how to "manage one's weight" also presents a problematic picture.
Everyone knows and understands that athletes are bigger and heavier than men and women of the non-athletic population. They take supplements and do training workouts to build muscle mass, and after bone, muscle is the heaviest component of the body. What everyone does NOT know, and BLO is no exception in this - is that the virilization process caused by overproduction of adrenal androgens, builds muscle in CAH WITHOUT TRAINING. Simply walking around with excess production of adrenal androgens, produces muscle. Exercise leads to weight gain - not fat gain, WEIGHT gain. I have had this happen to me; on a 3-x week exercise regime with a strictly controlled diet - I GAINED WEIGHT.
Why? Because the under-treated or untreated CAH patient continues to build muscle regardless, as if they were on a course of anabolic steroids with very high doses.
And this means that even the most fit CAH patient, if not treated with steroids from birth and well suppressed, is going to be considerably "overweight." Not over-fat - overweight. Like NFL linebackers, or heavyweight wrestlers. And the sad truth - particularly of American society - is that doctors treat patients from traditional measurements and scales known as the Body Mass Index. Not actual body mass, which would estimate the components of bone, muscle, and fat to determine the leanness and relative overall health of the person.
In CAH, BMI is a meaningless statistic. The only accurate gauge of fitness for CAH - and I have yet to determine exactly HOW accurate, is body fat percentage.
The first time I got thin as an adult it was on an extremely low-carbohydrate diet, and I lost, according to that diet, approximately 25% of my overall body muscle mass. This is a horrific outcome for normal athletes, and the condition of consuming muscle in dieting is toxic to the liver. As a result, my 78 pound weight loss in 1985 produced a toxicity in my liver which only now, 20 years later, has crept back to normal.
But in the search for social acceptability and the ever-popular but false metric of BMI (which will never be applicable to any adult with CAH), many CAH patients will continue to restrict their diets to the point where ketosis occurs, or until the exhaustion caused by cortisol underproduction and thyroid hypofunction coincide to produce illness and physical collapse. The starvation diet that got me back on the medical charts as "normal weight", within about 9 months, ended me in the hospital - not for starvation, but it might as well have been. The starvation put a stress on the body that led to a familiar cascade reaction of allergies, viruses, and illness.
It is very important for those with CAH to do an ACCURATE assessment of their body mass, and to respect the unusual composition of their bodies as normal - FOR THEM. And to do that, it is a tape-measure measurement of five dimensions of the body goes into a mathematical algorithm to calculate Body Fat Percentage. For each individual, the measurement of several dimensions produces an individual "lean body mass" - which is the minimum the body CAN weigh with the muscle mass present. Muscle may weigh far more than fat, but it takes up considerably less space.
The most thorough algorithm I have found is here:
http://www.bmi-calculator.net/body-fat-calculator/body-fat-formula.php
Factor 1 Total Body Weight x .732 + 8.987
Factor 2 Wrist measurement (at fullest point) / 3.140
Factor 3 Waist measurement (at navel) x 0.157
Factor 4 Hip measurement (at fullest point) x 0.249
Factor 5 Forearm measurement (at fullest point) x 0.434
Lean Body Mass: Factor 1 + Factor 2 - Factor 3 - Factor 4 + Factor 5 LBM
Body fat weight: Total body weight - Lean Body Mass
Body Fat Percentage: Body Fat Weight x 100 / total body weight
On this calculation, my body fat percentage is 23.83. It also tells me what my range of "normal weight" should be based upon my own body composition, which is not the same as the body composition of XX who are non-CAH.
Since I am an adult who was never treated for CAH before the age of 50, the accurate calculation of body fat allows me to set a REASONABLE expectation of how much additional weight loss I should try for without a starvation plan to throw my body into liver-threatening ketosis. And how much fat I need to lose is within a narrow range: females are generally said to have an "acceptable" body fat range between 14% and 31%, 14% being the minimum to keep essential body fat for human health. If I would like to return to "athletic" rather than starve the muscle off my body to get 14% body fat, I will need to exercise it off, understanding that now that I am taking steroid replacement therapy, I will not be building muscle at the insane rates I have always done in the past, and I may lose some in the process.
CAH has been around, in the medical world, for a comparatively short time: the first true breakthrough in medicine occurred in the 1940's at the Mayo Clinic with the discovery of the universal hormone, cortisol, and the first understandings in the medical community of how steroidogenesis in the human body actually works and the isolation of cortisol, the endogeneous universal hormone. Research into steroidogenesis and the discovery of the chief genetic illness that impairs steroidogenesis, 21 hydroxylase deficiency, has led to the diagnosis and treatment of the largest population of those suffering from 21-hydroxlylase deficiency, including newborn and prenatal screening for the disease. It wasn't until the 1980's, however, that appropriate treatment, particularly treatment for virilization of XX patients, and the identification of the partial enzyme deficiency (known as simple virilizing CAH), mild enzyme deficiency (known as non-classical CAH), and other disorders of the biosynthesis pathways making up the other 8-10% of CAH cases became known. And the discovery of the second-most-common variety, 11-beta hydroxylase deficiency, is still poorly documented and researched, since it affects a far smaller population. (OR SO THEY THINK.)
The problem faced by all CAH patients, whether diagnosed and treated at birth or of the simple virilizing (generally diagnosed in early childhood or adolescence) or non-classical 21 hydroxylase deficiency (identified most frequently in puberty or adulthood) is one of inadequate cortisol production, the dependency upon steroid replacement, and other adrenal impairments. According to research in the past several years, deficiencies of the adrenal steroidogenesis are accompanied by (or correlated with) major gland dysfunctions in the thyroid. A trip to the CARES site about the lifelong management of CAH discusses "the tendency to obesity" and over-dosing of steroids and its effect upon the body.
But this understanding is clouded, and medical guidelines about how to "manage one's weight" also presents a problematic picture.
Everyone knows and understands that athletes are bigger and heavier than men and women of the non-athletic population. They take supplements and do training workouts to build muscle mass, and after bone, muscle is the heaviest component of the body. What everyone does NOT know, and BLO is no exception in this - is that the virilization process caused by overproduction of adrenal androgens, builds muscle in CAH WITHOUT TRAINING. Simply walking around with excess production of adrenal androgens, produces muscle. Exercise leads to weight gain - not fat gain, WEIGHT gain. I have had this happen to me; on a 3-x week exercise regime with a strictly controlled diet - I GAINED WEIGHT.
Why? Because the under-treated or untreated CAH patient continues to build muscle regardless, as if they were on a course of anabolic steroids with very high doses.
And this means that even the most fit CAH patient, if not treated with steroids from birth and well suppressed, is going to be considerably "overweight." Not over-fat - overweight. Like NFL linebackers, or heavyweight wrestlers. And the sad truth - particularly of American society - is that doctors treat patients from traditional measurements and scales known as the Body Mass Index. Not actual body mass, which would estimate the components of bone, muscle, and fat to determine the leanness and relative overall health of the person.
In CAH, BMI is a meaningless statistic. The only accurate gauge of fitness for CAH - and I have yet to determine exactly HOW accurate, is body fat percentage.
The first time I got thin as an adult it was on an extremely low-carbohydrate diet, and I lost, according to that diet, approximately 25% of my overall body muscle mass. This is a horrific outcome for normal athletes, and the condition of consuming muscle in dieting is toxic to the liver. As a result, my 78 pound weight loss in 1985 produced a toxicity in my liver which only now, 20 years later, has crept back to normal.
But in the search for social acceptability and the ever-popular but false metric of BMI (which will never be applicable to any adult with CAH), many CAH patients will continue to restrict their diets to the point where ketosis occurs, or until the exhaustion caused by cortisol underproduction and thyroid hypofunction coincide to produce illness and physical collapse. The starvation diet that got me back on the medical charts as "normal weight", within about 9 months, ended me in the hospital - not for starvation, but it might as well have been. The starvation put a stress on the body that led to a familiar cascade reaction of allergies, viruses, and illness.
It is very important for those with CAH to do an ACCURATE assessment of their body mass, and to respect the unusual composition of their bodies as normal - FOR THEM. And to do that, it is a tape-measure measurement of five dimensions of the body goes into a mathematical algorithm to calculate Body Fat Percentage. For each individual, the measurement of several dimensions produces an individual "lean body mass" - which is the minimum the body CAN weigh with the muscle mass present. Muscle may weigh far more than fat, but it takes up considerably less space.
The most thorough algorithm I have found is here:
http://www.bmi-calculator.net/body-fat-calculator/body-fat-formula.php
Factor 1 Total Body Weight x .732 + 8.987
Factor 2 Wrist measurement (at fullest point) / 3.140
Factor 3 Waist measurement (at navel) x 0.157
Factor 4 Hip measurement (at fullest point) x 0.249
Factor 5 Forearm measurement (at fullest point) x 0.434
Lean Body Mass: Factor 1 + Factor 2 - Factor 3 - Factor 4 + Factor 5 LBM
Body fat weight: Total body weight - Lean Body Mass
Body Fat Percentage: Body Fat Weight x 100 / total body weight
On this calculation, my body fat percentage is 23.83. It also tells me what my range of "normal weight" should be based upon my own body composition, which is not the same as the body composition of XX who are non-CAH.
Since I am an adult who was never treated for CAH before the age of 50, the accurate calculation of body fat allows me to set a REASONABLE expectation of how much additional weight loss I should try for without a starvation plan to throw my body into liver-threatening ketosis. And how much fat I need to lose is within a narrow range: females are generally said to have an "acceptable" body fat range between 14% and 31%, 14% being the minimum to keep essential body fat for human health. If I would like to return to "athletic" rather than starve the muscle off my body to get 14% body fat, I will need to exercise it off, understanding that now that I am taking steroid replacement therapy, I will not be building muscle at the insane rates I have always done in the past, and I may lose some in the process.