boynicholas
Posts: 27
Joined: 4/26/2005
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Some of the comments I am responding to are older, but bear with me.
In order to be diagnosed with PCOS, someone must have two of three diagnostic criteria:
1) chronic decreased or no ovulation (often manifest as decreased, irregular, or no menstruation),
2) multiple ovarian cysts, and
3) some evidence of elevated androgen levels.
Now that does not mean that those are the only manifestations of PCOS, but that these are the diagnostic criteria. For example, to diagnose diabetes, you need to have persistently elevated blood glucose... but you may get a lot more symptoms than that, and those other symptoms may clue your provider in to test you for diabetes.
So in addition to the diagnostic criteria for PCOS, some of the symptoms may be the following. However many women with PCOS have few or no symptoms. But you can get:
Pelvic pain
Decreased fertility
Signs of excess androgens: hair where you don't want it (and falling out where you do), acne, deep voice, increased muscle mass, changes in sexual arousal and response, etc.
Metabolic problems: overweight/obese, glucose intolerance or even frank diabetes, etc.
It is also important to understand that not everyone who meets those three criteria (or has some of the symptoms listed) actually have PCOS... there are other diseases that can have a similar presentation which are not PCOS. For example, NCCAH, non-classical congenital adrenal hypertrophy, is probably one of the most common 'masqueraders' for PCOS. So it is important not only to meet the criteria for PCOS, but also to rule out other causes of hyperandrogenemia (elevated androgen levels) which can cause ovarian cysts and decreased or anovulation.
Some (but not most) doctors actually routinely send an ACTH stimulation test or an am 17OHP level to rule-out NCCAH in newly diagnosed PCOS patients.
If your doctor did not do this, don't automatically assume he's a quack. It is fairly standard to not do that... mostly because it may not necessarily change management that significantly. And the goal isn't always to know exactly what minutiae of biochemistry causes your problems, but rather to fix the problems and ensure you are happy and healthy (i.e. to treat symptoms if there are any, and to prevent bad future outcomes.) So since PCOS is much more common, it is reasonable to treat someone as if they have PCOS, and if all symptoms resolve and there are no further problems just stay with what works. (Also its important to realize that regardless of which is the diagnosis... there is no magic pill to stop pelvic pain, make you have a normal weight, make you fertile, etc. And a lot of the treatments are exactly the same.)
In addition, you should realize that the majority of women who truly have either PCOS or NCCAH... have no idea that they have the disease – mostly because they have little or no symptoms and are not bothered by it. Moreover, sometimes the 'treatments' may be worse than the cure. So often in medicine, you need to remember that 'if it ain't broke, don't fix it' is a good policy.
Now, there are certainly some things we know that should be screened for: cervical cancer, high blood pressure, alcohol abuse, high cholesterol, breast cancer, diabetes, colon cancer, etc. But all of these diseases have somethings in common:
1) undiagnosed, they all cause problems for most people who have them,
2) we have decently accurate (and inexpensive) screening tests for them that can detect disease when it is either asymptomatic or with few symptoms,
3) if you diagnose it early, you can change the outcome of the disease.
However, not every test medicine has, or disease that we diagnose fulfills these criteria. In fact, in some cases, doing more tests and more treatments can be actively bad!
A really good example of this is those 'whole body CT scans' that were en vogue a few years ago. You could walk in, pay a grand or so, and have a head to toe CT scan done and read by a radiologist. The rad made some money. The guy who had the scanner made some money. The person getting the CT would either get 'peace of mind' or maybe early diagnosis of a cancer that would kill them. Plus this was out of pocket, so its not like it was taking money away from other health care services.
Sounds like a great idea right? In their ads, they would have these testimonials from 40 year old people who had an early small renal cell carcinoma detected that would have meant their almost certain death within 5 years. And I will tell you, those testimonials are probably entirely accurate and true. If that smiling guy in the picture hadn't had that CT, he'd have been in a casket today.
But I didn't get one. And in fact, I could order my own today, easily afford it, and still have yet to ever climb on a CT gantry in my life. Why not?
First and foremost I like to avoid all radiation possible, but also because of the people they don't tell you about in the ads. For every early asymptomatic renal cell cancer they detect, they have a dozen of the following: middle aged father of 2 gets a screening CT with one of these 'pick your scan' outfits – only his chest, because he's a smoker and he's worried about lung cancer. Well... they found something. A very worrisome mass deep in his lung that, given his history, and now knowing this scan result, has about a 50% chance of being a malignancy.
So they tried a CT guided needle biopsy. They couldn't get it, although they did succeed in giving him a pneumothorax – collapsed lung. So they went to the OR and did an open lung biopsy. While undergoing the surgery, he had an idiosyncratic adverse reaction to one of the medications he was given. He almost died and in fact had a heart attack on the table. He spent 2 weeks in the ICU and this was complicated by an episode of sepsis – severe hospital acquired infection, and a pulmonary embolus (blood clot in the lung).
When he was finally discharged from the hospital, he was unable to work, on half a dozen medicines for his congestive heart failure, to keep him from developing another clot, etc. His wife had to take FMLA to stay at home and take care of him because he couldn't even bathe himself. Eventually, since he was an otherwise healthy middle aged man, he did regain some of his health. He was able to return to work part time and actually got to see his two kids graduate from college – which was what motivate him to get the scan in the first place.
Oh, and the biopsy was negative. It was probably an old granuloma from a fungal infection he had in his youth.
The moral of this story though is one of the rules of the 'House of God' (great book, BTW) - “13. THE DELIVERY OF MEDICAL CARE IS TO DO AS MUCH NOTHING AS POSSIBLE.” Though, while most of the rules of the HOG are absolutely true 9 and 13 are the only ones that should be qualified... I would rephrase 13 as “The delivery of good medical care is knowing when to do as much nothing as possible.” That is, unless its something for which there is a good evidence base for screening and unless the person has symptoms, don't look for trouble. Moreover, if the person has symptoms, the safest and best method is doing those tests which are the ones that will answer a question and are the least invasive and least likely to lead you down the path of causing iatrogenic assault on your patient.
And so I judge a physician as better in general if he does less tests or diagnostic procedures. (The only exception being those tests that we have good evidence help more people than they hurt by screening: http://www.ahrq.gov/clinic/uspstfix.htm)
Nick
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PCOS anyone? - 
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