It sounds like your doctor is right that you have what I call Anovulatory Androgen Excess (AAE) but that is commonly called PCOS. This occurs in about four percent of women, is more likely with obesity and in women who have it in their family. AAE is diagnosed by:
- Observing that cycles are far apart or non-existent;
- Finding evidence (often by an ovarian ultrasound showing multiple cysts and enlarged ovaries) that you are not ovulating or making an egg most cycles;
- Observing signs and symptoms of higher male hormone levels like having any of the following signs: coarse or dark facial, breast, lower abdominal and inner thigh hair, acne, and thinning head hair; and,
- Having an increased risk for or abdominal obesity, insulin resistance or type 2 diabetes.
The good news is that all aspects of AAE are treatable and reversible with improved understanding, changed behaviours, and the right therapies. If you want to have children, you should be able to!
Your biggest concern seems to be your weight gain and increased waist size. You are right to be concerned, because a waist that is larger than 88 cm in women (102 cm for men) means that you have what is called insulin resistance. That means that your own levels of insulin have become too high in reaction to your body’s decreasing sensitivity to the hormone. The higher insulin levels make you inappropriately hungry; while at the same time, insulin has become less effective as a regulator of energy balance. We think that happens because of increased fat, especially what’s called “visceral fat” that lines the organs in the abdomen, isn’t as responsive to insulin as muscle and other tissues.
I’m glad that your fasting glucose (blood sugar) levels are normal. That means you don’t have diabetes now. I suggest, however, that you have a fasting blood sugar tested once every year. It will also be helpful for you to measure your waist and weigh yourself once every month so you can see your progress as you follow the suggestions below.
Besides the fasting blood sugar, you also need a blood test to monitor your blood sugar more comprehensively. Every 3-6 months you should have what is called glycosylated hemoglobin (HbA1c) test. It is a very clever test that tells what your average blood sugar has been, night and day, for the last three months! The basis of the test is the molecule hemoglobin that is part of red blood cells and whose job it is to carry blood oxygen. Red blood cells live for about 3 months, are being formed all the time, and become complete by adding hemoglobin. If your blood sugar was high when hemoglobin was incorporated into a particular red blood cell, that red cell will be marked by glycogen and, thus, be detected when we test blood for HbA1c. HbA1c tells us what percentage of your red blood cells have a glycogen attached to them. It is normal to have 4-6 percent. Higher than six percent indicates that blood sugar has been too high. Ask your doctor to order this test and also request that the lab send you a copy of your test results.
Now let’s talk about insulin resistance. This is not a disease, per se, but is a strong risk factor for diabetes. Those with insulin resistance are much more likely to develop diabetes than the average person. The three things that have been proven to reverse or “cure” insulin resistance and, thereby, prevent the development of diabetes are: 1) to increase aerobic-type exercise, and taking one of two medications that sensitize cells to the effect of insulin. These medicines are called 2) Metformin or 3) Roziglitazone.
I’d suggest first that you increase your current exercise intensity and/or duration of exercise by 10%. But, given that you’re already doing a good job of exercising, you can stop increasing when you’re working out or walking an hour a day. I’d also suggest that you ask your physician for referral to a Diabetes Education Programme at the hospital nearest to you. You need to learn about a diabetic diet and how to follow it. Basically, that means no sugar, no sweet drinks or desserts, and increasing the amount of protein you eat compared with the amount of starches (complex carbohydrates). You may also find it helpful to monitor your own blood sugar by pricking your finger (capillary glucose) before meals and at bedtime (one test each day for a while but at a different time of the day) to find out when your own blood sugars are highest. The staff at the Diabetes Education Centre can teach you about diet, exercise, doing the capillary glucose test and provide you with a small blood sugar monitor. They will also see you yearly to review how you’re doing. You will need a prescription from your doctor for the glucose test strips.
There are two different patterns of elevated blood sugar—1) one in which the first morning fasting sugar is normal, but sugar levels rise with eating and throughout the day; and 2) one in which daytime sugars are normal, but levels increase overnight giving a high fasting glucose in the morning.
I’d suggest that you ask your doctor for a prescription for Metformin. This is an old fashioned medicine that we know a lot about. It makes your own insulin more effective, therefore your insulin levels decrease, you become less hungry and your abdominal weight gain stops and reverses. It comes as 500 mg pill as a generic medicine (not expensive) and the usual dose for prevention is one to three pills a day.
The most common side effects of Metformin are a kind of nausea, light-headedness or diarrhea. These are likely to not bother you if you start slowly, and always take the pill with meals. Start with a half a tablet at one meal a day—do this for a week before increasing to a full pill. Add a second pill the third week, if you need it.
The meal or meals at which you take Metformin depend on your pattern of blood sugars. If your sugars are highest at supper, and you’re most hungry in the afternoon and evening, then you would want to take Metformin at lunch and supper, for example. The sugar pattern with normal fasting levels but high sugars following meals is the most common with Anovulatory Androgen Excess in my experience.
Now that we’ve dealt with insulin resistance, I’d suggest that you stop the rather high dose estrogen pill, Diane35® that you are taking. (You will need to use two barrier methods as described in the website article “Choices for Effective Contraception in 2006 [1].“ It is likely that the amount of estrogen, 35 micrograms, in Diane35®, which is about six times a normal menstrual cycle level, is increasing your insulin resistance as well as giving you a too-high risk for blood clots. The good thing about that particular pill, however, is that its progestin (synthetic progesterone-like medicine), component, cyproterone acetate, is an anti-androgen that helps to decrease unwanted facial hair and acne.
In place of the estrogen-cyproterone pill, I suggest asking your doctor for a prescription for cyclic progesterone therapy—see the handout about it [2]. [2] Cyclic Progesterone treatment will give you regular cycles, help to decrease androgen levels, prevent the endometrial cancer for which women with AAE/PCOS are at increased risk, and help with insulin resistance and weight gain. The prevention of weight gain is because you will burn about 300 more calories a day while taking progesterone. It does this by increasing your core temperature about 0.2 of a degree Celsius. That higher core temperature requires 300 extra calories to create.
If you are troubled by unwanted facial hair, loss of head hair in the temples and the front in a men’s balding pattern, or acne, the third part of my AAE treatment/prevention approach is to add Spironolactone. This medicine was initially used for high blood pressure treatment because it antagonizes the natural hormone, aldosterone, which makes us retain sodium and raises blood pressure. It turns out that Spironolactone also is a blocker of the actions of androgens (male hormones) at the cellular level. I’d suggest a dose of 100 mg/day. Again, it is an inexpensive older medicine we’ve used for over 35 years, that has few side effects. The one important side effect is that it causes irregular bleeding and therefore should never be taken without cyclic progesterone therapy (and effective contraception). It also raises your blood potassium levels (K+) but this isn't problematic unless you have abnormal kidney function or are dehydrated. Levels don't need to be measured—they’ll be slightly above the upper limit of normal.
In summary, you are doing the right thing to question your current therapy. As your insulin resistance improves with stopping Diane35®, increased exercise, cyclic progesterone therapy, and possibly Metformin, you’ll find yourself feeling much more knowledgeable and healthy.
Hope this is helpful for you.
