PCOS

I've been doing a little research on PCOS. In addition to my initial post on the topic.

The reason that I'm intrigued by this syndrom is that visually I don't have a great deal of PCOS characteristics. My Primary Care and Gynecologist, both dismissed PCOS despite my hormone levels. The only hormone that is out of whack is my testosterone. So, I've been intrigued to see what characteristics do pertain to me.

My initial research led me to The International Council on Infertility Information Dissemination, Inc. (I have a link to the site on the left.) On this site, it has PCOS frequently asked questions. Per this site, many women with PCOS suffer from the following (I've highlighted the items that effect me.):

1. Amenorrhea (no menstrual period), infrequent menses, and/or oligomenorrhea (irregular bleeding) — Cycles are often greater than six weeks in length, with eight or fewer periods in a year. Irregular bleeding may include lengthy bleeding episodes, scant or heavy periods, or frequent spotting.
2. Oligo or anovulation (infrequent or absent ovulation) — While women with PCOS produce follicles — which are fluid-filled sacs on the ovary that contain an egg — the follicles often do not mature and release as needed for ovulation. It is these immature follicles that create the cysts.
3. Hyperandrogenism — Increased serum levels of male hormones. Specifically, testosterone, androstenedione, and dehydroepiandrosterone sulfate (DHEAS).
4. Infertility — Infertility is the inability to get pregnant within six to 12 months of unprotected intercourse, depending on age. With PCOS, infertility is usually due to ovulatory dysfunction.
5. Cystic ovaries — Classic PCOS ovaries have a "string of pearls" or "pearl necklace" appearance with many cysts (fluid-filled sacs). It is difficult to diagnose PCOS without the presence of some cysts or ovarian enlargement, but sometimes more subtle alterations may not have been recorded, or are not recognized as abnormal, by the ultrasonographer.
6. Enlarged ovaries — Polycystic ovaries are usually 1.5 to 3 times larger than normal.
7. Chronic pelvic pain — The exact cause of this pain isn't known, but it may be due to enlarged ovaries leading to pelvic crowding. It is considered chronic when it has been noted for greater than six months.
8. Obesity or weight gain — Commonly a woman with PCOS will have what is called an apple figure where excess weight is concentrated heavily in the abdomen, similar to the way men often gain weight, with comparatively narrower arms and legs. The hip:waist ratio is smaller than on a pear-shaped woman — meaning there is less difference between hip and waist measurements. It should be noted that most, but not all, women with PCOS are overweight.
9. Insulin resistance, hyperinsulinemia, and diabetes — Insulin resistance is a condition where the body's use of insulin is inefficient. It is usually accompanied by compensatory hyperinsulinemia — an over-production of insulin. Both conditions often occur with normal glucose levels, and may be a precursor to diabetes, in which glucose intolerance is further decreased and blood glucose levels may also be elevated.
10. Dyslipidemia (lipid abnormalities) — Some women with PCOS have elevated LDL and reduced HDL cholesterol levels, as well as high triglycerides.
11. Hypertension (high blood pressure) — Blood pressure readings over 140/90.
12. Hirsutism (excess hair) — Excess hair growth such as on the face, chest, abdomen, thumbs, or toes.
13. Alopecia (male-pattern baldness or thinning hair) — The balding is more common on the top of the head than at the temples.
14. Acne/Oily Skin/Seborrhea — Oil production is stimulated by overproduction of androgens.
15. Seborrhea is dandruff — flaking skin on the scalp caused by excess oil.
16. Acanthosis nigricans (dark patches of skin, tan to dark brown/black) — Most commonly on the back of the neck, but also but also in skin creases under arms, breasts, and between thighs, occasionally on the hands, elbows and knees. The darkened skin is usually velvety or rough to the touch.
17. Acrochordons (skin tags) — Tiny flaps (tags) of skin that usually cause no symptoms unless irritated by rubbing.

I may actually suffer cysts or large ovaries, but my insurance doesn't cover ultrasound for infertility testing, therefore my RE has never gone that far. Also, from what I've read you only need to have three of the symptoms to be considered with PCOS. So despite the fact that I don't have hirsutism or obesity (The ten pounds that I would like to go away, don't put me in this category. Also, please note I am not complaining, actually kind of grateful.), I do have PCOS.

After my initial research, I purchased a book titled PCOS and Your Fertility by Colette Harris and Theresa Cheung. An interesting tid bit:

People with PCOS should take extra vitamins and minerals. Because they produce too many stress hormones: cortisol and adrenaline. And when you are under too much stress, "they start to wear you down and overproduce not just cortisol and adrenaline, but testosterone, too. Excess cortisol, adrenaline, and testosterone will not only make PCOS worse, but will also drive your body toward irregular periods and subfertility. The adrenals rely on vitamins C, B5, B6, zinc and magnesium, and these are rapidly depleted when you're under stress, so a good multivatimin and mineral every day makes sense."

Why is this interesting? Well, because I ALWAYS have some type of cold. In the last three weeks, since reading the above paragraph, I've been taking an additional vitamin C to my pre-natal vitamin. Guess what? No colds.

Granted, I found a few more interesting tid bits, but the above paragraph was the most poignant.

Ultimately, to my Primary Care and Gynecologist, please consider more than what you see on the outside, because you may be overlooking something.

Findings

Well, the RE appointment was this morning. She spent an hour reviewing all of my tests, and kept me in the waiting room while she did so. When she came to get me from the waiting room, she had made her medical mind up, and only spent 10 minutes explaining her findings.

I have. Drum roll, please. I have an "indication of PCOS because of my high testosterone." But, I don't have any of the other symptoms and all of my other tests came back normal.

OK, so not as cut and dry as I hoped. Like you definitely have PCOS. But, relief that I don't have any tumors. Actually, she was the one who said it. (For this reason, I really like my RE becuase she goes along with my crazy thoughts before I say them out loud.)

There is nothing to fix my testosterone imbalance. It is the way I was made. GO NATURE, please note, sarcasm has been added.

The plan for the next six months is the following. Three months of Clomid at 100 mg and good old fashioned s*x. If this doesn't work, I move onto Clomid or injectibles for three months with IUI. If this doesn't work, we reevalutate.

My homework is to look into supplemental fertility insurance to cover IUIs. She likes to give me homework.

Also, she checked my progesterone. The results should be here tomorrow. If they are low or non-existent, that means negative on the pregnancy this cycle, but that the Wicked Witch will be coming. If high, I should keep my fingers crossed. Hoping for the second :).

The Afternoon

The rest of the day was fine. A nurse from the RE's office called and only gave me partial information on the bloodwork. For the most part it was good news. My FSH was only in the 5 range. Anything under 10 is good, the insurance requires that it be lower than 13. So, very good. My LH hormone was slighlty higher than the FSH, but not that much. The only thing that was of note was my testosterone. So, like myself, I have begun the investigation.

Other than the information that I have shared below, the other thing that I've found is what high testosterone does. Basically, when your testosterone is low, the LH hormone increases to increase the testosterone. Since my body has too much testosterone, it isn't producing the LH hormone. The LH hormone is fairly important because it is the hormone that triggers ovulation. Basically, my eggs never mature because of the hormone imbalance.

Also the information that I have found come back to PCOS.

More later.

Testosterone

Per my blood work, I have high testosterone at 88.7. The norm, for day 3, is 6-86 ng/dl
Most would consider a level above 50 to be somewhat elevated.

Some information. Thank you WebMD in advance. Please note that I have deleted all references to males, because I am female and this is my unprofessional investigation into myself.

Testosterone

Test Overview

A testosterone test measures the level of this male hormone (androgen) in the blood. Testosterone affects sexual features and development. In both men and women, testosterone is also produced in small amounts by the adrenal glands; and, in women, by the ovaries.

The release of testosterone is controlled by a hormone called luteinizing hormone, or LH, which is produced by the pituitary gland (see an illustration of the pituitary gland). When the testosterone level is low, the pituitary gland releases LH, which increases the amount of testosterone produced by the testicles.

Most of the testosterone in the blood is attached to a protein called sex hormone binding globulin (SHBG). A small amount is attached to albumin. The unattached, or "free," testosterone may be measured when conditions that can increase SHBG (such as obesity or hyperthyroidism) are present. Free testosterone can also be calculated from SHBG and albumin levels. Usually this is done only at large medical centers.

Why It Is Done

A test to measure testosterone can be done to:

Evaluate why a woman is developing male features, such as excessive facial and body hair (hirsutism) and a deep voice.
Evaluate irregular menstrual periods in women.

How To Prepare

No special preparation is required before having this test. Your health professional may recommend a morning blood test, when testosterone levels are highest.

A testosterone test measures the level of this male hormone (androgen) in the blood.

Normal
Normal values may vary from lab to lab.

Women:
less than 100 ng/dL

Women:
less than 10 pg/mL


High values

In women, a high level of testosterone may indicate a tumor of the ovaries or adrenal glands or polycystic ovary syndrome.

What To Think About

Most of the testosterone in the blood is attached to a protein called sex hormone binding globulin (SHBG). The unattached, or "free," testosterone may be measured when conditions that can increase SHBG (such as obesity or hyperthyroidism) are present. Usually this is done only at large medical centers.

A low LH level and an abnormally low or high testosterone level may indicate a problem with the pituitary gland.

Credits

Author Jan Nissl, RN, BS
Editor Susan Van Houten, RN, BSN, MBA
Associate Editor Lila Havens
Primary Medical Reviewer Caroline S. Rhoads, MD

- Internal Medicine
Specialist Medical Reviewer Alan C. Dalkin, MD

- Endocrinology
Last Updated July 2, 2004

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From How to Get Pregnant, by Sherman J. Silber, M.D.

Likelihood of Pregnancy in Fertile Women -
How long should it take?

Age - Probability of conception per month - Average time to conception - Probability w/in a yr.

Late thirties - 8.3 - 12 - 65
Early thirties - 10 - 10 - 72
Late twenties - 15 - 6.7 - 86
Mid twenties - 20 - 5 - 93
Early twenties - 25 - 4 - 97

WHAT THE RE THINKS I HAVE

Polycystic Ovary Syndrome is a common disease, which can cause symptoms such as irregular periods, excessive facial or body hair, acne, infertility, irregular spotting and obesity.

Just because you have PCOS does not mean that you are infertile. Many women with PCOS fall pregnant naturally, whereas others require some level of medical assistance to help ovulation to occur regularly. You can have polycystic ovaries without having PCOS.

Getting A Diagnosis: PCOS is normally diagnosed through an ultrasound and/or blood tests.

Polycystic ovaries tend to have a string of many small cysts around their edges, which show up on an ultrasound.

You may have any of the following blood tests:
· Full blood count, to check that you are not anaemic
· Thyroid function
· Testosterone, as many women with PCOS have a raised level of testosterone
· Luteinsing Hormone (LH) which can be raised in PCOS sufferers
· Follicle Stimulating Hormone (FSH). You might also be offered an oral glucose tolerance test as many women with PCOS have raised levels of the hormone insulin and have a tendency towards insulin resistance

Treatments: Some GPs offer women the birth control pill as a treatment for PCOS and the brand Dianette is often offered to women who have problems with acne or excessive body hair.

Clomid or Clomiphene Citrate is often offered to women who are not ovulating and who wish to become pregnant. If Clomid does not work, then injectable hormones may be used which stimulate the ovary to produce eggs.

Metformin is another drug, which can be used either alone or together with Clomid. It improves insulin sensitivity and can also help with weight loss and help ovulation. It can have side effects such as nausea, vomiting, diarrhoea, and abdominal bloating.

Laparoscopic Ovarian Diathermy (Ovarian Drilling) is another treatment, which is more suitable for women who are close to their ideal body weight. It involves a laparoscopy with a general anaesthetic and is performed as day surgery. Small holes are made in the cysts of the ovary using a probe or laser. It can restore ovulation and make the ovary more sensitive to hormones.

Helping Yourself: Weight loss is the first and most effective treatment for PCOS. A weight loss of 10% is usually enough to re-start periods or make them regular and ovular. Women with PCOS who are significantly overweight are more likely to have difficulty conceiving, are more likely to miscarry and more likely to develop gestational diabetes in pregnancy and maturity-onset diabetes (Type II) in later life.

A low-fat, high fibre diet is most effective for aiding weight loss in PCOS, but sufferers must be patient and persistent, as safe and permanent weight loss can be slow and difficult to achieve.

Many women have found that their symptoms are reduced by eating healthily, drinking more water, reducing alcohol consumption, giving up smoking and taking regular exercise.

Alternative Therapies: Some women have found the following alternative therapies helpful; acupuncture, aromatherapy, herbal medicine, homeopathy and reflexology.

Thanks again, iVillage, you have most informative.