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Date of last update: 10/17/2017.

Forum Name: Endocrinology Topics

Question: A hormonal mess for the past 28 years, and I can't take any

 Dietpro1 - Sun Sep 04, 2005 8:42 am

I am a 38 year old female who has suffered from SEVERE PMS since I was 11!! (Before they
even labeled these symptoms!) Over the years, since about 9 ½ when I started my onset of menses, I have suffered with severe hormonal related problems (mood swings, depression, acne etc) that would come on me like a ton of bricks (around ovulation) and then miraculously disappear the day of my period!

In 1995, my obgyn found an ovarian cyst on my left (which is still there) and now (within the past 2 years) there is one also on my right ovary, I suffer from elevated androgen levels (400!) elevated estrogen levels, elevated fsh on day 2, all else seems to be wnl. I had a needle aspiration where the doctor took out the fluid in both of the cysts and it seems as
though my fsh returned to normal and the estrogen dropped, but then the
cysts came back and filled up with blood. I do not ovulate and the past 3
periods have occurred around day 35! (My whole life, they have occurred
between day 24-26)

I am at the end of my rope, because NOONE seems to want or be able to help
me. I have asked every question I possibly can, including going in there with a printout from webmd asking, could I have pcos? how about endometriosis? There has to be a cause. I can't understand how my androgen level would just shoot up to 400... The answer... take spironlactone, it will go down. I am a registered dietitian so I have some (very limited) knowledge but I am NOT getting answers. I am actually the one asking if the cyst is he cause or effect of my hormonal imbalance (i tend to think the effect, since I've had hormonal problems since early on and the cyst only since 1995)

I've seen 3 obgyns-a regular ob gyn-she wants to prescribe the 3 meds mentioned earlier to relieve the symptoms (BUT WHAT ABOUT THE CAUSE)
A fertility specialist that isn't too interested in discussing these issues .. he just looks at the fsh level and dismisses me by saying.. looks like you need an egg donor
and the third an oncologist gyn- he advises let's remove the cysts (through an incision across the pubic bone) and see if they come back.

I am truthfully at my wits end here and I don't know what else to do!

My priority has to be hormone regulation, because these symptoms are becoming unbearable: 6-7 pounds weight gain per month for approximately 10 days, mood swings, acne, hair, back ache and feelings of fatigue, anger and sadness without much cause.

I do believe that this imbalance has caused the infertility and I just want to feel well!

I am willing to pay a fee for your time! You guys, as a profession, are underpaid as it is!

Please advise
 Theresa Jones, RN - Mon Sep 05, 2005 4:45 am

User avatar Hi Dietpro1,
Endometriosis in some women exhibits no signs or symptoms. However, when symptoms are present they cause severe menstrual cramps, heavy menstrual bleeding, pelvic pain, low back pain, and infertility. Advanced edometriosis may cause adhesions that involve other structures including the ovaries causing midcycle pain and produce ovarian cysts such as endometriomas/chocolate cysts. Diagnosis of this particular disorder is usually discovered during a pelvic exam and by a laparoscopic view. Simple/functional cysts containing fluid without debris are much less disconcerting or worrisome than blood filled and solid cysts.
PCOS is also linked to infertility and many women with this disorder have an underlying metabolic disorder, insulin resistance. These women are at higher risk for developing high cholesterol, high triglycerides, heart disease, high blood pressure and diabetes. Medication to increase insulin sensitivity such as metformin are commonly used.
The recommendation for ovarian cysts that do not disappear within 2-3 menstrual cycles require further evaluation so I am in agreement with your third physician (oncologist gyn) about removal of the cysts to also evaluate any underlying pathological disease, although this may possibly be done during a laparoscopic procedure.
I would also suggest a referral to an Endocrinologist to identify any hormonal/metabolic disorder. I hope this information has been somewhat helpful.
 Dr. Shank - Mon Sep 05, 2005 5:51 pm

Hi Dietpro1:

I agree with Rntdj that you need to see an endocrinologist. Endocrinologists are the hormone specialists. Ob-gyn's are primarily trained as surgeons, and few have an in-depth knowledge of hormones.

As an endocrinologist who has co-authored a review on PMS, I would like to add to Rntdj's excellent comments.

You are describing more than one problem.

The first is premenstrual syndrome, which, as you describe, has a variety of features. The literature is fairly clear that the best treatment for the depressive component is the selective serotonin reuptake inhibitors (SSRI's). Some women seem to benefit from manipulation of the hormonal cycle associated with the menstrual cycle. The prominence of acne is consistent with your statements that you have very high androgen levels; while spironolactone will block the effects of androgens, and is effective to eliminate the acne, unwanted hair, and hair loss (pattern baldness), but it will not address the underlying cause, and it cannot be used during pregnacy or attempted pregnancy.

The second is the elevated androgen levels, themselves. You did not say which of the many androgens ("male" hormones) was "400" or give the units. If you are referring tototal testosterone in ng/dl, then this is extremely high for a woman, representing the low end of the normal range for a man. Find a physician who will measure order measures of testosterone (preferably free testosterone), 17-OH-progesterone (baseline and after a cosyntropin stimulation test), DHEA-S, and either DHEA, androstenedione, or both (Even though thse terms are probably unfamiliar to you, he will know what they mean.). In addition, he should measure a fasting blood glucose and insulin level, which will allow him not only to exclude diabetes and impaired fasting glucose, but estimate your body's resistance to insulin using a well-known formula known as "HOMA." In selected cases, an IGF-1 level (to screen for acromegaly, caused by too much somatotropin or "growth hormone," which is a rare cause of PCOS) or adrenal gland imaging (to evaluate for adrenal masses or provide clues about congenital adrenal hyperplasia) should be performed.

Much to-do is made of "cysts" on the ovaries, which are usually nothing more than the "follicles" that produce eggs (although, as Rntdj notes, there are exceptions to this rule). In extreme case of PCOS, numerous follicles form but do never rupture to release an egg, because of secondary abnormalities that develop in the hormonal control of ovulation. Surgeons noted these abnormal follicles, biopsied them (because that is what surgeons do), and accidentally treated the abnormal production of androgens by reducing the amount of ovarian tissue that was producing them. To this day, many people mistakenly believe that "cysts" (follicles) on the ovaries are the cause, rather than the result. We now know better, but, until we can agree upon a better name, the condition is officially known as "PCOS" (which no longer stands for "polycytic ovarian syndrome" or anything else). Unless the follicles are causing you symptoms (such as pain), it is pointless to "treat" them! Unless the underlying cause of excess androgens is treated, of course they will come back after their removal.

By far, the most common cause of excess androgens in women is insulin resistance, requiring the body to produce high levels of insulin to keep the blood sugar normal. Not only does this increase the risk of type 2 diabetes and other features of the "insulin resistance syndrome," but it stimulates the ovaries to produce androgens. Diet and exercise are usually recommended to lose weight and reduce insulin resistance; while I wholeheartedly recommend these for HEALTH, I hope that I will not offend you when I say that their long-term results in clinical practice for treating DISEASE are little better than a placebo. Metformin is the standard treatment, because it does not cause weight gain and can be safely used during pregancy (Because it reduces the high rate of spontaneous abortions in PCOS pregancies, it SHOULD be used during pregnancy.) Thiazoladinediones (the "TZD's" pioglitazone and rosiglitazone) are also effective, but may cause unacceptable weight gain in about 5% of users, occasionally cause edema, and should not be used during pregancy or attempted pregancy. Most, but by no means all, women with PCOS are overweight, or at least carry their weight in their abdomins. If your weight qualifies, weight-reducing drugs (orlistat, sibutramine, topiramate) are a consideration, but they should not be used during pregancy or attempted pregancy (Bariatric surgery for weight loss should be a last resort, after a thorough endocirne and metabolic evaluation, maximal lifestyle intervention, and failure of pharmacologic alternatives. The popular bariatric surgeries all cause malabsorption with severe long-term consequences, and gastric bypass surgery with Roux-en-Y has been associated with a high risk of complicated pregnacies. Laparoscopic adjustable vertically banded gastroplasty is an emerging alternative with a long-term weight loss at least as good gastric bypass with Roux-en-Y, but without the malabsorption and the high rates of surgical morbidity and mortality; I am not able to comment on pregnancy after this procedure, however.).

Insulin-like growth factor type 1 (IGF-1) can mimic the effects of insulin on the ovaries, and I have seen one case where an extreme elevation due to acromegaly was the cause of PCOS (This is rare, with only about six cases described in the literature.). It would be very unusual for PCOS to cause total testosterone levels of 400 ng/dl, however.

The second most common cause of excess androgens in women is congenital adrenal hyperplasia. DHEA-S is only produced by the adrenal glands (although it can be produced by adrenal conversion of DHEA from other sources), so an elevation in DHEA-S can be a clue that the adrenal glands are the source of the excess androgens. Despite its name, the adrenal glands are usually not enlarged. A genetic deficiency in the enzymes required for the adrenal glands to produce cortisol (an essential hormone) causes the body to make more of the "ingredients" (precursors) from which cortisol is formed, so that the enzymes that are available will work more efficiently to produce cortisol. Unfortunately, these "ingredients" are also used by other enzymes that produce androgens. By far the most common type of enzyme deficiency producing this condition results in a build-up of 17-OH-progesterone. Cosyntropin is a synthetic hormone that allows a sort of "stress test" of your adrenal glands' ability to produce cortisol to be performed. Giving cosyntropin will cause the body to try to make more cortisol. If it cannot, 17-OH-progesterone levels will rise dramatically. in the past, congenital adrenal hyperplasia was treated with low doses of dexamethasone (a cortisol-like drug), but except for the "classical" forms that show up in early childhood, this is now generally reserved for women who are attempting to become pregant (to improve fertility) or are pregant (to avoid excess androgen exposure to the fetus--particularly undesireable for a female fetus!).

Rare causes of excess androgens include masses on the ovaires or adrenal glands, teratomas (which are sometimes located on the ovaries), and carcinoid syndrome. Use of progestins (synthetic substitutes for the hormone progesterone) that have androgen activity (as contraceptives or to "bring on" the menstrual period) are often overlooked. "Dietary supplements" of DHEA, DHEA-S, or androstenedione ("andro"), herbal remedies that are adulterated or mislabeled with these compounds, and misuse of androgens (by female atheletes or women desiring to become "buff") are other causes that are easily overlooked. From what you describe, an ovarian mass (which can be the source of androgens) has been excluded, but your physician should at least think about the other conditions.

I hope that this information has been helpful to you.


Dr. Shank

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