Testosterone is 387

[homewithjacob]

I am 27 years old. Diabetic on Janumet (Januvia and Metfromin 50/1000 2x daily) I have PCOS in a severe state. I have not had a period in 8 years. Not even Provera can induce. My testosterone is 387 as of last week. Last years reading was 197 ng/ml.

My estrogen is minimal. My ovaries are enlarged with a thickened stroma including many cysts. I have one adopted child but no biological. I am the poster child (according to my gyn) for Turners Syndrome. Short (5'1" 230 lbs.) no neck, secondary ammenorhea. I originally started my period at age 7. Irregular for my entire life. Many many reasons Turners is suspected. Manly build, extreme hair growth, male pattern baldness, depression. Hypertensive and high cholesterol. Many other things as well.

Doc awaiting karyotype results to diagnose TS. Also checking into Adrenal tumors.

What is your opinion? What are my options? I am seeing a new endocrinologist on August 28, and see regular gyn next week. Considering oophorectomy and of course tumor treatments. Outcome of cancer is very very grim. Praying it is not! Please give your advice and what you have seen in this scenario.

[Elaine Brown, MD]

Hi!
The results of your karyotype are going to be very important.  Until you have that, its difficult to form much of any opinion.  It sounds like you have a very good doctor who is doing all the correct testing.  
I rather doubt that you will turn out to have Turner's syndrome though, simply because most women with that have SMALL ovaries. Also, it would be VERY unusual for someone with Turner's to start menstruating at age 7.  In fact, you qualify for precocious puberty with that history, and that probably also explains your short stature.
Another possibility is congenital adrenal hyperplasia.  That would also fit with your hypertension. If you were my patient, I would do a CT or MRI scan of your adrenal glands to rule out tumors, although, I doubt that you have a malignancy simply because your history of problems is too prolonged.  Tumors usually become symptomatic very quickly.
If you were my patient, I would also check DHEAS and 17 hydroxyprogesterone levels in addition.
I would wonder about some medical therapy too, such as birth control pills (this would supplement your estrogen levels and bind up some of the testosterone) and spironolactone (this blocks the effects of testosterone at the level of the receptors).
You might also benefit from an old fashioned procedure known as an ovarian wedge resection.  In this procedure a "chunk" is taken out of the ovaries instead of removing the entire ovary.  It was the only way to treat PCOS years ago.
Well, good luck with your evaluation--you certainly are a medical mystery!
I hope some of this information is helpful!
Dr B

[homewithjacob]

Thank you Dr. for your response. I just had emergancy appendix removal surgery so my reponse has been delayed.

I have tried Birth Control Pills and had horrible side effects and had to discontinue them. My DHEA S is being along with my 17 hydroxyprogesterone . None of these tests have come back as of today. Dr's office said kayrotype takes 20 days to return. Aggh.

I have mentioned to two different doctors "Ovarian Drilling" after reading so many good things about the surgery and in both cases I was almost laughed out of the office. The last doctor told me that it is used about as much as "leaches".

I couldn't understand this as I have read of girls undgergoing the procedure within the past year. My doc is opting to do a hysterectomy- Do you feel this would help along with testosterone blocking meds and estrogen replacement?

Thank you so very very much for your time.

Amanda