april abbott Posted September 16, 2009 Report Share Posted September 16, 2009 Hello, all. I am usually one to ask the docs and nurses tons of questions. I have been to endo. for excessive facial hair ( I am 30 years old and have been having dark, coarse facial hair for many years on chine and lip). I just received a call from the nurse about recent labs. Unfortunately, there was a bad connection due to the weather, and I was having a hard time understanding her. I was told my total testosterone levels were normal but my "binding testosterone" was elevated and the doc wants me to take 100 mg of Aldactone daily.I was told I would need to increase my fluid intake and let my dys. doc know the situation. I looked up the medicine Aldoctone( spironolactone) and I noticed it is a slight diuretic. Well, I already have a hard time holding on to fluids and I get dehydrated very easily. Has anyone else taken this medication? What are the side effects, and how much do I need to worry about the fluid loss? I will be taking 100mg daily. Is that a large amount for this med?I would like more explanation on the free floating testosterone she was talking of, but am having a hard time finding the info. on the net, unless it is in medical jargon. Can anyone shed some light on this situation? Thanks in advance. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted September 16, 2009 Report Share Posted September 16, 2009 Hello, all. I am usually one to ask the docs and nurses tons of questions. I have been to endo. for excessive facial hair ( I am 30 years old and have been having dark, coarse facial hair for many years on chine and lip). I just received a call from the nurse about recent labs. Unfortunately, there was a bad connection due to the weather, and I was having a hard time understanding her. I was told my total testosterone levels were normal but my "binding testosterone" was elevated and the doc wants me to take 100 mg of Aldactone daily.I was told I would need to increase my fluid intake and let my dys. doc know the situation. I looked up the medicine Aldoctone( spironolactone) and I noticed it is a slight diuretic. Well, I already have a hard time holding on to fluids and I get dehydrated very easily. Has anyone else taken this medication? What are the side effects, and how much do I need to worry about the fluid loss? I will be taking 100mg daily. Is that a large amount for this med?I would like more explanation on the free floating testosterone she was talking of, but am having a hard time finding the info. on the net, unless it is in medical jargon. Can anyone shed some light on this situation? Thanks in advance.April, with the facial hair and elevated testosterone, you most likely have Polycystic Ovarian Syndrome or PCOS. Do you also have elevated lipids, weight gain, irregular periods, diabetes, infertility or high blood pressure?If you do have these symptoms you need to see an endocriniologist that is up on PCOS. This condition is caused by elevated insulin or insulin resistance. A fasting insulin test, not glucose test. Also a side by side Glucose tolerance test and insulin tolerance test is important as well. The facial hair and elevated testi are symptoms of underlying disease and simply treating the facial hair will not treat the condition. If you don't have diabetes you can develop it as a result of your pancreas failing for pumping out so much insulin.I have PCOS without the facial hair, but with very elevated insulin. So I'm pretty up on it. Also you don't have to be overweight to have it. If you go to ob/gyn.com they have a full forum and information about PCOS, you could also just google it and read up on it to see if you fit the symptoms. I recently went on aldactone to get my orthostatic hypertension under control and got terrible GI symptoms from it. Hope this helps Quote Link to comment Share on other sites More sharing options...
april abbott Posted September 16, 2009 Author Report Share Posted September 16, 2009 thanks for the reply, arizona girl, but I don't have any of the symptoms you described. Just the facial hair, and I have had other scans/tests by endo. at different times. Total testosterone level is completely normal, but the free was "slightly elevated". No mention of pcos or any other medical problem was given to me on the phone. There wasn't even a suggestion that I make a follow up appt. I read up on pcos quite a bit before even going to the endo. because I was looking for a solution for the facial hair. My symptoms don't really match with that. I really don't understand how the symptom of "high free testosterone" was given to me as if it was a diagnosis, though, because that is just a symptom, not an explanation of why it is happening. I was told I need to start taking a new med. and they called it in to the pharmacy, without much explanation.This doc was recommended to me by my dysautonomia doc, and she said he sees several of her other patients. He is a reputable doc at a well known clinic, but I really don't feel like I got much info. As usual, I am off to do my own research on my medical problems while the docs collect the money. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted September 16, 2009 Report Share Posted September 16, 2009 Oh that is good! Glad you read up on it. So, you did have a scan of your ovaries and you did have a fasting insulin test done and they were normal? The only reason I'm asking is because you can still have elevated insulin and not have developed the other symptoms yet. When I was first sick I actually drop to 96 pounds and am fair haired and skinned. The only early symptom I had was slightly long menstrual cycles. My symptoms became more obvious in my mid-thirties and also after I was put on dexamethsone to treat my first misdiagnosis, mixed connective tissue disease, my symptoms really got bad. Even then I still didn't look like the typical pcos patient. The only way to rule it out for sure is to have the two tests I mentioned above. If your insulin is high it would explain the elevated testosterone and facial hair.You could also google thin pcos or something like that and see if you fit in more with that pcos group. Hope the aldactone works for you, it is suppose to help with that problem! Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted September 17, 2009 Report Share Posted September 17, 2009 The only reason I'm asking is because you can still have elevated insulin and not have developed the other symptoms yet.For that matter, you can have PCOS, no facial hair, and regular insulin levels. I'm thin, no facial hair, normal hormones. But ... I have ovarian cysts. And metformin makes my periods regular (I was going without for months at a time before.) I've read that in some people, it might just be the ovaries that are sensitive to insulin. Your insulin levels can be normal, but it's still too much for the ovaries. That's what it appears to be in my case.Amy Quote Link to comment Share on other sites More sharing options...
Rafiki Posted September 17, 2009 Report Share Posted September 17, 2009 April, were you seen at the Kirklin Clinic? I just had an appointment with an endocrinologist in the ob/gyn clinic there. When they sent me the packet of forms to fill out the return address on the envelope said Infertility/Reproductive Clinic. Since I am 51 and post-menopausal I was a bit concerned I was going to the wrong place! However the doctor told me he sees about 5 patients a week with disautonomia and seemed to understand the condition pretty well. It is annoying though when you get test results back by telephone without an explanation. I hope you get some answers soon. Debbie Quote Link to comment Share on other sites More sharing options...
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