question that I posted in the wrong thread...

lltj70 · 12-08-2008, 03:35 PM

Being sent to the endocrinologist- what should I ask?

I was told I had PCOS in August of 2006. NOTHING except birth control pills and aygestrin was given to me to help me with the symptoms. I lost a lot of weight exercising and on Weight Watchers- but after two years of major events occuring in my life and after stopping the exercise I was doing (working out two to three hours a day- my body just cant take it anymore) I am gaining weight (about 60 pounds in two years), skipping periods again, and feel horrible... tired, and honestly, just not myself.

I refuse to go back on bc or have an iud- which my obgyn recommends. She also wants me on depression meds... come on! I have a wonderful BF and life is actually the best it has been in a long time- so that is not the answer.

I have called the doctor and asked if they can run what tests they can as soon as possible... just dont know what to ask for.

sillymistress · 12-08-2008, 03:52 PM

I understand. You can feel better... I struggled with depression issues much of my life only to find out that they were most likely pcos related.

Have a complete hormonal rundown: testosterone, dhea, lh/fsh, estrogen, progesterone, cortisol, pretty much everything they can test for.

You also need to have your insulin levels checked for insulin resistance. Sounds like your doctor is not well versed in pcos issues and being on metformin or something similar will aid in weight loss and most likely manage hormones and moods long term.

Don't ever feel alone in this. I know there are those moments where you feel so defeated by your own body and lack of control in it.

See if you can look up on the doctors list here someone that is good in your area. Its worth going to one who knows their stuff.

lltj70 · 12-08-2008, 04:28 PM

Silly- I am just tired of playing games with these doctors. I have been going to an endocrinologist for two years and all they tested was my thryoid- why have they not done all of the rest already? It is ridiculous....

sillymistress · 12-08-2008, 06:21 PM

I am a 'thin cyster' who works in the beauty industry and is able to maintain a non pcos look (although I have acne and hair growth I have lots of tricks to keep it hidden and in control) so I went to several doctors before anyone believed me. I was told "you are not pcos you don't have the 'look' that everyone with pcos has". I also don't have the correct ratio when it does come to my hormones so I was told by some doctors that I simply don't have pcos. I honestly was beginning to think I was nuts.

I kept trying other doctors and getting myself more educated and finally found one that told me that the proof beyond anything else is in the sonogram that I'm covered in cysts and the test results are only secondary to that.

Keep trying. Get educated. Know your body and symptoms. Don't give up. You are not crazy and don't have to live with miserable symptoms that can be eased.

It took me several months to get a script for Glucophage and I did everything I could until then as far as diet and excercise to ease my symptoms. Low carb, no refined sugar diet, tons of protein and produce.

Use your anger and frustration into empowering yourself to do all you can on your own and be very straightforward with doctors.

lltj70 · 12-09-2008, 06:26 PM

I called my endocrinologist that I have an appt with on Dec. 22nd- and he does not even know why I am going! He told his nurse that my thryoid was within limits and my iron too- so I did not need to come in on Dec. 22nd... I went off! I told her it was not my thyroid I needed checking- it was the stupid PCOS mess! No period for two months (again!) and since I will not go on BC pills or have an IUD put in... and not responding to the "mild meds" that the OBGYN had put me on... (they were making me sick and still no period with it anyway)... something needed to be tested--- not to mention the fact that I am always tired, gaining weight, pains in my right hip... not to mention all of the regular mess with PCOS (if their is anything regular about this stupid disorder!).

I was diagnosed in the hospital with this disorder in 2006- and nothing has been done about it. Take BC and depression med- that is the answer to my OBGYN. Come on! I am the happiest now with my BF I could ever be! I love my job, love my friends- so what the heck is wrong?

I went off on the OBGYN nurse and the endocrinologist nurse- I want answers... and by God I will find them somewhere! I told the OBGYN office that I want my records so that if they can not find someone to find out what to do- then i will find someone. I know that this is a rant- but I am tired of being sick and tired of this mess. Life is too short to deal with incompetent people... and if I have to go out of state to find someone to help me- I will do it. Funny thing- I am in North Carolina and we have some of the best hospitals.... but when you need help... it is like running a race in circles.

TVproducer · 12-09-2008, 06:49 PM

I had to do the same thing! I went from doctor to doctor until I found someone took be seriously. I needed someone to believe me that my weight gain was a sympton not that i binge eating at night in secret. Just keep pushing! You have to be your own advocate and you have the right to ask for tests to be done. Hang in there!

siamlovex2 · 12-12-2008, 01:48 PM

It took me a long time to get diagnosed with PCOS as well. Like TVproducer, I went from one doctor to another for years, most who told me that I was "okay" and my "symptoms" were caused by depression, not by a physical illness. Just a few months ago, my dietician referred me to an awesome internist who took me and my list of symptoms seriously and, within a couple of visits, diagnosed me with PCOS. She put me on Metformin and I'm already starting to feel better after two weeks of being on it!

It may take you going through a few doctors before finding the right one. I, too, am not obese (20 lbs. overweight, yes, but not obese) and don't have the excessive hair growth on my face, so I don't have the typical "PCOS look" either.

lltj70 · 12-12-2008, 03:04 PM

another update... went to the gyn and asked for my records. it is mentioned (PCOS) four times in the record... and even noted that I was given different tests and failed them (hormone levels not on par was even noted in the notes) so why was BCP the only answer? Does not make sense. At least I now have some idea of where to go. I am waiting till next week to see if the endocrinologist nurse calls me back. If not, then to them I go for my records. I am taking this disorder on and somehow will fight it. I am going to get myself in shape again (only time everything was "half-way regular" was when I was losing weight (weighed then about 200lbs which to some is still overweight, but when you come from 430 lbs- my body was in better shape physically. I am 50 lbs over that now... and it is going crazy again... so got to get my arse in gear and lose this weight.) If I can find something to help cure these symptoms... I will do it!

In a better mood though... kept thinking... am I crazy? Did I imagine them telling me I had PCOS in the hospital? I have all the symptoms, but till I saw it in black and white... I was not sure. I have a problem, but it does not have me...

randi_80 · 12-15-2008, 01:12 PM

If you haven't already, you should look on the finding a good doctor thread. A lot of ladies on there post good doctors in different areas!! I have been to a lot of doctors over the past ten years....some good...some horrible. If you are interested in alternative remedies there are also resources on here for that. I have been going to a homeopath for about 7 months now and having really wonderful results. I have also heard great things about accupunture. Both are energy based practices.

Good luck and I'm glad you are taking charge with your body!!