I would like to share my post which was a response to a previous post and I hope this makes an interesting topic to discuss that would also help people who are searching for answers to unanswered questions or are dismissed by medical professionals.
I was very thin all of my life yet starving myself to be lean. My thyroids were low for years as I starved but I dealt with immediate weight gain when I would try to eat normal, and I continuously dealt with extreme swelling and fluid retention. However the doctors said nothing was wrong with me, that it was in my mind. Does this sound familiar?
I continued to gain and lose weight, mostly the same twenty pounds. In my late thirties, it became almost impossible to lose weight and I continued to gain, still fluctuating, now with the same "thirty pounds" coupled with extreme exhaustion. I also struggled with serious fluid gain, sometimes ten pounds over the course of a weekend. Soon I would only lose the ten pounds of fluid I would gain but no more.
The swelling in my face and eyes became worse and worse combined with extreme exhaustion, muscle, joint and tissue pain and a steady increase in weight gain. In my early forties I had gained a full forty pounds. Tests showed a low thyroid but a relative normal TSH and my symptoms worsened. Within the course of three more years I had gained another twenty pounds or more.
My thyroid levels came to an all-time low as well as my TSH. My thyroid antibodies were fine. I continued to swell, gain weight, live in pain, and was overrun with exhaustion and allergy/asthma symptoms for years. I was quasi-diagnosed with Lyme disease, which I didn't have, only postponing a real diagnosis.
Finally seeing a very qualified endocrinologist saved me. He checked my insulin levels which no one had bothered to do before inspite of my glucose numbers slowly rising. My insulin was very very high with only a slightly high blood glucose. However, I knew my blood glucose was uncharacteristicly high for me for years as it had always run low. So going up those thirty points didn't alert the doctors as it was then only slightly high between 110-120. There had to be a reason for this rise although no one had the sense to question it.
They didn't question the continued dropping of my thyroid levels either, although I knew that wasn't normal. My endocrine doctor also considered a pituitary tumor or adreanal tumors which would indicate Cushings Syndrome. However, the blood results of the cortisol and adrenal tests were normal to only slightly elevated and pituitary MRI and adreanal gland ultra sound and CT scans were normal.
He also did testosterone blood tests. The testosterone level was very high. This indicated PCOS, along with my other symptoms, as I was also responding to thyroid meds but at a much higher dose than previous doctors had prescribed. If you have a pituitary tumor, or Cushings Diease/Syndrome, my understanding is that your TSH, T-3 and T-4 will not respond to the medicine.
So with high testosterone, high insulin, negative pituitary tumor and adreanal tumor tests, slightly elevated cortisol levels, low TSH, low T-3 and T-4 levels, weight gain, bloating, allergic reactions, severe facial and tissue swelling, water retention, extreme fatigue, heart racing, and pain, my diagnosis was Polycystic Ovarian Syndrome.
Having had a partial hysterectomy many years before, I didn't have issues with infertility or irregular periods. I was also able to conceive three times at very young ages, all before I was twenty-two years old. Many doctors pick up on PCOS from infertility and irregular periods alone.
I thought it worth telling you my story in the case you are still dealing with symptoms that are unresolved. Metformin, 2500 mg. a day along with testosterone blocking meds like Spironaldactone, (also a fluid pill) twice daily, combined with Synthroid and other fluid pills, helped me to lose the sixty pounds I had gained and keeps the swelling and bloating down.
I dieted with a very healthy low carb low fat/healthy fat whole grain diet and drank a lot of water, kept the alcohol to a minimum and did quarterly blood tests to monitor where my body was metabolically. I lost the initial twenty-plus pounds of fluid immediately.
I was on Metformin XR at the time which did little for weight loss however. I was switched to the normal Metformin and began to lose weight instantly. In the beginning, up to five pounds a week. Then a continued two pounds a week for many months. I am now 131-135 pounds and for the first time in my life, I stay at a consistent weight without the ten pounds of fluid/weight gain I would gain in a weekend alone, when I would just eat normal food. I would like to lose ten more pounds but I am very satisfied where I am and I am able to eat real healthy food and at least not gain. I am in my mid-forties and my figure is back, (returning) so I am starting to resemble my former self.
My biggest issues are allergic reactions, allergic asthma, and heart racing. I think the heart issues are a result of the PCOS going untreated for so many years. I recall the swelling began back in my mid twenties and I had very irregular periods in my teens. These things are indicators but were in no means enough of a warning sign to indicate PCOS all of those years ago.
All people with PCOS are not overweight, in fact, I was very lean all of my life, although due to severe dietary restrictions as discussed earlier.
We are all different and unique so our symptoms will most definitely differ which makes this interesting to discuss and all the more reason to share with one another. If I can help anyone out with my story it will make this Disease a more worthy cross to bear.
Best wishes for a happy and healthy life and for finding the answers to those unanswered questions. Just remember, you are not alone in this, and you are worth the time and effort to get your health back, even when things seem hopeless. Don't give up and don't accept answers that are dismissive and continue to offer no help. You are worth it!