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!
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alyshablack
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Your post would be a lot easier to read if you put paragraphs in. Don't forget we're all struggling in some way, that to me is just a massive block of words that I find impossible to read so I had to give up after a few lines.
Thank you for your interesting and informative story. Sometimes we get so thyroid-focussed on this forum (after all, it is a thyroid forum) that we don't always look for answers 'outside the box'. Do you know whether your 2500mg dose of metformin is a high dose or a low one? Was it the high glucose and insulin that prompted the metformin treatment, or did you have an ultrasound to confirm the PCOS?
The most surprising thing that I learned was that PCOS is not an Ovarian disease brought on by cystic ovaries, it is an endocrine disorder and cystic ovaries are a common problem with this disease. The hormonal issues creates the problem of insulin resistance and high testosterone. However, in saying that, I was diagnosed with cystic ovaries when I was 23 years old. Having a partial hysterectomy was thought to help alleviate the pain of the cysts coming in contact with my uterus. I had no clue there was a disease involved. The Metformin is the highest dose allowed per day which does two things. One, it blocks testosterone which is created in abundance in the ovaries due to the hormonal inbalances and two, it makes your cells less resistant to insulin, allowing the sugars to be used by the fat cells to create energy, in effect lowing insulin and blood glucose levels. I hope this explanation is helpful to you. Please feel free to ask if you have any questions.
Thank you for sharing your information. You seem to have a very good understanding of PCOS. I agree with that report. I know all experiences are different, as we are all different. I enjoyed reading.
I believe the thought process was once I responded to the thyroid meds and the Metformin and fluid pills, there was little question what was wrong. The high levels of testosterone is the real indication of PCOS from my understanding. However that step was discussed and the next choice for testing. I'm glad to still be learning about this disease.
I was just thinking that the PCOS might be caused by the hypothyroidism, rather than the other way round. Not that it makes much difference to the treatment, I should imagine.
Thanks for reposting this Shaw's. I think that it could well have applied to me as I can trace hormonal issues throughout my life. When I was a teenager I was lucky if I had one period a year but instead of asking the doctor to investigate my mother used it to shout at me and tell everyone that I was bad.
I had my first daughter when I was nineteen and it was only when referred for fertility treatment that I learnt, following surgery to do a wedge resection of my cyst filled ovaries that I was told that at 28 I had only ovulated less than the four fingers he was holding up. I carried on with fertility treatment doing daily temperatures that were so low that I could barely get them on the chart they gave me. Following a second wedge resection of my ovaries I did start to ovulate more frequently although I was ovulating early with my temperature barely rising.
I had another daughter followed by an interuterine death and an early birth of a baby who died before having my son by AID. It was about four years after my son's birth that the weight started to pile on and although the other symptoms were put down to having young children eventually my GP tested my thyroid. After several tests with a rising TSH though at this point just outside the upper limit of the range she started my on levo. She was not entirely convinced though and said if I started rushing around to stop the tablets and see her again. She only started me on 25mcg but it resolved some symptoms quickly and when she did the blood test after six weeks the laboratory said I was on too little and so she increased it to 50mcg. It was eventually increased to 100mcg.
I was made redundant at the end of 2012 and as I had two knee replacements by then I started looking at my thyroid because eating a good light diet and exercising as much as I could wasn't making a difference. In 2011 I had lost over three stone between January and September with knee replacement surgery in the middle. I told my GP who just shrugged and although at that time the TSH was lower there are no other tests to look at. As the TSH increased so did the weight and I have put two stones back on so am now six stones heavier than my natural weight and have recently had a hip replacement so that is three joint replacements in nine years.
I did get my levo raised to 150mcg but the FT3 was decreasing so I have now sourced Tiromel and am starting to self medicate. Currently on 125mcg levo with 12.5mcg Tiromel and have just received a BH blood test to see where my FT3 is with a view to increasing.
I have looked at the old paper notes that my surgery holds and I know that some are missing while those there are light to say the least. I was told years ago that my fertility records at the hospital were microfisched so I'm not sure that it is worth getting them at the cost so just concentrating on getting me feeling as well as I can at the moment.
PCOS causes your body to produce more insulin in response to the cells changing and not accepting Glucose in the cells to be used as energy. High insulin means fat storage and a slow metabolism.
Also high androgen levels, testosterone for example, causes your body to produce more insulin creating a viscous cycle of weight gain. The only way to achieve weight loss is through insulin reducing meds and testosterone blocking meds, in conjunction with thyroid meds.
Low thyroid levels also increase fluid in your tissues adding to more weight gain and a bloated look. The thyroid is no longer able to regulate the hormones that affect fluid levels.
Also, blocking testosterone levels should allow the estrogen and progesterone levels to rise, helping with ovulation, regulating periods, and helping the cysts to go away.
So in my opinion, unless you take Metformin, and aldactone in conjunction with thyroid meds and other fluid pills, weight loss will not happen.
Best of luck to you and I hope this information will help also.
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is this TSH Low (0.37)?
Low FT4, Normal TSH, Fluctuating FT3
Low Adjust calcium and changed ranges for T4 and TSH
TSH low the rest normal
When to test TSH under combi (LT-4 / LT-3) therapy
