Hi all!
First off, I don't post here much but this has been a place I have come to time and time again to look up information for years. I really value this message board and all of the wonderful perspectives and experiences here. :)
I was diagnosed with PCOS at age 24, about 4 years ago now (I'm 28), although I had a strong feeling I've had it since I was about 20, but at 24 is the first time I had health insurance so it was confirmed by my primary care physician the first chance I could. I've always struggled with weight and hirsutism. At the time I was diagnosed, I hadn't had a period in a year and a half. As treatment, I was given Apri birth control pills to regulate my period. The pill regulated my period and I shed about 15-20 lbs. I also start working out regularly and eating much healthier. I also started taking a wonderful multivitamin daily with flaxseed oil and vitamin B12. I felt so much better.
Flash forward a couple years later, and I still had hirsutism, even though it did lessen a little bit. My doctor prescribed spironolactone. I took it for a few months and loved it. My hair got so much lighter and my skin all over my body felt all around smooth for the first time in forever. But around fall of last year (2014), after a few months on spiro, I started to feel kind of sick. I also gained weight and didn't know why (my working out and eating happens were so on point!). I got off spiro because I assumed it was the culprit. Facial hair came back worse than ever (and still is).
I tried everything to lose the weight and nothing was working. I also started to feel a little off in general. I went to an acupuncturist for random pains in my body like back pain, knee pain, etc. Months of on and off seemingly random symptoms of fatigue, eye swelling, depression, nausea, chest pain, even ear pain. My primary care physician retired and I got a new one in March of 2015. I expressed to her my frustration with losing weight, and mentioned some of the other symptoms. I also told her about my ongoing hirsutism and how spiro worked for me but I felt crummy. She checked my ears and it was nothing. She suggested I get something like the Fitbit for my weight management (which I love haha), and she prescribed to me Vaniqa cream for my face to try. It was okay. She also said at some point in the next few months i take several different blood tests including testing my thyroid. She said not urgent so I didn't really take it seriously, given my busy work schedule and me traveling so much in the months after the visit.
Flash forward to late July on night, I was sitting with my mom watching TV as I felt my lip feel tingly and strange. I looked in the mirror and my lip was really swollen, particularly on the left side. It grew, almost in a cartoon-like way, as I looked in the mirror. I panicked and my father drove me to the ER because we thought it might be an allergic reaction to something I don't know I'm allergic to. After hours of waiting at the ER, the swelling actually went down before I saw a doctor. The doctor asked me a couple of questions and just said "yeah it sounds like an allergic reaction." Another doctor came by to confirm the first doctor's diagnosis. They told me to follow up with my primary care physician soon so I can figure out what I'm allergic to, etc. I went to my doc the following week, who agreed it was an allergic reaction and told me I may never find out the cause but referred me to an allergist anyway to see if she can give me allergy tests.
I went to an allergist the following week. The allergist took out a huge packet check list of symptoms and went through each one, asking me if I had experienced this or that in the past year. Examining my symptoms she said she had a feeling it wasn't allergies, but a thyroid issue. She felt my neck, and there was a huge nodule on my left thyroid. She ordered me several blood tests and an ultrasound. I got the tests and ultrasound done in a week, and went to see her to look at results. The blood work showed that my thyroid was not functioning. The thyroid peroxidase (TBO) antibody count was 2,666 (normal range is less than 60!). So basically, my thyoid cells were attacking eachother. The nodule on my left thyroid was over 4 cm. She said my blood work and symptoms that I've been experiencing for the past year lead her to believe I have Hashimoto's disease, a form of hypothyroidism.
I was referred to an endocrinologist who did a fine needle biopsy to see if my nodule was cancerous. He was very positive and said that the vast majority of patients with hypothyroidism and Hashimoto's don't have cancer. But alas, a couple days later, the results showed otherwise. I was diagnosed with papillary thyroid cancer. I was referred to an ENT doctor shortly thereafter, and on September 16, I had thyroidectomy. They tried to only remove my left thyroid where the nodule was and save the right, but the cancer spread to the right, so they removed the entire thyroid and a few lymph nodes. I'm currently undergoing radioactive iodine treatment.
I've been doing research and there seems to be a strong link between Hashimoto's/hypothyroidism and PCOS. I've also been reading up on gluten-free/sugar-free diets that help alleviate a vast range of symptoms of diseases like Hashimoto's and PCOS. I wanted to share my story to see if there are others like me who have had PCOS and thyroid issues as well and if so, if you can share your experiences or give some advice.
Thanks for reading :)
Shirien
PCOS, Hashimoto's disease, and thyroid cancer - my story
