Gina Lopes Langone, Thyroid Thrivers
Graves’ disease (Graves)
I am not your average, run-of-the-mill gal, I have Graves disease!
Let me tell you a little about Graves. Graves disease for some, is like, a menopausal woman on steroids during a psychotic episode. Heat intolerance, hand tremors, loss of hair, weight loss, weight gain, insomnia, brain fog, Graves’ rage and uncontrollable emotions. These are just a few things we deal with. I am Graves’ Disease, unfortunately!
I have walked into a room 5 times before remembering why…..Graves brain!
The summer of 2007 should have been a great time. I just got married and a month later we pcs’d (military for moved) to Colorado to start our new life together. Well, instead of it being honeymoon bliss, it was more like “Murphy’s Law.” If it could go wrong, it did. Our military housing had been given away. That meant no place to live so, we decided to buy. With the stress of looking for a home, finding one, moving, marriage, a teenager, my best friend being killed, and me thinking I had altitude sickness, on top of everything, made what was supposed to be the happiest, most blissful time together, well, not!
Hindsight Being 20/20, I Now Know That Stress is a Big Trigger for Graves Disease
I broke out in hives, my hair was falling out, I had put on weight and my heart rate was fast. I made an appointment and got in to see the doctor. I spoke to him about having my thyroid checked. My friend had been diagnosed with Hypothyroidism earlier that year and I had some of her symptoms. He asked me why and what symptoms I thought I was having. I told him “my hair is falling out and I’m clogging the tub drain.” He said, everyone loses hair. then, unbelievably, he asked “Are you losing hair from your legs?” Uh, I am a woman. Apparently, being a man, he forgot that women shave their legs and under their arms. Amazingly, he then had the gall to ask me, if had lost hair in my “private areas”, too. It’s September in Colorado and I’m in shorts. I had shaved that morning.
He really didn’t think there was anything wrong with me. So I politely told him to test me anyhow, you know, just for shits and giggles.
I was crying at Hallmark commercials. I had never been an emotional person. I get Graves disease and suddenly, I’m doing the ‘ugly cry’ over what cereal to buy.
I don’t know about you, but a blind man could see something was wrong with me, but my doctor couldn’t.
Reluctantly, blood was drawn and then I waited. I waited some more. I’m still waiting. By the end of October, I saw my primary doctor and he scheduled me for an uptake exam. I had the Uptake done in November and finally, saw the doctor at the end of December. It was official, I had GRAVES DISEASE!!!
Between the months of September to December, I had been put on a Beta Blocker, nothing else. I also gained 20 pounds, in those few months. How was that possible? I have a disease that is supposed to make me lose weight. At that point, I had done a little research before I saw the doctor in December. I read that 20% of people with Graves’, gain weight. I wanted to ask the doctor about the weight and see what he said. His answer to me was, Drum Roll Please……. Apparently, your body didn’t read the book on how to react. WTH?
I got an endocrinologist referral. Then, I found a new primary care doctor.
Now the Graves Ride Really Begins
I met my endocrinologist in January of 2008. She immediately put me on Tapazole (an anti-thyroid medication) and told me what to expect and what to look out for. I needed to watch for Jaundice, due to liver issues that the medications could cause. If I had a temperature of 101, for more than three days, I should go to the ER and get checked, because it could be Graves. Could be?!
I was never told about the rushes I would get from, not only my thyroid hormones, but every other hormone in my body. For the next two years, I didn’t have hot flashes, I had heat waves. I was suddenly crying at T.V. commercials, when before, I would have to lose a limb to get me crying. Sleep, who needs sleep? I was averaging between 1-3 hours of sleep a night, for two years. It was crazy. I looked like I had spent a day in a sauna. But I was fine, according to her.
My first endocrinologist didn’t believe in T3 medications. She also told me that since my levels were ‘in range’ and that I was fine. Meanwhile, I was sweating like a child molester in prison general population, while sitting in her AIR conditioned office.
Remember What I Said About Stress?
Well, those two years were filled with it. My husband was home, then gone with training, then gone for a year in Iraq. A month after he left, my mother moved in and I was dealing with all of her medical issues. During this time, I was sent to see a Cardiologist. I had been told by my endocrinologist, that my rapid heart rate couldn’t be from Graves, since I was on medications and my levels had gone down. Yes, the levels went down, then up again, then down, well you get the point. After the Cardiologist was done with me, I was told my rapid heart rate had to be from the Graves. Hmm…..Who’d have thought?! He put me back on beta blockers.
In November, of 2009 I had had enough. I couldn’t take the ups and downs of all the stress, anymore. I scheduled RAI. I took the pill in January 2010 and two weeks later, my neck swelled to the size of a melon. Not a cute little small one, but a large Honeydew-sized melon. I was able to see my 20th doctor on post, immediately. He was honest and told me, “I’ve only had one other patient who had RAI and this never happened, let’s see what we can do to fix it.” After some calls, he got back to me and decided to put me on steroids for a week. In less than 24 hours after finishing the prescription, my neck was now on fire. Off to the ER I went, to try and rectify this intolerable situation. The doctor tells me that he had had one other patient who had RAI and they didn’t have any issues. Did he really just say that to me? But, was going to figure this out. After a lot of tests and a few hours, I was told I had a radiation burn. Radiation burn….just my luck! Back on steroids for another week. Fun!
When I finally saw my Endocrinologist, I was told both reactions are very rare and that’s why I hadn’t been able to find any information online.
That’s when I started my search. I wanted and needed to find others, like me. I found a few online sites, but they weren’t my cup of tea. I did get some good information, but I wanted to talk. Eventually, I found a group on Facebook and realized I wasn’t alone. I found people who understood me and what I was dealing with. Disappointingly, the group closed and I had to move on. Moving on meant keeping those people I had found, close to me. So, I started my own group on Facebook: Graves Disease, what everyone should know. Follow Gina on her journey with the Thyroid Patient Symposium 2015, 15 cities around the country. Bringing Thyroid Patients together. Face-to-face, up close and personal to offer support, create connections, share options and provide inspiration!
I have been Hypothyroid, not hyperthyroid, since March 2010. What a crazy ride this Graves disease has been.
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Questions or anything to ask Gina about her journey with Graves disease? We want your thoughts in the comments section–Please!