Roller-Coaster-Ride-Of-Life-With-Graves-Thyroid-Disease
Britney Robinson, Thyroid Thrivers
Thyroid Nation

 

41 years young
Kentucky, USA
Graves Disease
Diagnosed in 2000

 

 

My journey started in late 1999/early 2000. I had just finished my BS in Financial Planning and moved to another city to start a career as a stockbroker, in a call center. A few months after I moved, I noticed I was starting to get sick from every little bug or virus that was going around. Even more so than other people around me and even those that I worked it. I had also started to put on unexplained weight. Immediately, I attributed it to a new and different living situation and the stresses of a first ‘new job’.

By the fall of 2000, I had put on 70 pounds, and I was starting to have really bad panic attacks and anxiety. I also suffered some weird issues like trembling hands, at times, and insomnia. November or so of 2000, my grandfather passed away. At that point, I was only sleeping 2 – 3 hours a night.

Roller-Coaster-Ride-Of-Life-With-Graves-Thyroid-Disease

Ruler of the house, SELENA!

I went to see a doctor about these strange new symptoms and he said it was ‘stress and grief’. The sudden extra pounds I had put on, were also explained away with the stress diagnosis, as well.  A week later, the sleeping pills he gave me weren’t working and we upped the dose. Unbelievable, a week after that and still no sleep, we switched to a different, stronger pill. Still nothing!

Concentrating, or even thinking, was almost impossible with no sleep, so I had to take time off of work. Feeling wired and tired all at the same time, all t Not to mention I continued to steadily gain weight. Finally, after about a month of this, my doctor thought to test my thyroid. He thought maybe with the weight gain I was going hypothyroid. Nope! Test came back that my levels were 4 times higher than normal, I was told, hyperthyroidism.

Within a week, I had an appointment with an endocrinologist and a Graves’ disease diagnosis, under my belt. Lucky me! We tried anti-thyroid drugs, several different doses, and in a few months, my levels did NOT go down, at all. My heart rate was 120 bpm at rest, on a good day. My blood pressure was through the roof. I was sleeping maybe 1 hour a night and my partner, at the time, said he watched me try to sleep and I would just shake the entire time I was unconscious.

Taking temporary disability leave from work was necessary since I had to give up my car keys. I couldn’t even drive safely. My endocrinologist finally said, we have to do something more permanent, the drugs aren’t working, and you are headed for stroke or heart attack, at the lovely age of 27. Surgery was apparently out of the question, both due to high amounts of thyroid that wasn’t coming down and risks at the time, of nicking vocal cords, making it possible that I’d have NO voice.

Reluctantly, I chose RAI and swallowed that poison pill.

 

I was told that after I swallowed that horrible pill, I’d gradually come down to being hypothyroid followed by a prescription of replacement thyroid hormones. Then, I’d be ALL better. They LIED!

I went from hyper to hypo in less than a month! I was back in a few short weeks complaining that now I was sleeping 16 hours a day. I couldn’t get the strength to lift myself up, without help. I had my thyroid tested again and this time it was very hypothyroid. Apparently my uptake of iodine was so fast that I killed off my thyroid within a month. So, thus started the ups and downs of trying to find a good thyroid replacement dose. I started on Synthroid but it didn’t agree with me so, after a year, I switched to Levoxyl.

Since then, I’ve been on a roller coaster ride of different doses, always making sure my pills were made by the same manufacturer. Once or twice, they’ve added Cytomel into the mix, but I’d usually go medically hyperthyroid.

Roller-Coaster-Ride-Of-Life-With-Graves-Thyroid-DiseaseIn the meantime, I moved to another city, managed to get a second degree in Computer Networking Systems, associates this time, and started a new career. I also met my wonderful husband in 2004 and got married in 2006. During this time I was working as an IT systems admin for a succession of companies. I kept trying to work full time. Some years, I did better than ever. Eventually, it started going downhill in 2007.

I was so tired I would go home and take a nap after work, eat dinner, then go to bed, with weekends hardly venturing out of bed. I couldn’t keep up with my own life, and I was so tired at work and had so much trouble concentrating, that I was making mistakes. Once again, I was catching every little infection out there and missing 3-4 days of work, on average. Multiple times along my career path, and despite the great work I’d done there, I would be asked to leave for attendance reasons. I even had doctors notes for every single absence. All of the companies knew I suffered from an autoimmune thyroid disease of Graves.

Finally husband took me aside in 2010 and told me we had to do something about this, he was tired of seeing me miserable and sick all the time. We rearranged our finances, did a lot of belt-tightening, and I quit my job in February of 2010. I took 6 months off, we were hoping maybe I would recover and be able to go back to work. I wasn’t able to do so. I did manage to start working small part-time jobs, building up my stamina.

These days, I do several things. I use my computer knowledge to help about a dozen elderly ladies with their computer issues, as one part-time job. Additionally, I help out a few people with their taxes and I do retail merchandising.  Part-time, of course, where I can schedule in breaks as needed. I’m starting to get back my sense of self.

Last fall, it was suggested as a way to get out of my own head, to start collecting stories of how other thyroid patients were handling things. Those that had mild issues to those with severe issues. This turned into a joint venture with my husband where we have now been working on a book to put those stories together, with the idea that we could show the human side of what thyroid disease can do, from the changes in body and mental health, to loss of relationships, income and self-esteem that it can take away, and to also share the insights we have about ourselves, when faced with hard choices. (Coming Soon)

Roller-Coaster-Ride-Of-Life-With-Graves-Thyroid-DiseaseBesides working on this book in my spare time, I now help moderate several Graves disease and general thyroid disease support groups online. Lately, I have also added myself to a wonderful team who is working to bring a Thyroid Patient Symposium, to 20 cities, in the US.

I am starting to reclaim me and it’s a wonderful feeling.

I just want people to know they are NOT alone and there are people out there who will understand your journey. If I can help a few people, to not feel alone, like I remember feeling at first, during my thyroid journey, then my work is done.


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