View Single Post
Old 07-31-2012, 03:52 PM   #2
Jocee's Avatar
Join Date: Jul 2012
Location: Boston
Posts: 38

S/C/G: 248/204/168

Height: 5' 10"


Hi Lynn,

I too have Graves.

My symptoms were rapid heartbeat, tremor, excessive perspiration, irritability, insomnia, and panic attacks. Ultimately, my rapid heart beat is what scared the heck out of me as it lead to congestive heart failure -- my heart was beating so fast it became really inefficient and I would end up with asthma-like symptoms. I literally could not walk a block with out wheezing and I had a persistent cough and bronchitis.

I've always been one of those people who had a "high" metabolism and able to eat anything I wanted. I suspect Graves is the reason behind that and for years was fairly stable weight wise. As I became acutely thyrotoxic, I lost a ton of weight while eating anything I wanted in any quantity I desired. I also looked terrible. Friends were worried I was terminally ill with something. I was pretty scared too. I'm tall at 5' 10", with an athletic frame, and was down to 165. My partner says "jaunt and pasty".

My internist figured it out pretty quickly, and it took me another 3 months to get an appointment with an endocrinologist whom is experienced with Graves and who tries for remission before ablation or surgery. He prescribed methimozole which I responded to extremely well. He warned me that my metabolism would slow down, and that I would need to limit my intake of food and alcohol.

It's now 18 months later, and my blood work is normal (T4, T3 and TSH). Best of all my immune system seems to be healing (TSI Antibodies have come down by half). I'm sleeping normally, my heart rate is down to 75 BPM, I'm not shaking, nor sweating. I have not had a panic attack in months and was able to stand in front of 300 people to give a talk to without completely freaking out.

On the downside, I ballooned in weight, shooting up to 246. I kept eating the same portions that I was when thyrotoxic - a pint of ice cream here, a rib-eye there, a full bottle of wine here and there...... I hadn't listened to my endo. *pluuuummmp*

Last Christmas day was the low point. I had one of those random-caught-a-glimpse-of-my-self-naked-in-the-mirror moments. I didn't like what I saw. Later that day, I could not fit into my favorite Christmas outfit that I've worn for years. Finally, one of my kids gave me a cute top, which well, maybe I could have worn a year before when I was so sick. I cried for hours.

That evening I joined Weightwatchers. The next day, I started walking. It's now 7 months later and I have graduated to riding a bike around 100 miles a week. I walk everywhere else, trying not to use the car for anything except when the weather is bad.

I've lost 35 lbs, have toned up a lot, moved from a 24 to 18/20 and set a personal goal of 170. That will put me in the the top of the BMI for my age and probably a size 14 given my height. Lately I have been plateaued, so have increased my exercise and religiously count everything that I eat, while not eating my weekly allotment and "banked" exercise points. I'm beginning to think that my body is now hypothyroid, as my BP is the lowest it has been in years, I'm sleeping way to much, and I'm just not losing any weight doing crazy amount of exercise. I see my endo in two weeks, so we will see once I get the blood work back.

Sorry for blabbing on..... As you can see, we are not doomed, and while I am plateaued now I'm viewing it as a well documented short term issue.

Here is a few of pointers that you probably already know and are doing. If you haven't yet, moderate your food intake. Weight Watchers made me realize the ridiculous amount I was eating -- perhaps 4 times what my points were. Exercise has been a tremendous help emotionally - I'm doing things I have not done in many many year and that has given me some confidence to keep going. Physically, I may be big, but I'm liking how I look in the mirror.

Finally, I don't know how often you see your endo? I'm on three month intervals at this point, but he gives me three "orders" for blood work. Each month, I get my T4 and TSH tested. We then either email or talk on the phone to moderate the methimazole intake. If your low on T4 and/or high on TSH, then you may be hypothyroid. I've also keep a medical diary of sorts since I really got sick -- it has weight, emotional feelings, blood test results, and personal commentary. I've discovered that I feel best on the upper "normal" range of my T4 readings. That's when I have the best energy, and am actually able to lose weight. You're mileage may vary, getting the blood work done every 4 weeks have allowed us to vary the medication regimen.

Feel better


Last edited by Jocee; 07-31-2012 at 03:55 PM.
Jocee is offline   Reply With Quote