My Story - Personal Stories - Living with Graves Disease


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My Story

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#1 DK1984


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Posted 16 October 2013 - 04:54 AM



I'll try my best to tell my story in english. Hope you understand it :)


In my childhood/teens I've always been a skinny child with a huge appetite. I enjoyed being able to eat anything I wanted without gaining weight (actually I think I took it a bit for granted)


In August 2005 in an age of 20 years I suddently had to move 130 km away from home to start at the university a year before planned (I should have had a year as aupair in Berlin starting november 2005 but it failed in the last minute so I had to start at the university immediately). This ofcourse was I huge suddenly upheaval for me, which later should show to be "fatal" to my later disease.


So I moved away and started at the university September 2005. Soon I started to struggle. I found myself in need of a lot of sleep to make it through the day and I couldn't seem to get back to the good condition I had been in before a long and lazy summer holliday. Before the holliday I could easily play a full time handball match (2x30 minutes) and now I was struggling just to keep running for five minutes... It was so frustration for a competitive person like my self. My hands and legs were shaking like crazy. I had to stop making jewelry which was my hobby at that time because my fine moter skills was off. I couldn't put my foot on a chair to tie my shoe laces without the entire chair shaking. I couldn't stand still upright for two minutes without my knees shaking. I felt a constant tingling in my entire body like you do just before taken a final exam in school. From time to time I got severe palpitations, especially when I was still in bed. My hands and feet were constantly clammy of sweat (actually I had struggled with rash between my toes because of sweaty feet since my early teens). Whenever I spoke with my mum on the phone she thought I was crying because my voice was slightly shaking all the time. My eating habits changed too. I was eating far more than before and was constantly feeling hungry. I typical dinner for me could be two large pork Chops, two whole corncobs, rice and 500 grams vegetables. And two hours later I would feel hungry again. I slowly started to gain weight (about a kilo a month). All of these symptoms was frustrating me but I never once thought of going to the doctor.


Then my mom came to visit me for my 21st birthday in November. It had been a few months since we last saw each other and right away she knew that something was wrong. She discovered that I wasn't able to walk and talk at the same time because I had so much trouble breathing. She was SURE I had asthma (my dad has asthma). So she sent me to the doctor and the next day while I was at the university she went to the realtor and bought a new appartment for me to live in to get me away from the basement appartment I was living in at that time. She was sure that it was the appartment, that had made me sick.


So I went to my doctor. The same moment I went into her office and she shook my hand and saw my shaking she knew what was wrong with me. She ran a bloodtest and the result showed, that my metabolism was four times too high! She sent me home with 600 mg Thycapsol a day and within the first month my metabolism was halved. I was told, that it is a disease you can be genetically predisposed for but it needs a trigger to burst out. The trigger can be sudden and dramatic changes in your life. Today I am convinced that it was the sudden move away from home that triggered my disease.


In early January 2006 I was hospitalized for a few days where they ran some tests on me and from that moment the hospital took over and my own doctor's role became smaller. I ran weekly bloodtests to keep my numbers under close surveillance. Soon I began to get a combination of Thycapsol and Eltroxin to try stabilizing my metabolism. My hands and legs stopped shaking and the tingling feeling slowly left my body. My voice got more firm and my hands and feet wasn't sweaty anymore (I even got rid of the rash between my toes). But I still had trouble breathing and my appetite didn't change.


The rapidly declining metabolism had some major consequences. Firstly I started to gain weight realy quickly. By early April 2006 my weight reached 78 kg (I weighted about 60 kg when I moved away from home and about 63 kg when I first went to the doctor in November - I'm 1,72 m high). I didn't recognize the now slightly overweight girl in the mirror. But even worse than the weight gain was the psychological effects of the sudden drop in metabolism. I got even more tired than before and depressed. I would cry every night for no particular reason and I hadn't got the mental resources to see my friends or even do my homework. I went to class and struggled to stay awake during the lectures, then went home and fell asleep on the couch in front of the television. I slept at least 10 hours a day and yet I struggled to stay awake the rest of the time. I couldn't cope with family dinners or even keep my apartment clean and do the dishwashing.


As time went by and my metabolism got more stabil I started to feel better. I went on my first ever diet to lose the weight I had gained and my mental state slowly improved. The troubles breathing went smaller but they were certainly still there. My test results were fine and the doctors said, that if they were still fine in two years they would scale down my medicine and I had a good chance of a full recovery. I was happy and embattled to win. But soon my test results started to worsen and my symptoms started to reappear. Especially the palpitations were worse than ever. Though my numbers had been stabil for a long time and I hadn't changes my meds my metabolism suddenly doubled in one month. The doctors recognized that they simple couldn't control what happened in my thyroid with the meds. My meds were changed and once again my metabolism was stabilized. This happened several times in the next two years. And every time my meds were changes I could count on, that within the first two weeks a new psychological down period would start and it would take me a couple of months to fully recover from it.


This let me to lose all confidence in the doctors ability to ever fully control my thyroid. And I knew that even if I got healthy some day and could drop out of the meds I would always live with the fear that the disease would come back. Together with my endocrinologist I therefore decided that I wanted my thyroid removed. This operation would also once and for all remove my breathing trouble because it was caused by my thyroid pressing on my lobular. But at that time my disease was at one of its high moments and operation was therefore risky. So I was sent home with a yet an other change in the meds and yet another psychological down period as the cost. I was told to wait until the disease was at a low point and then I would get my operation.


I finally got my operation in March 2009. The operation went well and after a few days I was sent home with instructions to tage 700 micrograms Eltroxin a week. I told the nurse that I couldn't understand how that could be enough since I got 500 micrograms together with my Thycapsol before the operation. But I was told that it was the normal amount for a person at my age and weight. So I did as told. I ran monthly blood tests and had an appointment with the endocrinologists four months after the operation. But I started to feel very tired all over again and started once again to struggle with my weight. But I never heard anything from the endocrinologists after having i blood test so I thought everything was fine and that I was just supposed to get a grip.


But as I went to se the endocrinologist she looked at my test results and then looked at me with a almost motherly concerned look and said: "You are not feeling very well are you?" And she told me that my metabolism was way too low and sent me home with a significant increase in meds. This of course let to a minor psychological down period but luckily these are far milder when the metabolism is increased than the other way around. It almost just means a months time of being a little more tired than usually and maybe one or two nights of crying. My meds were hereafter increased a couple of times more before they finally two years after the operation found the level I am still on today and now has been on for more than two years which is 1900 micrograms a week (almost three times as much as the nurse first sent me home with!!).


I am now running a bloodtest every six month and once a year I am meeting with the endocrinologists. Last time I was there (March this year) I was told that my numbers was so good that if they didn't worsen in the following year I could stop seeing the endocrinologists and solely let my own doctor to the necessary checks. So I am very excited what the message will be next March at the next meeting with the endocrinologists.


So today I live as a fully normal 28 year old with the small but of taking some meds every morning, a narrow scar on the neck and a slightly increased need for sleep that normal. And my weight has finally found a stabil level around 65 kg. I feel amazing :)


#2 jodileanne


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Posted 08 November 2013 - 12:21 PM

Thank you so much for sharing your story. I enjoyed reading it.

#3 StCeciliasGirl


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Posted 19 November 2013 - 12:47 AM

This put me in tears! Thanks for telling us. is for educational purposes only and should not be used as a substitute for consultation with your health care provider.

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