In July 2015 I was diagnosed with Graves’ Disease. A year before, I knew something was wrong with me. It started with edema in my legs and feet, then exhaustion, high anxiety, feeling sick all the time, and insomnia. Every joint in my body hurt. I went to see my family doctor countless times and was eventually diagnosed with fibromyalgia.
Cindy McLaughlin, Thyroid Thriver
Diagnosed with Graves’ Disease in 2015
The doctor didn’t believe me
Other symptoms persisted so I started researching, and it always led back to thyroid issues. I would tell my doctor this, but she would just check TSH and say that everything was normal. I was frustrated. A few months before my Graves’ diagnosis, I started sweating profusely, my body was shaking and my resting heart rate would sometimes be 120bpm. My doctor still refused to believe I had a thyroid condition. More research led me to discover antibody tests. Lo and behold! There was a problem with my antibodies. My family doctor sent me to an endocrinologist, who also didn’t believe my symptoms, but who decided to do more advanced antibody tests.
Three weeks later, I got a call saying that I had Graves’ Disease and that I needed radioactive iodine treatment. Nothing was explained to me, nor was I offered any alternatives. On July 23rd, 2015, I took the radioactive iodine, and three weeks after that, the real nightmare began. No one had told me what to expect or what would happen or how long it may take. Hypothyroidism hit fast and hard. Still, I waited another week to take a blood test because I was told to wait four weeks.
I was scared
A few days after the blood test, I got a call and was told my thyroid had died: there was no more function at all. The endocrinologist still just gave me a prescription by phone for 150mg of Synthroid. She did not arrange to see me to explain what I was feeling, or what to expect. No one took the time to explain anything to me. I was scared.
I could barely get out of bed and walking seemed impossible. Life, in general, felt surreal. The first time I took Synthroid I thought I was having a heart attack. The pain in my chest was unbearable, but I thought it must be in my head. I didn’t want to go to the hospital because I was afraid they’d look at me and say I was crazy. It seemed like they all thought I was a hypochondriac.
After two days, I finally called my family doctor. She saw me right away (which was miraculous) and she said that my body had gone from having too much hormone to none, so I was to take half of the pill for a week and then resume the full dose. A month after my thyroid died, I was also diagnosed with diabetes. Yay!
No improvement while on Synthroid
After almost six months on Synthroid, there was no improvement. I felt like some days I was going crazy. Sometimes it felt like I was standing on the edge of a cliff and an internal battle was waging: Should I jump and make everything go away or do I take a step back and fight?
Lack of sleep even though I was exhausted, mood swings I couldn’t seem to control, some days just drifting through the fog, excessive weight gain. Despite all this, I was told by my doctor that I should be feeling fine because my TSH levels were in the normal range — my symptoms must be in my head or they were not related to my thyroid issues. I’ve never been so frustrated or this discouraged in my whole life. I raised five kids alone, had drug-addict boyfriends who terrorized me, stole from me, beat me, and still, I never gave up. I still laughed every day, played with my kids, and was still active and full of energy. It never got me down.
I’m a shell
And then this tiny gland and incompetent doctors stole my life away from me. I’m a shell of how I used to be. Looking in the mirror I don’t know who I am: all I see is a woman with a bloated face and tired eyes with no spark left in them. Being able to do all the dishes is now a major accomplishment. I have no one to talk to, no one who understands me.
Finally, a month ago I got mad at my doctor and told her that she had two choices: either she prescribed me natural desiccated thyroid, or I stopped the Synthroid and I would eventually die. I had been begging for months to try it and she would always say no. I knew I had to do something: Synthroid was no help. I still felt dead inside and showed no signs of improvement. Things had been the same since the beginning of the treatment. I told her I didn’t care what the blood results said. I told her I feel like death.
I’ve also been hospitalized three times for UTIs that went to my kidneys and into the bloodstream, and I’ve been on antibiotics since November 11th. Additionally, I have growths on my ovaries and it’s taken my doctor over two months to finally send out a referral to a gynaecologist.
One good thing is that I won the battle for natural desiccated thyroid (NDT). I’m on the thyroid by Erfa, the Canadian version of Armour. Unfortunately, my doctor has no clue how it works. I went from 150mg of Synthroid to 30 mg of NDT for a week, then 60mg for another week and now I’m on 90mg until my next blood test on March 25th.
No one understands me
The suicidal thoughts are back full swing, I’m crying all the time, and now I sleep even less than before. My anxiety is off the charts. I don’t know how to handle all this; even my diabetes is out of control. I can’t remember half the things I say or do. I’ll be talking about something and completely forget what I was talking about. I feel stupid and incompetent.
I think the feeling of not being understood is by far the worst. Is there any hope of ever regaining some semblance of normality? Any suggestions, and hope that things will one day be okay, would be beyond appreciated. Thank you so very much for reading my story.
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