January is Thyroid Disease Awareness Month. In recognition of this, I thought that a post about my struggles with Hashitmoto’s Thyroiditis was timely.
Before I go into my thoughts, I want to state very clearly that this is my story. I know lots of people who have thyroid issues and they feel like their lives and health are fully normal when taking their daily dose of Synthroid. Everyone with thyroid problems reacts to them differently, experiences different symptoms, and reacts to treatment differently. This is my story, not anyone else’s.
My initial diagnosis from my family doctor, in 2012, was Hypothyroidism. After several months of constantly adjusted treatment, my TSH levels were never in the “normal range,” so my doctor referred me to a Endocrinologist. This specialist tested my antibodies and did a thyroid ultrasound and diagnosed me with Hashimoto’s Thyroiditis. I only saw this specialist a few times before I quit seeing him, in favor of another Endocrinologist. Frankly, he was an ass and had a terrible bedside manner. He refused to talk to me, telling me he would “send me a letter” and when I inquired about dealing with the weight gain caused by my condition, he told me to “eat more salad” over his shoulder as he walked out the door. My second Endocrinologist was very nice, but he turned me off by refusing to do blood work 50% of the way through my pregnancy because he said “if your levels havent changed yet, they aren’t going to.” Following this statement, my OB ordered my bloodwork and medication until after my baby was born. Following my daughter’s birth, I started seeing a new Primary Care doctor. I am currently on a waiting list to see a Internist, because I am tired of my symptoms being ignored just because my TSH is in the “normal range.”
I was diagnosed 3 1/2 years ago with Hashimoto’s and the only improvements I have seen are a lessening of complete exhaustion (at one point I was sleeping up to 20 hours a day), lessening of weight gain, ability to lose weight with medical intervention (phentermine), and an improvement in my ammunition system (which I credit to removing gluten from my diet).
I am on my 5th doctor and on a 7 month waiting list for doctor #6. So far all the doctors generally ignore my symptoms.
The only meds I have been able to get prescribed are levothyroxine. While my TSH and T4 are checked regularly, other tests are rarely done or have only been done once. Generally my inquiry for more tests is met with the doctor ignoring me or making me feel dumb. I’ve had my antibodies checked once, my vitamin D checked once, and my free T3 and free T4 checked once or twice. I’ve also been tested for anemia. That’s it.
My symptoms include: fatigue, difficulty swallowing/”thick saliva”, dry skin, itchiness, difficulty sleeping at night, occasional restless leg syndrome, waking up tired after a full night’s sleep, easily bruised , brain fog, forgetfulness, halitosis, receding and bleeding gums, seborrhetc dermatitis (I think – this is a self diagnosis, but again the doctors have been ignoring me), hair loss, nail ridges, keratosis pilaris, anxiety, gritting teeth/clenching jaw, periodic hot flashes (primarily at night), difficulty regulating temperature /cold intolerance, varicose veins, IBS, difficulty losing weight, sensitivity to gluten, muscle and joint pain, and tingling/numbness in legs and feet, pain in soles of feet.
We can all agree that when the thermostat is set to 75 degrees I shouldn’t need to sleep with three blankets, an electric shawl around my shoulders, and a heating pad between my feet – all while fully dressed, right?
I am very happy to say that to date I have lost 30lbs (based on pre-pregnancy weight) and that I am 10 to 15 pounds from my pre-diagnosis weight, but 100% of this weightloss had been attributed to the phentermine. I am scared to death of what will happen to my body after I go off this medication. I am scared that the weight will pile back on and I am scared that I will start reverting back to my super fatigue state. Right now, I strongly believe that the phentermine is keeping my energy levels fairly normal. I know most people experience rapid heart rate and a hyper state on phentermine, but on days I dont take it, I feel like a zombie. Even on days I take it, I fight brain fog, but on days I dont take it, I really have trouble functioning. I guess I think that it is masking my super fatigue symptoms.
Again, I know lots of people suffer from thyroid issues. Thyroid problems are one of the most common illnesses in women. However, I am only 32 years old and I most days I feel like I am living detached from my body and that my body cant be mine because a 32 year old shouldnt feel like I do. Everyday I think: how bad will my feet hurt today?, Will I be able to focus as I drive to work today or while on the phone during my conference call?, Should I take my electric shawl to work today to use in conjunction with my space heater?, Will my staff think I dont shower because my scalp is flaking so badly?, Oh, how long have I been scratching that spot on my arm – there are scabs there now?. Are these normal thoughts for a 32 year old?
Why should I be willing to wait 7 months to see a doctor (#6)? Why are my symptoms ignored? Why wont someone run a vitamin deficiency panel or consider putting me on a treatment other than Synthroid?
Could I live my life and put on a happy face, letting the world think I am happy and healthy? I could, but I am honest with myself and honest with those who live their lives around me. I am not the person I think I should be – I think I could be happier and healthier, but I need someone to listen to me. I want a doctor to care. If my symptoms are untreatable and I just have to live with them, then fine – but damn it, at least someone should care enough to find out if something is causing my symptoms and if that something is treatable!
My name is Ashley Graves and I have Hashimoto’s. I am 32 years old, a wife, a mother, a professional, and an educated woman. I will learn everything I can about my illness and I will advocate for the best healthcare available to me. I will live my life to the fullest I am able and I will not let other people tell me how I “should” feel.
In order to be the best mother I can be, I need to show my daughter that I am important, that she is important, that our health is important. I want to be in my best possible health, so I can be there for her and I want to ensure that she grows up knowing that advocating for yourself is important.
My illness maybe lifelong, but my symptoms dont have to be. I am dedicated to being my own best advocate.