Imagine dealing with an illness that looks “normal” in blood tests but systematically rips your quality of life away while you fight to get a doctor to take you seriously. As of late I’ve met this adversary and it’s name is hypothyroidism.
Over the years I have been diagnosed with a plethora of things such as depression, bipolar, anemia and even fibromyalgia. Only recently in the last few months I’ve come to terms with the root culprit. I have hypothyroidism. But there are some problems with hypothyroidism that make it a real menace to live with.
I’m moving on to endocrinologist number two because the first one decided I was “normal” and had no response when I stated my thyroid is still enlarged and I am still having symptoms. It didn’t show up in my bloodwork but low vitamin D did so he made the cardinal mistake of diagnosing numbers and not a person. While some things could be part of vitamin D deficiency it hardly explains my full range of symptoms or my still enlarged thyroid. I also tried a holistic doctor which was a disaster. He could just barely even explain the medical conditions and just decided it was my diet and my diet alone even though I was sitting there with a thyroid the size of a plum and stated on numerous occasions during the appointment that I was barely able to eat or even stay awake.
I quickly realized I would only get help after I armored myself up with knowledge and became my own advocate. Personal research has helped me gather resources, blood test references and other things to take to the next endocrinologist but in the meantime I am still suffering and missing work because I don’t know how to explain what is making me sick and can’t get a doctor to acknowledge it.
Nothing more needs to be said if you are a fellow sufferer of this condition but let me give you some insight for those unfamiliar with it.
The thyroid is a butterfly shaped thing in your neck that has a huge effect on how we function despite it being a small part of real estate in our body. It primarily controls metabolism but can also affect your mood, sleep, appetite, pain levels, weight and immunity. When the thyroid is either producing too much or too little in hormones it can essentially throw your whole body out of whack and untreated can be truly debilitating and even lead to surgery and intensive lifelong hormone treatment.
At first I noticed I would get a little dizzy or a little drowsy here and there and have some days and nights where I wasn’t sleeping or eating right. I have other conditions that can cause these things and even medications that can so I didn’t pay it too much attention. The last few months however I have experienced severe memory loss, brain fog, creeping weight gain despite not having an appetite most of the time and severe episodes of just falling into a dead sleep. I’ve been physically weak and some mornings just unable to get out of bed at all or unable to be awakened for huge portions of a day. This is only a fraction of my overall symptoms as I’ve also had numbness in extremities, bowel irregularities, mood changes and even severe near suicidal depression at times. Sometimes I shake so horribly I can’t do the most basic task or have pain and stiffness to where I’m bedridden all day. I am constantly freezing cold but sweating excessively at night. I often have to wait for my horribly blurred vision to stabilize just to write a simple e-mail and my skin has retained a semi-yellow and sickly pale tone for weeks. My skin which has always been perfectly healthy is also now bone dry and so itchy I want to peel my skin off despite the fact I regularly apply lotion each morning and even use baby oil to help lock in moisture. My hair which I’ve never had a problem treating remains dry and stringy no matter how much product I apply to it. But under my hair my scalp has broken out into numerous sores and scabs from how dry and flaky it is. I’ve also had headaches, muscle spasms and a regularly hoarse throat and constant cough.
This has been my “normal” for almost two months now and I’m beginning to miss work each week and not even be able to do basic household tasks. My husband often has to remind me to eat and it is even getting hard for me to remain standing long enough to take a shower some mornings.
You might think with that set of symptoms you’d definitely have a doctor’s attention but this is not the case with myself and a number of other hypothyroid sufferers. The medical community has a habit I’ve witnessed and heard about where the bloodwork is treated and not the patient. There are a number of panels available for the thyroid and it seems a lot of doctors aren’t ordering the right ones which leave hypothyroid sufferers in a medical limbo that slowly turns into a personal hell.
At the beginning of my personal situation my general practitioner did an ultrasound and numerous blood tests. After all these tests it showed my thyroid was enlarged and there were abnormalities in my thyroid levels. She referred me to an endocrinologist who order yet more blood tests and somehow the results they got were “within range”. This means that the levels were what they were considering a normal range for thyroid hormones. But as an article I read pointed out…these tests are based on people who go to doctors for tests and those people often sick which creates a naturally skewed picture of normal. Normal for a thyroid level also varies as each person is different so it is not only callous but close-minded to assume a universal range without considering the person’s unique chemical makeup and symptoms.
In all honesty, I was nearly comatose during my appointment with the endocrinologist. It should have been visibly apparent I wasn’t well and as a specialist there should have been better knowledge and a higher level of concern. The disregard was palpable and he seemed uninterested in my general practitioner confirming my thyroid was enlarged and there was enough concern for a referral.
Because my thyroid remains untreated I have to wait until a slot in August for another endocrinologist and try to suffer quietly and keep going but that is becoming more and more of a challenge. My thyroid remains enlarged and quite alarmingly has started to cause stabbing pain in both sides of my neck that often spikes high enough I start crying at my desk throughout the work day.
My main purpose of writing about my experience is because maybe there are a lot of people suffering like this and not sure what the problem is or how to get help. If you suspect you have a thyroid problem see your doctor but also be prepared for a fight and trust your instincts. If you are told like many with hypothyroidism that you’re “fine” or “normal” keep pushing until you find the right doctor and see those doctors armed with knowledge. It may take time for you to get treated or even get acknowledged but don’t be a silent sufferer. Stay strong and be your own advocate.
I will keep posting about my own journey with this silent menace as well because maybe something I learn or just reading my experience could be just the push someone needs to seek help of their own. I don’t see another endocrinologist until August but I will probably post some more “Thoughts of an Aspie” blogs this upcoming month to keep cataloguing my experiences as a person the spectrum.