The 5 Worst Things About Hashimoto's Disease — and the Positives

It’s scary telling people you have chronic medical issues. We all know what it’s like to get the comments or the looks. For me, I’ve felt the judgment to be overwhelming at times. In retrospect, I wish I could get all the time and energy back that I let other people’s uniformed (and unsolicited) opinions affect me. Because of my apprehension about what people would think, I’ve been very private about my health struggles. But that only exacerbates the isolation. After being diagnosed with Hashimoto’s, and my journey to understand and treat it, I realized that it was time to share my experience with others. I hope other Hashi’s patients will know they aren’t alone, and that it’s not hopeless.

1. The Symptoms

The Bad:

Neck/throat pain and pressure, feeling like you have the flu, muscle pain, fatigue, itchy skin (eczema), feeling cold, dry brittle hair and nails, and a general feeling of being unwell or sick are some of the more common symptoms. The impact of these symptoms, is at times, overwhelming, exhausting, and painful.

The Positive:

The general flu-like feeling of being sick, achy, lack of energy, and sore throats/swollen glands were all symptoms I was already familiar with because of other chronic illness I deal with. Because of that, the experience of being sick was not new to me, and therefore, less scary than it might have been had I gone from being completely healthy to suddenly very sick. I’ve been through that experience before and it was significantly more nerve-wracking.

2. The Process of Getting Diagnosed

The Bad:

Getting diagnosed with Hashi’s can be a frustrating and lengthy process for many patients, myself included. I had symptoms for almost a year before I was on the path to a diagnosis. It started with the symptoms, which in my case included intense pain and pressure in my throat; a feeling of fullness in my neck; chills; exhaustion; and feeling weak. That led to an ultrasound; the discovery of nodules; finding an endocrinologist; another ultrasound; a biopsy; and a thyroid scan and uptake test.

The Positive:

Many years ago, I suddenly went from living a completely normal life to being so sick that I couldn’t get out of bed. I couldn’t function. This was my introduction to the world of chronic illness, and what it’s like seeking an elusive diagnosis. A long time went by before I was diagnosed with CFS/ME, and along the way I encountered doctors who were dismissive and demeaning. After having gone through that, I had a frame of reference when it came to what I would learn was Hashi’s. I applied my same perseverance (as you know, not easy when you’re sick) to continue seeking a diagnosis and help.

3. The Ongoing Process of Treatment

The Bad:

After being definitively diagnosed, the treatment process begins. This varies with each person, but for me, I went from being hypothyroid to a condition called hashitoxicosis. This meant I was vacillating between being hypo and hyper thyroid, wreaking havoc on my body. I wound up having radioactive iodine (RAI) treatment to destroy my nodules and as much of my thyroid as possible. After I was no longer producing thyroid hormone, I started on thyroid replacement medication. I’ve needed my dosage adjusted many times, and will probably need to do so for the rest of my life. This mean blood tests every few months.

The Positive:

The fact that there was a viable treatment option, which in my case was RAI. And there Are clear markers to see how my system is functioning, in the form of blood tests (Free T4, Free T3, TPOs, and TSH) and a yearly follow up ultrasound. There are many thyroid replacement options available, as long as you have an open-minded doctor (I do!) who is willing to individualize your treatment.

4. The Unpredictability

The Bad:

Hashimoto’s is autoimmune thyroid disease. Like other autoimmune illnesses, there are flare-ups and dormant periods. Although there are some known triggers (lack of sleep, getting sick, extreme stress), there are times that flares seem to come out of nowhere. When they happen, there’s no way to know how long they’ll last. Waiting it out if mentally and physically difficult.

The Positive:

Coming to the realization that I know my body best, which means I know when I can push and power through. And I also know when I can’t. I’ve learned to listen to what my body is telling me, when it says: Stop. Lie down. Rest. I know that I have to let flare-ups run their course. There is no rushing it when it happens, and I’ve learned to accept this. And although I don’t know when a flare-up will pass, I remind myself that it will.

5. Knowing I Have a Lifelong Autoimmune Illness

The Bad:

In my case, it’s knowing I have another autoimmune related illness. I’ve had extremely severe CFS/ME for many years, and to a lesser degree (but still painful) fibromyalgia. Between the overlap of these conditions, it creates a multitude of symptoms and pain from my body attacking itself. However, when my Hashi’s is not as active, I notice that the other conditions tend to calm down as well. And vice-versa.

The Positive:

Unlike my other chronic medical conditions that are often met with derision, Hashimoto’s can be proven and is accepted as a legitimate condition. When I was diagnosed, my endocrinologist explained that she sees many patients with the conditions such as CFS and/or fibro. They often overlap with Hashi’s. Just having a doctor acknowledge this felt vindicating for me.

Getty photo by marzacz

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