Part 2. Diagnosis: Chronic disease and the “new normal”.

By the time I finally saw my doctor, I felt like I was dying.

There are no words to describe how bad I felt.

Beyond exhaustion, incapable of most things and sometimes, not even able to sit up without collapsing over on my side.

Everything took massive effort and willpower, talking and thinking were exhausting and most of the time all I was capable of doing was sleeping.

I told the doctor of my concerns. He asked what I was most worried about and I told him the swelling of my face and feet, the exhaustion and the pain.

I asked him to test me for everything he could using blood and urine and was soon on my way to pathology, hoping to be told that what I had would be over soon and I would be my “old self” again.

The nurse told me the tests usually took 3 to 4 days so I was surprised when my doctor rang me the next day saying “I know what you have, it’s easily treated, your thyroid has stopped functioning.”

I made an appointment for the next day and started researching thyroid disease.

Part of me was pleased that there was so much information out there but most of me was horrified and scared of all the suffering I saw on the net. Thousands of people on thyroid medication, still feeling awful, suicidal, unable to work or function.

Being told that it was “all in their head”, prescribed antidepressants, anxiety medication, being sent to psychologists or psychiatrists or told that despite feeling so awful, all their tests were “normal”.

So much overwhelming, depressing, anxiety producing information!

When I read through the long list of  thyroid disease symptoms, I found that I  had almost every single one.

I had always been so healthy. Why was this happening to me?

As I sat in the waiting room to see the doctor, I was feeling so ill that I was sure I would be heading to hospital.

I was planning when to call my son to help pick up my car and what needed to be organised at home.

When my doctor told me “your thyroid is dead”, I was shocked and also very skeptical. How could an essential part of my body just die?

When I asked him “why did this happen” he just shrugged and said that my thyroid was “past its shelf life”, that it “just happens”  and that all I needed to do was take a tablet every day and I would be alright. That I needed to redefine my “new normal”.

I knew from my research that “being alright” didn’t seem to be what the majority experienced.

Then began my questions:

• Me: “What if the medication doesn’t work for me?” Dr: “You just take more.”
• Me: “Is there alternative treatment or medication?” Dr: “No, not that I am aware of.”
• Me: “Can you prescribe natural thyroid extract (Natural Dessicated Thyroid or NDT)? Dr: “No not that I am aware of.”

 My TSH (thyroid stimulating hormone) level was 161

To put that in perspective, the normal range in Australia is 0.4 to 4.0. My pituitary gland had been yelling at my thyroid gland to make more thyroid hormones to run my cells but my thyroid was out for the count.

Every single cell in our bodies had a receptor for T3, the active form of thyroid hormone which fuels every cell including the brain cells.

My poor body was running on empty at a cellular level including my metabolism, my heart, my temperature, digestion, every single system of my body.

My liver and kidney function were down to 50%, which explained the horrible lower back pain.

I was very low in vitamin D, vitamin B’s and my thyroid antibodies were extremely high showing that my immune system was engaged in attacking and destroying my thyroid gland.

My doctor told me I had Graves Disease.

I knew from my research that autoimmune hypothyroidism which I had, was called Hashimoto’s Thyroiditis.

Graves disease was overactive autoimmune thyroid disease.

I left his office with a prescription for 50mg of Eutroxsig (thyroxine which is man made T4 thyroid hormone) and a form to get more blood tests in 6 weeks time and advised that I would need medication every day for the rest of my life.

By the time I got to my car I knew that if I put myself into my doctors hands, I was going to die.

I had no confidence whatsoever that he knew anything about my condition, how to treat it or had any real concern for my welfare.

I was still unable to work, could barely care for myself and had no idea what was going to happen to me.

I decided then and there that if I was going to get better, I had to take my life and my health into my own hands.

I found out later that I was in fact, dangerously ill and very close to slipping into a myxodema coma or experiencing heart failure.

Next Blog: Dealing with the Trauma of a life changing diagnosis.

Many people with autoimmune disease struggle for years to get a diagnosis.

How long did it take you to find out what you had?

Kerry