Julia

Hindsight and knowledge is a wonderful thing

I am waking up from a nightmare and the sun is gingerly peeping through the clouds. This is how I feel as I hopefully enter the final stages of my thyroid eye disease (TED). It has been a long and arduous journey.

It took 15 years for me to get a Graves’ disease diagnosis by which point my TED was very prevalent and it was this that finally prompted the GP to test for Graves. Over that 15-20 years I had every single symptom of Graves’ and then some, in every one of them, the symptom was treated not the cause. I could list them all but I’m sure you are all fully aware of them.

Confident Julia before TED hit

In 2016/17 I noticed my hair was thinning, I was losing weight, my skin was bad, my eyes were very sensitive to light, so much so I had to wear sunglasses in the house! I really didn’t know what was happening to me and I truly thought I was going mad.  

In 2020 a thyroid storm hit me.  There were no consultants available due to lockdown and Covid and by this time my mental health was at rock bottom, little did I know I had much more to come.

My eyes continued to deteriorate over the next few weeks and then I eventually got seen at the at the hospital. I was not let out of the hospital until I had started IV steroids, 12 weekly infusions of Methylprednisolone. Alongside this I was told I needed 10 rounds of radiotherapy to save my eyesight, this left me with 12 months of bad headaches. This was all way too much for me. I found it difficult to cope. 

On my first visit I was also told I would never look the same again. I was reeling and spinning, I did not know which way to turn, it was like being in car crash after car crash.  I was never offered help for the mental strain I was undergoing. I cried at every early eye appointment, I needed help desperately.

However, I think that the treatment has stopped my TED getting any worse and has even improved it a bit.  A very difficult part of TED is that there is no emotional or mental help dealing with it from the professionals.  The haywire hormone levels made me extremely vulnerable and depressed, along with disfigurement trauma, it is so much to bear.

With TED my eyes ached constantly along with my head, I had double vision, and having not worked since June 2019, I was in a terrible state worrying about money, job, my eyesight, health, the overall state of my life, all at the start of Lockdown.  I knew I was going through traumas, one was obviously the way I looked, disfigured.  There was the paranoia that comes hand in hand with thyroid eye disease. Not only TED changed my look, but also my face was disfigured with the steroids which gave me a moon face.

In my opinion TED contributes highly to mental health issues, when my TED flares up, which isn’t very often now, my anxiety goes through the roof and I feel very depressed.  At one point, early on, I was suicidal. A friend tried to get me professional help though a few different routes but there was none available, they were all too busy to take on other people, due to Covid.

Now I am coming out of this the other side, after uncontrollable thyroid levels. I am told a thyroidectomy was the only route, that this will also help my eyes.

Julia’s eyes displaying active thyroid eye disease

I am on the waiting list for surgery to correct my eyes.  I should have had it in January but it has been put back 12 months, again due to Covid.

To stay positive and get rid of some of my negativity, rewind to my first paragraph and I am definitely coming out of the dark side. This is the hard to believe part when one is going through such trauma and difficulties whilst feeling the worst ever.  It does happen, keep faith everyone and look to the future of getting yourself back to ‘normal.

People say there is help out there, but there isn’t much at all. You have to help yourself by learning as much as you can about the disease. Luckily I came across the TEDct Thyroid Eye Disease UK Facebook forum where I have linked with other patients suffering the same.