Thyroid Eye Disease. Is Graves Disease all about the eyes?

Thyroid Eye Disease. Is Graves Disease all about the eyes? The image of Graves Disease.

When you google search Graves Disease, the first thing you see is a facial picture with staring protruding eyes.

For me, this frustrates me. Graves Disease is more than an eye disease.

In fact, if it were all about the eyes, It would be a disease I could cope with.

But Graves Disease is not all about the eyes. It’s so much more. The eyes are one symptom of many.

Thyroid Eye Disease is not Graves Disease

All in the eyes

Eye-related issues are one of the many symptoms associated with Graves Disease.

It’s important to understand that issues with the eyes are not only a symptom of Graves but a disease in itself, referred to as Thyroid Eye Disease (TED) or Graves’ orbitopathy (GO). [1]http://www.btf-thyroid.org/information/leaflets/36-thyroid-eye-disease-guide

With that being said, it’s important we stop viewing the eye disease as being a part of Graves Disease. Instead, we must view it as a completely separate disease.

Why is Graves Disease associated with being an eye disease

The issue with Thyroid Eye Disease is the visual aspect, it’s noticeable.

With this accompanying eye disease, strangers would stare at me. And friends and family would ask me if I was tired or had a cold.

Graves Disease is an invisible disease as many people have never heard of it. And without Thyroid Eye Disease it’s a disease that we can hide.

With TED, it’s now visible. And people associate disease with something they can see visibly.

And this, (I believe) is the reason why Graves Disease is associated as being an eye disease.

 


Hello, I’m Cheryl.  I’m a Yoga Teacher and Nutritional Therapist and I provide information to help people who suffer from autoimmune, hormonal, thyroid and joint-related conditions.


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I looked ill with Thyroid Eye Disease

Weeks prior to being diagnosed with Graves Disease I looked well.

I’d recently had a baby and lost all my pregnancy weight. People were telling me how fantastic I looked after having my baby.

I felt pretty well in myself. I was surprisingly beaming with energy despite being extremely sleep deprived. Positively glowing, caring for two babies who were 3 months old and 21 months old at the time.

But, little did I know, that all of this, in itself were symptoms of Graves Disease.

I felt like superwoman.

But, little did I know that the rapid weight loss, insomnia and hyperactivity were early warning signs.

Signs I was unwell

For me, the earliest signs of being unwell was when I started experiencing muscle weakness, shortness of breath and heart palpitations. This was when I visited my doctor. I looked fit and healthy. And was told how well I looked by doctors.

After back and forth visits (approximately two weeks) to my doctors and accident and emergency I was diagnosed with Graves Disease.

Looking ill

Approximately three weeks after diagnosis, Thyroid Eyes Disease (TED) reared its ugly head.

I had protruding eyes, sagging eyelids, dark circles around my eyes, sensations of grit in my eyes and double vision.

I could no longer hide. The disease was all in my face. And to be totally honest with you, this was a low point for me.

With Thyroid Eye Disease, I had protruding eyes, sagging eyelids, dark circles around my eyes, sensations of grit in my eyes and double vision.

I was taken more seriously with Thyroid Eye Disease

My new-look finally allowed doctors to take me more seriously. And family and friends started giving me the ‘poor you’ look.

Emotionally, I was a wreck, not only because of the physical upheavals, but more because of how I looked.

In my mind, this is how I would look for life. This Graves Disease face is now noticeable, and I was scared of it being a part of me for the rest of my life.

I hate saying this. But Thyroid Eye Disease and losing my hair were two of the easiest symptoms to cope with physically. But emotionally they were the hardest.

It was difficult to accept the new me, as I couldn’t recognise the person staring back at me in the mirror.

The worst symptoms of Graves Disease, for me

As said earlier, my issues with my eyes were definitely the easiest part of Graves Disease on a physical level.

I speak for myself only. As for many Graves sufferers, having TED is possibly the worst of their symptoms.

Below you’ll see the symptoms that were difficult for me.

Muscle wastage and weakness

The muscle wastage and weakness were dreadful. I couldn’t walk more than ten steps without feeling my legs turn to jelly, constantly needing to sit down.

Assistance was needed to walk up and down stairs. Even holding a cup would feel heavy. And I couldn’t even lift my children.

Toilet Problems

The constant trips to the toilet. Ranging from two to four times an hour. The constant diarrhoea is dreadful especially as it was such a chore to walk to the toilet.

Tremors

Constant tremors to my whole body, but especially to my hands. It was hard to hold a cup without shaking. I’d try my hardest to not make my tremor noticeable. To not make the disease noticeable. But, many times it was difficult to hide.

Heat

The constant heat, for me, was one of the more lingering symptoms.

Imagine, it being winter, snow laying on the ground. Everyone is wrapped up warm with woolly jumpers and here I come along with a vest top. How ridiculous must I have looked? But I had no choice to look ridiculous, it was either that or be embarrassed by profuse sweating. Which one would you prefer?

Itching

The constant itching, to every single part of your body.

And I mean every part!

All day, everyday itching with no visible rash or dry skin.

Insomnia and Nightmares

Insomnia is no joke. Being sleep deprived is horrible. Especially when your body and mind is desperate for rest. You want to sleep but there’s no off button. It’s not nice to have no sleep for days on end. And during the few times when sleep would be possible, I’d have the worst recurring nightmares imaginable.

Palpitations

Palpitations were the scariest of all the symptoms. Especially coupled alongside insomnia.

There’s nothing worse than trying to get to sleep and all you can hear is bu-bum, bu-bum, bu-bum. And realising that the noise is not outside. Because, that noise, is, in fact, closer to home.

Because. The noise is within your own body. It’s your heart!!

And gosh. It’s the loudest sound ever.
And even more frightening is watching your breastbone pushing through your chest in rhythm to the sound of your heart. Frightening!

Imagine being scared to close your eyes, in fear of hearing the sound of your heart.

Conclusion

So this post is purely to highlight the symptoms Graves Disease sufferers have to live with, especially when experiencing thyroid storm (extremely high levels of thyroid hormones)

My personal rant!

Graves Disease is so much more than an eye disease. In fact, Thyroid Eye Disease is a disease all by itself. Which needs to be recognised as a debilitating disease. I’ve had a lot of issues with my eyes. In fact, TED has been the longest battle I’ve had since all this started.

Graves disease is when the immune system (antibodies) attacks the thyroid gland. And Thyroid Eye disease is when the same antibodies attack tissues of the eyes.

The symptoms that I had issues with, were due to Graves Disease as my thyroid gland caused these problems.

My eye disease was nothing to do with Graves Disease. This is a completely separate disease. Caused by the same antibodies, but brings along a host of symptoms which should be treated separately.

So in writing this post. I just want to highlight this. I would hate that this debilitating disease is associated with being an eye disease only.

There are many Graves Disease sufferers who don’t have TED.

Approximately 90% of TED sufferers have Graves Disease.

But noticeably, less than half (approximately 25-50%) of Graves sufferers go on to further develop Thyroid Eye Disease.

Quite a large amount.

But, I’m pretty sure, that the majority of Graves sufferers will suffer palpitations.

[2]https://www.mayoclinic.org/diseases-conditions/graves-disease/symptoms-causes/syc-20356240

Images. Unsplash/Amanda Dalbjörn

 

 


Hello, I’m Cheryl.  I’m a Yoga Teacher and Nutritional Therapist and I provide information to help people who suffer from autoimmune, hormonal, thyroid and joint-related conditions.


Find out about the anti-inflammatory checklist and tracker

and

how it could help you!

Click one of the images below!


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References

References
1http://www.btf-thyroid.org/information/leaflets/36-thyroid-eye-disease-guide
2https://www.mayoclinic.org/diseases-conditions/graves-disease/symptoms-causes/syc-20356240