Recurring symptoms 20+ years on

[Octi]

Hi, I’m new here. Glad to have found you!

I was diagnosed with Graves’ disease in around 2001 and was treated for my overactive thyroid, the result being an under active thyroid for life. I’ve been fine for 20+ years, but in the last 12 months my eye has been swelling up again. (It was always just the one eye that was affected). Every couple of weeks it gets to a point where it feels really uncomfortable and looks very odd, and then it suddenly goes back to normal again and the pain goes away. Is this anything that anyone else can relate to?

[pennyannie]

Hello Octi and welcome to the Graves Disease support group -

though most of us are over on the Thyroid UK forum as ultimately we become hypothyroid through the conventional treatment options.

So I presume you did not have RAI thyroid ablation considering your eyes were affected when first diagnosed and so am guessing you had a thyroidectomy ?

It could be that there is pressure building behind this eye - have you had it checked out by an optician or a specialist Graves Ophthalmologist ?

Possibly your Thyroid hormones are needing a tweek - do you have recent results and ranges for your Free T3 and you Free T4 levels ?

You might find help through the Thyroid Eye Disease charitable trust - tedct.org

as they can refer you to specialist eye departments, throughout the country usually where you can find a specialist eye consultant and some include an endocrinology unit alongside.

We are after all. looking at an auto immune disease and Graves can wax and wane throughout one's life so I think it worth getting checked out, just for your own piece of mind.

I 've found I have learnt a lot through the Elaine Moore's Graves Disease Foundation trust - though only started reading around this poorly understood and badly AI disease 8 years after RAI thyroid ablation for Graves in 2005 when very unwell and with no answers or resolve of my symptoms through the NHS.

elaine-moore.com

[Octi in reply to pennyannie]

Thank you very much. I’ll have to investigate a lot of what you’ve said, as although I’ve had this condition for 20+ years, it seems strangely new to me!

[PurpleNails]

I recommend you post on main thyroid form, there’s many now hypothyroid members who are post treatment for Graves (RAI or Surgical).  or from levels naturally reducing after being diagnosed hyper & temporally treated with an anti thyroid.

What treatment did you have? Were you diagnosed with TED (thyroid eye disease) when treated for Graves.  It can occur preceding, during & after treatment of Graves. 

Having unstable or inadequate replacement can also cause eyes issues so if you have any recent results & lab range post them for members to comment.   

Have you previously had positive TSI or TRab as this will help doctors understand it may be a thyroid related issue.  

Eye issues need to be referred to an ophthalmologist specialist & I’ve found getting the right treatment can be very difficult. I have hyper but not from autoimmune, it’s now controlled by carbimazoe, I’ve had eye issue from infancy & but doctors either assume I have TED & discuss it with like I’m fully aware or dismiss the idea because I don’t have the associated antibodies.  

After a recent MRI scan I was informed everything was “fine” I was going to be discharged, but subsequent letter to GP list features you’d see with TED.  So I’m waiting for full report.  I’ve had this for over 10 years.

[Octi in reply to PurpleNails]

Thank you very much. I’ll google some of the things you’ve referred to as I don’t know much about this condition. I really appreciate your comments and the information you’ve provided.

[Fruityflapjack]

Hi Octi and wrlcome. I've had Graves and TED since 2019. The former is well controlled with carbimazole, although trab antibodies are still bothersome. My TED has bunt out but 2 surgeries later, my left eye still feels uncomfortable from time to time. I put it down to my elevated antibodies, but that's just my thoughts.

I agree, Elaine Moore 's website is a mine of information and she's written a great book on the subject - The Thyroid Eye Disease Book, Understanding Graves Opthalmology. It really helped my understanding when I was very symptomatic.

I really recommend TEDct too - they have a very active and supportive Facebook group (800+ members) - I think there is a link to this on their main page.

[Octi in reply to Fruityflapjack]

Thank you very much, I’ll be following up your suggestions.