Thyroid Eye Disease and Chiari....I think I have worked it out!

Hello All,

I hope you are ok.

I was diagnosed with Chiari 1 in July this year. I had had a really hard time of Chiari symptoms for a while, but especially when I had symptoms of my other condition - Graves Disease.

In some ways I think my Graves Disease is a bit harder to manage. I had decompression surgery in late September & I have had ever reducing Chiari symptoms since. Last week I found out my Graves Disease (note my ownership of this :). I have mild Thyroid Eye Disease. This is when the sockets around the eyes distend and the eyes bulge. Oh, fun! Last night in my insomniac state I finally found an explaination as to why that increased thyroid problems and eye disease would have exaccerbated the Chiari symptoms - maybe the swelling around the eyes extend into the back of the eyes creating an increased intracranial pressure????

I will put that to the NS when I go for my 6 mth follow up in February. In the mean time, I think I have found something worth telling those who care. Then I thought I could share this on here in case anyone has both Graves Disease and Thyroid Eye Disease & Chiari. So, I need to keep my thyroid meds close by....

All the best to all & enjoy your day.


Thank you, Emmaline for your response. I completely empathize with you re being unwell and drs not knowing why or how..... My Endo just scratched his head and kept saying that headaches were not a symptom of thyrotoxicosis (toxic levels of T3&T4). I am thyrotoxic again & cant sleep well & sat up & bang it came to me. It has been over a year that I have bern unwell & I am grateful I have this forumto help me late in the night or just for empathetic reponses!