@chatard99 They did the same thing to me I was tested for a period of 3 years and kept complaining about my eye was hurting and pressure. Then one night I was driving and every time the cars in the other lane would pass the headlights would send excruciating pain through my head. I made it home and had to sleep in the dark, I did not know what was going on.

And finally, after 3 years of telling the doctor my eyes and head were hurting so bad, they finally said okay we think you have glaucoma.

But long story short they kept saying I did not have it until that night, which was 3 years of saying no, I did not have glaucoma.

I know Graves Disease & Hashimoto can cause this pain in which both are thyroid diseases. I was tested for all of that because I kept pushing my doctors because I was tired of feeling bad and was adamant to get better.

If they tell you, you don’t have any of those diseases, then your next step is to see an autoimmune Specialist, Rheumatologist & a Neurologists (You seen a Neuro Ophthalmologist already). They often co-manage eye pain because it can signal serious systemic issues like autoimmune diseases or neurological conditions that affect both the eyes and the brain/body, requiring their combined expertise to diagnose underlying inflammation (uveitis), nerve damage, or vasculitis and manage treatments like immunosuppressants.

Make sure you get the referral from you’re Ophthalmologist for both doctors Rheumatologist & a Neurologists together they can figure it out. You are not crazy and this pain is debilitating where you cannot function.

This is your path along with your Primary, Endocrinologist ->Ophthalmologist -> Rheumatologist ->Neurologists, please keep in touch, I would like to see what the outcome is. Since you went to a Neuro Ophthalmologist already you can move to the next step Rheumatologist.

Have your primary doctor give you an inflammation marker blood test CRP, ESR, PCT, Ferritin and any other inflammation test they can add. If they are abnormal, do not stop until you get a resolution.

Also it is important to keep the inflammation down in your body with Thyroid Disease, so I can say changing my diet helped me to include not eating processed food and diary products. I did see the difference.

It took a cohesive team to including myself to get to this point where my eyes are not hurting anymore, thyroid is doing well and the inflammation has gone down in my body.

You must have a doctor who has great bedside manners and listens to what their patient is saying as far as where they are experiencing pain and discomfort. I have the best primary doctor in the world and she knows me. When I tell her what problems I have, she advocates for me until she gets to the bottom of it and she knows that I know my body.

I chose my doctors based of accolades, reviews, any malpractice and looking/ paying attention to what their patients are saying about them.

I had a Gastroenterologist tell me after 3-4 years of seeing him for severe stomach & colon issues, he did not think anything was wrong with me. So I guess I don't know my body.

That was the last visit for him. I searched for a Colon & Rectal doctor, and on the first visit I explained what I had been going through since I was in my later 20's.

Twenty years later and 3 doctors later, he says to me, you need colon surgery and did not ask for all the other doctors records. I went to colon surgery 3 weeks later and I am functioning normally.

I just wanted to add that in to show you some doctors will give up on you if they can't figure the prognosis out, treat you like a cash cow and others really love what they do.

Back to the subject matter; I am glad I found this blog. If I can encourage anyone through this disease I will. I have experienced it from a young age and I am in my 50's now and it was not easy. Stay encouraged, your day for relief is coming!

With the Empty Sella, fluid retention Hypothyroidism, you will need all of these doctors to bridge the gap for your treatment and get to the bottom of it. But I bet your inflammation markers are high as well.