Complex hypothyroid issue, so much suffering

Empty sella is an often symptom-less unrelated finding unless you've had a previous pituitary gland removal. Increased intracranial pressure or intracranial hypertension has completely different findings. Sounds like you need to go back on something that contains t3 and t4. Obesity complicates all aspects of health, and can cause tachycardia, arrhythmias, difficulty sleeping (OSA) which can lead to headaches, fatigue, depression etc. Sounds like you need to talk to a multidisciplinary team to determine if your symptoms are caused by something else.

@healthscroll
I am suffering from long and really lost. I don't know where I can get multidisciplinary team for me. After a full blown Hypothyroidism for 25 yrs, my thyroid gland suddenly behaving like Subclinical Hypothyroidism which is an earlier state of the disease. If I raise T4 or T3, it comes up with hyperthyroidism symptoms including the severe eye pain. No doctors will convince for Thyroid eye disease as the antibodies for that disease are negative. So I really don't know if I will ever get a diagnosis, my suffering continues.

I just had my thyroid removed. I've been from hypo to hyper most of my adult life. I had half removed 30 years ago. Had two thyroid storms since 2017 . We finally pulled it. I feel a lot better. Still getting the levothyroxine levels perfect and all my blood work is good even metabolic panel.

It’s possible, hearing how your eyes are, as mine get similar without pain, very red and irritated. Could you have high histamine in your body? I have high histamine in my body that contributes to the eye issues. I also get hives on occasion, but those seem to have subsided. I would try some food elimination to foods like tomatoes, eggplant, zucchini which are called Nightshades. Give up eating those for a while and see if that makes a difference. I also gave up eating gluten, dairy and soy products. I’m much better.

@chatard99 Did the Neuropthalmologist give you an CT/MRI of your brain & eyes?

Yes.. i did 2 CT and MRI brain and orbits. It showed mild muscle enlargement, more like non specific orbital inflammation, not TED pattern

@lkirnbauer
I don't know if I have histamine intolerance. I have eye redness, itchiness, gel like chemosis while flaring but with severe pain. I am going to do tryptase bloodwork next week. I also stopped gluten, dairy, soy from my diet. Immunologist is trying to diagnose MCAS by medicine trial. I am planning to start Montelukast and LDN. Did you try any of them yet?

@chatard99 You could find out if you have a histamine issue by having a food sensitivity test done. Certain foods in the Nightshade family trigger it as well as other foods. I was never offered any type of medication, so no I have not. I’m currently wearing a 7 mg Nicotine Patch that seems to give me a bit more energy throughout the day. Good luck with the medications, I do hope they will help you.

@lkirnbauer
I never had any allegies or intolerance with any food. So I am not sure if I have histamine intolerance.

@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.