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Complex hypothyroid issue, so much suffering
Hello,
I am a 40f obese facing chronic pain surrounding my eyes, eyeball from last 5 years mostly flaring during winter months. MRI showed eye muscle inflammation and high grade partial empty sella. I have hypothyroidism from last 25 yrs btw. I had endometrial hyperplasia last year as well, biopsy was normal.
This year i was low on medication while vacationing, missed few doses of Levoxyl. Suddenly I have noticed that the eye pain intensity got down by 50%. After returning home talked to my Endo and he lowered the dose (100 mcg to 50mcg) but still whenever i was taking medication eye pain headache comes back. So he changed the brand to Tirosint thinking that may be fillers are causing reactions. Tirosint also didn't suite me. Finally he changed to Armor thyroid at its lowest dose 15 mcg. But even if on 15 mcg I am getting heart palpitations, eye pressure etc. My recent lab work showed
t4=1.1;
t3=2.6 ;
TSH=20.
TPO antibody =25
Currently i am in a situation where TSH going high but still i can't take any medication as eye pain intensifies. Is there any possibility that csf pressure causing this intolerance due to empty sella? I am so confused and scared about thinking that there is something going very wrong with my body!!
Appreciate your advice.
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Anyone? Please help!
@chatard99 I know a bit about thyroid and thyroid conditions but have no clue about the seemingly associated eye problems. It sounds like you may need to consult with an ophthalmologist (not an optometrist or optician, but a full borer MD). Someone that will collaborate with your endocrinologist would be even better.
Have you looked into Thyroid Eye Disease? Most people think it's only related to Graves/Hyperthyroidism, but apparently that's not true.
Also, from my understanding, hypothyroid meds are known to increase blood glucose levels. Have you talked with an ophthalmologist? Sounds like you might have blepharitis... Does it feel like you have grains of sand or foreign object sensations in your eyes? I do have something similar.
You need to see an endocrinologist and a thyroid eye disease physician. I had the thyroid eye disease and it went away once my thyroid was under control. With a TSH of 20, you are not under control. Getting this under control can help with a lot of issues.
I have hypothyroid and Thyroid Eye Disease (TED), there are treatments. there are specialists for this who are opthamologists, not your Endo.
I consulted with so many thyroid eye disease specialists in my area. Everyone noted that I don't have that. I don't have antibodies also. They won't consider me with Hypothyroidism.
Book an appoinment with a Eye specialist, I had the same symptons but turned out I had an onset of Glaucoma which is full blown now. The eye pressure is real and can cause severe pain, temporary/ permanent blindness if it goes untreated. The specialist will be able to tell you if the thyroid vs any othe auto immune diseases.
@tonwil2004
I saw so many eye specialists, Neuropthalmologist. They couldn't find anything wrong in my eyes. I had glaucoma test, visual field test etc. All came out normal.
My Neurologist gave an insight on Mast cell activation disease as I had( late detected )Lyme disease, worse Covid and so many other live vaccines. I am trying to get an appointment with an Immunologist, hope will get some treatment or diagnosis.