Thyroid Eye disease due to hashimotos thyroiditis

[monica2548]

I've had symptoms of dry eyes, random itching, tiredness, and dry skin for no apparent reason since February. In April, my eyes started swelling up severely on the upper lids, and I had daily pain behind my eyes and headaches. After trips to multiple doctors, I was finally diagnosed with thyroid eye disease due to my hashimotos thyroiditis that I have known about and taken meds for about 12 years.  My meds adjusted were adjusted about 2 1/2 weeks ago.  Within a week symptoms less severe and within two weeks all symptoms gone except for flaky skin and severe eye swelling on the upper lid. I'm seeing an endocrinologist who is monitoring my medication and eye surgeon who specializes in thyroid eye disease.  The eye specialist didn't tell me much more than my eye issue was related to the thyroid eye disease, and it might take a couple of years to resolve on my first visit about a month ago.   He didn't mention any of the other more scary symptoms of bulging eyes, eye lid retraction or potential eye loss that I read on the internet.  I'm getting into another eye specialist soon, but my question is what is the percentage of people who develop more serious symptoms of bulging eyes, etc?  Does it always happen?  Also I read that sometimes if due to a certain subtype related to hypothyroidism,  the symptoms resolve when thyroid numbers are corrected. Is this accurate?  

[monica2548]

I don't have graves disease.  My t3 is low, my t4 is almost low and my tsh is on the low side which is unusual.  We adjusted medication three weeks ago and my symptoms have started to go away.  After first week eye pain, headache, and dry eyes got a lot better. I haven't had a headache in two weeks now and no eye pain this last week...and dryness better.  I'm assuming it is related to the adjustment in meds (I had been taking meds with breakfast for years and as I never had a problem I just never noted that I should be taking on empty stomach...and in January I started taking twice a day PPI due to LPR so doc said to take on empty stomach and avoid PPI meds.  I just had bloodwork done on Monday.  The eye surgeon I saw just said my eye issue related to hashimotos thyroiditis and it might last a few years.  He never gave more explanation than that.  I saw on intranet that TED symptoms can be quite severe.  I'm trying a new eye doctor who also specializes in TED...a good doc gives you more info than that so I think it is worth seeking a second opinion.  At this point, I don't know what to expect or if clearing up thyroid will make a difference.  I did read that TED exists on a continuum of the symptoms, but other sites don't really say that.  A few went into detail and said if one type due to hypo it will clear up within a few weeks of getting thyroid number right.  At this point after three weeks, almost all symptoms of the eyes gone except for swelling.  Really don't know what that means though.

[LazyMoose]

Do you have Graves disease as well?  

Some have Hashimoto and Graves, although rare. Bulging eyes is known at times to be a symptom of Graves hyperthyroidism.

TED from Hashis is not something you hear about - never came up here before.