Hashimotos thyroiditis eye swelling...what is the right treatment

[monica2548]

Have had mild eye swelling last three years but didn't think was due to anyting special. In April, upper eyelids starting swelling severly every morning. After many doctors visits diagnosed that eye issues from hashimotos which was dianosed about 10 years ago. Have had random body itching, dry skin, constipation, mild depression since Febraury...didn't connect to thyroid before. Recent numbers are tsh .93, t4 5.2 & T3 56. Have taken 100mcg of syntroid since diagnosed 10 years ago.  Reg doc doesn't think needs adjusted.  Does the treatment seem right? What type of doc is the right to see?

[monica2548]

My TSI came back as <=1.0.  From what I understand that accounts for the eye issues as it isn't high enough to indicate graves but I should be much lower to nothing. My eye symptoms have improved in the last three weeks and all have basically gone away except for swelling and random eye pain that lasts for a few hours.  What this means, I don't know.  Frustrating though as I haven't heard back from my eye doctor or my endo to explain the test or see if the meds need adjusted. Results were back on Tuesday.  I guess I'm surprised at how slow they are.  For me I am worried about the eye issue and I am still tired and itchy all over so if thyroid meds need adjusted I'd rather do it now than a week from now.  My free t4 is 1.1, my t3 is 66 (low) and my tsh is .91.  I had my family doctor make an appointment with another endo but it will take till January to get in.  

[stella5349]

Since you are having new tests. Can you call them and ask to get the TSI Graves testing down too?

Just to get a reading on if this is something more to look at.

[monica2548]

Well I don't have bulging eyes... only unusual upper eyelid swelling and pressure/pain. I have seen an optometrist, ophthalmologist and finally a surgeon lid specialist who finally diagnosed the issue.  The others were all good doctors but stumped as to what the issue was.  I saw an endocrinologist this week; however, I didn't feel totally comfortable she was competent due to odd interpersonal skills.  Note I have had since February random symtpoms that could be attributed to hypo--headaches, itching, dry skin for no reason, extreme tiredness (I'm really fit and eat very healthy).  I ended up at the doctors office several times saying I just don't feel good, and I'm always really heathy.  The endocronologist I saw yesterday did recommend retesting of the my thyroid in two weeks as I had just been on a week of steroids and wants me to adjust when I take my medicaiton, which included vitamin D levels as well as free T4 & 3.  I have an appointment in January with an endoronologist that I think I would feel more comfortable with.  I asked for a referral yesterday to an opthamoogist who specializes in thyroid eye function.  It is hard to be patient to get into the right doctors, and I've found you really have to be savy and ask a lot of questions and enusre they understand and recall the symptoms.  

[stella5349]

parathyroid disease has nothing to do with TED.  ( egbew - don't foget the phophurus tests if your recommending parathyroid labs)

Are these labs for the T4 and T3 - free testing labs. Check your paper work and see if the word free is on there. Post it with the reference ranges.

It sounds as though you are low.

Hashimoto is not a re-occuance for thyroid eye disease. Graves autoimmune hyperrthyroid is the only link to this happening.

Read some more post on the importance of Free testing.

and reply back on the actual eye swelling. Do you have pressure behind it? - I think an oplamologist right now is someone you need to see - not a parathyroid expert.

[egbrew]

You have a Parathyroid issue to boot, hence the buldging eyes. See an endocrinologist. Stop- messing around with a GP on this. It can debilitate you in irreversible ways left untreated. Labs to run are PTH, TSH, TSH free, calcium levels and vitamin D levels. Good luck