Im fairly new here and relieved to have found a place where I can openly discuss and hopefully get some feedback and advice on what appears to be Euthyroid graves.
Around Sept/Oct 2016 (whilst working abroad), I woke up one day and saw my right eyelid had retracted. I had a few meetings with the ophthalmologist followed up with a CT, Contrast MRI, PET CT (as the MRI, showed some type of lesion in my lacrimal gland) and blood tests. All my blood tests showed no evidence of thyroid dysfunction.
In January 2017 I was advised to start a course of high dose steroids (prednisone). I was on 80mg a day and gradually tapered down till April 2017. I didn’t respond well to the steroids, but it did stop me from seeing double.
1 month after I had discontinued with the medication, my left eye started to swell and protrude. The ophthalmologist I was seeing, wanted to arrange a biopsy for me and to possibly remove my lacrimal gland (which I did not do).
After spending thousands on consultations, scans, tests etc. I decided to quit my job and return to London. Immediately after landing at Heathrow, I went to Moorfield’s eye hospital and saw a great consultant. He reviewed my blood test results, scans and was very adamant that I have thyroid eye disease (based on appearance).I was glad to hear that I did not have a lymphproliferative lesion or a tumor.
I’ve been a little frustrated with the recent appointments I’ve had with both the Ophthalmologist and Endocrinologist. Although I have been diagnosed with Euthyroid graves, it’s a little disturbing to know that neither specialist are willing to investigate further. I have to wait and watch the exophthalmos progress while one eye becomes misaligned (all in the past 6 weeks).
Moorfield’s have put me on hold until my eyes stablise (can be a number of years) and to then eventually do corrective, orbital decompression surgery.
My recent blood test results:
July 2017 – Thyroid function test
Serum TSH level – 2.06 mu/L [0.3 -4.2]
Serum free T4 level – 12.5 pmol/L [9.0 – 23.0]
Thyroid peroxidase Ab – (o.75) u/ml
TSH RC AB - (<0.4) u/ml (Borderline positive)
If anyone with a similar case to mine can tell me what kind of tests should I be doing? What should I avoid, or what should I be looking for in these tests. I know certain tests are not covered, so I am willing to go private, if I have to.
I know in my case the problem starts with the eye and is later on detected in the thyroid. I cant prevent this, but would like to minimize the impact, for when it does happen.
At the moment I am only taking selenium, I may start another course of Intravenous steroids followed up with immunosuppressants (another hospital suggested this). I am stuck in two minds on what to do.
Thank you in advance.