I've been a TED sufferer for 5 years now and it has had a horrible impact on my life. I've had 4 eye surgeries and will soon be doing a 5th.
My case is very unusual, as my diagnosis is 'Euthyroid graves' meaning my thyroid levels are within range, but unfortunately I am just left with the weird eye disease that comes with it. I do experience alot of the symptoms with my graves disease, that is palpatations, insomnia, anxiety etc (and all the eye pain from my surgeries). But as my blood test has always been normal, nothing has ever been prescribed.
So after many years of suffering, I was hoping I could post my most recent blood test results, and if someone sees something out of the ordinary they could probably point out and recommend.
Thank you in advance
Written by
Martin028
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Having TED doesn't automatically mean you have Grave's. To diagnose Grave's you need antibodies tested. Personally, I wouldn't accept that diagnosis without the correct tests being done: TSH, FT4, FT3, TRAB or TSI, TPOab.
From reading previous posts, I don’t think that you have been diagnosed with either an overactive thyroid (eg Graves Disease) or an underactive thyroid condition (eg Hashimotos). I’m assuming you’ve never taken any medication for a thyroid condition?If this is correct, your TED diagnosis is actually euthyroid TED.
When did you last have your T3 and T4 thyroid bloods checked? Have you had any antibody tests?
Your blood test above shows :
TSH 1.44 (0.3- 4.2) which is within normal range.
I have found the TED charitable trust extremely useful in offering telephone advice, information packs and zoom meetings with others with the condition. They also run a Facebook group.
Looking at your back history it seems to me you are dealing with Graves Ophthalmology which can run independent of Graves Disease.
I was diagnosed with Graves Disease in 2004 and had RAI thyroid ablation the following year ( a treatment I deeply regret ) and now manage lingering Graves, Thyroid Eye Disease and hypothyroidism.
When I asked if I might be considered for corrective eye surgery I was told my eyes were not " bad enough " and I hid behind dark glasses until I had to accept this new face looking at me in the mirror.
The psychological aspect of all this on the patient, seems not be considered in the mainstream medical field.
Interesting though, 20 odd years prior to my diagnosis I was having emergency laser eye treatment in Moorfields City Road for hole and tears in both eyes and found this hospital absolute amazing and caring.
I did ask why this had happened to me, and it was suggested that there could be an inflammation build up on my spine, which didn't come as a surprise as I had ' lived with ' back issues for years. but no bloods were run, and I still have an open O/P arrangement though I now live way outside London and several hours away.
If you haven't heard of the Elaine Moore Graves Disease Foundation website you might like to dip in. It is Stateside but Elaine has also written several books around this poorly understood and badly treated auto immune disease and one book solely for patients who are dealing with Graves Ophthalmology and there might be something there of interest to you.
As I understand things now Graves Disease can be with you for many years before your bloods say anything of any consequence to the mainstream medical.
Graves antibodies can sit on our TSH receptor sites making it near impossible to get a diagnosis of hypothyroidism as our TSH doesn't respond in the normal manner.
I would think it a good idea to know if your Graves antibodies are raised as they can distort blood test readings.
P.S. There is no cure for Graves and it is said to wax and wane throughout one's life and tends to be a stress and anxiety driven auto immune disease and am sure you have had your fair share of anxiety dealing with all you have endured.
Graves can burn itself out given time, and symptom dependent, treatment with anti thyroid drugs is now seen as the better outcome for the patient, though sadly some NHS trusts are still suggesting RAI as the treatment of choice, but this is more likely to be in the hospitals best interest financially, rather than in the patient's well being.
Thank you for your reply.. may I ask how the hole and tears in both your eyes impacted your vision? did you have floaters or black dots.. and have Moorfields been successful in treating it.
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i just happened to see you question about holes and tears in eyes and thought I 'd learn something else ???
I woke up one morning with very bloodshot eyes, and light sensitive - doctor said conjunctivitis and gave a prescription for some gooey eye lubricant - after a few days, I went to see my optician who looked behind my eyes, and then put me in a taxi to Moorfields
Emergency laser treatment was then suggested for both eyes which sorted out the problem though I was never told " why " and just think it's interesting now looking back as I was diagnosed Graves some 20 years later.
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