Hello everyone, I’ve been told that I may have thyroid eye disease and certainly it seems that I have all the symptoms of it. I’m really confused though as the GP did loads of blood tests that came back fine for thyroid function. I have an appt with a thyroid eye specialist at the end of July and in the meantime I’m floundering around with confusion and dread. Anyone else have experience of this issue, especially the bloods being normal, I just don’t understand!
Ps I’m planning to make an appointment to discuss the blood tests with the GP in more detail…but it’s Saturday today 😁
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Solstice11
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Welcome to the forum. When GPS say blood tests are ‘normal’ this doesn’t necessarily mean ‘optimal’. Can you share your thyroid blood test results with us? If you don’t have them, do ask your GP as you are legally entitled to copies.
Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).
I’m so glad you are seeing a TED specialist ophthalmologist as the correct course of treatment is so important. In the meantime I would recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Preservative free lubricating eye drops are also important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.
Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group.
Please be reassured, my eyes now look nothing like they did 18 months ago, so try not to panic. For me, huge sunglasses and bright lipstick helped me have confidence to face the world. Please keep posting if you need any further advice or support.
Thanks for your reply. I don’t have a copy of the blood results yet, I’m planning to request them on Monday and will post back here. I have read about selenium and started taking it yesterday in fact! The problem is that this started at least a year ago for me but I didn’t realise what was going on and didn’t think much about it - started with double vision and a slight change in the eye direction in just one eye. I did see an optician at the time who prescribed a prism but nothing said about the eye itself. My vision deteriorated a bit recently so I went to another optician who thankfully diagnosed the possibility of TED - I have also developed swelling above that one eye. I’m terrified that it’s going to get worse. I don’t smoke and live a very healthy lifestyle so I’m not sure what else can be done or what the trajectory of this disease will look like for me.
I understand how asymmetry makes you feel Lollybre33. That’s why I wore sunglasses even indoors, as I was extremely conscious of one eye looking more swollen.
I was originally given a diuretic (furosemide) to help reduce eye lid swelling, but it didn’t do much for me. I found both hot and cold compresses did ease some of the swelling.
I recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.
I also take lutein & zeazanthin (Eye complex 7 on Amazon) for overall eye health, so this is worth considering if you have any concerns about your vision.
Do you have any thyroid blood test results and ranges to share with forum members ?
We generally ask for a TSH, T3 and T4 and an antibody blood test result ?
You might like to look to the Thyroid Eye Disease charity tedct.org.uk as they can signpost you to your nearest clinic where you are likely to be monitored by both an endocrinologist and an eye consultant specialist.
However I see you already have an up and coming appointment so just please ensure that whatever lotions, potions, drops or ointments you use to ease your eye issues - all are Preservative Free.
It’s likely your GP tested the TSH (thyroid stimulating hormone - a pituitary hormone) which signals the thyroid to produce new hormone. It increases when thyroid levels are low (saying increase production please) but drops when levels are high (saying, sufficient hormone reduce production)
It’s assumed if TSH “in range” so will the thyroid hormones, but it’s not foolproof. The range is wide so if its just within range it could be high / low and still classed as “normal”.
Sometimes labs do not test thyroid levels if TSH in range - sometimes they do. So you need to know what’s been tested & the results.
Hopefully FT4 (free thyroxine) and FT3 (free triiodothyronine) have been tested too & you will see where your thyroid level are. (FT3 is rarely tested by NHS)
It’s also unlikely the GP requested thyroid antibodies to be tested but your specialist might.
There are 4 main types which are tested:
TPOab (Thyroid Peroxidase antibodies) Hashimoto’s & also present with Graves
TGab (Thyroglobulin antibodies) - Hashimoto’s & also often present Graves
Thyroid-Stimulating Immunoglobulin (TSI) - more associated in Graves
TRab (TSH receptor antibodies) -measures stimulating, neural & blocking antibodies & more associated with Graves
TED can precede a diagnosis of thyroid issues so press for testing of antibodies as this can indicate a condition developing. You can then ensure close monitoring and early intervention if levels trend abnormal.
Antibody formation is not always the case either. In this article from rare diseases it notes “However, not everyone with thyroid eye disease has these immune system abnormalities suggesting that other abnormal antibodies or other factors can cause thyroid eye disease in some people. Researchers are still investigating the underlying cause of the disorder.”
So TED can occur in those who are euthyroid & do not not have thyroid antibody formation too.
It is very good you have the care of a specialist. I do have hyper but as negative for autoimmune given very poor care.
As other say - selenium 200mcg for 6 months. Then reduce to 100mcg.
Preservative free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I found warm compresses helped with this & very gentle massage toward lash line. This “unclogs” the blocked Meibomian Gland & lipid oil layer protects eye and retains the water.
If you like to moisturise near your eye area use water based clear gels not cream/lotions. I did this as developed milia white spots round eye. I found the swelling reduced when I switched.
As PurpleNails outlines, 200ug selenium per day is recommended for 6 months or whilst TED is active, then a maintenance dose of 100ug. I revert to 200ug if my eyes are having a flare. Doses above 400ug can be toxic, so it’s important to read labels carefully. Care also needs to be taken when consuming Brazil nuts as a single nut can contain between 50 - 90ug, depending on the selenium content of the soil.
Thanks for the heads up about selenium, I’m just taking one a day at 200mg. I do eat Brazil nuts occasionally though. I’m still waiting on the GP surgery getting my results for me, will follow up tomorrow. I must say that I’m feeling pretty awful with loads of symptoms such as palpitations, really dry mouth and thirst and on and on..I’ve written a list to show the specialist. Not sure how I’m going to manage through to the 26th July mind you as I’m jumping out of my skin pretty much constantly but was told the bloods were normal. I’m hoping that the thyroid eye clinic will look at all this in more detail?
I'm sure you can't even buy such a large dose, but you have put 200 milligrams in your reply. A sensible dose would be 200 micrograms - one-thousandth the quantity.
Also, as you just replied to the thread, you have replied to yourself and Buddy195 might not have seen what you wrote.
Check you are clicking on the blue Reply button to reply to a specific person/response.
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