Hi everyone, my son was diagnosed with Graves disease, he is 15 years old, he also has thyroid eye disease.
His levels are now good but he is still so up and down and sometimes cannot get out of bed or has a racing heart, he is no longer on propranolol, He is heading into his last year at secondary school and already struggled due to specific learning difficulties. He is having to start school later in the day sometimes and he just generally feels rubbish. He hasn't got a diagnosis of ARFID but he definitely has it. The diagnosis will take well over a year if not longer. This I imagine will have a negative effect on his levels of vitamins and minerals, he does take selenium as recommended. We just seem to be muddling through but I have this constant nagging feeling that he is not right. How should he be feeling? Are we entitled to any help and support? Either financially or at school?
Thanks in advance
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MumfieMagic
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This sounds like a lot for you and a young person to deal with.
Does he take carbimazole? What dose?
Do you or he have access to his blood test results? Recommend you collect copy of results with lab ranges & keep track of results.
Have drs tested any nutrient levels? Folate, ferritin, B12 & vitamin D often affected when thyroid disfunction, if eating issues ongoing too testing especially important.
How much selenium does he take? 200mcg while TED active recommended for up to 6 months but should be reduced to 100mcg after & diet sources can also increase level.
I’d recommend TED charitable trust tedct.org.uk/home for information on TED.
Does he have an Education Health and Care Plan (EHCP)? You can always ask for a review of the plan & suggest further support.
I recommend your son continues to take the Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed.
Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If your son has eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect the stomach). Also worth doing is using 2 pillows at night, to elevate the head.
Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios
As PurpleNails has mentioned, TEDct provides great advice and support, so do get their information pack. They also run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.
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 son’s 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 son’s vision.
Do keep posting for surgery advice/ support; we are here to help🦋
Graves is a poorly understood and badly treated Auto Immune Disease for which there is no cure.
It generally only gets diagnosed when the thyroid and or eyes are attacked by ones own immune system - and quite why and now has this happened could be because of other issues that have been going on for some time.
Learning difficulties and Graves is well documented - Graves is stress and anxiety driven.
Is it ridiculous to suggest he takes a year off from school as his health is more important than getting grades he is likely not going to be well enough to take and already stressed about ?
It would help if he could be seen by both an endocrinologist and eye specialist working together, with a mutual interest in Graves & Thyroid Eye Disease -
and as I understand things the Thyroid Eye Disease Charity can signpost you to units throughout the country, generally attached to the large teaching hospitals, where these specialists work together - finding the best way forward for patients. tedct.org.uk
You might like to read around on Graves Disease and the most well rounded of all I researched is that of Elaine Moore - elaine-moore.com
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