When I was diagnosed with Graves many years ago, I also had thyroid eye disease which was very neglected and caused much distress. If fellow members with this form of Hyperthyroidism have similar experiences, the link with selenium discussed in this article may be helpful:
Jut to make sure people are aware, although usually associated with Graves/hyperthyroidism, Thyroid Eye Disease can also occur in those who are hypothyroid. And, indeed, those who have no unusual thyroid hormone issues.
(I have heard a specialist eye nurse categorically deny this. So the ignorance runs deep.)
Yes Helvella - I concur with what you have said. Thyroid eye disease is acutally an autoimmune disease in its own right and can accompany both hyper and hypo or indeed occur on its own. One of the articles, I posted does also mention that selenium may be useful for hypothyroidism too.
I am Graves but am hypothyroid after RAI treatment. I understand that doesn't make Graves go away but has just treated the symptoms. Although my eye problems eventually improved, (despite the theory that RAI should not be given to Graves patients when Thyroid eye disease is active) I can always tell when I am not quite balanced when my eyes give me trouble. This includes streaming, dry gritty feeling, poor focus and difficulty seeing at night.
I'm thinking of starting a small dose of selenium myself to see if it helps. Although its supposed to be easy to get it from diet, like brazil nuts, they will only have enough selenium if they have been grown in selenium rich soil.
You may find this link useful, it gives the results of a randomized, double-blind, placebo-controlled trial that was carried out to determine the effect of selenium on patients with mild Graves' orbitopathy.
thanks for posting this I too have graves treated with rai in novemeber and i really suffer from itchy, dry grtitty, blurry vision, puffy skin that can be painful on touch, watery eyes. It drives me mental and is a real curse from the moment i wake until i manage to close my eyes i am constantly going mad with this symptom. i remember taking selenium and co-q10 supplements years ago so i am going to restart this again as i want to pull my eyes out on a daily if not hourly basis
Hope it helps. It's very early days for you so there is a great chance things will improve just for you as mine did. Perhaps we can compare notes on here in a few weeks when the supplements have has a chance to work.
no prob. i had rai on 1/11/12 and became hyper requiring propanlol, then on the 24/12/12 i was knackered had bloods and tsh was 24 and free t4 was unrecordable so i started levo 100mcg on the 28/12/12 and i am just waiting for it too balance out
the fog is lifting engery levels low but not as low as the 24th
but my eyes are a nightmare still and i would say getting worse so here is hoping they settle down. how did you tx go and when did your eyes become better.
Like you I was very hyper when I had RAI because I had to stop my carbimazole before treatment. As RAI does not work immediately, I was told to restart Propranolol and carbimazole. Almost overnight, what with the medication and the RAI doing it's work, I almost went into a hypo coma and was rushed into hospital.
As for the eyes, I have difficulty remembering timescales as the whole thing was a complete blur of horrible symptoms and it was a long time ago. Once I started to get better, I was determined to put the whole experience behind me and try to get on with my life and not dwell on the bad parts. Consequently, I think, through self preservation, I buried lots of the bad memories.
I don't think one person's experience can translate for another because it really can depend on how good the after care is, how long you were ill and un-treated and how severe the condition was in the first place.
I know this is not what you want to hear and are probably desperate to be told, 'it won't take long', but as I said everyone is different.
I really think the good news is that there is much more information available, what with sites like this that can support and hopefully speed your recovery. I am convinced that good nutrition, checking vitamin levels and taking the right supplements will really help you on the road to recovery.
Finally and probably most important, I am also sure that optimal thyroid levels plays a very big part in helping the eyes to recover. It is a good idea to ask for copies of all your blood tests results with the reference ranges from your doctor so you can monitor your own levels against the symptoms and doses of medication.
My TED was severe and active for just over 2 yrs. I'm back to eye hospital in Feb and am hoping they will finally class me stable. My ophthalmologist recommended from the start that I eat five Brazil nuts each day for my eyes
I am 6ys down the line after a tt in 2007, the eye disease is neglected they told,e my eyes were mild to moderately affected to me this isnt the case while l don't think they got better they have stayed same, l avoid eye contact at all costs when l feel as if they look bad and photos,,,,, well omg! I hate seeing pics of myself they look terrible! I only evere seen the endo then once the thyroid come out l was basically on me own! X
I have Graves and mild TED and was only told of selenium after about my 6th visit to the ophthalmologist. She told me to take 200mg. She didn't say whether it was best taken with other vitamins etc, how or why it worked, so obviously didn't know much about how selenium works in the body.
I have been taking it for about 2 months and can't say I have noticed a difference but will stop soon as its then that I usually notice if something has worked or not - if you know what I mean!
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