Hi all, hope everyone is well I've been feeling pretty good lately, and I'm due for another blood test to determine my NDT dose soon. The puffiness in my eyes and face have continued to improve, and the difference is quite noticeable.
All of that being said, however, I noticed around the beginning of the year (while still on Levo at the time, and becoming increasingly hypo) that a scaly, dry patch on my left eyelid had appeared that didn't improve with moisturising or changing the products I use on my face. It's the only part of my whole body with this weird dry, scaly texture, and my other eye is unaffected as well. A couple of months later (also before NDT), I remember an instance when I was out with friends and my eye became really itchy/painful out of nowhere, and rubbing it made it become really red, to the point where my friends became concerned. I brushed it off thinking that it might have just been sensitive to secondhand smoke/vape from people nearby to us. It didn't happen again for a while.
Recently though, I've noticed that the scaly patch has spread from just the outer corner of my eyelid, to pretty much the whole of my upper eyelid. Additionally, my eye has been really itchy at least 3 or 4 days a week (particularly at night), and the whites of my eye become really red and tender when I rub my eye (I know I shouldn't, but it's so itchy!). There's no unusual swelling or bulging; in fact, my eyes have been looking the most normal they have in a few years since starting NDT. Curiously, my 'problem eye' seems to be responding more quickly as far as 'de-puffing' than my other eye, since starting on Armour.
I was just wondering if anyone else has had this, or if anyone has any ideas on what this could be? I don't recall feeling quite this way when I had thyroid eye disease, and my eye doesn't look bulgy at all - it's actually far less bulgy than it has been in years.
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lau99
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I have an almost life-long history of eczema and have discovered that ordinary moisturisers do nothing for it.
I'm sensitive to (but not allergic to) lanolin and liquid petroleum (vaseline), and both these ingredients make my skin worse. The usual reaction is my skin gets red, abnormally smooth, shiny and even itchier than my skin was before treatment.
I massively reduced my problems with eczema to the point where I very rarely have a problem any more when I increased my vitamin B12 to top of range/over range. I take methylcobalamin to maintain my high levels. I also make sure my folate stays at a good level with methylfolate, although I don't push it very high.
But occasionally I get scaly patches on my eyelids. And then I do things doctors and pharmacists would disapprove of.
You can buy 1% hydrocortisone cream (a steroid cream) for various skin problems such as eczema and dermatitis, and you can get it without prescription at a chemist. But you get interrogated about why you want it and where you intend to use it.
The reason for the interrogation is that steroid creams will thin the skin if used too often. The instructions for them say never to use near the eyes or on the face. If you told a pharmacist that was what you intended to do with it they would refuse to sell it to you.
I have discovered that if I put a 1% steroid cream on my eyelids just before bed it will have improved a lot by morning, and if I leave it alone it will continue to get better by itself. I very, very rarely have to use the cream a second time, but if I do I use it only at night before bed, and never more than two nights on the trot.
So, my eyelids might get treated with steroid cream about 3 or 4 times a year. It has no noticeable effect on thinning my skin with such little usage.
So, when I buy it I tell pharmacists that I have itchy patches on the back of my knees, or on my feet which won't get better with athlete's foot cream, or under my boobs or anywhere else they won't be able to see. I hate having to lie, but my alternative is to be told to use moisturisers that don't work (and they never believe me if I say that) and make my problem worse. Then I have to speak to a nurse/doctor on the phone, possibly even see them at the surgery, and that is virtually impossible, and would take days, all the time with itchy weeping eyelids.
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If your scaly patches started on the outside corner of your eyelids it may be that you are developing dry eyes which, oddly enough, can start with the eyes watering like crazy. If that is the case you might want to try using night time eye drops before bed. It might help, it might not, but it is worth trying.
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And a bit of a weird suggestion... I've also had good results with "bite and sting" cream, which is usually just hydrocortisone cream under a different name. (So check the ingredients.)
Wow, lots of really useful info here - thank you! I will definitely look into trying this, especially as it sounds quite similar to what I'm dealing with, all the way down to the relevance of B12. The rest of my B vitamins are good, but my folate is quite deficient at the moment and has only been that way for the first time this year, I think - perhaps this could be linked.
Sounds like it could be blepharitis but I would still urge you to see an optometrist as advised by Anthea55 in case there is a connection with thyroid eye disease.
Yes I noticed that you had previously had TED and so felt worried that it could be starting again as I don't know enough about it. I have had blepharitis with some of the same symptoms as you had but thanks to your post I learnt from Humanbean that she felt she needed good folate levels to counteract her skin condition. My folate level is currently very low even though I've been taking methylfolate for the past year and I do have psoriasis of the scalp and upon reading up I now see people with this skin condition very commonly get blepharitis so thanks to you I have learnt something new. So pleased you are doing so well - keep it up!
If using any eye drops, sprays, lotions or potions, even those prescribed, please ensure that they are all Preservative Free.
I developed thyroid eye disease a few years post RAI thyroid ablation for Graves and prescribed eye drops and a gunky grease to use at night and my eyes became much worse.
A referral to a NHS eye consultant diagnosed blepharitis and explained in great detail how I should clean my eyes and wrote a further prescription for the same ointment..
I came home and followed the process of cleaning my eyes but the pain and discomfort wasn't resolved and so I then started researching myself.
I found that the build up of ointment can block the tear ducts, and tiny glands at the base of the eye lash and simply compound the problem.
I used a warm clean damp flannel pad over closed eyes and gently massaged around and around my eye lashes.
I purchased my own Preservative Free eye drops and the situation resolved itself.
I mentioned this to my doctor and suggested she should also advise the eye consultant that Preservative Free is better tolerated.
Smoke filled rooms will likely exacerbate your eye issues, as might direct, bright sunlight.
Thank you so much for this, Penny I've just ordered some preservative free eyedrops online which will hopefully arrive tomorrow, and I'll be looking into picking up some of the other members' suggestions at Boots later today. Last night both of my eyes were feeling really dry, to where I couldn't sleep before putting some lotion on my eyelids, so I'll definitely try to get some ointment today. I really hope it isn't TED trying to make a comeback...
Hi lau99, it’s so nice to hear that you are feeling better & your TED has settled. Your current eye symptoms sound a lot like blepharitis, so I would try heated eye patch to soothe and to release any oils that might be causing a blockage. I bought one on Amazon that you pop in boiling water for a few minutes, then in a case before putting on your eyes. This worked for me. Definitely see your optician if things don’t improve with over the counter treatments.
Even though my TED is in remission, I continue to take 100ug selenium daily, plus lutein and zeazanthin (for overall eye health) and use preservative free drops often (HycoSan or Hyloforte). I always avoid smoke, be it from a fire or a cigarette and constantly wear reactive glasses outside as I am very sensitive to light. Windy days also dry my eyes, so I wear larger framed glasses and have a bottle of eye drops to hand.
Thank you so much, Buddy I am really relieved that a large portion of my symptoms did seem to be undermedication after all...fingers crossed that I continue seeing improvements!
Those are some really good suggestions, thank you! I also find that despite (hopefully? most likely?) being in remission for TED, my eyes have never quite been the same...they are a lot more sensitive to all the things you mention that you avoid. Although I don't generally like to wear them, I also bought some large framed glasses around this time last year that I use on particularly windy days if I'm outside
you can buy Blephaclean wipes from Boots or Amazon which have resolved a similar sounding situation for me. They were recommended to my husband by an optician at Vision Express
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I've been feeling pretty good lately, and I'm due for another blood test to determine my NDT dose soon. The puffiness in my eyes and face have continued to improve, and the difference is quite noticeable. 
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