I have Hashimotos and have been on 200mg levothyroxine for some years.
For the last 2 years I have had eyelid swelling which has now affected my vision. I tried my GP for help but to no avail.
This year whilst having an eyetest st Specsavers the optician also tested my field of vision. The result showed a problem and I have now been referred to NewMedica who have now referred me to a waiting list to see an eye specialist who will know of Thyroid Eye Disease which is what the consultant I saw today says he suspects.
Has anyone had anything similar?
Can anyone offer any advice please?
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A1Amber
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Care for TED can be poorly recognised and treated.
Most medics say it’s only associated with Graves, although there is more acknowledgment that those with Hashis are diagnosed with TED.
I found research saying there are also cases without thyroid function issues and antibody formation.
I do have hyper but not autoimmune and therefore told my eye issues are not related. (Most doctors say TSI or TRab must be positive)
It’s recommended to take Selenium - 200mcg at first but this should dose should only be taken for 6 months. Then reduce to 100mcg . Bear in mind selenium rich food can take you over the maximum requirement.
*Preservative* free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I found warm compresses (eg wheat bags, microwaveable gel masks) helped. Very gentle massage toward lash line. Both these “unclogs” the blocked Meibomian Gland & lipid oil layer protects eye and retains the water. Some find cold compresses more comfortung if swollen.
If you like to moisturise near your eye area use water based clear gels not oil / cream. I did this as developed milia white spots round eye. I found the puffiness & swelling reduced when I switched. Serious complications are rare + changes in appearance often improve greatly within months.
Do not Google and panic over worst case scenarios. Keep a photo record of eyes eg take a photo every 2 or 3 weeks. Many report TED triggered or worsened when thyroid levels are low / fluctuating. Are you well managed?
Hi, your information was very informative, I went to the TED site you posted, but it seems to be a very broad subject. Can I piggyback and ask a bit more? My eyes have always been puffy and got worse as I got sicker and went un-DX'd, got a little better once medicated (Hypo/Hashi's). My eyes the last few years are more and more swollen, especially went I get up, I have blamed it on the mucous factory going on in my head at night. The swelling with hot and cold compresses does help along with just being upright. When I came to France 5 years ago I was on 3 mg of Armour, but the doctors here go nuts with my numbers and kept lowering and lowering - plus I ran out of Armour after 2 years (made a trip back) and am now on Euthyeral (sp?) t4/t3 synthetic combo, but down to 1 mg. I notice I do not metabolize meds well anymore and my eyes some days are swollen shut. Again, I blamed it on a very old house, and my stuffed up head, both the bottom and top are very swollen. I just got back from 3 weeks in Colorado and realized the swelling was not as bad there. I also have blocked tear ducts, so that doesn't help the situation either. My eyesight continues to get worse and worse prescription wise with me having to get new lenses every 2 years, I am at 18 months now and notice that I am holding things further away in order to see. I didn't want to try and join the TED UK site thinking maybe it is just for UK people. TIA
I am really confused as to what you are asking me to do, other than start a new post - which I won't do as I really don't know enough about the subject to post by itself, just thought I could get some general info - sorry.
Sorry, I’m not sure I can recommend a website or offer information that gives general information - that’s not too broad.
TEDct (charitable trust) have a national helpline which is UK based. I know they post out information packs to new members & that might not be available overseas, or there may be a fee.
They email members with webinar dates on related subjects so that might be something you can join.
Perhaps email them & ask.
I made an error before as there isn’t a site called “TED UK”I thought you might have wanted to join “Thyroid UK” but I realise now - (as pointed out by red apple) - you were discussing TEDct.
Sorry for confusion.
Apologies A1Amber as half your post is taken up with another query.
Some years ago now I had eyelid swelling and was investigated for TED. In the end it came to nothing and like many of my symptoms over the years was just there in passing.
I've read a few of your older posts. You desperately need some extra T3, also you haven't addressed vitamins. This can really help many things and I hope you can get yours tested and start supplements. Ferritin, folate, D3 and B12.
Thank you for your reply. I consulted an endocrinologist recently and only on arrival at the private hospital 75 miles from home was I told it was a telephone appointment only! Their admin error! The endo got my gp to do all vitamin tests as she said they should do annually!
Since then I have not had an appointment to discuss the results. The endo has been on leave off sick on a course! Oh dear!
From one hypo to another, I'm sure you are really struggling with keeping on top of everything or even anything. This one thing could make all the difference and you don't appear to be engaging with it much.
Get on to your GP surgery, get a print out of the vitamin results and post them here with ranges. Then make another appointment with the Endo, being sure if it's virtual or face to face. I really want you to get the help you need and to feel better.
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 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. 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 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. TEDct helped me find a TED specialist ophthalmologist in my area. tedct.org.uk
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.
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. In my case, the TED specialist ophthalmologist recommended combination therapy (as I am a poor converter) and the addition of Liothyronine really helped reduce my eye inflammation.
Please keep posting if you need any further advice or support
I was referred to a local opticians who has a nurse (moorfields I understand) who diagnosed and prescribed.appropriate drops etc. It has not cleared up yet but I hope it does. I have also bought 'wipes' to use a.m. and p.m. called Blephasol duo.
I have had the condition previously and it resolved following the advice.
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