Thyroid Eye Disease

[Meerkat1234]

I am having trouble with my eyes, can’t move the up, down or side to side. I had cataract surgery four years ago and after that always has pain in it. I didn’t know I had Hashimotos then. Now need cataract surgery in the other eye. I have been reading about TED and I have a lot of symptoms. Does anyone else have this.

[SlowDragon Administrator]

Buddy195 has lots of experience and knowledge of TED with Hashimoto’s

Hopefully she will pop along

[Meerkat1234 in reply to SlowDragon]

Sorry to interrupt your conversation with another member SlowDragon.

[radd in reply to Meerkat1234]

Meerkat1234,

SlowDragon isn't talking to another member but has tagged Buddy195 in the hope that she will be able to share her TED experiences with you.

My own experience was painful swollen eyeballs that hurt to move side to side or up or down. I now know I must have had TBAb's (TSH receptor blocking antibodies) as have a totally atrophic thyroid gland but I was never tested for TED and haven't had difficulties since.

Sorry to hear you have suffered cataract complications also.

[Meerkat1234 in reply to radd]

Hello radd. Thanks for replying. What did they do for your thyroid gland. Can you move your eyes now. SlowDragon told me to make a new post instead of talking when she was talking to another member.Did you see an eye doctor. Your eyes are like mine with the movements. I had an antibody test but it wasn’t the one you had. Sorry for all the questions but I am really worried and I have to have the other cataract done. I feel so unwell.

[radd in reply to Meerkat1234]

Meerkat1234,

Oh, I see.

I'm sorry to hear you feel so unwell. Conventional medicine doesn't understand the repercussions of thyroid disease. There is often no suggested therapeutic options but only interventions given to deal with the consequences.

Re eyeballs swelling, mine felt extremely bruised and difficult to move around. I had to move my entire head to look to to the side but sight remained unaffected. It happened in the early days of being diagnosed and medicating Levothyroxine that did very little for me. I was extremely miserable as my eyes looked fine and I don't think the GP believed what I was describing.

My eyes also went painfully dry and prickly during this time and it was thought I had Sjögren but later tests proved negative. Both conditions improved after a few months and have never returned although I have woken up with ruptured blood vessels from time to time that look ghastly.

Re thyroid gland, they did the usual nothing but prescribe Levothyroxine to replace the missing thyroid hormones. In hyperthyroidism seen in autoimmune Graves, antithyroid meds are prescribed. I did not have any further antibody testing after my Hashi diagnosis apart from my own private retestings of TPOAb and TGAb's. I tested only these because I had no inkling of the Graves cross-over of auto-antibodies then.

Conventional medicine associates TPOAb's with Hashi and TRAb's with Graves but the reality is there can occur any combination of thyroid antibodies with the highest levels dictating the diagnosis, except they fluctuate so were you to be tested in succession, theoretically you could have Hashi one week and Graves the next with an invisible Hashi smouldering in the back ground. Sadly it all depends on the labs they chose to test at any given time. Personally I think we would all benefit from having all thyroid autoantibodies tested in the early days when attacks are prevalent.

My knowledge of TED isn't huge as my eyes improved quickly but I now know it can affect the wetting of the ocular surface, eye motility and optic nerve function. In later stages it also affects the eyelids and causes tissue swellings and fibrosis that leads to eyeball protrusion.

You could ask for TRAb's to be tested but they might refuse if you already have a Hashi diagnosis. I would suggest you do everything you can to reduce possible high autoantibody levels. The biggest contribution for many is to go gluten free. Some need to be dairy free also. Anti-inflammatory supplements include Vit C, Vit D, fish oils, tumeric/curcumin resveratrol, etc.

I have used a supplement called Kapparest when my antibodies were very high. It is expensive but contains a combo of natural compounds that deal with the exact inflammatory cytokines (chemical messengers) elevated in thyroid autoimmunity.

There are other members with TED & Hashimotos who will hopefully offer your their experiences.

[Meerkat1234 in reply to radd]

I replied to you but don’t know if it was sent properly. If not thanks radd for your reply. It has helped me a lot. 🙂

[BonnieG123 in reply to radd]

Radd, should meercat have cataract surgery with eye problem unresolved?

[radd in reply to BonnieG123]

BonnieG123,

I don’t know but it would certainly need some discussion with health professionals.

[HJC321]

Hi Meerkat - I had Thyroid Eye Disease and it was uncomfortable looking up, left, right and eyes felt generally uncomfortable. I spent years being monitored at the hospital, just incase it affected the optic nerve. Thankfully it didn’t. The side effects of TED on the eyes were pinned back eyelids, for which I had NHS ‘ops to lower eyelids and it also caused below-eye bags - which I paid privately to have done.

There is an organisation called TED that will supply helpful information.

Hope this helps x 🙂

[Meerkat1234 in reply to HJC321]

Hello HJC321 Thanks for replying. Thank you for telling me about your eyes. I had to go to hospital after an opticians visit because he said the optic nerve was swollen. This was quite some time ago. I had double vision. I didn’t know I had Hashimotos then.

[PurpleNails Administrator]

With TED the immune system is attacking the tissues round the eye, it can be worse in 1 eye. It does occur with under-active thyroid.

Many opticians, doctors & specialists say TED only occurs with hyper Graves and positive TRab. Here’s a post with links to articles / Information showing otherwise.

healthunlocked.com/thyroidu....

TED charitable trust is a Informative site about TED & symtoms

tedct.org.uk

Things you can do If you think you have TED (or TED like symptoms). They are not harmful if you do not have TED but research / take caution if you have other eye conditions.

Taking a selenium supplement is said the help protect eye.  200mcg for up to 6 months.  Then reduce to 100mcg.  Can be brought over the counter.  Bear in mind selenium rich food can take you over the maximum requirement.

For dry eyes I recommend warming eye mask & *preservative free* eye wipes / drops / gels. Some like to use drops in day & gel at night, but I use carbomer gel eg Ocufresh gel which is a lighter gel which melts quickly into eye. Rotating different brands seem to help.  

Very gentle massage toward lash line, you can use fingertips or carefully with roller ball tool or gua sha facial stones.  Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow.  This protects eye and helps retains the water.  

If eyes more swollen, inflamed or painful, I switch to cold compresses.

If you like to moisturise near your eye area use water based clear gels not oil / cream, this will lessen any clogging. I stopped using rich creams as developed milia white spots round eye.

Many report that TED triggered or worsened when thyroid levels are low / high or fluctuating.

Serious complications with vision or changes to eye appearance are very rare.  Don’t Google and panic over worst case scenarios, they are always the most severe examples.

It can also help to keep a photo record of eyes eg take a photo every 2 or 3 weeks. I put in an album on phone & hide behind a cute kitty picture. (buddy195 tip 👍)

[Meerkat1234 in reply to PurpleNails]

Hello PurpleNails. Thank you for replying with all the information. I have been googling and panicking. Thank you for telling me about your eyes and the links

[Meerkat1234 in reply to Meerkat1234]

Just one thing I wanted to ask. On my pillow in the morning is greedy yell ow liquid which comes out of my eye because the one I have had cataract surgery on hurts much more than the other eye which I have to have cataract surgery on. Do you know anything about that please.

[Meerkat1234 in reply to Meerkat1234]

Sorry meant greeny yellow liquid. predictive text error.

[PurpleNails Administrator in reply to Meerkat1234]

Has that been an issue since surgery? I could be sign of infection / irritation. If still under specialist make them aware. GPs don’t have equipment to check eyes I always go to optician.

——

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At the bottom on each post there is - blue “reply” icon - heart / like button - “report” in blue writing - end button is “more” with a v arrow.

You go to more v & select edit.

I use to correct typos ect, but if significant alterations are made, it’s helpful to highlight.

[Meerkat1234 in reply to PurpleNails]

Yes it has been like that since cataract surgery. Thanks for telling me about correcting the typos. I kept telling my surgeon and other eye doctors my eye hurt. I had no pain or trouble before cataract surgery. They didn’t take any notice. Only one optician took notice and sent me to my local eye hospital because he said my optic nerve was inflamed. I was experiencing double vision. I had tests but they said he was wrong. Now I have the other cataract in the other eye. I paid privately for the cataract surgery at our Spire hospital because I was so scared of having it done so I asked for sedation. This didn’t work and the pain was absolutely agony. I don’t know who to see about the other eye. I didn’t know about the Hashimotos then.

[Miffie in reply to Meerkat1234]

Cataract surgery should not leave you in any pain or even discomfort . It’s one of the most successful procedures going so it’s completely wrong that your pain was ignored. I hope you do better with the other eye. My cataracts were done with one month of each other. NHS but the service was contracted out to Ramsay Health. I had diazepam on arrival along with a series of numbing eye drops. Surgery took around fifteen minutes on each eye a couple of hours and a cup of tea later I went home. Both perfectly painless. That was a good ten years ago. I have had a few eye problems over the years but not TED. I had conjunctivitis many times until I was in my forties since then not one bout, a detached retina, convergence insufficiency, cataracts, a recent bilateral blepharoplasty and retinopathy, like so many I have very dry eyes. However I have been lucky to have no pain with any at any point. I hope your future treatment is better than to date and you get sone relief.

[Meerkat1234 in reply to Miffie]

Hello Miffie. I think the cataract operation has done damage to the optic nerve. We didn’t know about Hashimotos then. Thanks for replying.

[Helloit]

I have TED it’s in the burnt out phase now so I am having some surgeries to help I have had decompression surgery on my right eye in 2022 and in July I had my my eyelid on that eye lowered so I can now fully close my eye I still have swelling in both eyes but I will only be able to get surgery on my upper eyelids through nhs as lower is considered cosmetic it’s an awful condition that has changed my appearance even though I have burnt out now I still have dry painful eyes most days but I am hopeful that I can see improvement after several years selenium eye masks hot/cold really helps and sleeping with my head raised .

[Meerkat1234 in reply to Helloit]

Hello Helloit. Thanks for replying and sharing your experience. It helps to hear your experience with as you say this awful condition. I am having to deal with cataracts too.My cataract surgery four years ago I thought had really hurt my eye but didn’t know about my thyroid. I can’t see much out the other one so need cataract surgery on that one. My eye that the cataract was removed hurts so much and I cannot move it up down or side to side. I was worrying I had MS and still am because I have neuropathy too and also virtually bedbound. I’m in a bad way just like everybody here. I don’t see anybody getting better.

[Helloit in reply to Meerkat1234]

I’m sorry you’re having so many problems right now I don’t know much about cataracts but you’re symptoms sound very difficult to cope with I’m not sure what eye drops you are using I use hylo forte daily drops and the hylo forte gel at night I also have multiple sclerosis and a few other autoimmune diseases so I hope you get the help you need soon 🤍

[Meerkat1234 in reply to Helloit]

Thank you for your kind reply and I am sorry that you have so many problems. I use Hycosan San Extra eye drops. I will have to get the gel. I think I might have MS too as I am virtually bedbound. How did they diagnose your MS. I have been having numbness in my hands and feet since March 2020 then Covid came and I couldn’t see a neurologist.

[Helloit in reply to Meerkat1234]

I was diagnosed with mri scan and lumbar puncture I have relaxing remitting ms mostly suffering from fatigue cognitive impairment and pins and needles because I have a few autoimmune diseases when one flares up the others follow I really hope you get an appointment soon being bed bound is awful and it can be a relief to find out what the problem is when you receive a diagnosis as the anxiety of waiting can exacerbate symptoms

[pennyannie]

Hello Meerkat :

Can I just add that all eye drops, lotions and potions should be Preservative Free for TED - even those prescribed - check on the label - f in doubt - it should detail this very important fact :

[Meerkat1234 in reply to pennyannie]

Hello pennyannie. I have very dry gritty watery eyes and I use free eye drops. The optician told me to. Thanks for replying.

[Meerkat1234 in reply to Meerkat1234]

Missed out preservative. I meant Preservative Free.

[Fruityflapjack]

Sending a big hug. TED is hard enough to deal with on its own without any added complications.

I was diagnosed with TED in 2020- Both eyes were Intensely itchy, but my left eye was worse -chemosis and restrictive movement -I really struggled to look up or to the left and my eye felt sort of bruised. I then developed hypotropia and double vision. I had decompression surgery in 2022 and strabismus surgery earlier this year which sorted my double vision. I still have a little lid retraction so using lots of eye drops. I use hyloforte mainly, but find Theoloz duo is also very soothing. I like the Theoloz duo gel to use at night, it’s not as sticky or difficult to administer as some of the ointments.

As previously mentioned, I really recommend reaching out to TEDct, they were a lifeline for me when I was struggling to find answers and support. They operate a telephone helpline and their Facebook group is really active with many supportive members and a very experienced admin team which includes a practising occuplastic surgeon.