Help- new to thyroid eye disease

Help- new to thyroid eye disease

Hi everyone,

Although I've had Hashimoto's for a number of years I'm new to TED and seeking some advice/ treatment ideas/ peace of mind.

I had no idea there was anything wrong with my eyes, but I went into the eye hospital about two weeks ago because I accidentally splashed a chemical in my right eye. First two doctors I saw said 'eye is not damaged'. However a week later the eye was in much agony I went back. This time, I saw a different doctor who said I had TED and refereed me for an MRI scan.

The scan was supposed to be yesterday but I stupidly told them about a bit of earring that might still be in my ear and they cancelled it! I have to wait now for x-ray (to see if there is metal in there) and then another MRI appointment.

In the mean time I am scared I am letting it get worse. Since my first appointment I have noticed my right eye is bulging more than the left (see picture, remember my right eye is the one on the left in the pic, that confuses me when I look back on photos!) However, I don't think they are too noticeable currently (clearly not as no other doctor noticed).

My question therefore is, how do people get really bad before any doctor notices and/or people seek help because their eyes are noticeably bulging? Does the disease progress really quickly or does treatment just not work? (i.e by next week could they be properly bulging?)

Lastly, are there any remedies I can try for now while I wait for the scan/ results and conventional treatment?

I am hoping I can get that right eye to go like the left and avoid an operation (do they look like they need operating on? Why do some people need operating on and some don't?

Sorry if my questions seem completely dumb, I am so in the dark about all this. I didn't even know people with UAT could get TED. I thought I was struggling with getting my T4/TSH levels right then the next minute I am facing possibly surgery etc.

Thanks,

Belle

14 Replies

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  • Bellabop, TED is common with Graves but some Hashimoto's patients also develop TED. My sister's Graves TED is far more pronounced than yours but not pronounced enough for surgery. She uses eyedrops to counteract the dryness and grittiness TED causes.

    To the right of your post under Topics are posts on Thyroid Eye Disease.

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    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Ah thank you. And thank you for your advice. I have heard that TED 'calms down' after about 6 to 24 months. I hope that is the case with your sister (and all of us with TED!)

    Take care x

  • Bellahop, unfortunately Sissies Graves TED hasn't improved in the 4 years post RAI but I don't think it is getting worse.

  • Gosh, that's a long time. I'm sorry to hear that. Glad it is not getting worse.

    At the moment I am looking into alternative therapies to attempt to 'tell' my immune system 'steady on, that's the body you are supposed to be trying to PROTECT!'

    I'm on the fence about natural medicine but I think to truely believe it will work is the best way to go about it.

    My horse had a growing squamous cell carcinoma on his eye lid for two years- we gave him aubergine daily and within 10 days it has completely disappeared (not come back yet, that was 6 months ago).

    Something to consider...

  • i too am trying functional medicine..there IS no other way out of this. Mainstream medicine will make us worse and has caused much of my illness.

  • That does not look like thyroid eye disease. see photos.

    google.com/search?q=thyroid...

  • Must say your eyes look normal to me. It may be that now you have been told you have TED you are imagining your eyes being different?

    How do your eyes feel now? Any soreness, grittyness, dryness?

  • That's reassuring. And that's cirtainly a possibility. My right eye is lower than my left (my whole face is lower on the right side!) So it's easy to imagine it's bigger. Though she measured them and said the right was protruding more.

    Yes they (or should I say the right eye) is very painful. Aching in the sockets and feels like a hot, chilli-coated blade or something is caught under my eyelid!

    Apparently both my eyes are extremely dry. Drops are helping a bit.

    Perhaps I can get this under control before they become too pronounced? I went to the eye hospital because I had a splash accident with a string alkali chemical on the lab. I then discovered I had TED...

    Also worth noting my thyroid levels have never been stable. The doctors don't know what to do anymore because my T4 is higher end of normal but my TSH is elevated. So they just keep telling me to take more levo until I can barely function then they tell me to cut back when my T4 goes way too high. It's been going on like this for years.

    Thanks,

    Belle

  • My ophthalmologist recommended selenium 200mcg for my TED and if you smoke, it's time to quit!

    How is your diet?

  • Actually I heard that, what is the best form to take? At the moment I'm just munching on about 4 to 6 Brazil nuts a day!

    I don't smoke and never have (though I was a heavy passive smoker as a small child as most kids born before 1990 were)

    My diet is very good. I eat a bit of everything and take vits every day as well. I am losing weight for no reason though. Lost 1.5 stone since October. Now 6st 12. Last GP I saw told me to increase levo to get TSH down even though my T4 is about 22. I didn't because I didn't want to risk going down the plug hole...

  • Most times I would recommend getting vitamins from food but if the Brazil nuts are grown where the soil is depleted it's a waste of time.

    Apparently, selenomethionine is the best 'type'. I take mine with vitamin E as supposed to help absorption.

    Have you tried going gluten free? It's supposed to help bring down the antibody level?

  • Oh okay thanks for that, good point. I'll get some tablets. Doctor told me to up the omega 3 so I have flax seed oil capsules. Knew I would forget to eat it in any other form.

    I have been gluten free for a year, very strictly. My antibodies were about 270 when I was first tested and when I moved doctors after I had been gluten free for a year and they tested again, they were over 1000!

  • Blimey, that's a bummer! Could it be some other change to your diet?

  • I don't think so because I haven't changed it but good point that there must be some change... why would the thyroid antibodies just quadruple?! This disease is so tricky.

    Thanks again for advice/reassurance. I shall be getting selenium in the form you suggest. I feel it's time to stop just trying (and failing) to treat the thyroid and start addressing the immune system malfunction with alternative remedies. Nothing to lose...

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