Thyroid Eye Disease: Its Causes and Diagnosis - Thyroid UK

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Thyroid Eye Disease: Its Causes and Diagnosis

ling
ling
28 Replies

Pretty good detailed piece on TED

reviewofophthalmology.com/a...

TSI seem to be particularly important, as the levels of TSI are directly correlated with clinical severity in TED, with a level greater than 400 suggesting moderate-to-severe disease.14,15 TSI may also help predict the development and severity of TED in both adults and pediatric patients.16,17

28 Replies
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Ladybex

Link no longer available 😕

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ling
ling
in reply to Ladybex

Sorry, not sure what u mean cos I can still see it. Can u try here?

reviewofophthalmology.com/a...

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ling
ling
in reply to Ladybex

Please let me know if it works. Thanks!

1 like
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Ladybex
Ladybex
in reply to ling

Thank you that was well worth reading Ling ..

1 like
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ling
ling
in reply to Ladybex

It certainly is!

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Buddy195
Buddy195
in reply to ling

Thanks for this link. I’m now having problems with gritty feeling, watering and some redness in my right eye.

As I pescatarian I’m a bit worried about iodine levels. How does iodine make TED symptoms worse? Which seafood should I avoid/ limit?

Many thanks for all your postings!

1 like
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ling
ling
in reply to Buddy195

Hi Buddy.

Really sorry to hear that : (

The gritty feeling is pretty awful. Are u using any eye drops or gel?

I had the gritty feeling for a short time. It passed on its own with no treatment. I do, however, use Vidisic gel for general maintenance of dry eyes.

On hindsight, what is helpful is to drink lots of water and stay well hydrated. When the eyes are that dry, if the body is dehydrated as well, it will make the eyes feel even drier.

Diet wise, try eating more fruits and vegetables in red and yellow colours. They contain nutrients beneficial to the eye. An ophthalmologist also said omega 3 supplements were helpful for dry eyes.

Re pescatarian and iodine

Was your Graves confirmed via TRAb or TSI antibodies tests?

Do you have Hashimoto's? Have u had TPO or TG antibodies tested?

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Buddy195
Buddy195
in reply to ling

Thanks so much for your advice- I’m taking omega 3 but could up my dose and I could drink more water. I’m taking 200mg selenium- think 400mg is daily maximum, so could possibly up that.

I’m using Hycosan extra drops. Haven’t heard of the ones you recommended but will search on line for them.

I’m super confused about my auto immune thyroid diagnosis. Endocrinologist said that antibody tests showed I had Graves in 2016 with antibodies of 343 (now 358). He said they should be under 60 (sorry - no idea what ‘they’ are- which test he was referring to!) My GP also confirmed that TP01 thyroid peroxidase were raised. Endocrinologist this month said I was still showing symptoms of Graves but was now underactive (hence needing Levothyroxine). However, I didn’t ask for print outs, just accepted that I still had Graves. From link on ‘thyroid antibodies’ from this site, am I right in thinking I could have either Graves/ Hashimotos or even both?

I’ve just ordered my first thyroid/ vitamin kit from Medicheck, will this show if my Graves is now Hashimoto’s?

I’ve got to say that I’ve learned more from this forum in my first week of joining than I have in 3 years of GP/ endocrinologist visits. Many, many thanks for your support and advice x

1 like
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ling
ling
in reply to Buddy195

Thanks for sharing Buddy.

1) If you are already eating fish regularly, then no need to take too much omega 3.

2) Selenium. Please consult a doctor before u increase your dose. Too much of this mineral can do more harm than good. Personally, I think it would be best to test your levels before upping your dose.

3) Its very important to find out exactly which antibody that 358 level one is. It will confirm your diagnosis, be it Graves or Hashis. It's also possible to have both.

4) Having TPO antibodies mean you have Hashimoto's.

It's critical that you get a copy of all your blood tests results with the ranges.

5) Endo and GP. Both of them should be kept informed of all the antibodies you have once u confirm it for yourself. You need to get the correct diagnosis.

Get all the test results and post them in a new post asking for help with interpreting. We have people with Hashis here who can give you good advice. More than your endo or GP.

Ask your iodine question there as well. If it's Graves, I can tell you clearly, you should not be overdoing the iodine. But now that there's a possibility there's Hashimoto's in the picture, others familiar will be better able to advise you. In the meantime, before all this is sorted out, watch your intake of iodine as this is one mineral closely associated with the thyroid. Perhaps when the situation is clearer, you might ask to get tested for your iodine level if necessary.

6) Vitamin kit from Medicheck. Sorry I'm not familiar with this as I'm not in the UK. If it's purely testing vitamin levels, then I don't think it tests for antibodies. U should try and check this on your end.

First and most important thing to do, Get your blood test results, all of them if possible, and post them on this forum.

God bless you, you can do it : )

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Buddy195
Buddy195
in reply to ling

Hi Ling,

You are so very kind. Thank you for all the advice. Will ask GP for a print out of all my tests.

The home test I’ve got is for TSH, FT4, FT3, TGAb, TPOAb (plus B12, D, folate, ferritin). Unfortunately can’t do it for one week as instructions say stay off B12 for one week & only stopped yesterday. Will post results when I get them. Many thanks.😊

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ling
ling
in reply to Buddy195

Great, that's a good test to get done.

Here are the antibodies we are looking for-

Graves

Thyroid stimulating hormone receptor antibodies (TRAb)

Thyroid Stimulating Immunoglobulin antibodies (TSI)

Hashimoto's

Thyroid peroxidase antibodies (TPOAb)

Thyroglobulin antibodies (TgAb)

Graves and Hashimoto’s

Thyroid peroxidase antibodies (TPOAb)

Ok! Waiting for your new post. Past and current results if you have them all. With the ranges.

Past and current results will show what you started with and what it's evolved to now.

Best wishes : )

Reply
Buddy195
Buddy195
in reply to ling

Thanks Ling 😊I feel stronger already knowing that I’ve got support online to understand readings and information. Feel as though I’ve been lost in a maze for past 6 months. Only wish if found this forum sooner!

Best wishes to you.

1 like
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ling
ling
in reply to Buddy195

Thank you.

Yes, this site is pretty amazing.

We can be of such help and support to one another : )

Let me know how your gritty eye feeling goes.

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Angel_of_the_North

Link does work

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ling

Appreciate it. Thanks!

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Fruitandnutcase

Ling - I’ve got it, is there a link to part 2? I see this one is dated November 2018 so I imagine it may be available now and it would be interesting to read that too. Thanks

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bookish

Here is the link to part 2 reviewofophthalmology.com/a...

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Fruitandnutcase

Thank you 😊

2 likes
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bookish

Hi Ling, really interesting, thanks for posting. Best wishes

1 like
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ling

I really like how it delves into the details of TED. Reading the clinical manifestations, it felt like reading my own experience in the first 12-18 months.

Going to see the eye specialist next week. The right eye is problematic. At very least will have the intraocular pressure checked for the dreaded glaucoma.

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Geogeor

I was diagnosed with blepharitis last year. I hadn’t connected it my being Hashimoto’s before now.

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ling
ling
in reply to Geogeor

Hi Geogeor. How does your blepharitis present?

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Geogeor
Geogeor
in reply to ling

Dry, itchy / painful, with a bump underneath / just at the surface of the eyelid. Sometimes some ooze, too.

I can’t wear eye make up anymore, because my eyes get infected soon afterwards.

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ling
ling
in reply to Geogeor

Seen the ophthalmologist?

The bump at bottom of eye, could be a sty. But it's oozing, so better to get it seen to. You don't want the infection to spead and affect inside your eye

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Geogeor
Geogeor
in reply to ling

Thanks. Yes, it was the opthalmologist who diagnosed blepharitis a year or so ago, when it first started. She said you may be more likely to get it when your immune system is run down..

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ling
ling
in reply to Geogeor

Thanks for sharing : )

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Santos82

So this means that surgery, radio and anti-thyroid medications wont eliminate TED?

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ling
ling
in reply to Santos82

The fact about TED, is that once it develops, it becomes an individual condition on its own.

For most folk, getting the primary disease, be it Graves or Hashimoto's, under control, helps with calming the TED down.

Bringing down thyroid antibodies levels also helps with TED. Carbimazole therapy helps bring down Graves antibodies levels as it simultaneously treats the Graves.

TED has active and inactive phases, and these could follow the path of your primary disease.

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