TEDS ?

[Pen1966]

How can I have confirmed TEDS now only diagnosed last week had thyroid out over 30 years ago have been referred to thyroid eye clinic thatcwill be interesting

Tsh 6.12 range 0.27 to 4.2

Ft4 22.8 range 12 to 22

Ft3 4 range 3.1 to 6.8

[PurpleNails Administrator]

Most medics say Thyroid Eye disease TED is only associated with hyper Graves, & positive TRab.  This can occur at any stage.

Although there is more acknowledgment that those with under active also suffer with TED. 

Care for TED can be poorly recognised and treated.

I’m hyper from a nodule and have neither autoimmune and half the specialists I see say I have TED - in fact they assume I’m aware I do.  The other half say it not possible. 

Here a list of the thyroid antibodies: 

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies) 

TSI (Thyroid-Stimulating Immunoglobulin)

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)

TPO & TG are associated with Hashi also present with Graves.

TSI & Trab with Graves & TED There a strange overlap with antibodies. 

 Your ophthalmologist specialist may be able to test TRab but GP -say- they can’t.   

TED charitable trust is a Informative site about TED & symtoms

tedct.org.uk

Things you can do: 

Taking a selenium supplement is said the help protect the eyes.  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.

*Preservative* free eye drops & wipes.  Rotating different brands seem to help.  Liquid versions for daytime & gel versions at nighttime.    I recently been using ocufresh carbomer lubricating eye gel it a light gel which “melts” so best of both worlds. 

For when eyes are dry use warm compresses (eg wheat bags, microwaveable gel masks).  Very gentle massage toward lash line, 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 retains the water.  

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

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 with vision or changes to eye appearance are very rare.  Don’t Google and panic over worst case scenarios.  Can help to 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 / high or fluctuating are your function levels stable?

Post TSH FT4 & FT3 result & ranges. 

[Pen1966 in reply to PurpleNails]

My levels have been all over the place waiting on results from MMM will post once I have them

[Pen1966 in reply to PurpleNails]

Tsh 6.12 range 0.27 to 4.2

Ft4 22.8 range 12 to 22

Ft3 4 range 3.1 to 6.8

[PurpleNails Administrator in reply to Pen1966]

Low FT3! 

TSH high & FT4 high. Was draw taken couple hours after taking dose?  Could be falsely high.  

Poor conversion is your issue. 

Levo is T4, think of it as a “pro hormone” - FT3 is your active hormone and it’s likely too low for you.  

Next step optimising folate, ferritin, B12 & vitamin D. If these are good conversion could improve.  Have they been tested? 

[Buddy195 Administrator]

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). My Endo suspended TED via symptoms and I saw several ophthalmologists. However, only started to improve when I saw TED specialist ophthalmologist.

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

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. Please keep posting if you need any further advice or support.

[Pen1966 in reply to Buddy195]

Thank you hoping specialist at hospital will do more advanced thyroid bloods than gp does just don't know how I got it when thyroid was removed all those years ago

[Buddy195 Administrator]

TED can occur even if people are euthyroid (no thyroid condition)

[tattybogle]

(I think ?) Ted is not caused by thyroid hormones themselves .. it's caused by the graves antibodies ~ (the ones that caused the high thyroid hormones ~ TRab = Thyroid Stimulating Hormone Receptor antibodies = TSHRab ~all same thing )

So having the thyroid removed and / or having normal (or even low) thyroid hormone levels doesn't necessarily stop TED happening .

if the TRab antibodies are still there , (or come back again), then Ted can still happen ...( i think)

it's because (for some curious reason) there are some bits of the eyes that have the same TSH receptors as the thyroid does .

TRab antibodies affect TSH receptors (hence their name ~TSH receptor antibodies)

They affect the TSH receptors on the thyroid gland by acting just like TSH , and causing the thyroid to make more T4/T3 ~ hence graves hyperthyroidism.

But they can also affect those TSH receptors that are in certain bits of the eyes / eye muscles .. can't remembe exactly which bit of the eye has them.

Not 100% sure of my fact here ... but i think i'm on the right track.

Then it get's more confusing because some people might get TED and not apparently have any TRab ... i think ?

Sorry for all the .. 'i thinks'

[PurpleNails Administrator in reply to tattybogle]

With Graves the immune system produces antibodies which affect the TSH receptors causing the overproduction. With TED the immune system is attacking fatty tissues & extraoccular tissues causing swelling.    (But it’s not the TRab antibodies themselves, attacking the eyes) 

The underlying mechanisms & relation to thyroid autoimmune disease isn’t understood.  

TRab (& TSI) being the -most related- known biomarker which can be tested available (outside research settings) so it the go to tool to diagnose it.  

TED can apparently be shown on MRI or CT scans, I’m on -I expect a long- wait list.  

So as someone with eye symptoms but no thyroid autoimmune - will be interesting what it reveals - It wouldn’t be the first time my family have sent doctors back to rewrite the text books. 

Those who develop serious eye concerns but are negative for antibodies are likely treated for the symptoms ie decompression surgery /  given drops for dry eye or infection. 

I’m in a difficult position as many doctors assume I have TED but the doctors who are happy to say I don’t (& the ones who suggest I undergo RAI) - aren’t able to explain what has caused proptosis & eyelid ptosis 1 side.  I’m  just supposed to be reassured they don’t “think” it’s TED.  

[Pen1966 in reply to PurpleNails]

I had ocular mri on Wed see orthotics wed next week so will see what they say

[PurpleNails Administrator in reply to Pen1966]

Ask for a copy of the written report.  Doctors often just give a verbal outcome if any next steps are suggested. How was the scan? Did it take long? 

[Pen1966 in reply to PurpleNails]

It took 15mins I think and I will ask for report

[tattybogle in reply to PurpleNails]

Thanks for tidying up some of my "i think's"