I have had problems with one eye for 9 months now. Started with gritty feeling, watering eye. Inflammation and baggy eye bags. Then fatty bumps appeared to be coming through above one eye, and one eye ball seems slightly higher than the other, and pushed forward slightly.
Then came the double vision, but this comes and goes, bad in the morning when I wake up, then ok during the day, then about 3pm it starts again, as I get more tired. This is the worst bit as it is so disorientating, and I feel unsure crossing the road even. My long sight in one eye has also deteriorated quite quickly, it seems that eye is slower to move/catch up with the other. Watching TV the screens look very far apart, one on top of the other.
My opthalmologist says she's reluctant to diagnose TED because my TSH, T3 and T4 are normal, though all low end of normal. However, my TRAB (TSH receptor Antibody) test came back positive at 2.6. She thinks it is Myasthenia Gravis... but I don't have any of those symptoms. Or possibly Sjogrens Syndrome.
Also, does anyone think that HRT is linked to Thyroid Eye disease, and should I come off it? It's the only drug I take, and so far I have lived an extremely healthy life with no illness at all. No family history either.
Also I feel really anxious all of the time.
Does this sound like TED to you?
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Agh2001
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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). It would be useful for you to share your thyroid blood test results (and ranges).
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.
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 for overall eye health, so this is worth considering if you have any concerns about your vision.
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.
I have never heard of a link between HRT and TED, so I wouldn’t worry about stopping this medication.
Please be reassured, my eyes now look nothing like they did when my TED was active, 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.
The only bloods that game back out of range/low were my White blood cells & Iodine
I've also had an MRI which indicated TED, according to the radiologist, albeit A typical. With enlargement of the left inferior rectus muscle & medial rectus.
But my opthalmologist says its just so rare to have normal TSH with TED that she is unwilling to medicate me. She also said that the eye muscle just being inflamed doesn't show indicate anything except that it's inflammed.
It seems to me that everything points at TED.
Has anyone found that either Acupunture or Cryotherapy help?
Your symptoms definitely look like TED. As SlowDragon has advised, do test ferritin, folate, and B12 as having these optimal supports thyroid health. I would look to improve vitamin D via supplementation. I personally use Better You sublingualD3/ K2 spray, but others prefer tablet form.
There is at least some evidence that TSH receptor antibodies are a critical part of TED.
However, both stimulating AND blocking antibodies appear to act similarly with respect to TED. And, whereas the stimulating form will lead to Graves Disease (hyperthyroidism), the blocking form might lead to Hashimoto's or hypothyroidism. (Though I suspect there is also the possibility of there being little overall impact on thyroid hormone levels.)
I just happened to have this piece of the Thyroid Diseases Manager open when you posted!
Thank you so much, I've already had some great advice here!
My bloods are:
TSH: 0.98 (range 0.3 - 4.2)
Free T3: 4.3 (range 2.5 - 6.0)
Free T4: 12.5 (range 9 - 23)
TRab: 2.6 (positive for graves)
C reactive protein: 1. (range 0-5)
Vitamin D : 57. (range 50-150)
The only bloods that game back out of range/low were my White blood cells & Iodine
I've also had an MRI which indicated TED, according to the radiologist, albeit A typical. With enlargement of the left inferior rectus muscle & medial rectus.
But my opthalmologist says its just so rare to have normal TSH with TED that she is unwilling to medicate me. She also said that the eye muscle just being inflamed doesn't show indicate anything except that it's inflammed.
It seems to me that everything points at TED.
Has anyone found that either Acupunture or Cryotherapy help?
My opthalmologist says she's reluctant to diagnose TED because my TSH, T3 and T4 are normal, though all low end of normal. However, my TRAB (TSH receptor Antibody) test came back positive at 2.6.
Please add actual TSH, Ft4 and Ft3 results and ranges
Was test done early morning
ESSENTIAL to also test vitamin D, folate, B12, ferritin and BOTH TPO and TG antibodies for autoimmune HYPOthyroid disease ( hashimoto’s)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thanks so much, I've just ordered a Medicheck testing kit.
My bloods are:
TSH: 0.98 (range 0.3 - 4.2)
Free T3: 4.3 (range 2.5 - 6.0)
Free T4: 12.5 (range 9 - 23)
TRab: 2.6 (positive for graves)
C reactive protein: 1. (range 0-5)
Vitamin D : 57. (range 50-150)
The only bloods that game back out of range/low were my White blood cells & Iodine
I've also had an MRI which indicated TED, according to the radiologist, albeit A typical. With enlargement of the left inferior rectus muscle & medial rectus.
But my opthalmologist says its just so rare to have normal TSH with TED that she is unwilling to medicate me. She also said that the eye muscle just being inflamed doesn't show indicate anything except that it's inflammed.
It seems to me that everything points at TED.
Has anyone found that either Acupunture or Cryotherapy help?
If each drop contains 1000 iu's then 4,000 iu's is a good dose. I would increase the dose to reach the 100+ leveland re-test before winter. ( if well tolerated ) Are you taking Magnesium ?
As someone with TED - Yes it does sound like TED which can run independently from Graves and you have the antibodies that cause it. Mine was confirmed with a MRI. Like you, double vision was intermittent at first and I would close one eye for safety crossing roads. When it deteriorated I was given a stick on prism which really helped. TED plateaus then tails off and you can't really know at the start if double vision will be permanent. Buddy has given you good strategies for coping and it would be good to know your actual thyroid results. My eyes deteriorated while my fT3 was low in range.
Thank you so much, interestingly my ophthalmologist said that with TED my double vision should be permanent, as it was intermittent she said it couldn't be TED. Annoying!
My bloods are:
TSH: 0.98 (range 0.3 - 4.2)
Free T3: 4.3 (range 2.5 - 6.0)
Free T4: 12.5 (range 9 - 23)
TRab: 2.6 (positive for graves)
C reactive protein: 1. (range 0-5)
Vitamin D : 57. (range 50-150)
The only bloods that came back out of range/low were my White blood cells & Iodine
I've also had an MRI which indicated TED, according to the radiologist, albeit A typical. With enlargement of the left inferior rectus muscle & medial rectus.
But my opthalmologist says its just so rare to have normal TSH with TED that she is unwilling to medicate me. She also said that the eye muscle just being inflamed doesn't show indicate anything except that it's inflammed.
It seems to me that everything points at TED.
Has anyone found that either Acupunture or Cryotherapy help?
The only bloods that game back out of range/low were my White blood cells & Iodine
I've also had an MRI which indicated TED, according to the radiologist, albeit A typical. With enlargement of the left inferior rectus muscle & medial rectus.
But my opthalmologist says its just so rare to have normal TSH with TED that she is unwilling to medicate me. She also said that the eye muscle just being inflamed doesn't show indicate anything except that it's inflammed.
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I would have expected the opthalmologist to be working with an endocrinologist to give you the best care. Can you add the ranges for your results and people will comment. They look a bit low which as Buddy and I both found can exacerbate TED
It is reassuring to see your fT3 isn't too low. It is high in relation to your fT4 which is typical for Graves. Hopefully the steroid infusion will help but it's probably a case for watchful waiting with regular checks on your thyroid levels until it runs its course. Good luck.
I’ve have abnormal hyper results for a decade, lots of typical TED symptoms. An MRI confirming TED, but ophthalmologist refuses to consider TED because I don’t have positive antibodies. There are researchers articles confirming TED occurs withoutTRab formation & hyper results - It’s just that TRAb often occurs with hyper Graves - which occurs with TED.
Im beginning to think doctors just prefer not to diagnose or name something, just treat when forced to.
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