[shasha]

#1059448

Hello all,

I was diagnosed with TED a few months ago. My first symptom was slight swelling of my left eyelid. My eye doctor prescribed antibiotics thinking I had an infection of a lacrimal gland. Two weeks later I had double vision in the left eye if I looked up or to the left. I had a CT scan and there was noticeable thickening of the superior rectus muscle and the doc interpreting the results noted that he suspected TED – this was prior to any diagnoses of thyroid problems. Subsequent testing revealed that I was hyper and have Graves and TED. I am taking methimazole – and my lab values have improved – the eyes have not. I have double vision and pressure in the left eye, which now bulges beyond my brow bone. I have severe edema in both eyes above and below.

If I have to work for too many hours on the computer, or don’t get enough sleep, my field of vision is very narrow in the left eye, and I now have to tip my head back to get a clear look at anything. I am not being treated with steroids – neither endo or ophthalmologist felt that was indicated unless there was pressure on the optic nerve. I am being told that I must wait till the “hot”phase of the disease is past and then surgery can be performed to “fix” the issues.

I had a reaction to the methimazole after the first month and the dose was cut in half. I did fine for the next month and the same symptons returned – severe nausea, joint pain, muscle weakness, flu feeling. I repeated labs this week and TSH is up from .005 to 1.31 – T4 free was normal and now is a lot lower – but not out of range (.90). I suspect he will lower the dose again when I see him.

Is anyone else receiving the same info on the treatment (or lack of) for TED? As you all know it’s beyond frustrating to see the disfigurement of your face and not be doing anything to stop it’s progress.

Thanks for any info!

Shasha

[Kimberly]

#1174751

Hello – This page from the International Thyroid Eye Disease Society explains the typical course of TED and when surgical intervention is appropriate.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroideyedisease.org/the-course-of-ted/

For patients who have severe inflammation, but aren’t yet in the “inactive” phase and ready for surgery, steroids can be extremely helpful — but the down side is that there can be some very serious side effects. So this is a decision that you will want to make with your doctor.

There was a small study out of Italy within the last year or so that indicated that Selenium might have a beneficial impact on TED in the early, mild stages. But check with your doc on dosing, as excessive levels can be toxic.

Take care!

[Bobbi]

#1174752

Sasha, the treatment options available to our opthamologists for the TED have serious side effects or potential complications or both. As a result — and also due to the fact that TED does tend to subside some all by itself once the cold phase has come — our doctors tend to wait and watch. It is terribly frustrating when you are having symptoms to have the docs do this, but it is typical.

[shasha]

#1174753

Thank you so much. I will check out the link. Btw – I am taking 200 mg of selenium and also curcumin (turmeric extract), flax-seed oil and Vitamin D-3. I have informed my endo of all the supplements and he had no comment.

I appreciate your reply

[shasha]

#1174754

Thank you Bobbi and Kimberly for your replies. It does help to know that my treatment or lack thereof is not unusual.

I should add, I saw my eye doctor yesterday, he checked for optic nerve inflammation (there is none so far) and measured my eyes for movement, very slight in the left eye. He also measured my visual field, internal eye pressure and took a photo of the interior of my eye. The pressure in my left eye increases dramatically if I look up. The superior rectus muscle of my left eye is quite enlarged and that is causing the pressure and double vision. Fortunately, there is still room there before the optic nerve will be compressed. Hopefully things will resolve before we reach that point.

He is fitting me for new glasses to sharpen up my vision and hopefully help me cope with the double vision in my left eye. He also recommended a transition lens that will darken slightly in the bright fluorescent lighting at my job. Genteal gel drops are helping enormously with the dryness and irritation.

I think the glasses will also give me some confidence, especially when speaking to a group or meeting someone new. I’m not a shy person and typically don’t worry much about my looks, however, I would like people to focus on the content of my speech and not on the oddness of my eyes.

Thanks again,
Good luck to all and much appreciation for this place to share.

Shasha

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