[PattiMeg]

#1060126

I had RAI 2 1/2 years ago with the start of TED about 6 months later. My TSH has been consistently around 3.5 for the last 2 years and I have had no hypo symptoms. The TED peaked pretty bad last winter (post eyelid surgery) but seems to have stabilized over the last 6 months. I have pretty severe double vision for which I use prisms and am hoping to have more eyelid surgery this winter to fix the eyelid retraction. The redness and soreness had improved significantly, and much of the swelling had reduced.
However, the last 2-3 weeks the redness and soreness is getting bad again. You TED sufferers know what I’m talking about – that feeling that there is dirt in your eyes and wanting to wear sunglasses all the time. Also looks like the swelling is starting to come back.
I had my TSH checked a few days ago (in anticipation of a quarterly visit with my primary) and my TSH has jumped to 10.5. I am feeling OK, maybe a little less energy then normal, but the only change I can see is a worsening of the eye symptoms. The doc is increasing my Synthroid from 100 to 125 mcg.

My question is – is there a correlation between hypo and TED? does anyone else have any experience with this type of scenario? has anyone noticed a worsening of TED symptoms while hypo? thanks for any feedback you can provide. I am sort of freaking out that I am heading back to where my TED was last winter, and I SO do not want to go there!!

[carolffva]

#1180606

Hi PattiMeg,
I had RAI 15 years ago and then, just over 18 months ago, was diagnosed with TED (I had no eye issues until then). When I got my bloodwork done at the time of my diagnosis, I found out I was hypothyroid. Since then, I notice a worsening of symptoms whenever my levels are not right, in either direction, although am very lucky that I have not needed surgery or prisms yet. It sounds like you have had a very tough time and I am really sorry to hear that. I hope the additional Synthroid helps!
Carol

[Kimberly]

#1180607

@PattiMeg – Yes, there is believed to be a correlation between hypo and worsening of TED symptoms. In fact, the latest medical guidance cautions doctors to make sure that patients are started on replacement hormone in a timely manner post-RAI in order to avoid hypO and reduce the risk of eye complications. Hoping that the dosage change does the trick for you and that you see some symptom relief soon!

[Gabe]

#1180608

Hi all, this thread has been very informative. I’m post TT hypO and my TED has gotten worse…swollen eyes, proptosis, and double vision. I thought TED was more related to the antibody levels but this may explain why my TED got worse when I went hypo. Just got my levels checked after my synthroid was doubled to 100 mcg. I’ll be watching this carefully. Doing my best to avoid surgery but this double vision is life altering, scary, and disturbing.

Thanks! Karen

[Caffer1962]

#1180609

Wow, this really threw me for a loop. I had a similar story–TED not too bad, simple eyelid surgery to correct the retraction in one eye, stable for a bit and then suddenly back into high gear–left and right eye bulging, severe dryness/redness and a lot of swelling. I saw the eye specialist last week and he said it was time to think about IV steroids. Saw my internist the following day, bloodwork the following day, and saw the internist this morning–he upped my Synthroid from 100 mcg to 125 mcg daily. I had no idea the two could be related. I’m supposed to begin IV steroids this Friday, August 16th for 12 weeks. I guess levels should really be checked much more often when battling with TED.

[snelsen]

#1180610

I have a couple thoughts based on my own experience with TED. and some general thinking and wondering…

I have been hyped based on labs, for years. Despite any attempts to lower Synthroid dose, the labs still say I am hyper. All three of them. Of interest, the hypothesis is that I was prescribed too high a dose of Synthroid over many years. No hyper symptoms. Ever. My TED appeared 50 years after my initial Graves’.

I really do not know if there are some good, evidence based studies, relating TED to hypo. I do realize that people with TED symptoms and/or any mild eye symptoms, (dryness, itching, redness, little bulging perhaps-that for THESE people, RAI has seemed to exacerbate TED symptoms.
My thought is that it certainly is possible that many people with Graves’ have some degree of eye involvement and mild TED, with the “other”antibodies doing their thing. And many may not even realize it or associate it with Graves’. Unless they read this excellent forum, or think to mention eye symptoms to the endo.

Certainly some good studies would be nice to read. First, enough data has to be collected, and doctors have to be interested enough and have a motivation to report it, and a study funded. I think most of the observations are just beginning to be mentioned at meetings (TED sx. getting worse after RAI as compared to TT or ATD.) For the time being, it seems to me that when a person who is aware of eye symptoms before RAI, that docs are beginning to prescribe prednisone before the RAI, and if they worsen after RAI in people who had a few symptoms to begin with, or who develop eye TED symptoms after RAI, prednisone might also be prescribed. And there is some tendency, I think, to choose another treatment other than RAI if a person already has TED.

Having said all this, for Graves’, the major goal is to be euthryoid, and avoid hyPER or hyPO.

For TED, the stages and the treatment are the same. Watch and wait in the active phase, using eye drops, lubricant, sunglasses, maybe prisms if they help for double vision. Wait a LONG time, usually between 12-18 months, until there are no more changes and worsening of symptoms, then have the corrective surgical procedures we might need for more severe TED, beginning with OD, then strabismus then upper eyelid, then lower eyelid surgeries.
The only exception to this pathway being if optic neuropathy happens in the active phase, then we need and OD.
Shirley

[Kimberly]

#1180611

Hi Shirley – Lots of good thoughts here! Following are links to a couple of studies that have linked post-RAI hypothyroidism to aggravation of thyroid eye disease:

(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://www.thyroid.org/thyroid-physicians-professionals/thyroid-disease-information/clinical-thyroidology/june-2013-volume-25-issue-6/clin-thyroidol-201325132-133/

http://www.ncbi.nlm.nih.gov/pubmed/15985483

Of course, hypothyroidism is one risk factor out of many that are known (also including smoking, high antibody levels, and high T3 levels)…and there are no doubt many others that researchers still don’t understand!

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