[Bobbi]

#1064754

Hi, Susan:

It depends upon what you mean by "puffy" eyes. I have had a couple of episodes of swollen eyes (think apricot sized) which were likely caused by different things. The first time occurred a couple of months after RAI when I had just gone hypothyroid — and, rightly or wrongly, I blamed it on the swing in hormones. That went away by itself. The second time, a doctor put me on prednisone for a week, saying it was an allergic reaction to something in the environment.

Then, there is the soft tissue swelling about the eyes that is sometimes a part of TED symptoms. Many people with thyroid disease, especially Graves, do get soft tissue swelling. It is often mild, and essentially what is involved is that there is some minor swelling — that isn’t quite the right word, I don’t think, but it’s all I can come up with now — of the muscles behind the eyes, which cause the eyes to move forward just a wee bit, and put pressure on the "fat pads" that surround the eye ball. When these fat pads get pushed from behind, it looks like puffiness. If your eye doctor does think it is related to TED in some way, do NOT panic. Since the advent of soft-imaging techniques it has become apparent that most of us get "some" minor eye muscles changes when we have Graves. But getting some issues does not mean that full-blown eye disease will inevitably follow. The full-blown disease is much rarer than the minor symptoms, which are often ignored because they are so inconsequential.

[susandemarco]

#1064755

Hi Bobbi,
Thank for your quick reply. I can always count on the facilitatiors on this board. When you were talking about the
eye muscle pushing on the fat pad of the eye, if that is the case, does it correct itself, or will the doctor give me
medication to reduce the swelling. It appears to me that my face looks different, although my freinds and family
say it is not noticeable. I think they are just trying to be nice, as it is very noticeable to me.

One more question. In my last post I put my bloodwork levels. It seems to me that I am going backwards. Does this
usually happen until you get the right dose to stablize you. Sometimes I feel I should have kept taking the ATD
medication (PTU) and took my chances with the side effects. I did take them on and off for all those years without
any problem, but m y doctor convinced me, that do to my age,(I am 63) my luck could easily run out.

I thought when I took the RAI everything would be ok, once I was put on the correct dose of synthroid. I hope
I do not have any other surpised.

One more thing. I did go to my regular opthamologist, who incidently my endo recommended, and he checked my eye
muscles, not with an MRI or CAT scan, but with the regular machines that eye doctors use in their offices, and he
said my muscles looked fine. But as I said in my previous post, I do have an appointment with an opthamologist in
New York City at Columbia Presbyterian Hosp, who deals with Graves Disease patients.

Thanks again for your quick replies.

Susan
New York City at Columbia Presbyterian Hospital

[susandemarco]

#1018429

I was diagnosed with Graves Disease about twenty-one years ago. I was on and off ATDS for that time, with my
remission periods getting less and less. In November of last year, my endo said that I must do something more
permanent, and she suggested RAI. In January of this year I had RAI. In March of this year, I became hypo, and was
put on 100mlc of synthroid. I was on that does for six weeks and she then lowered it to 88mlc. and six weeks after
that she lowered it again to 75mlc, which is what I am currently still taking. About one week after being on the
75mlc my eyes started to become puffy. I waited about five weeks and went back to her and had bloodwork done, as
I thought maybe my dose had to be adjusted again. I thought maybe it was to low. But my bloodwork showed that
I was actually boarderline high. My levels were TSH 0.010 and my T4 was 1.60. My question is has anyone out there
had this happen with their eyes getting puffy, and if so, did it work itself out? She told me to stay on this dose until
September when I will go back for bloodwork again.

I have an appointment with an opthamologist that deals with TED next week, but I was wondering if this has happened
to anyone else out there. Any input would be greatly appreciated.

Thanks,
Susan

[Bobbi]

#1064756

I honestly have no expertise to bring to bear on blood test results. I do know that there can be fluctuations, over time, even after RAI or surgery. It’s just that these fluctuations are easier to fix, typically, than when we have our full thyroids being impacted by the antibodies. I know many people who take one dose of replacement hormone for years and years. I often have to have slight adjustments. Most often, I feel just fine, but my standard blood work with the endo shows something she doesn’t quite like, and she ‘tinkers."

No, it is not likely that you will be given anything to bring down the puffiness, if it is the eye muscles pushing the fat pads slightly. The side effects of steroids is significant for women, and unless our eye condition gets horrid, our eye doctors prefer to let nature take its course.

I got more significant eye disease than just the soft tissue swelling. I had that, plus double vision. And after a couple of years, it went away. I still think I have that typical "thyroid eyes" look, but everyone tells me that my eyes look incredibly better. And the double vision went away — without drug or surgical interventions. it was a very long couple of years, but the disease does go into remission.

[jlw]

#1064757

I have TED associated with Graves. I have not had RAI, but am on my first chance of euthyroid (which is not going well). The puffiness comes and goes. My eyes are worse when I am low – hypER. They are not attractive at all right now. Pictures of me are very telling. I don’t tend to think about it unless I look in the mirror or see a picture of myself. I see the puffiness under my eye. I have dark circles. My eyes continually feel like they are dry and scratchy or like they have something in them. I also feel pressure behind my eyeball, like something is pushing slightly on them.
I use lubricating drops at night, and an eye cleaner in the morning. Cold compresses can help too. When my levels are closest to normal for me, my eyes aren’t an issue. My eye doctor is knowledgeable with thyroid eye troubles and has been great – even keeping my old lenses and switching them out frequently when my vision changes. I would ask if the opthamologist knows about it.

[Ski]

#1064758

Just making sure we’re all speaking the same language ~ when you say your levels are "low" and you are "hyPER," then that can be misleading.

When thyroid hormone is elevated, you are hyPER. T4/T3 are thyroid hormone. TSH (thyroid stimulating hormone) is secreted by the pituitary gland, and it is suppressed when you are hyPER.

When your thyroid hormone levels (T4/T3) are low, you are hyPO. TSH is elevated when you are hyPO.

As you can see, T4 and TSH operate like a seesaw (when they’re working right). If thyroid hormone is abnormally high, TSH *should* be abnormally low in response (and vice versa).

I know it seems like semantics, but newbies can get really really confused. Just trying to keep the conversation clear.

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