[Ski]

#1075296

Hi Carla,

It’s a good question ~ you’d think the answer would be simple but (like everything else with Graves’) not so! ” title=”Very Happy” />

Turns out that the most recent wisdom indicates that Graves’ isn’t so much a "disease" as it is a "syndrome," consisting of several components. The ones we know and somewhat understand are the thyroid disease, the eye disease, and the skin condition (pretibial myxedema, they call it). There are different antibodies, from what they can tell, but the constellation of conditions seem to be fairly well connected in all of us. Some people have very little eye disease, but when examined closely, everyone shows some changes. The skin condition is much less common (it’s an itchy rash that typically appears on your shins, but sometimes manifests as swollen ankles). Once the thyroid is treated, the serious threat to our health is over, but either of the other conditions could appear, over time. Unfortunately, while most cases of eye disease appear within the first couple of years of the onset of thyroid disease, there are cases where many years separate the two. So those particular things we can look out for. Of course, the question that raises in one’s mind is ~ what else is there to this syndrome that has not yet been fully documented? "Mental fog" is mentioned quite a bit, by all of us.

Still, the fact that you had your thyroid removed doesn’t automatically mean that your thyroid hormone levels are "perfect" for you right now. Our bodies need varying levels of replacement hormone in order to feel right, and if we had the body’s natural feedback response to adjust those amounts, we would never know. The fact is that many things affect our need for thyroid hormone replacement ~ age, activity level, weight, hormonal state — referring to things like menopause — and perhaps other conditions we may be dealing with. So there are two elements to this. First, you should still be having your levels tested regularly ~ sounds like you’ve been doing that recently in investigation, so that’s good. Second, if no one has tried to help you find "your" normal, you may want to explore small changes in thyroid hormone replacement in order to see whether that helps your symptoms. Talk to your doctor about that. They have your history, which will help answer your questions.

I hope that helps ~ let me know if I left anything out.

[carlydm08]

#1019961

Hi,

I know this is a stupid question that I probably should know but I don’t. I had most of my thyroid removed 2 years ago. I’ve been having health issues and I’m wondering if it could be Graves related. Since my thyroid has been removed could I still have symptoms of Graves even though my body isn’t attacking my thyroid anymore? Do I still have it? I assume that I do but I’m not sure. Sometimes mentally I totally feel like I am hyperthyroid and I’ve been having medically unexplained physical symptoms that have been investigated for over a year. Please enlighten me. Thanks for your patience. As it’s been 5 years I think I should know this, but I don’t. And it’s true, us old-timers to Graves don’t seem to post when we are feeling good. It’s been a while.

Carla

[Eileen3]

#1075297

Hello,
My name is Eileen. I was diagnosed with Graves Disease when I was 18. I am now 26. I was looking online and stumbled upon this site. I had the radioiodine treatment which in turn killed off too much thyroid. Now the classify me as hypo. Does this mean I still have the graves? I still have one pretty large eye. I say eye because my right eye has gone back to normal. My left eye never seemes to look normal . That leaves me with self esteem issues. Can anyone help?

[Eileen3]

#1075298

Eileen3 wrote:Hello,
My name is Eileen. I was diagnosed with Graves Disease when I was 18. I am now 26. I was looking online and stumbled upon this site. I had the radioiodine treatment which in turn killed off too much thyroid. Now the classify me as hypo. Does this mean I still have the graves? I still have one pretty large eye. I say eye because my right eye has gone back to normal. My left eye never seemes to look normal . That leaves me with self esteem issues. Can anyone help?

[Ski]

#1075299

Hi Eileen,

First, the thyroid disease and the eye disease are separate, with separate courses of disease and completely different treatments. Treating the thyroid does nothing for the eye symptoms. Doctors are beginning to speak of Graves’ as a "syndrome" rather than a "disease," so we have multiple issues to concern ourselves with. You’ve had your thyroid treated, so that part is mostly "done" except for monitoring and re-adjusting occasionally to allow for various things that bring on a need for different levels of thyroid hormone (age, weight, activity level, other hormonal "thresholds" like menopause).

Now, an RAI is supposed to kill your thyroid completely, so it renders you hypothyroid. HOWEVER, once you are taking thyroid hormone replacement and your blood levels of thyroid hormone and TSH are normal, you are no longer hypothyroid. You would be, if you stopped taking your thyroid hormone replacement, but as long as you are taking it and your levels are normal, you are NOT actively hypothyroid.

Are you under the care of an opthalmologist for your eye symptoms? That’s the right doctor for the job. It’s typical for Graves’ patients to have eyes that are very different (one sticks out more than the other, for example). If your eyes are actively changing right now (bulging more or less, giving you double vision, etc.), then usually a doctor will just wait and see, unless your vision is threatened (which is very rare). Still, it’s best to be under the care of a physician so you can more clearly define your transition into the "cold phase" when changes stop, because that is the time that you can start to talk about surgical solutions to the bulging.

I completely understand about the self esteem issues ~ some patients choose to use lightly tinted sunglasses all the time, which helps them "hide" their eyes a little. Anything you can do to help yourself feel better will help. I have heard that raising the head of your bed can help a little bit ~ I had a bit of "fat displacement" around my eyes because of Graves’, and sleeping with the head of the bed raised did help me. We put pieces of 4x4s under the bedframe. It’s better than using a stack of pillows because it keeps your head elevated no matter what (you can "come down" off the pillows while you’re sleeping) ~ plus with pillows you have a stress point at your hips that makes you uncomfortable over time.

In any event ~ there are things the opthalmologist can discuss with you for keeping the inflammation down as much as possible. The doctor could also give you some idea of the severity of your condition.

[lyn]

#1075300

I have read a tiny bit on pretibial myxedema. And now I’m wondering if this is something I may have.
I have been on methimazole for a few months now. I have had swollen ankles/lower legs/feet since this summer, prior to starting the meds. The swelling has gone down quite a bit but is still present. My endocrinologist has examined me and said it is not related to hyperthyroidism/graves. My primary care doctor has also examined me and did bloodwork (checking for kidney functions).Results came back normal, he concluded there is no need to worry about the leg/ankle swelling. (The eye swelling I noted on a separte board started more recently and my endocrinologist said this is because of the graves.)
At 39 years old, it just doesn’t seem to me that swollen ankles is normal and I believe there must be something causing this. I feel like a hypocondriac to keep addressing my swelling concerns. Yet I’m striking out at the doctor’s. I’m wondering if my endocrinologist may be incorrect and that it could be pretibial myxedema. Any thoughts?

[npatterson]

#1075301

Dear Lyn,
Pretibial Myxedema is relatively hard to miss, if it is fully developed. It is caused by the same antibody that attacks the eye tissues, which might explain some eye problems. As Ski said, it is separate from the thyroid portion of our Graves’, and can occur whether your treatment was ATD’s, RAI or surgery.
Usually it itches (alot!), is reddened, and feels somewhat like the skin of an orange. Go pick up a hefty naval orange, close your eyes, and run your fingers over the surface. "Swelling" (as in edema) may or may not be present. Two things that might help identify it are an antibody test, or a round of one of the steriods (obviouusly prescribed by your doctor).
There is not a lot written about it, and what usually is written is found in dermatology journals with a great deal of histological information.
My guess is that if you start a new thread on this forum with a title like "anyone have Pretibial Myxedema?" you will hear from those of us who have had it. It makes my legs itch just to type about it. Good luck!

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