[Ski]

in reply to: Eye exam was nonthreatening #1072531

Orbital radiation can be effective during the "hot phase" of Thyroid Eye Disease, but has not been proven of any effect after the eye disease has run its course (once you’re in the "cold phase"). The doctors who spoke to us in October mentioned that some studies were done showing "no improvement," but the test subjects were all in the cold phase, so the results were of limited value. SOME patients do not show improvement from orbital radiation, even in the hot phase. Patients who had success controlling swelling with oral steroids in the hot phase were also likely to be successful with orbital radiation, so the idea is to use a little of each, limiting the risk of either. That’s only IF it’s necessary. Neither of these is necessary for most TED patients.

[Ski]

in reply to: Eye exam was nonthreatening #1072529

Absolutely ~ also not a good idea to mess with the skin now, in case you need it for other work later on. Wait until everything is resolved before looking into surgical corrections of any kind.

[Ski]

in reply to: Understanding PTU and Lag Time #1072512

When you’re attempting remission, you need at least a year (more likely two years) on PTU first. The medication will control your levels during those two years, then you stop taking it to see if your body can maintain the normal thyroid hormone levels without it. Dose is typically adjusted several times before arriving at a "maintenance" dose that keeps your levels just right. The dose starts very high, in order to get your levels down quickly, then drops as needed. The only way to tell where you are right now is with blood tests, so if you feel hypo, get labs done to confirm. It’s impossible for us to know, based on how we feel, where our blood levels are. We may THINK we know, and sometimes the tests may prove us out, but some symptoms are shared across either imbalance, so blood tests must be the bottom line.

TSH lags behind because it is a hormone excreted from the pituitary gland in response to a sort of "running average" of T4 levels in the bloodstream (think weeks). In addition to that, when we’ve been hyper, there can be a lag time before the pituitary "wakes up" and sends TSH out again. At this point, your T4 is a more valuable number. After you’ve been treated for a time and your levels have been largely stable, TSH is the gold standard of measurements.

[Ski]

in reply to: Rapidly enlarged thyroid / thyroid bleed? #1072503

Another new piece of information for me! A bleed is something I’ve not heard of before. Please let us know what you find out as this goes along.

What I DO know is that abnormal levels (hypo OR hyper) cause the thyroid to swell, so that could also be the root cause. Once levels normalize, the gland goes back to normal size.

[Ski]

in reply to: skin problems? #1073201

Pretibial myxedema is the skin condition you’re thinking of ~ it’s usually located on the shins, but can affect the tops of the feet and sometimes causes some edema in the feet and ankles. Doesn’t travel elsewhere.

[Ski]

in reply to: Bilateral Orbital Decompression #1072521

Just so you know, it’s easy to post your own site in order to share pictures and experiences (MySpace or FaceBook are two easy routes to take) ~ or you can post video on YouTube (you can post a new one each time, and they are connected through your user name). You can reference the link or username in your profile here, or even include the URL in your signature, if you’d like people to be able to find it easily.

I don’t know of any one clearinghouse for TED pictures & info.

[Ski]

in reply to: ski-sorry I’m not in the loop #1072516

No apologies necessary Robin ~ Graves’ is complicated, and it’s not easy to stay on top of it (just one reason we’re here). ” title=”Very Happy” />

[Ski]

in reply to: Graves after 23 years? #1072570

Eight months ago is too recent to test again!?!?? That’s horrifying. If you agree to pay for the test, will she promise to reimburse you if you’re RIGHT? I’m sending you a personal message with a resource that may be helpful.

[Ski]

in reply to: Itchy skin #1072546

I just took a look at a generic list of hyperthyroid symptoms, and there was an offhand comment to "skin that may be hot, red, and sometimes itchy," so that may be where this originates. It’s hard to know, since not all people get the same symptoms from being hyperthyroid. Leave it to us to be each unique, one to another, even as to symptoms. ” title=”Very Happy” /> Let us know if it gets better as your thyroid hormone levels improve.

[Ski]

in reply to: Desperately need advice #1072707

PTU can cause the same effect.

[Ski]

in reply to: Itchy skin #1072541

I can’t really help with the itchy skin, my apologies. Is the itch located in a specific part of your body?

As for diet soda, I have heard that connection suggested before ~ and, as a matter of fact, for nearly 5 years before my Graves’ diagnosis, I steadily drank more and more diet soda until it was nearly the only fluid I ingested. Once I was diagnosed and heard the "rumor," I quit. Of course, the horse was out of the barn by then, there’s no "un-getting" Graves’, and I can’t prove anything regarding diet soda anyway. I also had genetic connections to Graves’ and several other environmental triggers that could easily have produced Graves’ without any complications from the soda. Now that I’ve quit, I can’t even stomach it any more, it just seems like a giant glass of chemicals. And, ironically, the substances inside it actually cause cravings for sweets and other empty carbs, so the fact that it has one calorie helps NOT AT ALL.

[Ski]

in reply to: Graves after 23 years? #1072568

It’s possible your dose of synthroid needs adjusting ~ our needs for thyroid hormone can change over the years due to hormonal events (menopause, for instance), weight gain or loss, changes in our level of physical activity, and several other factors, so you may want to get those levels checked and then start a symptom diary to see if you can determine which side of YOUR normal you may be falling upon (if, indeed, this has its root in your thyroid hormone levels ~ not necessarily so, but worth investigating). Several symptoms occur on BOTH sides of normal (hypo and hyper, for instance, can create anxiety and fatigue), so it’s good to have a constellation of symptoms in order to get a full picture. Doctors LOVE DATA. ” title=”Very Happy” />

[Ski]

in reply to: Having Surgery in two weeks, and am nervous!! #1073427

Robin, it sounds like you might be talking about your instructions following RAI? These guys are talking about recovery following surgery.

(kgoff ~ SO glad to hear you’re feeling better, and thanks for the answer about the bruising!) ” title=”Very Happy” />

[Ski]

in reply to: Graves after 23 years? #1072566

Good answer, mamabear!

If anyone needs clarification on specific points, let me know and I’ll fill in the blanks.

As far as contact lenses go, I still wear mine. I never had very bad bulging (and my eyes have nearly completely reverted to normal in the 10 years since my initial Graves’ diagnosis), so call me lucky, but it’s not a given that Graves’ patients can no longer wear contacts.

Oh and one more thing ~ the conventional wisdom NOW is that we DO attempt complete destruction of the thyroid with RAI. Less than that can leave a patient in a very difficult position as they attempt to maintain stable levels. Some people have required a second dose of RAI (I was one), but that was because I my dose was too little the first time, NOT because tissue regrew. It is almost unheard of for tissue to grow back following RAI. That’s one of the reasons RAI is used in thyroid cancer patients.

[Ski]

in reply to: I’m a new member-with a new problem #1072573

Hi Sharie,

Welcome ~ and thanks for some new information! I had not heard of this before! We may hear from others who’ve experienced it, but I can say pretty reliably that I’ve never seen a similar post.

Pharmacists are extremely knowledgeable individuals as to medication reactions, so it seems you’ve already heard from an authority, and good news that it’s not affecting your healthy teeth and gums ~ I’ll leave it to others to let you know if they’ve had it happen to them.

Did she tell you whether it’s likely to continue?

[Author]

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