[Ski]

in reply to: Do you/did you tell employers about your GD? #1072291

Oh boy, I understand ~ that’s the real fear, isn’t it? That people will treat us differently even on days when we are well ~ and that they will blame any issues on our disease first. I’m so sorry it’s happened this way for you. I’m not sure people even understand how completely ignorant that sounds, from our perspective. The likelihood is that they THINK they’re acting in a supportive way, but it comes off as completely marginalizing and dismissing us.

I wish I had a good way to resolve it for you, but I really appreciate you sharing your experience.

[Ski]

in reply to: High T3 Levels #1072199

T3 is converted in the body from T4 in the bloodstream, and T3 is the active hormone that is actually used functionally in the body. Sounds like the doctor has a good handle on what’s going on, and that’s a good thing! ” title=”Very Happy” />

T3 typically fluctuates pretty rapidly (think hours), but it makes sense for the doctor to take this step to make sure you’re safe.

[Ski]

in reply to: Is it "just" GD…. #1072208

Hi Emily,

It’s very common, what you’re going through ~ for many of us, this is the first "serious" condition we’ve dealt with, and it’s sufficiently complicated so as to completely possess our brainpower for a time. It’s encouraging that your symptoms are better each day now, that’s a really good sign. At this precise point, you can PROBABLY point to most of the "weirdness" going on with you and say it is in some way related to either Graves’ hyperthyroidism OR recovery from that same thing due to the meds. And yet, I can’t say that for a certain fact, because I’m not your doctor, and I don’t know what else might be complicating things. All I can say for sure is that, if the symptom is small and transient, you probably don’t need to speak with your doctor about it yet.

Does that help at all? ” title=”Wink” />

[Ski]

in reply to: What are the signs & phases of Thyroid Eye Disease? #1072223

Sorry, I can’t help with that part, but I can tell you that you ought to be looking for an ophthalmologist instead. Opticians deal with eyeglass prescriptions and such, but ophthalmologists are the right eye doctor to deal with TED. Even without symptoms, it’s good to begin a relationship so that if symptoms DO begin, you have at least begun the process and have someone you trust to consult. In addition to that, it’s helpful to have a doctor who knows, firsthand, the "before" face, so they have a full realization of the effects TED has had. Without that, the doctor may think you have mild symptoms, when that may not be so.

One more thing ~ when doctors have conducted autopsies of Graves’ patients, they have found SOME evidence of TED in all of them. Only a small percentage end up with the very worst of the problems, so keep that in mind.

Also ~ one study did show a possibility of "temporary worsening" of TED symptoms following RAI (neither term being well defined). It occurred in about 16% of those patients. The temporary worsening was completely eliminated when the patient had a concurrent, short course of steroids surrounding the RAI (a couple of weeks before/after). For that reason, if you pursue RAI, it’s good to have a discussion with your endo and also an ophthalmologist to determine whether your TED symptoms outweigh the risks of taking steroids. [By the way, this specific study has not been effectively reproduced since, but the information is interesting, at least.]

[Ski]

in reply to: Hanging in there #1072213

Hi Kathy,

It’s good to know you’re hanging in ~ the 22nd is a long way off, so I hope you’re finding some way to feel comfortable in the meantime. Every little bit of relief is worth it.

[Ski]

in reply to: What are the signs & phases of Thyroid Eye Disease? #1072218

Hi Catsmum,

The signs of TED, at first, are usually difficulty/pain moving the eye, and a feeling of pressure behind the eye, which typically is worse on one side (left eye vs. right eye). Sometimes there is double vision from the movement of the muscles being restricted in one eye due to the pressure. That’s why the doctor had her follow an object ~ if both eyes are tracking together, effectively, that’s a good sign.

Autoimmune disease in general can produce the grittiness, sensitivity to light, and dryness. Believe it or not, excessive tears are actually a sign that our eyes are too DRY. Our tears, as Graves’ patients, become less thick and more watery, so the tears we DO produce don’t effectively moisten the eye, and then the eye sends more tears out to try and fix that, which are (again) too watery, so on and on it goes. If she uses artificial tears (NOT get-the-red-out drops) without preservatives, and uses them often, some of the discomfort should go away. As Jake mentions often, the drops we take today are actually helping us to feel better tomorrow, so using them even when our eyes feel fairly well will help continue that good feeling. When she’s in a situation that particularly stresses the eyes (on the computer, or in a windy place), using them every 15-30 minutes is not too often. That’s why you need non-preservative drops. At that pace, the preservatives alone can be an irritant.

When a patient is dealing with TED, the hot phase/cold phase works like this: at first, the eyes go through changes rapidly, bulging and "un-bulging," if you will, seemingly without any particular pattern. That is the full-on HOT phase. Following this, there is a period of time where things are stable ~ the eyes may remain bulging out, but they won’t be going back & forth rapidly (rapidly being a relative term, of course ~ it’s not as if you could watch them go in and out). There may be SOME changes during this period, but not much. Following this, there is a brief period where improvement occurs, JUST improvement. After that is over, the cold phase begins. The cold phase typically must be diagnosed in retrospect ~ in other words, the doctor looks back and says that six months have passed with no dramatic changes, so you are in the cold phase. The differentiation is important because you don’t want to pursue any surgical correction to the changes until the cold phase. If you do pursue surgery while the eyes are still having some changes, you can trigger another kind of "hot phase," which can undo the benefits of the surgery. Once the patient is in the cold phase, surgery can be pursued without worrying about that. This whole cycle typically takes between one year and three years. People who smoke will be more likely to experience the longer period of time.

Does that help? Let me know if you have more questions.

[Ski]

in reply to: RAI #1072234

While I agree that you need to be comfortable with your decision, I cannot let a post go unanswered that claims "the potential side-effects from RAI are far worse than Graves." That is simply not true. No risk from any of the three potential treatments available to us is anywhere NEAR as dangerous as hyperthyroidism.

RAI returned me to health. It was my personal choice. No doctor forced me into it. I did all my research, found out what I needed to know FOR ME, and made my decision. All three treatment choices are perfectly valid, and all have their challenges, risks and benefits.

When you are doing your research about the treatments available to you, please make sure you are looking at valid, peer-reviewed research. There are plenty of sites that would like you to believe there are extreme dangers to RAI, but 60+ years of using the treatment simply have not borne out those fears ~ not to the patient, not even to children of the patient.

I AGREE that you need to feel comfortable with your choice, and if you have a visceral reaction to the idea of RAI, I think you should do more research. Your doctor has no right to tell you what to do. They can suggest, they can recommend, but they cannot FORCE you to have RAI as your treatment.

I just want to point out quickly that it is true, you need to stop taking ATDs for a period of time prior to taking RAI, if that’s what you’re going to pursue, because ATDs will block the RAI from getting in and doing its work. The symptoms you feel when you go off the ATD are due to the fact that you are returning to a hyperthyroid state while you are not managed with the ATD.

Oh also ~ once you have removed the thyroid (either through RAI or surgery), you will NOT have ups & downs after you have dialed-in your replacement hormone dose and achieved normal, stable thyroid hormone levels. Once you have removed the gland, the antibodies can no longer make your thyroid overproduce.

After you achieve normal levels (and find YOUR point), we recommend that you have your levels tested once a year. In all likelihood, you won’t need many adjustments over your lifetime, but some life events do lead to a change in our need for thyroid hormone (pregnancy, menopause, aging, losing/gaining weight, change in overall activity level). The biggest challenge comes just at the start, and you start out CLOSE to normal, then drill down to YOUR normal. It can take some time, but if you’ve got 50 years of life left to live (or more), what’s six months (feeling better all the time) in order to feel just right? No matter WHAT your choice, you’ll be "dialing in" your hormone levels to some degree, taking a little bit of time along the way.

I’m all for empowerment. I don’t think it’s fair to bash ANY of the potential treatments we have available to us.

[Ski]

in reply to: Almost 7 weeks post RAI #1072270

Amy’s son has had trouble with nausea throughout (since long before the RAI) ~ it’s been very frustrating for them.

Thanks for checking in, Amy ~ I’m hoping for more improvement in that area for your son! I’m glad things seem to be on the upswing.

[Ski]

in reply to: TSH Reflex #1072280

I haven’t heard of this one before ~ I just did a quick Yahoo search and found some bare bones details, you may want to do the same. Looks like it is a test to help determine the cause of your hyperthyroidism or, if you aren’t testing hyperthyroid right now, it may help figure out whether you’re GOING hyper.

[Ski]

in reply to: POLL: what positive things have come about in your life… #1072379

While I know the U.S. healthcare system is VERY sick, I just have to make one comment here ~ RAI is actually the least costly treatment for Graves’. ATDs require frequent office visits and lab tests for at least two years, then again after the patient stops taking the meds. Surgery, of course, involves many other professionals (anesthesiologists, surgical attendants), a hospital room, and follow up care. Both are more expensive than RAI.

Still, if you don’t want RAI, there’s no need for any other argument than you’d rather not. No doctor can force you into it.

[Ski]

in reply to: Do you/did you tell employers about your GD? #1072283

As your post clearly points out, the answer may be very different depending on where you work, who you work with, and where you are in your treatment.

In my experience, people have been a little curious about Graves’, and didn’t presume I would be unable to handle things ~ as long as I could handle things. I haven’t really had a period of time where I couldn’t handle things, so that’s perhaps unfair for me to say. I also work in the legal field, so I know the precision required in the business. As long as I wrote myself notes, I kept on top of everything, even while I had issues with my memory.

It is illegal for an employer to make hiring/retention decisions based on illness, but saying it is one thing, and seeing it in practice is quite another. Employers who are motivated to do so may easily have illness at the core of the decision, but they know they can point to something else just as easily, and do what they want. Ethics don’t always play into the choices employers make, in other words.

So this is something that you may want to navigate cautiously at first. Since you’ve already been diagnosed, and you have a handle on your treatment, you may be able to make decisions that impact your work life less ~ for instance, you can have blood drawn at a lab that’s open earlier or later than your work hours. You can speak with your doctor about having consultations over the phone, or ask them to provide an e-mail address to ask the doctor simple questions and get prescriptions adjusted. These small accommodations can minimize the time you need to spend away from the office.

The big "issues" with Graves’ occur when we’re hyperthyroid, not generally once our levels are managed well, so the likelihood is that none of those things will come up in "real time," requiring explanation. Still, each can be explained with an offhand comment referring to something else (hot? must be a flash ~ wait, I’m too young ha ha ha… tremors? oh I really need to eat ha ha ha… emotional? don’t even say it!). ” title=”Very Happy” />

In other words, you can introduce the topic slowly, as it becomes necessary to explain, rather than hitting them all at once. If, as you say, it has no impact on the performance of your job, it should be a complete non-issue.

I’m not exactly sure how it works into the insurance premiums, so I can’t really help with that part of the question. It’ll definitely come up as you pursue treatment under their insurance plan (once you qualify), but chances are that it won’t make THAT big a difference. Maintenance is inexpensive, the disease is not life-threatening as long as it’s treated, and you will bear most of the cost of medication personally, so it shouldn’t have a big impact.

[Ski]

in reply to: Thyriod Eye Disorder -stages #1072295

The initial "hot phase" is characterized by frequent changes ~ more swelling, less swelling, back & forth like that. Once the frequent changes stop, and the "swings" in swelling get smaller, then there is a period where pretty much nothing happens. After that period, there’s a time when it’s only improving, but things don’t happen rapidly. Finally, once there have been NO changes for about six months, the doctor will probably diagnose "cold phase." That must be diagnosed in retrospect ~ you can’t really tell from day one that it’s the cold phase, because of the other phases where things may happen "occasionally."

[Ski]

in reply to: Endo asked about Charlie Horses?? #1072301

That’d be my guess too ~ muscle cramps are a hypo symptom. Wouldn’t seem an appropriate time to ask you about them though….

[Ski]

in reply to: Weight Gain after RAI?? #1072318

Our eating habits probably contribute the most, but being hypo definitely doesn’t help, which is why we urge vigilance to your levels. The sooner you start replacement hormone, the less time your body spends being hypo, and that minimizes the effects on your body. [Remember too ~ gaining back that muscle mass is critical, it is NOT bad news.]

Mickey ~ my guess is that your fogginess and other symptoms shortly after beginning to take Synthroid have more to do with the hypothyroidism you are taking the Synthroid to correct. It actually takes at least a week for the replacement hormone to build up enough in our bloodstream to really help.

One last comment ~ once you are on replacement thyroid hormone, and your levels fall in the normal range, you don’t have to consider yourself "hypo." You would be hypo, if you had no replacement hormone.

I would caution you to make sure you’re getting all of your nutrition while using that low-carb diet. In recent months, people have adjusted it to allow more fresh fruits and vegetables into the mix, since those are the GOOD carbs.

[Ski]

in reply to: Dying to know Ski…. #1072312

How sweet of you to ask!!!! ” title=”Very Happy” />

It was AMAZING, as Bruce’s concerts always are ~ those guys don’t stop for an instant, it’s one big revival! If you have never seen Bruce Springsteen in concert, let me just say you are MISSING OUT. They played for more than three hours, NO BREAKS, no warm-up band, and you get the feeling they could’ve gone on until morning with no problem. They love what they’re doing, and we love to watch.

My husband is definitely picky when it comes to concerts, and he came out of this one completely speechless. He said it was absolutely the best show he’s ever seen. My hearing’s beginning to come back now.

THIS is one of those things I do for myself, that gives me real peace. ” title=”Cool” />

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