[Ski]

in reply to: New to the Graves’ Disease Foundation #1062434

Hi Renee,

It’s very normal for TED to affect one eye more than the other ~ I know it’s no fun and it seems so capricious (and uncomfortable, and disturbing, and all those things), and we can tell you that there’s light at the end of the tunnel, but (as with all things Graves’), it is something you must be patient about. Typically TED has a very rigid disease course, with certain defined phases (I can’t go into them right now, but do a search on "hot phase" or "cold phase" in this BB, either should give you at least one post that defines them both), but it can take 1-3 years to completely finish its phases and leave you in a position to consider whether surgical repairs are necessary to bring your eyes back to normal. The surgical techniques have been refined over the years, and you definitely can pursue anything necessary after the TED is "done." People who smoke cigarettes have the longest period of time before they’re "finished," and quitting at any point along the way will result in a more positive ending (proven through multiple studies), so if you do smoke cigarettes, please try to quit.

Graves’ Disease, TED, and prebitial myxedema (the burning shins) are three aspects of one "syndrome," they’re beginning to say, meaning that these are three diseases that happen concurrently to a lot of people. They happen along with each other (though not every GD patient gets the other two in a noticeable way), but treatment for one does nothing to predict the disease course for either of the other two. They flare up and calm down at their own whim.

Sorry to say that your doctors are absolutely right ~ there’s no way to tell what’s in the future for any of us, no matter what treatment we choose for our thyroids. The one thing they can say for a PRETTY certain fact is that your thyroid is gone and can no longer render you hyperthyroid, but that’s about it.

Oh, and after you’ve gone through TED once and reached the cold phase, they can say for a PRETTY certain fact that you’re done with it, as far as changes occurring.

Stick around, I know lots of people will have supportive words for you!

[Ski]

in reply to: So tired of this #1062437

We understand, believe me. The first thing you should know is that this is not a signal that you are receiving substandard care. This is the course of the treatment, it’s very typical.

RAI takes six weeks to do most of its work, but in addition to that, it takes up to six weeks just for your body to flush out the excess thyroid hormone that existed on the date of the RAI, so we don’t typically feel much relief until after that point, and even then, it tends to be gradual.

I understand you’re just beyond the six-week mark, but even so ~ depending on the dose you were given (which is part calculated science, part the art of experience by the radiologist), the RAI can take up to six months to do everything it’s capable of doing to your thyroid. Given those facts, most doctors will wait and see for at least that period of time before they consider another course of treatment. Keep in mind that doesn’t mean that until the 6-month mark you’ll be feeling the same ~ your thyroid hormone levels should continue to drop, and ultimately you should go hypo, if you were given the right dose of RAI (and these days they’re FAR more likely to hit the right dose than when I took it, 12 years ago).

If taking methimazole right now gets you through a brief period of hyperthyroidism before your thyroid ultimately gives up, then it’s not the same thing as committing to a 2-year period (as if you chose ATDs in the first place). It’s just keeping your thyroid hormone levels in the normal range to allow your body to heal from the hyperthyroidism.

I know it gets old, I realize it’s hard to feel crummy ~ I felt that way myself, as did many, many, many of us. As a matter of fact, I’m one of the few who DID need a second dose of RAI, so I wasn’t feeling TRULY well for at least 3 years after my initial diagnosis. In fact, though, I did continue to feel better and better during that time, so it wasn’t really "lost time," it was just not perfect.

Thyroid disease is tricky, treatment is a process, not a one-time event, and it’s important to know that. It’s hard not to feel impatient, but try and hang in there. You’re getting there, I promise!!

[Ski]

in reply to: Radioactive plumes headed for west coast #1062454

Remember that others are trying to avoid the risk of ending up with Graves’, and you’ve got Graves’ already. It’s not possible to get it "twice," so truthfully, I wouldn’t worry if I were you. Since you are so worried about it already, I would ask your endocrinologist or a radiologist to confirm your status. If there were some unusual level of risk for you (and all GD patients taking ATDs), the doctor would let you know, I’m sure. Everything I’ve seen is heavily invested in telling people that it is not necessary (and potentially harmful) to take potassium iodide in the absence of a SEVERE risk. If there were some population for whom that advice would be different, they would say so.

[Ski]

in reply to: it’s back…so I’m back…post-partum :( #1062459

As for the risks, whether you’ll be able to use methimazole (or PTU) effectively again, I believe the chance of it being effective for you is the same the second time around, but you should be aware that the most dangerous side effects (low white blood cell count, liver damage) are most likely to occur when you start (or re-start) taking the meds. One successful course of ATDs does not mean that the side effects will forever pass you by ~ apparently the risk is the same every time you go from NOT taking them, to taking them, and I believe the span of time in which they are most likely to come up is the first 6 weeks or so (could be a shorter period of time, I’ll check my notes tonight and post again). So don’t panic, but do take care and be vigilant about the symptoms of those side effects.

The odds of full remission, in other words, a remission of symptoms without taking meds that lasts for at least a year, do get lower for each successive course of ATDs, but as you know, if it’s possible to maintain your levels using a very low dose of ATD, you should be able to manage that (in the absence of the worst side effects) with your doctor’s help.

Sorry to hear your symptoms have returned, but congratulations on that beautiful baby girl!! Enjoy her, I certainly hope you are successful in finding a way to continue BFing, it’s so important for both of you. If it doesn’t work out, try not to blame yourself. I know you only want the best for your baby, and you’ll figure this out. ” title=”Very Happy” />

[Ski]

in reply to: Radioactive plumes headed for west coast #1062452

Potassium iodide is intended to prevent damage to the thyroid only ~ our thyroid is already damaged, or at least compromised, or at least not operating in the most healthy manner, so the question is largely moot for us. If we’ve had RAI or surgery and have no thyroid left, there could be NO impact on us whatsoever by taking potassium iodide.

I was living within 50 miles of the Three-Mile Island facility in May 1979 when it had its "episode," and when I was diagnosed with Graves’ Disease (in 1999), I asked my endo how this happened to me, and he said, I don’t know, did you live near Three-Mile Island? I’ve never heard anyone else willing to connect the two events, but it definitely stuck in my head. Bottom line, even with a large amount of radiation at the outset coming from Japan, we are thousands of miles away and we are millions of people, and the overall impact to each individual will be miniscule.

I saw a news report last night mentioning that potassium iodide can be harmful to a person if it is taken in the absence of a very high radiation exposure risk, so it is absolutely NOT recommended for the U.S. population at this time. If there were to be a local event, that’d be a different question. In any event, those of us without a thyroid have nothing to protect with the potassium iodide.

[Ski]

in reply to: RAI and Toddlers #1062484

There was one, small-population study done a long time ago that suggested RAI treatment may "temporarily worsen" (neither term well defined) TED symptoms for about 15% of patients. The study has never been successfully replicated in a large population, double-blind study, so it’s hard to say whether it proved anything, but we do typically mention it, especially in people who ARE having TED issues, since even slight worsening of symptoms for those folks could spell disaster. It showed that a concurrent course of oral steroids (prednisone) brought the risk of temporary worsening to zero, but of course oral steroids carry their own risks, so it’s a risk/benefit calculation that you would want to make with your doctor. Without ANY eye symptoms (other than dry eyes) it seems a pretty easy call.

One thing we can say for sure ~ RAI does not cause TED. TED is a separate condition that may or may not involve the very same antibodies (it’d be an aberration in the way antibodies behave, if they were exactly the same as the GD antibodies, but the science just isn’t in on it yet), but is definitely CLOSELY related to GD. Doctors say that at autopsy, ALL of us show some changes in the tissues of the eye, but only a small percentage of GD patients end up with the very worst of TED.

Bottom line? Know what the potential symptoms are and watch for them, and if you see any of them, get a referral to an ophthalmologist (NOT optician, NOT optometrist), preferably one that has treated TED before. TED can happen at any stage ~ we have one patient here who was DECADES past her successful thyroid treatment before TED symptoms came on. I don’t want to scare you, but it’s not fair to pat you on the head and tell you it’ll never happen either.

[Ski]

in reply to: RAI and Toddlers #1062482

The scan/uptake isotope doesn’t destroy anything, so it’s likely that reaction was something other than the dumping effect from the treatment dose, but definitely have a talk with the doctor about dumping if you’re worried about it. If you’re already taking beta blockers, they may authorize you an "extra dose" if you should feel a certain way, or have resting heart rate above a certain number, or they may ask you to call in and get confirmation that it’s okay to take an extra dose (or they may prescribe just a few, if you’re not already taking them, so you CAN take some if you feel awful). They don’t affect the thyroid hormone levels, but they reduce the symptoms and protect the heart while levels are high. It’s worth asking so you can put your worries to rest and know that you’re covered for every possibility. Oh, and that’d be the endo, not the radiologist that administers the RAI dose.

[Ski]

in reply to: RAI and Toddlers #1062480

I don’t know that I’ve ever heard an absolute "normal" dose that’s given to thyroid cancer patients, but my understanding is that it can be 10-20 TIMES what we get (200 millicuries or more, for instance), so the doses we are given are very very small in comparison.

The most typical restrictions we hear are these (though, as Kimberly mentions, they vary from doctor to doctor):

48-72 hours keep at least 6 feet away, no sharing utensils or dishes, no preparing food for others, use a separate bathroom, flush twice, drink lots of water. After the 72 hours are up, wash all of the clothes, towels and bedding you were using for those days, with an extra rinse at least (or wash them twice).

Several weeks (varies, depending on the dose) keeping time/distance in your mind when in contact with others. In other words, if you must have a 3-hour meeting with someone, keep your distance. If you want to get close to someone, make it for a short time. The need for distance diminishes as I mention below.

The restrictions for the earlier part (first 2-3 days) has to do with the fact that your body is flushing the RAI that is NOT taken up into they thyroid, and it does that through liquid waste channels (sweat, saliva, urine).

The restrictions later on have to do with the residual radiation remaining in your thyroid. RAI (the treatment isotope) has a half-life of 8 days, meaning that from your initial dose, every 8 days you will have half of the RAI left in your thyroid. Depending on the dose you’ve been given, you can do your own calculations to see how long it is until whatever’s left is truly miniscule and you can completely stop worrying about any restrictions.

Also ~ one more little note. Some patients experience a brief period (a couple of days) about 2 weeks after their RAI in which they feel "super-hyper." It is something we call the "dumping" effect, meaning that as your thyroid cells die, they "dump" the thyroid hormone they’ve been storing. It’s self-limiting, as the cells are dying and no more is being produced, but for some people it’s a nasty surprise just as they think they should be feeling better. Talk with your doctor and see what they think about the phenomenon and how they’d recommend you handle it, IF it happens to you. Never happened to me, for example, and I did have RAI.

Presuming you’ve already had your dose by now, I hope everything’s going well, let us know how you’re feeling!!

[Ski]

in reply to: What to make of my levels…. new to graves and prego! #1062540

Hi Sarah,

One quick point, if no one has mentioned it ~ typically, during pregnancy, our immune system "quiets down," in order to protect the new "foreign life" inside. That means your symptoms MAY remit during the pregnancy. After you deliver, symptoms can return with a vengeance, so be VERY vigilant about symptoms and blood tests, because that can be a real shock, especially when you’re caring for a newborn.

[Ski]

in reply to: New and feeling out of control #1062519

Hi Frankie,

We’re not qualified to evaluate your lab results, but I’m glad you’re getting some treatment for your hyperthyroidism! Not every hyperthyroid patient has Graves’ (though it’s true that MOST of them do), so there’s a chance that’s not what you’re dealing with. Still, right this minute, for you, that’s almost a matter of semantics ~ you want to feel better, and methimazole should help normalize your thyroid hormone levels.

Right now I can’t devote much time to answering, but I wanted to approve your post and make sure it appeared for others to respond. Let us know how you’re doing!

[Ski]

in reply to: RAI or not? #1062525

Bobbi and Shirley have done a great job getting you the info you need ~ I just wanted to pop in and reassure you that, as your levels normalize with ATDs, it’ll be MUCH easier for you to wrap your head around what’s going on, and to objectively evaluate the treatment options in order to decide for yourself which you prefer.

Doctors don’t always let their patients know there are CHOICES of treatment for Graves’ ~ not every disease is like this, but Graves’ is a "fortunate" diagnosis, at least in that we get to pick how to proceed, within reason (for example, a hemophiliac "couldn’t" choose surgery…). ATDs work for most people right away, and that’s why they are usually the first line of defense. Remission can be hard to come by, but then again, many patients are managed on very, very tiny doses of ATD eventually, which isn’t technically remission, but also carries far less potential for side effects going forward. If you are unsatisfied with ATDs, or uncomfortable with them, you can choose between either of the methods for removing your thyroid, and go on replacement hormone. Some doctors will say that it’s easier to manage thyroid hormone levels when you start from zero and add replacement hormone, but that’s based on a wide range of patients, and some patients do have a fairly easy time regulating on ATDs, so always remember YOU get to choose. The doctor has input that’s valuable for you to consider, but the ultimate decision belongs with you.

Once your levels normalize and you get your head back (it can take a while, I’m not sugar coating that!), you’ll have a better time figuring out what’s really right for you. In the meantime, I would resist any attempts by your doctor to "bully" you into RAI right away. If your levels are affected positively by the ATDs, there’s no need to rush into RAI.

Glad you found us!

[Ski]

in reply to: What to make of my levels…. new to graves and prego! #1062532

Hi Sarah,

We can’t interpret lab results, we’re just volunteers and fellow patients ~ if you have the lab values in front of you, then there should be a "normal range" reflected on the report, and you can see how far your levels fall outside the normal range. Even so, one thing we have found is that the numbers never tell the whole picture ~ some people can be wildly out of normal range, and still feel pretty well. Others can be out by just a couple of points, and feel totally miserable. In other words, the important thing to know is that your levels are imbalanced, and focus on getting them back into balance, rather than trying to figure out "how sick you are." Thyroid levels don’t equate exactly like that.

Stress is something that we have to manage carefully. We will never go through a day without stress. It has more to do with our REACTION to stress than the stress itself, so whatever you can do to calm yourself will be a good thing. Taking time off work can be helpful, but if it adds to your financial stress, you could just end up stressing out at home rather than at work, and with less income. The PTU should act relatively quickly to bring your levels down, so I would take a cautious approach at this point ~ let your employer know what’s going on, and tell them there may be some days when you need to either come in late, or leave early, or take a big break in the middle of the day, and see how well that works for you, for now. As your levels normalize, you should find yourself feeling much better, even if it’s not completely "normal." If you ultimately decide that a leave from work is necessary in order to fully protect yourself and your pregnancy, by all means, take advantage of that. It’s all YOUR choice.

As far as other things to manage your stress ~ hot baths, funny movies, knitting, painting, walking, yoga ~ whatever YOUR favorite thing is, whatever feeds your soul and makes you feel deeply content, THAT is what you should make time to do. A lot of times we find those are the things we "save" for a special day, but right now you need to understand that every day is a special day, and the things you do to soothe your soul today will feed you tomorrow as well, and help get you through this.

Try to be grateful you got this diagnosis when you did ~ you have a very good prognosis, and your pregnancy will be more successful having known this and managed it. I know it’s difficult to feel "good" about having Graves’, and maybe that’s not what I’m suggesting ~ feel good that you KNOW you have it, and that you are heading down the right road to health. Many patients go far too long without knowing, and that’s frustrating, debilitating, and dangerous.

We’ve got lots of people here who have gone through pregnancy and treatment at the same time, so hopefully some will chime in and ease some of your worries. In the meantime, I’m so glad you found us! Let us know how it’s going!

[Ski]

in reply to: Oh boy, here we go again.. #1062543

I’m sure it’s tough to face all of this again ~ the advantage to surgery is that afterwards, there’s no more "waiting game" for falling out of remission, it’s only about replacement hormone, so you don’t typically have the wild swings up and down after you find your best spot. You still need to be checked periodically because our needs can change over time, but there are few ways that you could become REALLY hyper again after your thyroid is removed. I don’t know if that helps much, but at this point it appears as though you’ve only got one choice (with the meds being so unpleasant for you), so I think looking for the bright side of surgery is likely to be your best position, emotionally. There are LOTS of people here who’ve made that choice for themselves, and I don’t recall one of them being sorry they did it. If you have the ability to research and choose a surgeon, you can dramatically reduce the likelihood of having any of the potential difficulties with the surgery, so that might make you even more comfortable. They’re not very common anyway, but any improvement in the odds is a good thing!

[Ski]

in reply to: Post RAI – tentatively optimistic #1062861

Welcome! I’m so glad you found us! You can definitely look forward to regaining your health ~ it does take time, but at least you are confident of a good outcome, that’s good to know. ” title=”Very Happy” /> Make use of the search engine, we’ve got a real treasure trove of information here, good factual information as well as anecdotal stuff and a mountain of emotional support, because we have ALL been there. ” title=”Wink” /> Please let us know how your journey is going along the way!

[Ski]

in reply to: Hypo post RAI #1062586

T3 levels are volatile ~ they change as your body converts (or doesn’t convert) T4 to T3, and it can be different depending on the time of day you are tested and what you’ve been doing. Chronically high or low levels can be helpful to know about, but it’s tough to manage your overall condition using T3 levels. FT4 is a good counterpart to TSH because it is more immediate than TSH, but not as capricious as FT3.

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