Forum Replies Created
-
AuthorPosts
-
in reply to: confusing? recently diagnosed..anyone?? #1071390
My doctor never told me to stay away from shellfish, but I know some doctors do ask patients to limit iodine intake. For the most part, the iodine level in foods is not particularly high (except kelp/seaweed, which is specifically mentioned as something we should avoid), but if you routinely eat a LOT of shellfish, that may be one reason the doctor mentioned restricting it. Iodine goes to the thyroid and is made into thyroid hormone, so limiting the supply of iodine may keep the thyroid from producing as much hormone. When your disease is most active and you’ve just been diagnosed, every little bit helps.
in reply to: And so it begins… #1071557Even on meds, stress can have an effect on your levels. Less of an impact than if you are untreated, but it’s something to consider as you go through your day. Anything you can do for yourself to lessen the overall impact of the stress in your life is a good thing. A walk, a hot bath, a funny movie ~ whatever it is that helps you, that’s what you should do. Remember also that it’s impossible to remove stress completely. It’s partly about how we deal with it, not necessarily that it exists, so if you can find a way to "Zen out," as I think of it, that can help you feel better as well.
I’m not sure how critical it is to take Tapazole at exactly the same time each day ~ PTU has more of an issue with timing, since it is taken three times a day ~ but your med instructions should have some comment on that for you. I believe you can take it when you remember, as long as it isn’t right before your NEXT dose, but that’s something to discuss with either your pharmacist or doctor. If it becomes a chronic problem to take it at the same time each day, you may end up with difficulty managing your levels, so it is a good idea to figure out some way to remember it. Set a timer on your cell phone, or always take it when you wake up, or take it always at lunchtime ~ whatever works best to help you remember.
in reply to: RAI and Eye Surgeries…Decision Time #1071198Hi Sandy,
The first thing I want to clarify is that Graves’ thyroid disease and Thyroid Eye Disease (TED) are actually two separate diseases. Treating the thyroid does nothing for TED. The information right now indicates that we probably have several kinds of antibodies that come along with Graves’ thyroid disease, and the antibodies that lead to TED are included in that group, but they act independently of your thyroid disease status. Stimulating our immune system through stress or other means will make all antibodies more active, so it may appear as though the diseases are on the same "wavelength," but they are treated separately and have completely different life cycles.
So, treating your thyroid is one thing you are wrestling with. You say you are on ATDs and they are working, but you have fluctuations that require adjustments in your ATD dose, so your doctor has begun to suggest a more permanent solution for you. It IS possible to stay on ATDs long term, even if remission is not achieved, so that is definitely one choice you have. There are some long term effects to consider, most prominently the effect on your liver, but with proper monitoring you should be able to determine whether the risk is acceptable for you. In other words, if your liver function is fine now, then monitoring it as you take the ATDs will help you find out when and if function begins to decline, which would be a signal that you should seriously consider some other form of treatment. There is some evidence that continuing treatment with ATDs helps to reduce antibody levels overall, so it’s possible that you could see some improvement in your TED symptoms with ATDs if your TED is still active.
Treating your eyes is another question. TED has a pretty well-defined disease curve ~ typically there is a period of activity when your proptosis and other symptoms fluctuate often, after which there is a period of relative stability, followed by a period of slight improvement, and finally a completely stable point. The final, stable point is not necessarily back to normal, but it signals the end of the antibody attack. That is what we refer to as the "cold phase" of TED, and this is when it’s safe to look at surgical solutions for the scar tissue that remains. The entire disease curve can last anywhere from one to three years. If you have not yet hit the "cold phase," then surgery would not typically be recommended. It can launch another antibody attack, which can reverse the benefits of the surgery and leave you with fewer options once you DO reach the cold phase. The decision to pursue surgery should be discussed with an ophthalmologist (preferably one who is also trained as a surgeon in specifically these procedures) so that you are sure you get the results you want. I never needed eye surgery, but I know lots of people who have had it, and despite the fact that it sounds scary to put "eye" and "surgery" in the same sentence, they’ve recovered well. The newest techniques are less and less invasive and get better results. You should know that there is a definite "order" to these things. If you will need all of the surgeries, it is best to do decompression first, strabismus (eye muscle) second [this solves the finer details of double vision], and eyelids last. This keeps you from overcorrecting or removing tissue you may need later.
If you are looking at the possibility of RAI or surgery for your thyroid, you should know that RAI has resulted in "temporary worsening" of TED symptoms for some patients. In the one study we have, 16% of the patients who had RAI exhibited this "temporary worsening," though neither term (temporary or worsening) was well defined. Zero percent of the patients who had RAI along with Prednisone suffered this period of temporary worsening, but of course Prednisone carries its own risks. In the event that you are considering RAI, this should be something you discuss with your opthalmologist as well, to determine your personal risk for difficulty following RAI. If you have already gone through the hot phase of TED and are now in the cold phase, I believe the risk of worsening afterwards would be less likely, but the doctor will know more about that and help guide you.
To avoid all of that discussion, thyroid surgery would be another option for treating your thyroid.
I realize that you really would like some kind of conclusion here, and I’m sorry we can’t give it to you. Each process carries risks and benefits, and you need to weigh them for yourself to decide where your comfort zone is. Write down a list of all your questions, and take them to both your endocrinologist and your ophthalmologist. Remember that they are allowed to have their opinions and share them with you, but they are NOT allowed to dictate your choice as to what’s next. That is up to you, it’s your body, your disease, your consequences, and so ultimately your choice in the absence of any other medical condition that precludes one treatment or another.
in reply to: anti-inflammatory diet? #1071206I don’t have any experience with an anti-inflammatory diet, but I wanted to jump in and remind everyone that our immune system is not "compromised" as you might think. As a matter of fact, our immune system is working overtime, creating antibodies that work against our own tissue. "Boosting" immune performance can actually end up making us feel worse, because it will stimulate the antibodies that make us feel badly, along with the rest of our immune system. It’s a fine line, so walk that carefully.
in reply to: 9am Tuesday… #1071212We’ll be thinking about you, Krystal! I hope you just enjoy the downtime, and feel better SOON!
” title=”Very Happy” />in reply to: Son just diagnosed #1072925It’s tough to keep stable weight with the metabolism issues we experience ~ once his levels come into the normal range (and stay there) he should have more luck keeping his weight down. For now, he should just concentrate on controlling portions and eating smart ~ low fat, high fiber, fresh foods. When we’re hyper, we can literally eat anything and it doesn’t affect us, so sometimes it’s tough to go back to our old habits. We can also gain because hyperthyroidism "eats" muscle mass, and when our levels begin to normalize, that muscle mass returns, but as soft, baby muscle. He’ll need some work to re-strengthen that muscle mass, but eventually his weight issues should return to what they were before. It will definitely take time. Not a month or two, but more than that.
in reply to: What’s next #1071804We can’t evaluate your numbers (that’s for the doctor to do), but that spreadsheet is a GREAT idea. You should keep the reference range of normal from the lab somewhere on the spreadsheet so you can compare your levels against it. All labs have different processes and their normal ranges can be different, so it’s important to check. Hopefully all your tests will be at the same lab, which makes it FAR easier to get a handle on what’s going on.
Actually, it’s not quite that hopeful ~ if they find a way to interrupt the disease process, they must first find the magical moment between "I don’t have it" and "I do have it." Once we HAVE the disease, the antibodies have formed, the water’s broken through the dam and there’s no putting it back.
We are VERY far from that day, from what I understand. All very theoretical, though the mechanisms and sequence of events are helpful to know. In the meantime, we have to do the best we can with what we do know now.
At least we’re ahead of the doctors in history who thought our thyroid was a big bag of worms!! Crikey.
in reply to: uptake reaction…PEASE READ…. #1071273The RAI treatment dose is actually a completely different isotope than the scan/uptake RAI ~ it’s not just a tiny bit compared to a lot ~ so it’s not a given that IF you reacted to the scan dose (it easily could’ve been something else), you would react to the treatment dose. Do let us know what the tech tells you, if anything. Hopefully there’ll be a doc nearby that can answer, if the tech can’t.
in reply to: The Next Step #1071279Hi Aurelian,
If you’ve had thyroid blood tests run prior to this, when you know you were healthy, it may be helpful to know what your TSH level was at that time. A significant change (from top of the normal range to the bottom of the range, for instance) would probably bring some interest from the doctor. Unfortunately, not everyone has those types of historical results. Did you receive a copy of your most recent test? If so, you can at least know for yourself whether the TSH falls in the very bottom of the normal range, which could indicate high-ish thyroid hormone levels, since TSH has an inverse relationship to T4 (thyroid hormone).
One quick solution would be to ask the doctor to test your full thyroid panel, not just TSH. TSH is pretty good as a test result, and for most people it is truly the golden level to test. It is the thyroid stimulating hormone that comes from the pituitary, and it is released in proportion to the levels of thyroid hormone the pituitary senses in the bloodstream over a few weeks’ time. If your thyroid hormone levels are fluctuating rapidly, or have just begun to travel in a certain direction, the TSH may not have "caught up" quite yet, so it’s possible the T4 result could provide some perspective.
I would concur that a scan/uptake result would be helpful, but the first thing it sounds like you must do is convince your doctor that it’s not only a possibility, but a probability, that Graves’ is what they’ll find. An uptake/scan is not something they’re likely to order "just because." There is a blood test for Graves’ antibodies, which may also be helpful. The complication with that blood test is that you can have a negative result (no antibodies) even though you truly have Graves’, because the antibodies wax and wane for various reasons (no one has a handle on those, exactly). If you get a POSITIVE result for Graves’ antibodies, that’s conclusive. A negative result is not necessarily conclusive.
This can be SO frustrating, I know! There is still the possibility that it’s not Graves’, so don’t let the doctor sit back and say "done." You are having severe symptoms, and you need relief. The investigation doesn’t stop just because they didn’t find what they thought they would.
Do let us know how things are going!!
in reply to: Reuptke Scan & Questions #1071292The radiation we receive overall with RAI equates to something akin to a LONG day in the sun. The issue with radiation isn’t that a certain amount at once will cause harm, it has more of a lifelong cumulative effect, so the goal is to reduce the cumulative exposure wherever we can. That’s one of the big reasons we isolate, to keep others from having unnecessary exposure. We need it, it is a therapeutic dose intended to return us to health.
The tech MAY have been referring to the dose for uptake/scan when he said RAI wouldn’t affect your thyroid function. The scan/uptake is done with a different, non-damaging form of RAI. The treatment dose of RAI will absolutely affect your thyroid function, you have that right. It gets into the thyroid and destroys the thyroid cells. The goal is to make you hypo and from then on, your thyroid hormone levels will be managed with replacement hormone.
RAI does not affect the parathyroids. The only organ that takes up iodine is the thyroid, so that’s the only one that will have RAI within it. The rest of your exposure has to do with the RAI that is NOT taken up into the thyroid, and so is excreted through the body’s fluid waste systems ~ mostly urine, but a little bit in your saliva and sweat. For that reason, you will be instructed to drink lots of water and urinate frequently in the first 48 hours. After that, the only RAI that remains will be contained in your thyroid, and it will reduce by half every 8 days (that’s the half-life of the RAI they use for our dose).
ENJOY your friend’s birthday celebration! I’m glad you found a way to celebrate!
in reply to: Autoimmune Disorders #1073374No guarantees. As a matter of fact, our chances of a second autoimmune condition are only [i:2ynuk78j]slightly[/i:2ynuk78j] elevated due to already having Graves’. No predictors for which or if, sorry about that…
in reply to: Autoimmune Disorders #1073372I’m surprised at how often we hear this ~ "been through SO much, yet Graves’ is the hardest." Funny how doctors tend to dismiss us at diagnosis ~ oh, RAI and a pill afterward, piece of cake. Not so much, right?
I’m glad to hear that the tests are so frequent, she is obviously in good hands. If you both look very closely, you should be able to find a little something each day that’s just a tiny bit better than yesterday. Celebrate that thing each day, and one day you’ll find that most everything is resolved. It won’t be tomorrow, but she ought to be feeling MOSTLY herself in due time. Try to help her focus on the long view ~ she’ll get there, and in the end, this will be a bump in the road. BIG BUMP, but it’ll be behind her, and that’s important.Let us know how things are progressing, and give her a BIG hug from me.
” title=”Very Happy” />in reply to: Son just diagnosed #1072924As far as I know, no danger of impotency in males due to taking Inderal, but definitely a good question to put on your list for the doctor. Hopefully your son can get an answer to that over the phone.
-
AuthorPosts
