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in reply to: New to NGDF, not new to Graves #1073606
If they’re raising your dose of levothyrozine in reaction to your labs measuring hyperthyroid, they’re heading in the wrong direction. If your TSH levels are HIGH, it means you are hyPOthyroid, and raising the dose of levothyroxine would make sense. Have you had levels done lately?
in reply to: Not Feeling Myself #1073620Our need for thyroid hormone can change for several reasons ~ age, weight, activity level, hormonal shifts (menopause, pregnancy), all of these things can contribute. It typically doesn’t happen quickly, but small changes can make a big difference in how we feel, once we’re managing our levels with replacement hormone.
Also, once you’ve had RAI, the gland itself has been rendered ineffective, so having surgery to take out the tissue wouldn’t accomplish much.
I’ve been heavy my whole life too ~ ironically, I was finally getting myself together at the time I was diagnosed with Graves’. I’d finally been working out regularly, and ended up losing a great deal of muscle mass as a result. I also realized afterward that I’d been having this strange "buzzing" in my ears after a workout that was probably my blood pressure going through the roof.
It’s a complicated issue, weight. The one thing I can tell you is that buying clothes at the right size (maybe even a size larger than you think) will help you get through the day without constant reminders that you’re "pushing at the edges," plus it gives you more of an opportunity to move your body comfortably, which can help you keep weight off. I wish you luck with the self-esteem issue, I know it’s a tough one, and no one can "talk you out of it." There is an awful lot of judgment out there, and this is one thing we are unable to completely hide. Hold your head high, keep your posture, and you’ll LOOK sleeker right off. Remember that the size of your clothes has nothing to do with the quality of your SELF. How you act, how you treat people, those are far better indicators. Anyone that stops at your clothing size in order to decide whether you are "worthy" is pretty unworthy themselves. Try to see it as THEIR problem. As long as you are doing what you can to keep the situation in check (keep your cholesterol, blood pressure, heart rate in the normal range), and you remain somewhat active, you have nothing to feel badly about. It’s all about health and mobility.
in reply to: Life Situations, Emotions, and Graves’ Disease #1073888Just one quick comment: seaweed contains more iodine than any other food, by several hundred times, and is the only food substance we are completely advised AGAINST ingesting while we still have a thyroid. Iodine is what our thyroid uses to produce thyroid hormone, and we typically get plenty in a regular diet. Eating seaweed, with a functioning thyroid and Graves’ Disease, can be tantamount to throwing gasoline on a fire.
I understand the impulse to try and solve this some other way. I would just like to point out that we are not dealing with a virus, a bacteria, or something else we can "eliminate" from our bloodstream. The antibodies are now part of our immune system, and they will remain. We cannot fix that part of this disease. For some, extended remissions are possible, and for some, they are worth chasing. For others, they are not possible, and other methods must be explored for treatment. It is NOT a failure to have chosen a different treatment than attempting remission. We are fortunate to have other options. There are far more patients who will NOT achieve remission than those who will.
There is NO CURE for Graves’ Disease. It is a chronic, autoimmune condition that once we have, we will have forever. Treating the thyroid removes the element of the disease that can be fatal. That’s the first line of treatment doctors will look at. Saving the life of the patient.
After that, we can talk about other things that may help.
in reply to: Anyone that tried natural methods/diet? #1073638Natural methods and diet improvements can help to minimize symptoms, but none can do anything to reduce your thyroid hormone levels. You must at least take ATDs in order to bring your levels down and attempt remission.
Feel free to take advantage of any naturopathic treatments, but make sure you notify your "western" doctor of what you’re using. Just because it’s "natural" doesn’t mean it’s harmless, and certain doses or combinations can be counterproductive.
TED will usually resolve within about three years, no matter what you do or do not do, and if you’re not a smoker, it’s more likely that the cycle will finish somewhere around one year to 18 months from onset. You may be able to hold symptoms down with natural methods, but that is not proven. For the most part, only about 15% of GD patients end up with really bad TED symptoms, and only about 5% of those have the VERY worst symptoms, so there’s only a tiny chance of having the worst symptoms anyway.
in reply to: Newly Diagnosed Today #1073769It’ll be really nice when the autoimmune disease is a thing of the past.
We are a long, long way from that day.
It isn’t even "fixing" the immune system. It’s understanding why our body creates cells that attack our own healthy tissue. That basic question has yet to be answered. Until we get to that point, doctors will continue to chase the symptoms and try to keep patients alive, first.
I will agree that doctors are not gods, and too many will recommend for us the treatment they would choose for themselves. Still, it is NOT as easy as saying you have a "healthy thyroid." You have a compromised thyroid, one that is susceptible to an antibody attack, because the antibodies are already in your bloodstream, and they have affected your thyroid at least once. That means the fibroblasts created by the antibodies are in your thyroid even now, even in remission, and given the proper set of circumstances, can "wake up" and affect you again.
This is not a simplistic disease (actually, syndrome) by any means. Each of us needs to get all the information we can and make our own decision.
I would just caution everyone not to decide (as some doctors do) that what you’ve chosen for yourself is the choice everyone else should make.
in reply to: More Eye Questions – driving me crazy… #1073686Just confirming that removing your thyroid will not affect your eyes (sorry!). The two conditions are completely separate, though related (in that they happen together in most patients, even if disease onset is far separated in time).
Helping your body to be healthier, and learning new ways to manage your stress, will help because they will help ANY condition. Healthier = better, no question. It’s not a magical cure for TED, but it may help you to minimize symptoms.
I like to make sure that people understand this clearly, because there are those who have tried new diets, new stress relief methods, a "whole new way of life," and yet still end up with TED symptoms that, to them, are extreme. I would not want any of those people to feel as if they were a "failure" in those other pursuits, because they were worthy pursuits. They just are not proven methods to reduce TED symptoms.
in reply to: Neck stiffness and pain #1073682If what you have is more like a sore throat that comes with a cold, that should be listed on the side effects. If it’s more like muscle stiffness, that’s not typically something that comes as a side effect to meds, but the fact that it occurred at the same time as you began taking meds might be something to consider. If you develop a fever as well as a "sore throat" feeling, you may want to call the endos office and see what they say ~ they may send you for a lab test to check your white blood cell count. Otherwise, checking with the doctor on Friday may be enough, but since you say it’s something rather more dramatic than just a little soreness, you still may want to call them just to help ease your concerns.
in reply to: Uptake Scan Today, RAI Tomorow #1073694It’s a bit art, a bit science ~ keep in mind that whatever dose they give him, only that 85% (or so) reflected in his uptake will stay in his thyroid. You might want to ask the dosing doctor how they come up with it ~ I believe it’s a function of the goal (total ablation vs. not), and the uptake percentage, and there may be other elements the doctor considers, but I don’t know what those are.
in reply to: Newly Diagnosed Today #1073766Hi JB North Bend,
First, myasthenia gravis is something else entirely. Graves’ Disease is what you’re dealing with, and considering your blurred vision, it’s possible you are also dealing with Thyroid Eye Disease (TED). These are separate autoimmune conditions that happen coincidentally, and they are treated separately.
There is no naturopathic treatment for Graves’ that works, so while we’d all like to handle things with less chemicals, there is no option for that.
The RAI has a slight chance of worsening your eye symptoms (temporarily), so you may want to check with an ophthalmologist prior to doing the RAI treatment. I’m not sure whether you’re doing the treatment right now, or if you’re doing the initial scan/uptake, which uses a different (non-damaging) isotope in order to evaluate the activity in your thyroid and determine your dose of RAI. The scan/uptake RAI will not cause complications with your eyes, but the RAI treatment may. It can be avoided if you take steroids before & after (a few weeks total), but steroids carry their own dangerous side effects, so it should be fully evaluated before you decide to take them.
I hope that helps.
in reply to: Newly Diagnosed Today #1073765Kathyb,
Lymph node swelling and a fever CAN signal the lowering of white blood cell count, which is a possible side effect with PTU, and it is very dangerous if left unchecked. You need to speak with your doctor again ~ it might even be worth going to urgent care or the ER just to be sure.
T3 fluctuates frequently (it can be hourly) ~ it’s not always a good indicator, unless you are testing it constantly. If it remains unusually low at every single test, that’s something to consider, but one result doesn’t necessarily tell you much. T4 in your bloodstream is converted to T3 as you need it, which is why is fluctuates so dramatically, even over the course of one day. Talk with your doctor about all the values and determine what information the doctor expects to get from each of them.
in reply to: Newly Diagnosed Today #1073762There are several possibilities ~ one could be a side effect of the PTU, so you should call your endo’s office and let them know what’s going on. They may send you for some tests to investigate.
in reply to: Reducing Bulging Eyes??? #1073725Unfortunately, if you’ve gone through the hot phase and finally the cold phase, meaning you’ve had a period of time when there were frequent changes, and now your eyes have stopped changing but they’re still bulging, an ophthalmologist or occuloplastic surgeon would be the place to go to find out what your options are for reducing the bulge that remains. Once you’ve gone through the entire cycle, the only thing that you’re dealing with is scar tissue that remains from the original TED hot phase. No diet or other therapy will have an effect on the scar tissue.
There are several surgical options, but the doctors would be the best source to figure out what’s right for you at this point. We have people here who’ve gone through every possible surgery, so you have a good source of info here once you know what you’re facing.
One quick point: make sure that the doctor codes your procedure in such a way as to NOT indicate that this is "cosmetic." Insurance companies will reject that out of hand. You are correcting tissue that was damaged as a result of a disease. This isn’t vanity.
in reply to: Question About Eye Problems #1073737Yes, once it’s gone through the entire curve, that should be it. That can take a few years, but once it’s over, you should be done.
in reply to: Question About Eye Problems #1073733Hi Amy,
The most severe symptoms of TED are NOT common, and they are even less common in young patients. Unfortunately, there’s no way to say what his experience will be, because the most common scenario is one thing (typically symptoms appear within one year before or after thyroid symptoms), however there are patients who fall far outside the typical (some get TED ten or more years after successfully treating their thyroid), so it’s impossible to say what will happen with him.
Young patients hardly ever get the eye disease, and if they do, they usually get it in a way that more easily resolves itself at the end of the process. Let me explain.
At our most recent conference one of the eye doctors told us that there are two ways TED can manifest ~ one is by affecting the muscle tissue, the other is by affecting the fatty tissue. We saw CAT scans of three new patients, one very young, one middle-aged, and one older patient. The very young patient had almost all the involvement in the fatty tissue. The older patient had almost all the involvement in the muscle tissue. The middle-aged patient had about half and half. This was meant to illustrate the typical involvement, based on age at diagnosis, so in general, young patients (IF they exhibit the bulging eyes) are affected within the fatty tissue, which resolves itself much better by the cold phase, returning almost completely to normal.
But the most important thing to remember is that it is not likely at all that he will experience the worst of TED. You may want to get him in to see an ophthalmologist just for a baseline appointment and to allay your fears right now. That gives two advantages ~ first, you’ve already begun a relationship, in the event any changes begin to happen, and second, the doctor now knows what your son’s "before" face looks like, just in case.
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