[Ski]

in reply to: aspartame? #1071985

This isn’t the first time we’ve seen this question ~ I just did a quick search and found a post from November with lots of responses, you may want to take a look.

Here is a cut-and-pasted version of my response at that time:

As far as I know, there are no reputable studies to connect aspartame (NutraSweet) with any kind of diseases, though the suggestions are on the internet LIKE CRAZY. That said, I drank Diet Coke to the exclusion of any other drink for years (yes, I hate to admit it, years) before I was diagnosed with Graves’. It could have been the caffeine, or it could have been aspartame, or it could have been the exclusion of healthy drinks for all that time, but I think it may have served as some type of physical trigger, or perhaps it made me vulnerable.

Now, once you’ve got Graves’ ~ do you stop drinking the Diet Coke, or, if it has done damage, is the damage done already? Hard to say. There are no reputable studies that it causes specific harm, but what good does it do? Now that I don’t drink it any more, I can barely tolerate it, it’s like drinking a can of chemicals. It’s definitely better to be providing your body with some type of nutrient, or if not, just flushing it with plain water. I can’t see much good coming from sucking down a can full of stuff you can’t even pronounce. Just my two cents.

[Ski]

in reply to: RAI #1072253

There actually can be variations in the generics ~ it’s a function of the way our body processes the exact compound (including the fillers that make it into a pill), and it can be very different, pill to pill. If you find that you begin to be feeling "different," get your levels tested just to be sure that your levels are falling in the same range with the new generic. If not, go back to the other that you already "slogged through" to get to the right point. In a Reader’s Digest article this past year, pharmacists across the country recommended against changing thyroid hormone replacement pills from one brand to another, because we can react differently. Small differences can make a lot of trouble, over time. It’s not necessarily that Synthroid is SO much better (it’s the original), but sticking with one brand is always better. It’s hard enough to get regulated, and switching brands can start the whole process over again.

[Ski]

in reply to: Anyone that tried natural methods/diet? #1073679

Hi mamabear,

I thought we had addressed most of this since the original message, but I’ll quickly respond to your specific questions.

KMB did go on the meds for a couple of years and then attempt remission. [Remission is a period of time when we take no medications and maintain normal thyroid hormone levels ~ if we’re taking the meds, it doesn’t qualify as remission. That is defined as controlling your levels with medication.] It didn’t happen for KMB. Even for people who DO achieve remission at the first attempt (I think those numbers are somewhere around 30-40% of patients), the statistics go down for a second remission (a smaller percentage of patients within that population achieve a second remission), so the chances of attaining remission were pretty much nonexistent for KMB, since 2 years of meds did not do it.

Meds do work, and staying on them for long periods of time is possible, but it [i:uqwdmw9v]does[/i:uqwdmw9v] carry risk, and most doctors presume we’d prefer to stop the ups & downs, constant monitoring, and testing for side effects (if we are unlikely to achieve our own remission), get rid of the thyroid and be done with it. Their presumption is one thing, our feelings are another. Some would agree, some would not. It is important to discuss these things with the doctor and come up with our own decision. I think KMB has now done that.

[Ski]

in reply to: Autoimmune Disorders #1073367

It’s actually more general than that ~ people with one autoimmune disorder are slightly more likely to present with a second, statistically. Interesting that Graves’ would present and IC would also flare up at the same time ~ perhaps there’s some kind of "autoimmune activity cell" that could accelerate symptoms from all autoimmune conditions at the same time. Anyone else find that their autoimmune diseases flare up together?

[Ski]

in reply to: Anyone else dealing with nausea? #1071996

One of our more recent members, Amy, has a teenage son who’s been dealing with nausea since his initial diagnosis. He’s been examined by all the professionals, considering every possibility, and none of them could find the cause. It didn’t seem to be connected to his ATD, but he did remain hyperthyroid, so we all suppose that somehow, the hyperthyroidism was causing the nausea. As Amy posted in the past couple of days, he has FINALLY gone hypo, and we’re all hoping his nausea subsides. We’ll see how that turns out (hoping for the best for him!).

PERHAPS you’ll start feeling better as your levels drop? It’s kind of odd to hear about nausea with methimazole, I’ve heard of it a few times for people who take PTU, because of the foul taste, but not so much with methimazole.

Let us know how it works out, okay?

[Ski]

in reply to: Graves disease in Males #1073323

It definitely takes your body a while to return to normal, even though your levels have begun to fall within the normal range. Think of hyperthyroidism like a hurricane ~ the wind may stop, the rain is done, the sea is back in its proper place, but the area is not "well" by any means. Your body is like that. The wind has stopped, the assault is over, but the tree is still on the roof. Your body is only now able to [b:12gxvlk4]begin[/b:12gxvlk4] to heal, and your elevated blood pressure may well be evidence of that. As your levels remain stable, it should begin to get back to normal. It’s good you’ve got an eye on it.

[Ski]

in reply to: 13 years later and now eye problems????? #1072007

Unfortunately, Thyroid Eye Disease (TED) can come on any time ~ it’s a separate, but related autoimmune condition. If that’s what is beginning to happen for you, you should be seeing an ophthalmologist for it (not an optician), and preferably one that has some experience with TED patients. It’s rare enough that not every ophthalmologist has experience with it. The fact that your sinuses have been a problem is telling. In recent research, it seems to indicate that people with chronic sinus problems are more likely to get visible symptoms of TED.

As far as your symptoms of heat intolerance, etc. ~ it’s impossible for us to say whether that’s hyperthyroidism or menopause. You may want to check in with your endocrinologist and make sure your thyroid hormone levels are good, and if they are, check in with your ob/gyn to see if they can determine your status as to menopause.

Please let us know what you find out, and I hope you find some relief from ALL of it, soon! ” title=”Wink” />

[Ski]

in reply to: No thyroid…What happens mow?? #1072015

Well, those are tough questions to answer. Your thyroid is gone, so you’ll need to be on thyroid hormone replacement. That is a certainty. You won’t go hyperthyroid again unless you are taking too much thyroid hormone replacement, and it can’t possibly get out of control, because you’re being carefully monitored.

Will your eyes get better? Impossible to say. If you’re suffering from symptoms with your eyes that are related to the hyperthyroidism (spasms in the eyelids can retract them while you’re hyper, but that’s about it), then that will likely stop. The dryness and excessive tearing comes with having an autoimmune condition which, even without your thyroid, technically you still have (the antibodies exist in your body, but without their target). If you’re talking about TED, the two conditions (Graves’ and TED) are related to each other, but treating one does nothing for the other.

Will you get another autoimmune disease? Impossible to say. You are slightly more likely to end up with a second autoimmune disease, by virtue of the fact that you have one already, just looking at statistics. No way of knowing which it may be, or if you will get a second one at all.

Right now, focus on recovering from the surgery, and from the hyperthyroidism. Try not to get too caught up in "what next?" because it’s truly not possible to know everything that may come. Many patients benefit from stress-relief techniques, meaning yoga, talk therapy, reiki ~ whatever appeals to you, it’s worth a try.

[Ski]

in reply to: having a rubbish day need a wee bit support. #1072021

I feel for you with the MIL ~ it’s really difficult to accept "help" when it actually feels like "disruption." I remember, when I was pregnant, I read an article advising that after the baby came, I should remember not to judge those who are helping me ~ in other words, if the dishes were put away in the wrong cupboard, oh well, nap on. That was REALLY difficult to do, for me. [How will I find my dishes??] ” title=”Very Happy” />

The fact that your MIL came from such a distance, and now turns out to be a messy person, puts you in a heckuva pickle. As if it wasn’t difficult before, you’ve now got one extra to pick up after! I’m not sure what to say ~ I like the suggestion of getting ONE space in order as YOU like it, then you can retreat to that location and calm yourself when the feelings get overwhelming, but of course that makes you feel like you don’t even belong in your own home. How much longer has your MIL committed to stay?

[Ski]

in reply to: Newly Diagnosed #1072362

My children were near the age of your son when I was initially diagnosed, so I do understand. I handled it by being very open with the kids, and explaining as best I could, in simple ways, what was going on. I started before I was even diagnosed, because I knew something was wrong. The worst time was after I had symptoms (puffy eyes were the start, for me), and before I had a diagnosis, but I would explain what I did know, what I didn’t know, how I felt, etc. etc. There were a few times that "story time" ended with me crying, but they knew I felt that the problem was coming from ME, not them. I think hiding it from them lets their fears take over, and their imagination is worse than the truth, no question. Try having a talk with him when you’re feeling okay, and warn him that you may have a short fuse for a while. Try not to be extremely threatening when you say such a thing. I always loved the way Jake handled it ~ in the midst of a roaring fury, he would change the words he was saying, so he would be yelling "I LOVE YOU! I DON’T WANT TO HURT YOU! I WISH I UNDERSTOOD THIS BETTER!" and in some cases, it could actually start a few giggles, which of course breaks the moment and lets everyone calm down to some degree. In any case, it is the best example of being honest about what’s going on. Let him know there’s an end to this. Let him know it’s going to take a while. Make sure he knows that it won’t kill you, that you’re lucky you know what the problem is, and that you’re taking care of yourself, but you just might need a timeout of your own sometimes, to keep it together. Maybe the two of you can arrive at a phrase he can use to alert you to the fact that you might just be having a Graves’ moment. You have to promise not to yell at him for saying it, which means you should pick something that sounds terminally cute. ” title=”Very Happy” />

[Ski]

in reply to: so much support… #1072032

It’s so nice to see a post like this!

My real joy is watching people pay it forward and help each other. ” title=”Very Happy” /> It’s a wonderful dynamic, and it’s heartwarming to see it in practice. Thanks to Nancy Patterson for starting the foundation, and to Jake for bringing in the Bulletin Board! Oh so many years ago, oh so many starfish. Ask Jake about that one ~ actually, it may even be in one of the old posts. Really appropriate.

[Ski]

in reply to: Update on my son #1072035

Just YAY!! ” title=”Very Happy” />

[Ski]

in reply to: Graves disease in Males #1073318

The light exercises may help, and also I think you’re probably right that the normalizing levels will also bring your blood pressure back into range. Just keep an eye on it. I’m so glad you’re starting to feel improvement!!

[Ski]

in reply to: Susceptible to other things?? #1072067

There is evidence that a person with one autoimmune disease has a slightly higher likelihood of ending up with another, but your question about the other elements (allergies, susceptibility to disease in general) is harder to answer. There isn’t evidence to say that Graves’ makes us weaker, in and of itself, but the fact that our body is busy fighting something can make it less able to fight the next thing that comes along, I think. As we all know, we are more susceptible to catching things when we haven’t gotten enough sleep, when we aren’t eating right, when we’re stretched to our limit by other things in our lives. So my GUESS is that the same thing applies with us.

[Ski]

in reply to: Chest pains #1072097

I don’t know whether costochondritis is related to GD ~ I don’t think it is. Jake referred to it as having an autoimmune component, so that may be the connection (the fact that people with one autoimmune disease are slightly more likely to end up with a second), but I don’t believe it has anything to do with the specific antibodies related to Graves’ or to the damage caused by hyperthyroidism.

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