[Ski]

in reply to: Son just diagnosed #1072926

There are possible side effects with carbimazole, but the doctor typically tests for those side effects at the same time they test thyroid hormone levels, and if they see a problem they will discontinue the meds and the side effects will reverse. One potential side effect is elevating liver enzymes, the other is lowering white blood cell count. Both of these are extremely rare, and as I mentioned, reversible once identified and meds are stopped.

Weight gain is a very common occurrence during treatment for Graves’, for several reasons. The most important reason is that the hyperthyroidism contributes to "muscle wasting," so our strong muscle mass disappears. That’s the weight loss most people see in hyperthyroidism. After treatment begins, the muscle tissue returns, but it is soft, not strong, tissue. We must strengthen it before our body returns to the state we knew before, but we must be careful with that because exercise is dicey if we are hyperthyroid. Until he can get to a physical therapist and start returning the strength to his muscles safely, he should eat VERY carefully, fresh foods, high fiber, low fat, and watch portion size carefully. While we are hyperthyroid, we can eat three plates of food and still be hungry AND lose weight. Once treatment begins, we sometimes need to "re-learn" what a normal portion is. It can be complicated, and we all feel for him. Once his thyroid hormone levels normalize, and stabilize, he should be able to get to the weight issue and successfully handle it.

[Ski]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070177

Quick comment on sea salt: it does NOT naturally contain iodine. Iodine is a salt additive doctors recommended in years past because so many people were experiencing hypothyroidism due to a lack of iodine in their diet. Sea salt directly from the sea isn’t iodized. My newest bottle of sea salt actually carries a warning that this "necessary nutrient" is lacking in the sea salt. Sea salt does have several other trace minerals that are not present in traditional table salt, but iodine is not one that is naturally occurring.

[Ski]

in reply to: Just diagnosed with TED and have some questions #1070002

Sometimes, if a doctor writes a prescription for the eye drops/gel, you can pay just your insurance co-pay for them. If that’s less than the cost of the drops/gel, it might be worth pursuing. My understanding is that, in addition to the TED issues, just having an autoimmune disease can mess with the viscosity of your tears. Still, I’m one who had extremely little TED symptoms (but I did have some), and now I’m pretty much free of the drops. I need to use them when things are out of the norm ~ if I’m outdoors for a long time on a hot, windy day, or if it’s late and my eyes are tired ~ but I don’t have to use them as often as I did before. I am even able to wear my soft contact lenses for up to 12 hours before I feel the absolute need to get them out.

Thyroid Eye Disease is certainly most often associated with Graves’ Disease (that’s why many sites still use that name), but it has occurred along with other thyroid conditions, and that’s the reason for the new name. I haven’t heard any statistics on the different conditions and what percentage of patients have this one or that one, but I can tell you for a certain fact that most TED patients do NOT have the worst of the symptoms of TED.

Remember that TED, like Graves’ thyroid disease, is an autoimmune condition. Elevating your stress response creates an adrenaline rush, which triggers a "boost" in your immune system, and that can boost your TED symptoms. Do all you can to become a Zen master and you may find that you experience less of the symptoms. ” title=”Wink” /> We cannot live without stress, but we can learn to react less.

[Ski]

in reply to: Memory Loss #1069970

Agreed ~ but it’s likely your doctor will brush it off, this is VERY common. When I was hyperthyroid, my thoughts were here and gone in nanoseconds, I couldn’t keep a thought in my head. When I was briefly hypothyroid, I couldn’t GET a thought for a million dollars. The best possible antidote is a pen and paper or a PDA or cell phone calendar ~ obviously, this will not be of much help when you are forgetting what store you are in, but it might help you remember where you’re headed, and it may help you camouflage the forgetfulness to some degree. Get involved in keeping your calendar updated and in hand, minute by minute if you must. If you use a PDA or a cellphone calendar, set reminders that will give you a reasonable amount of time to "save yourself" so you can be where you need to be.

[Ski]

in reply to: Good News! #1069994

CONGRATULATIONS! Every little milestone seems enormous, doesn’t it? What a relief!! Wish your daughter well for ALL of us.

[Ski]

in reply to: Hey Ski, I have a question? :) #1070030

Finally answering the last question put directly to me ~ did I feel better after quitting aspartame? Well, that’s all rather confused, because I did it at the same time my GD treatment began, so it’s not something I can say for sure. I do know that after months of not drinking Diet Coke, I picked one up and thought I must’ve been literally "brainwashed" to think I liked it all that time. It was like ingesting plastic. I used to drink it, literally, to the exclusion of all other fluids. That can’t help.

[Ski]

in reply to: the rai is working:-) #1070044

Atta girl, runlacie. ” title=”Very Happy” />

[Ski]

in reply to: Medicine before surgery #1070120

If a patient is going to have issues with liver enzymes, it usually shows up very early when treating with PTU, so you’d know that long before you were regulated and attempting pregnancy, and you’d make another choice of treatment. In addition to that, the "dancing" thyroid hormone levels are usually as a result of the antibodies NOT affecting the thyroid any more, and so usually the levels get closer to normal, not further away (necessitating higher doses). It’s more common that the patient can completely stop taking PTU during pregnancy and still keep stable, normal thyroid hormone levels.

About the difference between RAI and surgery ~ it is recommended that you wait six months after RAI, but you’d also want to wait a period of time following thyroidectomy to be sure your levels are normal, and stable, and you’ve had a chance to heal. That could easily take six months.

It is a VERY personal decision, and one that needs to be made carefully. But it’s possible to have a healthy pregnancy, and a beautiful baby, while taking PTU. Or after RAI. Or after surgery. We’ve seen ’em all. ” title=”Very Happy” />

[Ski]

in reply to: Hey Ski, I have a question? :) #1070022

I still drink caffeine every day, don’t tell. ” title=”Very Happy” /> It doesn’t appear to affect me more than the usual person, but I have always been pretty sensitive to caffeine anyway so I drink tea instead of soda (much less caffeine per serving).

For 100 doctors whose food advice I’ve heard, I’ve heard 100 different sets of rules about food, so I don’t believe there is any overall consensus about what we should consume or what we should avoid, especially once we’re regulating our thyroid hormone levels with replacement hormone.

I actually did quit drinking Diet Coke shortly after my diagnosis, because of all the internet rumors that aspartame was the cause for my disease (um, it’s not, just in case anyone wonders), and I eliminated caffeine from my diet entirely for at least a few years, maybe more. I would drink iced tea at restaurants, for lack of a better choice other than plain water, and finally found the famed "Arnold Palmer," iced tea & lemonade 50/50, so now I make my own and dilute the lemonade so there’s not much sugar in the ones I drink. Now I have those all day (not after dinner), it doesn’t bother me, doesn’t keep me from sleeping, and I don’t feel any different than when I wasn’t drinking any caffeine, in terms of my thyroid symptoms, etc. etc.

If you want to try doing without caffeine, you’d need to stop it for a while to get a really good idea of how you feel without it, because there’s the "withdrawal" phase where you get those horrible headaches, and you’d need to get past that before you’d really know whether it made a difference overall to how you feel.

You may want to look at quitting soda in general though ~ that stuff is just a pile of chemicals with caramel food coloring. I can hardly drink it any more, even in an "emergency" when there’s nothing else. When you think about it, you could be doing good things for your body with plain water, or adding nutrients with either juice or milk (soy milk, almond milk, or any kind of milk), instead of spending money on soda and getting nothing your body needs or uses for its health.

[Ski]

in reply to: Medicine before surgery #1070118

It’s obviously a very personal decision, but I can tell you from being on this board for more than 10 years that many, MANY women have had successful pregnancies while taking PTU. It is definitely a high-risk category, but if you gather a good medical team (including pediatric endo), you can manage it successfully. It requires monitoring of your thyroid hormone levels, and while PTU is "safe" for pregnant women (or at least the recommended choice, between the two ATDs, for a pregnant woman), it has a certain dose threshold above which it is no longer considered safe during pregnancy, so it’s best to have your levels managed well at a low dose before you anticipate becoming pregnant.

In a strange twist, sometimes the Graves’ symptoms abate during pregnancy, because the immune system "relaxes" in order not to attack the "foreign tissue" that is the baby. In that case, the important period is post-partum ~ make sure your levels are tested frequently, because when the immune system kicks back in, hyperthyroidism can come on like a freight train.

Having stable levels of thyroid hormone prior to pregnancy puts you in the best possible position for a healthy pregnancy for both of you, so however you achieve that is up to you.

I’m glad you’re asking questions, it’s important for us to realize that not all doctors have the very best information. For one doctor to tell you that "no one will want to handle you" if you get pregnant is pretty irresponsible.

[Ski]

in reply to: the rai is working:-) #1070040

Congratulations!
It’s sure a long road, but SO gratifying when you see improvement!
I’m so happy for you!

[Ski]

in reply to: Anyone experienced xanthalasma #1070032

In some people, when there is pressure behind the eye (as in TED), the fluid from behind the eye ends up being pushed into the tissues around the eye rather than the eye itself bulging out. An ophthalmologist should be able to measure the pressure behind your eye to see if that’s what’s happening with you.

[Ski]

in reply to: 1 year after Radium treatment #1070034

This is DEFINITELY normal. Things happen slowly when we’re getting back to normal, because our normal "point" within the normal range of thyroid hormone is not obvious until we reach it. In addition to that, until we find it, we need to wait at least six weeks between dose changes in order for our body to fully metabolize the dose and react appropriately so we can see where to go next from the blood tests. Last element to the puzzle is that it’s not safe to move more than one dose level at a time. She’s closer every minute, try to look at it that way.

Whenever I change a dose of replacement thyroid hormone, it takes at least a couple of weeks feeling up/down before I start to level out. Once she find her "spot," you should be able to relax and test just annually or so, but the finding of that spot is extremely important to her future health, so the time spent finding it is valuable.

Keep in mind that all this time her body’s been out of balance, and it’s been suffering. Once she has found her spot, her body can BEGIN to heal from all that suffering. So that day will begin a period of improvement that will eventually end up where she feels very well, but she will NOT necessarily feel well on that day or even very soon afterward. And that is also normal.

You sound like you’ve been very observant, and right by her side. She is lucky to have you. Hang in, you’ll both get there. ” title=”Very Happy” />

[Ski]

in reply to: Question about autoimmune research #1070059

I can say I’ve never heard of such a thing. Autoimmune research is ongoing, but they are not very far along in the process in terms of either understanding exactly why we get these diseases or in terms of how successfully to treat the autoimmunity itself. Treating autoimmune diseases involves treating the symptoms and saving the life of the patient at this point. You can raise the health of your body in parallel to treatment, meaning that it always helps to find things your body is sensitive to and eliminate them, or find out what provides a lot of benefit to you specifically and make sure you get that, but that has more to do with just doing what’s right for you, vs. what only Graves’ patients, or autoimmune patients, would derive benefit from.

As far as not being "cured" of Graves’ ~ well, if you’re talking about just the thyroid disease, through surgery you’ve eliminated the target of those antibodies, so in that one respect you are cured. Those specific antibodies have nothing to attack now, so they can’t harm you any longer. Antibodies are much like a lock and key relationship, so it’s not as if antibodies to one thing can morph into antibodies to another thing, simply because their target is removed. What we now know, however, is that Graves’ is more a syndrome than just one disease, and so multiple sets of antibodies are involved (potentially) within that syndrome. For that reason, no, you are not cured. Those other conditions (TED and pretibial myxedema) happen rarely, but they do have a somewhat unique connection to Graves’ thyroid disease. TED can happen with other thyroid diseases too, but most commonly along with Graves’ thyroid disease.

The logical conclusion is that, with all this lack of information, there may yet be other sets of antibodies we carry that we don’t know about ~ all of us seem to experience "memory issues," even after successful treatment. Is that lingering effects from the hyperthyroidism, or something else? We don’t know yet. So the book is definitely not all the way written. But work IS ongoing, and we’ve met some of the doctors at our conferences. They WANT to have something they can hand us, something simple, that will solve it all. But right now, that just doesn’t exist.

I will say that with all the dysfunction you are suffering, I would suggest that you see what happens if you try adjusting your thyroid hormone replacement by tiny bits. It is POSSIBLE that you have been off, just a little, for a very long time, and your body is manifesting that imbalance in some of these ways. The range of normal is enormous, and different people ARE normal at every different point along that range ~ that’s why the range IS so large. Just because your levels fall within that sea does not mean you have found the right spot for you. It can take some time to adjust it, but if you find a doctor who’s willing to see how it works for you, who will monitor you and advise you, it could well be worth the effort. It’s worth trying everything you can to really feel well again.

[Ski]

in reply to: Missing my voice :( #1070076

I am SO sorry to hear your story! I’m sending you a link in a private message that may help with the insurance issues.

I have heard of vocal cord paralysis following thyroidectomy, but I would have expected your doctors to be much more forthcoming and offering far more detail than you’ve received. My understanding is that in some people, it resolves, and in others it doesn’t. Not sure if there’s a good way to tell which is which. There’s also a chance that your vocal cords were nicked during the procedure, and (knowing what I’ve seen about some U.S. doctors) you may not find out by asking the doctor who may have done it, or even their affiliate hospital/clinic. If they admit it, they face liability for having done it. In the meantime, they can’t offer ideas for treating it, since they aren’t admitting it happened. It’s a pretty sick system. For that reason, I’d look for a doctor completely separate from those who have treated you already ~ separate in ALL ways, not in their "care group," hospital affiliation, nothing.

I can completely empathize ~ I’m a real talker too, when I get laryngitis I think my family cheers, but I hate it.

I wish I could give you better answers, but if the doctor who examined you doesn’t know what to say, not much hope we’ll be able to figure it out, certainly, but we’ll be here for you. It’s ALL so frustrating, I’m sorry you’ve had one extra piece of "oh no" added to your plate.

Sorry to hear of your employer’s lack of assistance as well ~ I understand when there’s simply nothing else they can give you to do, but to say you abandoned the position? Pretty cold.

PLEASE let us know how it’s working out for you, I’d love to hear the resolution!

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