[Ski]

in reply to: Hi- new with a few ?’s #1064099

Hi Pinky,

You can find a lot of your answers by searching the BB, we’ve had several discussions similar to yours, so you may want to do a quick search for "pregnancy" and you’ll find a LOT of detailed information from those who have been in your position.

I think the comment your doctor made about Graves’ is kind of lost in semantics ~ *most* people consider "Graves" to be the eye disease, the bulging eyes, but in fact that is a related, but separate condition that is more commonly referred to now as "Thyroid Eye Disease," since it occurs in people with other thyroid conditions, and not Graves’.

Graves’ Disease, as WE refer to it, is the thyroid disease, which sounds like that’s what the doctor has diagnosed.

So he’s saying he has diagnosed you as having the thyroid disease, but not the eye disease. I THINK. Check with your doctor to be absolutely certain.

The second thing I need to tell you is that *you* are the patient, and *you* get to make your treatment decision. Your doctor’s opinion is valuable, and good to know, but he is not "the boss of you," and you can weigh the options for yourself and decide what treatment route you want to go down, considering everything you’re going through right now. See a pediatric endocrinologist, talk with an ob/gyn that specializes in high risk pregnancies, and gather all the information you can before you make a decision, but it is important that YOU make the decision.

Many doctors decide what they would do if they were faced with your circumstances, and presume you would do the same thing. That’s not necessarily so, and it’s important for you to have a doctor that is a team member, not an authority figure who "balks" when challenged. If that means you need to change doctors, so be it. It’s worth it.

RAI requires a six-month waiting period after treatment before attempting conception to ensure that any maturing eggs that may have been affected (some of the RAI passes out of your body through the bladder, which is near the ovaries) are out of your system prior to attempting pregnancy. More importantly, you need to be HEALTHY before attempting pregnancy, which may take longer than the six months, and you should know that.

Surgery is definitely an option for someone in your position ~ at least you can say for a certainty WHEN your thyroid is no longer functioning, and you don’t need to worry about the potential RAI effects ~ but it still may be six months (or more) before your levels are normal, and stable, and you are "go" for pregnancy.

We can’t interpret your blood tests, FYI ~ the best thing to do is get copies of them all for yourself, and keep track of whether they are in or out of the normal range. In addition to that, keeping a symptom diary may help you locate YOUR normal point, once you’re at that phase of treatment. Since you want to get there quickly, you’ll want to have a very good handle on how you feel.

ALL things Graves’ take time, so keep that in mind. Even if you lost your thyroid this afternoon, you’d have up to six weeks just flushing out the excess thyroid hormone that’s in your bloodstream right now. Once you begin thyroid hormone replacement, it takes at least six weeks to build up in your bloodstream so that you can get accurate test results. Just letting you know that it’s a long road you’ll be travelling, but we’ll be here with you, and we’ve been through it, so I’m glad you found us!!

[Ski]

in reply to: Any feed back on NMD’s? #1064108

One more quick comment ~ whatever therapies your naturalist may recommend, make sure you discuss these with your other physicians, and even with your pharmacist. It is possible that the therapies may counteract each other (or affect your absorption of medications), so it’s always a good idea to make sure that EVERYONE involved with your care knows EVERYTHING you are doing.

[Ski]

in reply to: Any feed back on NMD’s? #1064107

As of now there is absolutely no reliable proof that we can "force" Graves’ into remission. No supplements we can take, diet we can adhere to, or behaviors we can adopt, have the ability to directly affect our thyroid hormone or antibody levels.

We CAN *support* and *assist* treatment by taking good care of our body and training ourselves to be more "Zen." Since antibodies are stimulated when we are stressed, having a better reaction to stress CAN keep the antibodies from being so active. You may well benefit in these ways from a visit to a naturalist. If you do achieve remission through the use of ATDs, these kinds of support MAY result in a longer period of remission, though again, there is no scientific proof of this, it just seems to make rational sense that a healthier body will react in a more healthy way overall.

Just please do not think that you can treat Graves’ without using one of the three proven treatments. Unchecked hyperthyroidism has about a 50/50 chance of being fatal, so it is not something to play with.

And do remember that we didn’t get ill overnight, and we definitely don’t get well overnight. The fact that you don’t feel particularly well right away doesn’t mean your treatment isn’t working. EVERYTHING thyroid takes a long time. Take this time to learn everything you can about thyroid disease in general, Graves’ Disease in particular, and also about Thyroid Eye Disease and Pretibial Myxedema, since you *may* experience one or both of those as well.

[Ski]

in reply to: New to GD and so many questions #1064124

Hi Stacey,

Welcome to the Board, I’m so glad you found us! I’ll briefly address some of your questions, and you’ll get lots more input, I’m sure.

Since GD is an autoimmune condition, it is "driven" by the action of the antibodies, and they can go active and inactive for a period of time before we go completely symptomatic. I suspect that I was probably "trying to get" GD for about 15 years before the symptoms became constant and severe enough for me to get the right diagnosis and begin treatment.

As far as feeling unwell at this point, that is very normal. Hyperthyroidism causes all kinds of damage, and our body can’t even begin to heal from the damage until our levels are normalized, AND stabilized. In the meantime, try to look for small degrees of improvement.

Difficulty sleeping is classic, while hyperthyroid, and even sometimes while hypothyroid, which can happen while you try to find your "perfect dose" of ATDs, so try not to panic, that will get better. In the meantime, do what you can to find relaxation ~ remember that laying still and relaxing is ALMOST as good for your body as rest.

The itching may be a symptom of an allergy to something in the medication, so talk with your doctor about that. Some patients find that a lower dose of the med, or a brief period taking Benadryl along with the medication, can get you "over the hump" and allow you to use the methimazole going forward. For some, it indicates the beginning reactions of a potentially dangerous allergy ~ this is why I would urge you to talk with the doctor about it and see what they would advise at this point.

Everything to do with thyroid conditions and treatment takes time, and patience, and I know that’s something you may not feel you can handle just now, but indeed you will. I promise. We’ve all been there, and while it was not the most fun I’ve ever had, I’ve made it to the other side, and so have many, many others. You will too. Come by to ask questions, or even just to vent ~ that’s what we’re here for! ” title=”Very Happy” />

[Ski]

in reply to: excessive hunger #1064179

The beta blocker, for us, only serves to mask our symptoms, it doesn’t actually treat anything, so once our levels begin to approach normal, it is very typical that the doctor will remove the beta blockers from our medication regimen. If your heart rate is not dangerously high, there’s no sense in taking something that is just a band-aid for symptoms. As your levels come to YOUR normal point, and remain there, then your body will begin to heal and you will *start* feeling better all the time. By gradual, painfully small degrees, but it’s progress. The fact is that hyperthyroidism has wreaked havoc with our body, has affected it in ways you cannot even imagine, and it continues to do its damage as long as our levels are out of normal range. What we accomplish when we reach normal, stable levels is to provide a stable platform for our body to begin recovering from the onslaught. So your REAL normal, where you feel truly well, all the time, is further away than simply getting into the normal range.

Weaning from the beta blocker CAN have a sort of "rubber band" effect, during which you experience the precise symptoms you’ve been treating, in an even more exaggerated fashion. That subsides, and should do that rather quickly.

[Ski]

in reply to: Questions #1064146

I haven’t heard of Xanax being suggested by the doctor ahead of RAI, but I have heard of patients who have taken Xanax in order to feel better ~ the "dumping" that your doctor referred to (when the RAI destroys thyroid cells, they "dump" the thyroid hormone they’ve been storing, so we can feel more hyper for a short period of time) is typically short-lived, a couple of days’ time, a week at most. In any event, you can alleviate the symptoms with beta blockers, but some people (asthmatics in particular) are unable to take those, so Xanax would appear to be a good second choice to avoid that brief period’s discomfort. It seems to be (as in all things Graves’) very individual ~ for example, I never felt it, and I had RAI twice. You may want to have a prescription available to you (in hand, even), but not use it unless you feel you need it. T3 levels fluctuate widely, so it’s not necessarily a given that elevated levels found during your lab tests are "constant."

ALL of that said, I’d still recommend a visit with a surgeon, if you truly feel that’s your preferred path to health. Your doctor may well know for a certain fact that it’s a dangerous option for you, but hearing it for yourself from a surgeon would probably help you head into RAI feeling better.

[Ski]

in reply to: Remission? What do you think? #1064156

Hi Christina,

Remission is possible, and some patients do achieve it ~ just for clarification, though, remission is technically defined as a period of one year or longer during which your thyroid hormone levels remain normal *without any medication*, so that means without any PTU, or methimazole, or thyroid hormone replacement. Typically the numbers I’ve seen are around 40% of patients that can achieve a first remission. If you achieve one and come out of it, the numbers drop by about half for those who are able to attain a second remission, but even a small percentage tells the story of *some* patients who can achieve multiple remissions through ATDs.

One of the more recent developments we’ve heard is that patients who go off their medications while they have low antibody levels seem to have a better chance of achieving that remission, but I’m not sure we’ve had a "full-up" peer-reviewed study on that specific point yet. We’ll find out more at the conference next month.

Remember that any period of remission is great, but is by definition limited ~ some people here are going on several *years* of remission, which is fabulous, and you may get there too! Still, you will need to get your levels checked and watch for symptoms throughout (not so often, but still necessary) ~ definitely do not confuse remission with cure.

There is an argument to be made that keeping your body healthy overall ~ eating the right foods, getting the exercise you need, learning how to manage stress levels ~ may give you a better chance of achieving remission, or give you a longer remission. It’s worth a shot, and of course healthy is always the right thing to aim for anyway! Still, if you do all of that, and yet you come out of remission someday, please don’t view it as a "failure." This is a tough one, autoimmune diseases are not well understood at this point, so we don’t really know for a certain fact exactly what mechanisms go into our body’s reactions or how to short circuit them. Best to do all you can, then see how it goes for you.

Just keep an eye on your symptoms, definitely pay attention if you feel as if you are getting hyper again (I’ll bet that’s an easy one, who wants to go THERE, right?), and we all wish you the best!!

[Ski]

in reply to: Second round of RAI in the morning. #1064191

I did indeed need two doses, and went *fully* hypo shortly after the second dose (and I waited longer between the two than you have, JUST to be sure my body wouldn’t "finish" with the thyroid on its own). I was so glad when I finally reached healthy levels, I had been convincing myself that I wasn’t really "that bad," but after I got to normal, I could see how unhealthy I was, even being just a little bit off.

The only thing I think people ought to know is that the second dose typically needs to be much larger, not because you’re trying to conclusively destroy it, really, but because the first dose does destroy quite a bit of thyroid tissue, which means your iodine uptake will be far lower than it was. That means you have to take more in the second dose in order to get enough into the thyroid to do the work. The only difference between the two is that you have more of it flushing out of your body in the first two days. After that, what remains is typically about the same amount each time. Let us know how it’s going for you!!

[Ski]

in reply to: Optimum level to get pregnant #1064261

Bottom line, the best level at which to get pregnant is the level where everything is balanced, everything is within the normal range, and YOU FEEL WELL. Both levels (T4 and TSH) have large ranges of normal. The reason is that there are people who live normally at the high end of the range, and there are other people who live normally at the low end of the range. If the optimum normal were the very middle of that range, lab tests would reflect just that number as "normal," not the range they give.

It is extremely important to find YOUR "sweet spot," especially prior to any pregnancy. It can take some time, and some patience. Keeping symptom diaries may help you speak with your doctor and get the cooperation you need to find that sweet spot. Doctors *love* empirical data.

In terms of making adjustments to reach the best dose and level, it’s true that, at first, when you’re using ATDs, the readings for T4 will come into focus sooner than the readings for TSH. After you’ve been at it a while, and your levels have been within a much tighter range for a long period of time, then you can begin to "trust" the TSH level in terms of making adjustments. TSH reflects more of an ongoing "average," one that takes weeks of readings into consideration, vs. the immediate level of T4. So both are important, and both should be in range before you try to conceive.

[Ski]

in reply to: Support Groups – Anyone #1064623

The GDF can provide some support to those who would like to start a group in their area ~ check the home page and write or call!

[Ski]

in reply to: PUFFY EYES SIX MONTHS POST RAI #1064758

Just making sure we’re all speaking the same language ~ when you say your levels are "low" and you are "hyPER," then that can be misleading.

When thyroid hormone is elevated, you are hyPER. T4/T3 are thyroid hormone. TSH (thyroid stimulating hormone) is secreted by the pituitary gland, and it is suppressed when you are hyPER.

When your thyroid hormone levels (T4/T3) are low, you are hyPO. TSH is elevated when you are hyPO.

As you can see, T4 and TSH operate like a seesaw (when they’re working right). If thyroid hormone is abnormally high, TSH *should* be abnormally low in response (and vice versa).

I know it seems like semantics, but newbies can get really really confused. Just trying to keep the conversation clear.

[Ski]

in reply to: Side effects of coming off Methimazole #1064690

We know that the antibody levels can rise and fall rather randomly, and there is some evidence that patients who are removed from ATD medications when antibody levels are LOW have a better chance of attaining and maintaining remission afterward. If your levels do not remain normal after going off the medication this time, you can potentially go back on the medication and try again for remission later. That time you may want to check antibody levels prior to discontinuing medication. Otherwise, the only "side effect" of going off ATDs is that your hyperthyroidism can return. Be vigilant.

[Ski]

in reply to: New to site and have Question #1064699

Super quick clarification ~ if your thyroid began producing hormone again, you’d become hyPERthyroid, not hypo (message above).

It is extremely rare that tissue "regrows" ~ it’s ALSO rare for tissue that wasn’t destroyed to be stimulated this long after RAI. I’m not completely certain that I’ve heard of confirmed cases of tissue "regrowing," that’s one I’ll have to ask this year’s doctors at the conference in San Diego. I may have seen people here refer to it in that way, but I’m really not sure I’ve ever heard a doctor say that has conclusively happened.

[Ski]

in reply to: Could this be something other than graves disease #1064762

Beta blockers are very good at hiding our symptoms, but they do nothing to address the thyroid imbalance. We are given beta blockers so we don’t feel so awful, and they help, but thyroid hormone lab results are the gold standard as to what’s going on inside your body, and continuing, separate treatment (besides the beta blockers) for that imbalance is imperative.

[Ski]

in reply to: HypER to HypO almost overnight? What is going on?!?! #1064788

Depending on the cause, it can happen quite rapidly.

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