[Ski]

in reply to: Hyper after RAI #1067175

You are so welcome! ” title=”Very Happy” /> Remember, we are ALL here for you ~ I’m just the one who happens to be typing sometimes. Feel the power, be a warrior, you’ll get there! ” title=”Wink” />

[Ski]

in reply to: Hyper after RAI #1067172

It’s really hard to say what your experience will be. Overall, SMALL improvements are noticed pretty quickly, but then there can be brief periods of setbacks, and it’s also true that things move terribly slowly in all things Graves’.

First there’s a chance that you may feel a bit worse before you get better ~ somewhere in the first few weeks you can experience something we refer to as "dumping," in which you feel hyper again for a few days. This happens because as the RAI destroys the thyroid cells, they release the hormone they’ve been storing, all at once. We used to say it’s typically about two weeks out, but I’ve seen some people here talking about going through it earlier, and others later. It didn’t happen to me at all, just so you know. It’s not an absolutely certain occurrence. Speak with your doctor ahead of time ~ if you find that you feel that way, you can counteract the symptoms with beta blockers (if you can take those ~ asthmatics cannot).

Secondly, it can take your body up to six weeks just to flush out the excess thyroid hormone you had in your bloodstream on the day you took the RAI, so you wouldn’t feel markedly better until that’s gone.

Overall, you SHOULD notice small improvements day by day as your hormone levels come back into the normal range. Look for them. It’s always better to have your mind pointed in the direction of gratitude than hardship.

Try to remember that once your levels hit the normal range, AND stay there, your body will be able to BEGIN to heal from the damage the hyperthyroidism has caused. Until then, your body is still going through an emergency state. Any time your thyroid hormone levels are moving rapidly (even if they’re moving in the right direction), your body interprets that as an emergency, because it’s not supposed to happen that quickly. So during that time, you may notice that your hair thins a little, and your nails may be brittle. Once your levels are normal, and they’ve stopped changing, then you will notice even more healing and feeling better, but again, a little bit at a time.

I hope that helps!

[Ski]

in reply to: GETTING RAI ON DEC 16….I’M SCARED #1067128

No harm in asking ~ I don’t know anything at all about the destructive properties of one millicurie, or what your particular disease situation is, so I can’t speak to whether it’s enough. The rationale can be different, doctor to doctor, according to their particular philosophy and experience. If you’re concerned, definitely speak up!

[Ski]

in reply to: Hyper after RAI #1067170

Definitely something to discuss with your doctor ~ just because it hasn’t happened in six weeks doesn’t mean that it won’t. Changes in thyroid hormone can happen painfully slowly. In addition to that, they can take a while to show up, even after they’ve started moving in the right direction. Talk with your doctor, discuss not only lab results but also how you are feeling, and go from there. You definitely won’t be the first patient who takes a while to go hypo. The RAI does MOST of its work in the first six weeks, but it has the potential to continue reducing thyroid function for up to six months, so hang in. If you and your doctor agree that ATDs in the meantime may help you, it’s certainly an option. Patience, patience, patience. That’s our mantra.

[Ski]

in reply to: One more question..thyroid storm #1067067

Thyroid storm is extremely rare under any circumstances, and particularly so after RAI, and even more rare after six weeks have gone by after RAI. I suppose there’s a theoretical possibility, if the patient were given an RAI dose so small that it barely affected thyroid function, but it’s certainly not something you’d need to worry about under normal circumstances.

[Ski]

in reply to: GETTING RAI ON DEC 16….I’M SCARED #1067126

The percentage is pretty simple ~ they know how much they gave you, and they calculate how much is inside your thyroid, and they see what percentage that was of the original dose. Then they decide how much needs to BE in your thyroid in order to make the actual RAI work, and they figure out what total dose will leave enough in your thyroid, based on your uptake percentage. So if they give you 20, and your uptake was 37%, then 7.4 will remain in your thyroid after the first couple of days, and that must be what they’ve calculated you need to do the job. You can follow up with the doctor to make sure you "like" their logic ~ I had RAI, with the full intention of knocking the sucker out completely, gone gone gone, and the doctor thought he could bring me down "just enough," (theoretically, could work, in practice, doesn’t, and bottom line, it’s NOT what I wanted) so if I had followed through and asked some questions, I could’ve done it my way the first time. Never a bad thing to ask questions and check beforehand.

[Ski]

in reply to: My choice of treatment and a question about it #1068073

It might just mean your dose isn’t right, right now, to keep your levels normal. The labs should have been back long ago (I get my results by e-mail within a day), so check back with the doctor. It may just mean you need an adjustment in the meds and you’ll start feeling better soon.

[Ski]

in reply to: GETTING RAI ON DEC 16….I’M SCARED #1067124

The first six weeks are usually what it takes just to get all the excess thyroid hormone you have NOW out of your system, so it’s not that unusual to wait six weeks before seeing the doctor ~ that way you can have labs done and they have more likelihood of being helpful.

The uptake percentage is determined during the uptake/scan that most doctors use in order to help determine the dose of RAI. Did you have that done? They give you a tiny dose of a non-destructive isotope of RAI (not the kind they use for treatment), then they have you come back in 24 hours to get the readings done. It shows the pattern of thyroid hormone uptake within your thyroid (which helps to be more certain of the diagnosis of Graves’), and they find out what percentage of the dose remains in your thyroid. Some doctors just pick one dose of RAI and give it to everyone (just heard about that at this year’s conference), so if your doctor is one of those, the uptake/scan may not be necessary ahead of time, in their opinion. From the patient’s perspective, the uptake percentage can help you figure out how much of the RAI stays in your thyroid and how much is flushed out of your body in the first 48 hours.

[Ski]

in reply to: Hyper after RAI #1067163

It takes about six weeks for the body to flush out the excess thyroid hormone that remained in the system on the day of RAI, so the possibility is that you’ve hit "the wall" where you no longer have excess thyroid hormone, and indeed may not have much replacing that. With all of these symptoms happening all at once, if it were me, I’d get to the lab and have levels done immediately. That way you can get on replacement hormone soon, if you’ve already gone hypo. If the levels don’t read hypo right away, wait a week or so and try again, but you may also want to have a quick telephone call with your doctor (if the tests do not read hypo) so you can discuss your symptoms and the results of the lab tests, and perhaps the doctor would be willing to start you on a VERY tiny dose of replacement in order to get you started building it back up.

[Ski]

in reply to: Orbital decompression for ‘cosmetic’ reasons #1067491

The body reacts to new levels of thyroid hormone replacement immediately, but the TSH doesn’t reflect the body’s equilibrated response for at least six weeks afterward. The goal with ATDs (carbimazole) is a little different, and things can be managed with a tighter timeline, but the body can react strongly to carbimazole, so doctors need to be right on top of that in order to avoid even brief periods of overmedication resulting in hypothyroidism. When we’re changing doses of thyroid hormone replacement, we’re changing by tiny degrees, and we do that on purpose, because radical shifts in thyroid hormone levels can be so debilitating, and when we’re "close" but not quite "there," we need to manage things far more slowly and make certain we know what the body’s reaction has been to the latest change. Does that help?

[Ski]

in reply to: advice RAI or surgery #1067069

Hi Katy,

Sorry to hear you’ve had trouble with the ATDs ~ the decision between RAI and surgery is a very personal one, but in addition to that, your surgeon may not be willing to do surgery if you have been unable to control your levels beforehand. Hyperthyroidism can complicate surgical procedures and make them far more dangerous, and also physically handling the thyroid has the potential to allow further release of excess thyroid hormone. I believe there are "iodine drops" you can take in order to limit those particular complications, and there may be other routes to take to ensure your safety. If you want surgery, truly, you should be allowed to pursue that. It’s true that RAI can mean you need to wait a while before attempting pregnancy. The same can be said of thyroid surgery, since you do need to be stabilized (not just treated), but at least you skip the question of knowing when, exactly, your thyroid is essentially "gone," so from what I understand, you are likely to be stabilized more quickly after surgery. Still, it’s no guarantee, because the first rule of Graves’ is that it’s very individual, and we all travel a unique path from each other, so it’s impossible to say "you will be stabilized in XX months." The best thing you can do for yourself is to make sure you are talking with an experienced surgeon and that all of your thyroid issues are addressed completely prior to surgery.

[Ski]

in reply to: Living through Graves disease #1067080

We know a few things about the causes of Graves’ Disease, but it’s not much. We know that there is a hereditary component for ALL autoimmune diseases ~ it is a common genetic defect between all patients of autoimmune disease. Some people have the defect and no autoimmune disease, but every autoimmune disease patient has the defect. So that is essential for the development of Graves’ Disease. After that, we know there are some "environmental triggers," but they are different for everyone. You will find that many Graves’ Disease patients suffered from an extreme period of stress just prior to their diagnosis, so something about stress can obviously serve as a trigger. We do know that, of all the autoimmune diseases we know about right now, Graves’ is the most prevalent. I’m not sure whether diagnoses are actually rising because disease instance is rising, or because we are now smarter about testing for Graves’ Disease. For all we know, there are millions of patients over many years who have been treated for other diseases with similar symptoms and never even knew they had Graves’ Disease. It does mimic many other conditions, and unfortunately has not been well known or studied by doctors.

Now, for your elderly lady friend ~ I realize she’s probably feeling better by taking a beta blocker, but it is not addressing the issue in the least, and she can still suffer terribly from the hyperthyroidism. Beta blockers only minimize the symptoms and protect the heart from the arrhythmias that can be caused by hyperthyroidism. If her blood test still reads hyperthyroid, she is suffering muscle loss, bone loss, and continued tissue damage in other parts of her body (everyone’s different as far as the other tissues that are affected). Remember, her heart is a muscle. Muscle wasting affects that as well. It is POSSIBLE for people to have transient hyperthyroidism that typically resolves within six weeks (which is NOT Graves’ Disease), and it’s also possible for Graves’ Disease patients to have periods of antibody activity that also wane, producing normal thyroid hormone levels for a period of time. If her blood tests show she is NOT hyperthyroid, she would need to simply be vigilant and understand that symptoms may return. If her blood tests show she IS hyperthyroid, it’s a very dangerous condition, and she should educate herself and find a doctor to work with so that she can have the best quality of life possible. Being hyperthyroid is debilitating, and just continues to make things worse if left untreated.

[Ski]

in reply to: Endo has taken me off the methimazole #1067098

When you first take ATDs, it can be a very delicate dance, figuring out what dose gets you to the right level. At first, you usually need to take a little more to bring down the hyperthyroidism, then less as it accumulates in your body and things adjust. It’s a very individual process, and something you should work out directly with your doctor. Above all, please don’t take steps to change the way you take the medication without your doctor’s knowledge. It can really end up making things more complicated than you’d like. Things happen slowly IN GENERAL with thyroid hormone, but the beginning of ATD use can go against that general rule. It’ll take frequent monitoring and an active role on your part AND your doctor’s part, so if you feel that your doctor is not participating as a team member in this process, you may need to either be a little pushy with them, or you may want to find a new physician.

The other thing you should know is that once your levels read "normal," that is just the BEGINNING of your healing. The "normal" reading is a signal that your body has now reached a good balance and is healthy, which is when it can begin to work on the damage that the hyperthyroidism has caused. So you will probably feel a little better when your levels read normal, but it will continue to improve as they remain stable, a little at a time. Closer every minute. ” title=”Very Happy” />

[Ski]

in reply to: ANY SUGGESTIONS #1067132

I only have a minute right now, and I’m sure you’ll get more responses, but the most important thing to know is that this takes time ~ LOTS of time, before the patient really, truly, feels WELL again. Give him space, let him be when he feels overwhelmed. Those are the basics. More later. ” title=”Very Happy” />

[Ski]

in reply to: HAD RAI Treatment at 9am Today #1067211

The likelihood is not that your sensitivity came from the RAI, but from the hyperthyroid state prior to the RAI ~ hyperthyroidism weakens our body overall, and keeps it from effectively fighting off infections. One week past RAI, you’re hardly even out of the hyperthyroid range, and chances are that these infections started taking hold even before your RAI treatment was done. Once your thyroid hormone levels come down (and stabilize), there should be no "extra" infection issues for you.

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