[Ski]

in reply to: Remission? Or just sweet spot for dose? #1067548

That’s a REALLY tough call to make, and it has a lot to do with your own emotions, so I wouldn’t take advice from anyone on this topic, truly. It’s your decision completely. You sound like you know a lot about your options and the risks and benefits of each, so let me see if I can just clarify a couple of things for you.

First, I always thought remission was ANY period of time without medication where your levels remained normal. Not so, we were told at this conference. Remission is actually defined by a period *longer than one year* where you are off medications and your levels remain normal. So, suggesting that you are headed for remission at this point MAY be premature. You may have just hit a level of medication that works perfectly for you, which is no small achievement, I know!

Methimazole is very much discouraged for pregnant women, due to several birth defects it can cause, and lower doses are something you can talk about with your doctors, but I’m not sure the science is in to say that doses below a certain level can be classified as "safe." One of the doctors at the conference was asked this very question, because PTU is recommended for pregnant women, but it can produce liver damage in the mother and has been discouraged, in general, for everyone lately. This doctor suggested using PTU in low doses for the first trimester of pregnancy, because that is when the fetus is most at risk from methimazole, then going back to the methimazole in the fourth month of pregnancy. Now, the fact that you’ve been on PTU and had a severe side effect IS a concern, so that’s something you’d have to discuss VERY frankly with your doctors ~ I would include not only your general practitioner, but also your endocrinologist, AND a high-risk ob/gyn. The really tough part, if you tried to manage it this way, would be knowing when you’re in the first trimester, as that’s a particularly "iffy" time for a pregnancy in many ways. It is POSSIBLE that you would not react to the PTU the same way as you did the first time, FYI, but that’s a really big risk to take, I understand that.

Typically the antibodies "quiet" during pregnancy, because your body is trying to protect the new "foreign body" (your baby), so low doses DO generally do the job at that time. Antibody levels tend to escalate rather quickly after pregnancy, so your thyroid levels should be carefully monitored throughout, and after, the pregnancy.

Now, if you WANT to do RAI so you don’t have to suffer this dance during the period of time you’re also trying to get pregnant and going through a pregnancy, that’s certainly a valid option. You’d need to wait for six menstrual cycles to pass before trying to get pregnant, and you’d also want to be fairly well regulated before trying to get pregnant. Your chances for a successful pregnancy are better once you have achieved a stable thyroid hormone level.

It’s POSSIBLE that thyroid surgery is a good option for you, simply because you know you’re hypo sooner, and you can achieve stable levels more quickly, plus you don’t have to wait the six cycles (if you get regulated that quickly).

This may not be helping much. ” title=”Very Happy” /> Good decisions come from having the best possible information, so I really hope these points help guide you. Make a list of things that are important to you, including timelines for getting pregnant and having the new baby, and the picture should start to form as you go through that process. Include your doctors in the process as well, I know you’ll be glad you did.

[Ski]

in reply to: Am I making a big mistake?? #1067561

Sadly, there is much that endos do not cover with their patients, and for those who do not routinely deal with Graves’ patients, some do not even know as much as WE do about what we are dealing with. One of the facts I think we’ve all learned through having Graves’ is that no one cares as much about our health as we do, so we need to make sure we are informed, and we cannot count on our doctors (ANY of our doctors) to take the time WE will take in order to be informed. Of course, there is a caveat that we need to make sure we are looking at *reliable* information, so if you’re looking on websites, look for sites that have earned medical certifications of accuracy, it’s VERY important. Snake-oil salesmen still exist, and they can make some very pretty and seemingly convincing websites.

The antibody test can come up with a false negative, and in addition to that, the antibody levels rise and fall for reasons no one can conclusively explain, so the fact that your test was negative doesn’t necessarily indicate that you do not have Graves’. What I have heard is that the uptake & scan are more conclusive than any blood tests, when they are "textbook" results.

If you get confirmation from your endo (or internal med doctor) that the nuclear med doctor was absolutely correct, then at least you will have the peace of mind that you were treated in the best possible way for your condition. I completely understand your hesitation about destroying a vital gland, and no one would want to do it unless it were the last resort and the only way to health.

The good news is that you are on your way to health!!! No matter what the cause, this should resolve your hyperthyroidism, which can be SO damaging, especially left unchecked. Keep in mind that your body has been through an enormous onslaught (I’m sure that’s no surprise, you’re feeling it!), and it’s going to take a long time to heal completely. In the meantime, please try to focus on small improvements, things that are better today than they were yesterday. Someday in the future (I hate to say it, but it will not be anytime soon) you will find yourself having lived out the better part of a day without even THINKING about feeling badly, and that day will be the one you’ve been waiting for all this time. At this point, you’re closer to that day every minute, so try and see it that way, instead of "one more day where I don’t feel right." Just pointing your mind in the direction of the positive can make a difference in how your day proceeds and how your attitude heals too.

Also, make sure you are watchful for signs of hypothyroidism ~ it may take a while, since the excess thyroid hormone in your system can take up to six weeks just to flush out of your system before you feel a difference, but when you start to go hypo, you need to get on replacement hormone to make sure you are not hypo for long. The replacement hormone takes a while to build up in the bloodstream for consistent use, so it’s best to get started sooner than later. I liked having an open order at the lab, so I could drop in and have blood drawn anytime I felt I may have slipped into hypo, and eventually I really was hypo, then my doctor phoned in a prescription for replacement based on the results. I had a few tests done before I was truly hypo, but the peace of mind it afforded me was worth it, to me.

Visit often, search for topics of interest to you, ask any questions you have! We have SO been there. ” title=”Very Happy” />

[Ski]

in reply to: Am I making a big mistake?? #1067556

WOW. You have certainly been through it all!

This is a tough question for us to answer, especially since your tests are inconclusive for Graves’ Disease. It’s really impossible for us to know what the right thing is to do, even for a Graves’ Disease patient, so for someone with a "questionable" diagnosis, it’s even harder.

Of course, that’s not very helpful at this point, and I am sorry about that.

The fact that you are measuring hyperthyroid is something that needs attention, and the only options I know of to correct hyperthyroidism are (1) wait and see, just in case it’s a transient event ~ which you’ve done (six weeks’ time would have resolved it, if that were the cause), (2) ATDs ~ which you’ve tried, (3) surgery to remove the thyroid, or (4) RAI.

The fact that your levels are going up and down is really hard on your body, so after going through all the junk you’ve been through for the past two years, this may be the answer to get you back to health.

It’s impossible for us to say what IS going on with you, exactly, especially since your doctors haven’t really figured that out completely. The possibility exists that your body is reacting to something else that’s wrong, that they still haven’t found, but prolonged periods of hyperthyroidism can be fatal, so you need to do something to resolve that situation, at least.

RAI has been used for 60 years, safely, so try not to get too caught up in that worry. If you want some other way to resolve this, then thyroid surgery would be the last possible option. For me, I was not thrilled about having someone cut me open, so I chose RAI when I was looking for a solution. It helped me get back to health.

Does that help at all?

[Ski]

in reply to: Scared high TSH #1067574

Different labs have different normal ranges, though they’re all in about the same neighborhood. When your levels read extremely hypothyroid, there’s a certain "lowest bound" of thyroid hormone in the bloodstream, past which the high numbers really just say that it may have gone too low for an extended period of time ~ there really is no less thyroid hormone than none, if you take my meaning. The TSH level reflects the amount of stimulating hormone being released from the pituitary gland that is attempting to "talk" to the thyroid and make it produce more thyroid hormone. It’s been asking for a large increase in thyroid hormone production for a while, which would elevate the TSH levels, but wouldn’t necessarily change where you stand as far as thyroid hormone. When you start taking replacement hormone (or more thyroid hormone, OR less methimazole), the TSH levels should start to even out rather quickly.

[Ski]

in reply to: Hi!! New Here #1067842

I’m so glad you find value in our forum ~ we take a lot of pride in it. ” title=”Very Happy” />

And just a quick comment ~ there’s a LOT regarding autoimmune diseases that needs more research. Unfortunately, as a disease "family," autoimmunity is not getting a lot of attention. Individual diseases get some research money, but autoimmunity in general gets very little. One of our speakers in Charlotte pointed out that, as a disease family, autoimmune conditions are the most prevalent diseases there are, but that has not translated into research money. Yet.

Lots of things would seem to make sense, and yet after research it’s found that they really don’t work that way, so it’s just impossible to say what IS until we have proof that it is.

[Ski]

in reply to: Hi!! New Here #1067840

The only thing we REALLY know about getting autoimmune diseases is that we are genetically predisposed to getting autoimmune diseases, then some type of "trigger" sets everything in motion. Discovering what the triggers are is exactly where the research is focused right now, but very little has been conclusively determined as yet. I know that, rarely, transient hyperthyroidism can be triggered by a virus, but that resolves in six weeks and has nothing to do with Graves’, so we can’t connect those two things (a virus and Graves’ itself).

I have never heard anyone in the medical profession relate flu shots of any kind to triggering Graves’ Disease, but that only means no one has proved, to date, scientifically, that the two could be connected.

[Ski]

in reply to: post thyroidectomy hand cramps #1067592

It’s also possible to have cramps from low thyroid hormone levels, has that been ruled out?

[Ski]

in reply to: Hi!! New Here #1067838

First, there is such a thing as mild hyperthyrodism ~ it still needs to be treated, but the likelihood is higher for remission, if the elevation in thyroid hormone levels is "mild" at first.

Second, exercise is not recommended while you are still hyperthyroid. You can resume exercise once your levels are stabilized in the normal range, but in the meantime, keep it down to gentle stretching. There are a couple of reasons. The most important reason is that hyperthyroidism can lead to erratic heart rhythms, which can be fatal if they get out of control. The second reason is that, while we are hyperthyroid, we are experiencing "muscle wasting" in our large muscles. The muscles most affected are the large muscles, those in the upper legs, upper arms, chest and back. It’s because hyperthyroidism "revs up" the muscle destruct mode, and suppresses the muscle rebuild mode. This wasting effect happens *without* exercising, but exercising on top of it can make the wasting even worse, so it’s extremely damaging to your body and can make things much more difficult to repair later.

I hope that helps!

[Ski]

in reply to: frustrated #1067615

Until your levels are truly well-regulated, weight issues can remain. The best thing you can do for yourself, once you’ve been cleared to exercise, is to get an appointment with a good physical therapist. Have them evaluate your current strength levels, and develop a rational exercise plan to get you back in shape. You may not be able to do a lot right away (your strength may be FAR lower than you imagine), but every little bit is another step along the way.

As a second part of the plan, do your best to make REALLY good food choices ~ nutritionally dense, low-calorie, low-fat and high-fiber choices, which mostly means fresh produce, low-fat meats, and very few processed foods. Between the good food choices and the exercise, that can take you a long way toward meeting your goal.

We DO understand, we’ve been there! In the meantime, visit your local Goodwill or Salvation Army and get a few clothes that REALLY fit you, because it will inspire you to move and exercise more if you’re not constantly battling against your waistband, and you won’t have to spend a lot on clothes you won’t need for long.

You’ll get there!! ” title=”Very Happy” />

[Ski]

in reply to: CAN I STILL EAT SEAFOOD? #1067624

I’m glad that helped! Just a couple of things ~ raise the head of your bed by putting something under the frame, rather than piling up pillows (as you’ve found, pillow-piles make for sore backs and necks), and that will probably help the eyelid swelling in the morning and also your comfort level. If your eyes are sore when you first wake up, you should check to make sure your eyes are closing all the way during the night ~ they should feel the BEST in the morning, because nighttime is when they can absorb a lot of moisture and heal from the events of the day. If they’re not closing all the way at night, talk with your ophthalmologist for hints on how to alleviate the dryness and keep them closed. And one more thing ~ take Vitamin D along with your calcium to help your body absorb the calcium. That’s important.

[Ski]

in reply to: CAN I STILL EAT SEAFOOD? #1067622

It really depends on what phase of treatment you’re in. If your thyroid is gone (through either RAI or surgery), then seafood shouldn’t affect you at all. Having said that, I still get the shakes if I eat too much shrimp, and my thyroid’s been gone forever and ever. Go figure.

If you have just had RAI and the doctor is trying to make sure that OTHER iodine doesn’t get into your bloodstream for a few days to maximize the RAI’s effect, you may want to avoid any sources of iodine for a short period of time, but you should be able to resume eating food with iodine after the first 3 days. (By the way, lots of other foods have trace amounts of iodine for various reasons, so it wouldn’t be only seafood you’d want to limit, in this circumstance.)

If you are on ATDs and trying to limit your iodine intake in general, the only food that is extremely high in iodine is kelp. Other seafood may have a little bit of iodine, but not enough to cause trouble. When you still have your thyroid, you definitely need SOME iodine, but not too much. Iodine is what the body uses to make thyroid hormone, and you definitely want to have enough to function. You may want to handle that kind of like a person trying to identify allergies ~ introduce one type of seafood, wait and see what your reaction is, and adjust your intake accordingly.

Sea salt has NO iodine in it, by the way, or you can just buy "non-iodized" salt, if you’re trying to limit iodine intake.

I hope that helps!

[Ski]

in reply to: The rollercoaster- am I hyper again? #1067628

I know that the RAI can take up to six months to do everything it is capable of doing, so until you’ve passed that mark, it’s possible that you may have these little "bumps" in the road. From what I understand, the bulk of the changes happen within six weeks, but things can continue to "adjust" all the way out to the six month mark. Hang in, but of course keep an eye out for the more serious hyper symptoms (as you are already wisely doing). It’s probably not likely that you’ll go "full hyper" again, if that helps, but then again, everyone’s different, and strange things do happen, so there aren’t really any completely unequivocal answers.

Remember also that while these fluctuations are occurring, it’s interrupting your body’s healing process (healing from the hyperthyroidism), so continue to be kind to yourself ~ do only what feels GOOD to do, don’t overdo.

[Ski]

in reply to: Hi!! New Here #1067836

You may have a hard time fighting things off while you’re recovering from being hyperthyroid, and most likely that’s the only reason ~ hyperthyroidism takes a toll in every cell of the body, so when you’re trying to do more than just maintain, when your body is trying to actively fight off a virus or bacteria, it may not have all the resources available that it would have if you were completely healthy right now. Take it VERY easy, give your body a break so it can heal, and ask the doctor if there are medications that can support your healing.

Be careful of a persistent high fever and sore throat ~ if you’re on ATDs (methimazole), that can signal a dangerous side effect. If you’re not sure whether you need to be concerned, go ahead and call your doctor’s office to see what they think. It’s always better safe than sorry, and you don’t need to be stressing yourself out unnecessarily either.

[Ski]

in reply to: Hi!! New Here #1067832

Hi Jennifer!

You’ve certainly come to the right place, I’m so glad you found us! The most important thing to know is that we are all different, and treatment takes time. We’re here for you, and we definitely understand, since we’ve all been there… ” title=”Very Happy” />

Go ahead and search up info on the Board, there’s a lot available here that will probably help.

[Ski]

in reply to: Post RAI, day 4….what to expect #1067633

Hi Sallie,

The "dumping" we talk about usually occurs at about the two-week mark, and for the most part, your body will still be "flushing" thyroid hormone out of your system for about 4-6 weeks, so it’s not likely that anything dramatic will happen right away.

It’s pretty typical to stay on the beta blocker for a while longer, and it’s up to you and your doctor to see how things are going and decide when to wean off. You MUST wean from beta blockers, you can’t go "cold turkey" even if you’re on a very low dose, because stopping abruptly can cause a "rubber band" effect of the symptoms you’re suppressing coming back worse than they were to begin with. It’s not a long process, the weaning, but you need to discuss that with your doctor too.

It’s possible that it’ll be months before you go hypo ~ just get to know the traditional symptoms (some are the same as hyper, go figure), and when you are consistently experiencing 4 or 5 of the symptoms, that’s probably a good time to check in and get labs done. As I say, though, it’ll probably be a while. In addition to that, sometimes we have distorted perception because of having been hyper ~ being more tired than we were while hyper translates to "very tired," yet may not mean you’re hypo. Bottom line though, getting the tests done more often than necessary is not harmful, and it’s worth making sure because it’s important to get started on hormone replacement as soon as you know you’ve gone hypo.

At four days, you may not feel much different at all. Look for tiny, tiny improvements in the way you feel, and celebrate those. You’re closer every minute! ” title=”Very Happy” />

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