[Ski]

in reply to: Oh Happy Day #1066814

Good luck! Be good to yourself just now, give yourself the best possible chance!

[Ski]

in reply to: Too much levoxyl? #1066956

Sorry, I know it’s no fun, but you really do need to take your time adjusting to new doses, and you need to move slowly up the dose ranges. It MAY be possible to talk your doctor into a dose change after four weeks, especially when you’re feeling so awful, but any more often, or any more at once, can throw your body into another tailspin.

More than likely your cramps and discomfort are a result of being hypothyroid right now ~ if any of your symptoms concern you a great deal, please do check with the doctor, because we sometimes end up blaming everything on our thyroid when that’s not always appropriate.

You’ll get there, I PROMISE! ” title=”Wink” />

[Ski]

in reply to: I JUST DON’T UNDERSTAND #1066827

Just one quick comment about thyroid hormone replacement ~ it’s not that it takes six weeks to work, it takes six weeks to build up enough in your system so that labs read accurately how your body is reacting. The substance is available to your body right away, but there is a period at first of building up your "stores." We take the inactive form of thyroid hormone, which is typically in some form of constant supply, at the ready to be converted into the active form by our body when we need it. When we get such extremely low thyroid hormone levels overall from removal of the thyroid through either RAI or surgery, it can take a while for the stores to build back up so that we have a truly constant amount available for use.

[Ski]

in reply to: question on labs #1066821

Kareng ~ we are typically discouraged from experimenting among "brands," so I’m not sure you’ll get much feedback on that specific question. The fact is that all of the thyroid hormone replacement pills are supposed to be "chemically equivalent" in terms of the thyroid hormone replacement they deliver, but the specific issue we have is that our body can react slightly differently to the fillers that bind it, make it into a pill, or that make it a color, and that reaction can result in our body metabolizing the thyroid hormone replacement just a little differently, which means you can’t always say that if you’ve been regulated at "X" dose of "Brand A," that "X" dose will work exactly the same if you’re taking "Brand B." So oftentimes a switch either between brands or from brand to generic can result in an entirely new process of figuring out which dose gets you to YOUR perfect point.

The real issue with thyroid hormone is just keeping your levels at the normal point you need ~ some doctors will target the same point for each patient, and that’s really not fair. The reason the range of normal is so large is because different people feel normal at different points along that range, so saying "aha, green light, normal range, you’re fine" is premature. You would still need to evaluate your symptoms and experiment a little to be sure you’ve found YOUR normal, and that way you’ll feel the best you can every day from now on. It takes time to dial that in, but it’s so very worth it!

[Ski]

in reply to: labs are moving to normal..how fast does it happen? #1066832

The only constant among all of us Graves’ patients is that we’re all different, and our recovery schedules vary widely, so there just isn’t a definite answer for that. The best thing to do is to watch your symptoms carefully, perhaps keep a symptom diary, and also keep a list of classic hypo symptoms. Check yourself against those symptoms and when you see that you are experiencing multiple hypo symptoms on a consistent basis, that’s a good time to get tested. One week apart seems extremely close, but I do understand your desire to catch it immediately. That’s a good impulse.

[Ski]

in reply to: Too much levoxyl? #1066954

Hi Lacie,

Just remember, it shouldn’t jump out of control again like it did before you knew what was going on ~ you are taking a controlled amount of thyroid hormone, and since you went hypo, you can presume that a good deal of your thyroid is completely nonfunctional. Just keep a smart eye on things, like you’re doing.

[Ski]

in reply to: First set of results since RAI- Confused!! #1067308

It can take up to six weeks just for the excess thyroid hormone you had in your bloodstream to be flushed out, so this soon after RAI, you wouldn’t necessarily notice a marked difference. Wait until the six week mark at least before you start to wonder whether it worked ~ then remember that the RAI does the bulk of its work in the first six weeks, but has potential to affect thyroid tissue for up to six months.

We all understand your desire to get back to a normal exercise routine, but at this point you simply must practice patience. You have begun treatment, but your thyroid hormone levels are probably still not normal yet, and that’s the point at which your body can BEGIN to heal from the onslaught of hyperthyroidism. Until then, your body is still trying to react to the emergency situation it perceives from elevated thyroid hormone levels, and then the rapidly declining thyroid hormone levels. Even though that’s moving in the correct direction, your body still reacts as though you are going through a life threatening event, because in the natural course of things, thyroid hormone just doesn’t plummet like that for any reason.

Once your thyroid hormone levels are normal, AND stable, your body tissues will START healing from the hyperthyroidism. That can take some time as well. You should be able to get back to some exercise once your heart rate comes down and your thyroid hormone levels are normal, but you should definitely check in with a physical therapist first and have yourself evaluated for muscle strength and stamina so that you don’t overdo right away. You won’t be able to return to the exercise routine you had before. You’ll need to build up. You may need to build up far more slowly than you’d like, but safety first. ” title=”Wink” />

As in all things Graves’ ~ patience is a key concept.

[Ski]

in reply to: How long did it take you to go hypo after ablation? #1067063

You shouldn’t have to stay on the beta blockers for long ~ your blood tests at one month may not reflect much change in your thyroid hormone levels, but rest assured, the RAI is doing it’s job. It can take up to six weeks just to flush out the excess thyroid hormone that was in your bloodstream prior to taking the RAI. Still, you don’t really need to wait until you’ve gone officially hypo to go off the beta blockers, but it’s something you should discuss with the doctor. Whenever you’re taking beta blockers, you need to wean off them (not just stop) or else the symptoms they’ve been masking can come back even worse than they were before. We take such tiny doses that the weaning period is typically about a week or two, but it does need to be managed carefully to make sure you’re comfortable.

[Ski]

in reply to: Too much levoxyl? #1066950

While you may think you feel better by taking less or "forgetting" your pill on the day you feel hyper, in the end you’re really just complicating things for yourself and for your doctor. The fact is that we metabolize the replacement hormone very slowly, and not taking it for one day would not result in any particular change that day. All it will do is reduce the overall amount you’ve taken that week, and then it makes it nearly impossible for the doctor to manage your levels. If they know you’ve taken the replacement as prescribed, then your labs mean something. If you haven’t, they really can’t tell what’s going on and they may well "over" prescribe replacement because you’ve been meddling in the middle. I don’t mean to be a secondary "chastiser," but it really isn’t to your benefit to play with that.

[Ski]

in reply to: Menstrual Cycle inline with hyper/hypo & Goiter Gone? #1066878

Can’t speak to the goiter issue specifically (though goiter usually represents imbalance, could be hypo, could be hyper, and the logical extension of that would mean that if you are again balanced, the goiter should disappear fairly rapidly).

The patterns with your cycle are classic with thyroid imbalance. Hypothyroid conditions will result in periods that are heavier and closer together, hyperthyroid conditions will result in lighter periods that are further apart. It can be one way to spot potential imbalances ~ if you get to a point where you are having variations one way and the other month to month, that’s more likely something else (like perimenopause), but if you have consistently lighter periods that happen further apart, that can be a signal to get tested. Right now you’re in a pretty "turbulent" time, so things may go a little bit back & forth ~ really, I gotta hand it to your boyfriend for keeping track! He can be very helpful with that information! ” title=”Very Happy” />

[Ski]

in reply to: new to replacement – couple of questions #1066902

Well! Where do I start? All good questions, and we understand the frustration as well!

Here’s the thing about thyroid hormone. Our body absorbs it through the large intestine, so it needs to GET that far, alone, in order to be sure our body absorbs it as efficiently as possible. That’s the issue with taking it on an empty stomach. In addition to that, there are certain substances that can change the way it is processed in our bloodstream, if that is taken in very close in time to the replacement hormone. STILL, consider this: if you take it the same way each day, eventually your dose will be adjusted accounting for whatever method you use. So perhaps having cereal in the morning (at least an hour after your replacement pill is taken) will mean that ultimately your dose is larger, but it doesn’t mean you absolutely CANNOT eat that way. Your dose may be less predictable by the doctor if you decide to operate like this, but if the end result is that your thyroid hormone levels are within the normal range, no one can really argue with that.

What some people do is to set a second alarm, earlier, and make that the time they take their pill. Then they go back to sleep and wake up at their normal time, fully allowed to eat and drink as they wish. That would solve just about everything, if you’re willing to do that.

As far as taking it at exactly the same time, a couple of hours’ difference won’t make much of a difference, so don’t worry about that. The interactions with other substances have more chance of disturbing your condition.

The first period of time after taking a new dose of replacement hormone (first 3 weeks or so), it’s very typical to feel "kinda up," "kinda down," with no real rhyme or reason. You should find that those feelings even out in weeks 4-6.

You usually need at least six weeks of a dose in order to evaluate how your body is reacting, so it’s not surprising that your doctor prescribed you replacement for such a long period of time. If you’re lucky, it may be working fine and you’ll stay there. If not, no harm done, he’ll write you a new prescription and you don’t have to refill the other. Remember that your body may still have some functioning thyroid tissue, which is continuing the process of destruction (the RAI takes up to six months to do all it can do), so any "x" and "y" calculation may have an "n" or "q" thrown into the mix, especially during this time.

Bottom line, you are WELL on your way to health. It’s still a bit of a waiting game, but you’re closer every minute. ” title=”Very Happy” />

Can’t tell ya about the kidney pain/having to pee all the time ~ definitely see your doctor if all that continues. Did you do a lot of drinking water, more than usual, when you had the RAI initially? I know that’s part of the instructions, and maybe you did that and then got used to it, which may have just changed your habits in general. Still, if there’s pain in your back that isn’t getting better, you should always check with the professionals.

Good luck on your replacement!! Ask any other questions that come up!

[Ski]

in reply to: Back Pain #1066993

There’s one reason behind back pain that may be traced back to Graves’. The first thing that comes to mind is the muscle-wasting that we suffer while hyperthyroid. When our muscles start wasting, they can’t give the level of support we need, and that can lead to "weak spots" and soreness. That could happen in your joints or in your back, depending on how it’s happening to you.

The other thing you may want to consider is that, once we have one autoimmune disease, we have a slightly higher chance of getting another. Fibromyalgia has been identified as an autoimmune disease, and it can cause exactly the phenomenon that you’ve just been through. One little "kink" and you suffer for an inordinate period of time. I’m not sure the mechanisms for figuring out whether you indeed may have fibromyalgia, but it may be a good idea to read up on it anyway.

[Ski]

in reply to: WBC low…what’s next? #1067264

Very true. We saw one doctor at a conference several years ago who said they would never prescribe ATDs for anyone just because they’d seen the worst possible case of agranulocytosis in one patient. It scared them that much.

[Ski]

in reply to: WBC low…what’s next? #1067261

There are a couple of "bottom line" facts to consider. If you’re hyperthyroid, you’ve got to fix that somehow. If you can’t take the ATDs safely, then you can only choose between RAI or surgery in order to correct hyperthyroidism. Nothing else works.

We did have one doctor at our October conference who commented that the side effects from ATDs usually come on pretty quickly, and that each time you go off them and start taking them again, you come in as a "fresh" patient, with just as much (or as little) chance of the side effects as someone who never took them. That was said more as a caution for those who have been on them successfully, then stopped to try for remission ~ he wanted them to understand that, even after having good luck with ATDs, they can have a bad experience the next time ~ but you might want to consider ATDs again, if you’re willing, just in case the lowering WBC doesn’t happen again. It’s a VERY personal decision, especially considering you have small children. The risk is pretty large, IF it happens again, and your doctor has had experience with patients who react worse in subsequent courses of medication, so you may find a great deal of reluctance from your doctor if you want to try ATDs again. STILL, it’s your decision. If you want to try and pursue that, you could. You would want frequent blood tests to make sure everything’s going well.

If you are not interested in taking that particular risk, then, given hyperthyroid test results, you would need to choose between RAI or surgery to correct that. They both work, we have success stories from both camps here. ” title=”Very Happy” />

[Ski]

in reply to: Graves and Future life #1066937

I guarantee you will get a LOT of answers. ” title=”Very Happy” /> Once you are treated and your thyroid hormone levels are normal (and stable), there shouldn’t be any unusual issues surrounding pregnancy that would be related to Graves’ Disease. You should keep a close eye on your thyroid hormone levels throughout the pregnancy, because our reproductive hormones do have the ability to "adjust" our need for thyroid hormone replacement.

Pregnancy while taking ATDs (methimazole or PTU) can be tricky, especially because both are dangerous for the fetus (PTU less so, but it’s more dangerous for the mother, go figure), but still can be managed if it happens.

You will be pleased to hear that children of RAI patients do NOT have any measurable future issues ~ as a matter of fact, they test up a fraction healthier than their counterparts, again, go figure. ” title=”Very Happy” />

Do all your research, but know this: hyperthyroidism is dangerous, and must be treated to return you to health, and to give your children the best possible start in life. Start there. You’re very young, and I’m sure you’ll be successful having children once you’ve gotten this behind you.

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