[Ski]

in reply to: newby and questions about methimazole #1066075

The recommendation is typically to take methimazole for up to two years and then attempt remission, but at our last conference we were told that there is no reason a person cannot stay on it, at very low doses, to maintain normal thyroid hormone levels long term, if remission does not come after the first attempt. By the way, a true remission is defined as a period longer than one year where your thyroid hormone levels remain normal with no intervention (no ATD, and no replacement hormone). Keeping your body healthy may or may not help your body achieve or maintain remission, but of course it’s always a good idea!

As you go through the process of bringing your body to its ultimate healthy state, keep an extra eye on your stress levels and reactions to stress. The antibodies that bring on the hyperthyroid state are inside the immune system, which is stimulated when we have severe stress reactions, so being very "Zen" may help a lot more than keeping your diet organic, if you see what I mean. Every little bit helps, I’m not saying that ~ just pointing out that keeping our immune system "quiet" is one of the best ways to try and keep antibody action down. One last thing ~ taking supplements to "boost" your immune system are NOT what you want, same reason. Boosting the immune system = stimulating the damaging antibodies.

There are some issues with taking methimazole long term (for example, being a chemical medication, it is processed through the liver, which builds up "junk" over time and as we age, we cannot tolerate as much "junk"), but if your dose is extremely small, of course that risk is minimized.

The "big" side effect dangers of methimazole typically arise early in the process of taking it (in the first couple of months), so if it hasn’t happened after two years, it’s unlikely to begin at that point or beyond that point. ONE more point on that ~ if you stop to attempt remission and restart, the risk of those bigger side effects (liver failure, lowered white blood cell count) are *the same* as if you just began the medication. In other words, one successful round of treatment does not guarantee you will not experience those rare, serious side effects in a second round, so be VERY vigilant if that is what you do. It’s also a good argument for staying on the meds, rather than going off them frequently to see about remission. Get yourself to a good spot, where your levels are stable and you feel good ~ oh, and we’ve also heard that having very low antibody levels can support a remission, so get those levels tested prior to attempting remission. They fluctuate for reasons no one truly understands right now, so you can’t "guess" where they are by how you feel. Testing is the only way to know.

[Ski]

in reply to: Too much levothyroxine #1066065

It’s not likely to make much difference if you skip a dose, and the trouble with skipping is that you can’t rely on subsequent labs, necessarily, if your dosing has been haphazard. The fact is that our body metabolizes the replacement slowly, and if you’re slipping into the hyper range on this dose, one less dose won’t change it. Remember that you absolutely will not "spike" into dramatically hyper ranges as you did when you first got sick. It’s not a runaway train. The other thing to consider is that, as we first go on replacement, and adjust the doses fairly regularly, we can actually *feel* high/low on occasions, without actually being hyper. Best to wait until you know for sure.

[Ski]

in reply to: TSH levels always *out* #1066084

I don’t have much time, just wanted to quickly point out that the "cold phase" refers only to TED, not to Graves’ thyroid disease. Thyroid hormone levels need to be managed carefully lifelong, no matter what treatment we choose.

[Ski]

in reply to: Driving a car #1066100

Not sure how many, but I can tell you that patients with the very worst symptoms are a very small group within the set of people who deal with the eye disease. Most of the issues created by TED can be fixed relatively well (in the cold phase, after it’s run its course), with either surgery or other modifications (prism glasses for double vision, for instance), so I think the number you’re looking for would be rather small. That’s in the LONG term.

In the SHORT term, when symptoms are at their worst, I think the numbers would be higher. It’s a really tough condition to deal with, both physically and emotionally, and when things are different day to day, it may be a wise decision for some, to keep away from driving for a little while. Most people should be able to return to it after the disease runs its course.

If it’s double vision keeping you from feeling safe as a driver, you can patch one eye to make the doubling go away, but you weaken your depth perception as a result, so be very careful. If you choose to use a patch, switch the patch from eye to eye occasionally (one day left, one day right, for instance) so that neither eye becomes unusually weak from lack of use.

[Ski]

in reply to: Side Effects From my antithyroid medication #1066116

Methimazole can be taken once a day ~ PTU is the one that must be evenly spaced ~ so that part of it doesn’t need to be a worry. If the doctor was upping your dose in response to your lab results, again, shouldn’t be a worry ~ you can try it and see what happens. It is fairly typical that we need to take more ATDs at first, then reduce the dose as levels come down, so it doesn’t have to mean you’ll need that high dose always.

More of a concern is your doctor’s attitude. This is a LONG road you’ve started down, and it is important to have someone "in your corner," acting as a team member, not as "the boss." You can stay with this doctor until you find another ~ in other words, don’t stop treatment just because your doctor is acting in a way that’s not helpful ~ but it would be good for you to find another. Check your insurance coverage and see who you are allowed to see, and just start looking into them. You can learn a lot just from the front office staff, or if you know someone else who is treated by an endocrinologist, check and see if that doctor is taking new patients (if your acquaintance likes them, of course!). There are ways you can investigate doctors without committing to having them as your doctor for always ~ check and see if the doctor will meet with you briefly after office hours, for example. Ask for 15 minutes, and keep to that time. You’ll learn a lot, if you bring your questions with you. It’s tough to find an endocrinologist with "extra" time, so try to be open-minded as you go through the process. Apparently it’s either an under-chosen specialty or else an over-needed one, but either way I’ve never known doctors quite as busy as the endocrinologists I’ve seen.

Wishing you luck, glad you found us!

[Ski]

in reply to: re-radiating thyroid after it grows back #1066122

Hi Chuck,

It’s less likely that the thyroid has "grown back" and more likely that the RAI dose given to your daughter was simply not enough to destroy all thyroid tissue. Any thyroid tissue that remains active following RAI has the potential to react to the antibodies and ultimately bring the patient back to a hyperthyroid condition.

I had two RAI treatments for that very reason ~ my endocrinologist and I had communicated about a full ablation dose of RAI, but no one spoke with the doctor who chose my dose, and he believed there was a chance of killing "just enough" of the thyroid, so he gave me a lower dose than I required. A couple of years later, I was back for a second dose.

There should not be any issues with doing this a second time, except that I would have her touch base with her dosing doctor (usually a radiologist/oncologist) to ensure that they are AIMING to destroy the thyroid completely this time.

One thing to know ~ the dose is calculated based on a few factors. One of the main factors is the uptake percentage, derived from an uptake/scan. When we are first ill, typically that number is very high. It tells the doctors how much of the RAI dose will ultimately get INTO the thyroid. The way it figures in is this: if your doctor feels that your thyroid "needs" 8 millicuries in order to be destroyed, and (hypothetically) your uptake percentage is 80%, then you would need a dose of 10 millicuries in order that 8 millicuries (80% of the 10 millicuries) ultimately get to the thyroid. After you’ve had one RAI, your uptake percentage will be far lower, so the initial dose may be higher, but the amount ultimately taken to the thyroid may be very little. Let’s say they feel she needs 5 millicuries to do the job this time (much less thyroid to destroy), but her uptake is only 25%. That would mean an initial dose of 20 millicuries would be necessary in order that 5 millicuries ultimately get to the thyroid.

Remember, when you are looking at these numbers, that thyroid cancer patients routinely receive RAI doses in excess of 100, sometimes even 200 millicuries, and that is considered a safe, therapeutic dose for purposes of treatment. In other words, even at THOSE dosage levels, there is no anticipation of future issues related to the RAI.

Encourage your daughter to visit, we can help her with any questions she may have as well. Glad you found us!

[Ski]

in reply to: withdrawal of synthroid after nine years #1066124

Yours is a unique question here, since we deal with Graves’ Disease, and it appears that was never your issue. Your uptake test may shed some light on what’s going on. If you don’t need Synthroid, you shouldn’t be taking it (it would make you hyperthyroid), but if blood tests didn’t reflect a hyperthyroid state, that’s extremely odd, and something we could not speak to.

The one thing that MAY be of help is that we know the range of normal thyroid hormone levels is enormous, and what that means is different people feel normal at many different points along that range. If YOUR normal is "low" on the scale, then having your levels in the upper part of the scale would lead to YOU become hyperthyroid.

I am certain that you need to be a team member in this process, so make sure you learn all you can about what’s been going on, and what the doctors are proposing in terms of tests and treatments. No one cares about you as much as you do, I guarantee it. No one is going to put as much time into figuring it out as you will.

Unfortunately, I don’t think we can provide much guidance for you. We do wish you luck!

[Ski]

in reply to: recurring pretibial myxedema #1066504

If your thyroid hormone levels are well managed, then the muscle issues should not progress. You may want to have yourself evaluated by a physical therapist to make sure you’re not overworking a very weak area ~ that could result in continuing problems.

[Ski]

in reply to: Low Light and Balance #1066186

I was thinking of Meniere’s, but I just looked it up and I apologize, I must correct myself, it is NOT an autoimmune condition. It may not be the cause of your episode, but it is something you could look into ~ the page I’m looking at says there is no conclusive test for it, so it is usually diagnosed only when no other cause can be found.

[Ski]

in reply to: Graves’ Disease In Our Own Words is AWESOME! #1066141

Last time I checked, you can get it on Amazon! ” title=”Very Happy” />
$15.95 new.

[Ski]

in reply to: How do people cope with the nasty comments and laughter ? #1066149

If it helps at all, the fact that your eyes got better after the most severe proptosis is actually evidence that waiting to do OD is a good thing ~ if you’d had the surgery when your eyes were at their worst, NOW they’d actually be sunken inside your head, with another kind of "looking different," and not half so easy to fix.

I wish people with proptosis didn’t feel so awful about it, but the fact is they do, and of course they do ~ it’s the way you present yourself to the world, and you can see reactions in the eyes of others when they are startled by your appearance, even if they don’t say anything. Seeing well is one thing, but protecting your eyes is another ~ it is NOT a normal state of being, having that much of the eyeball exposed, and longterm it can really be damaging to your sight, so please don’t feel as if you’re doing the surgery "for everyone else," OR just for "vanity." It is important to have the protection of the eye socket.

After OD, your eyes will be protected as they should be, and you will stop feeling so self-conscious. I hope, if you have insurance, you get the procedure coded correctly so that it is covered. It is NOT cosmetic surgery, not in any respect.

In the meantime, as Bobbi always says, a smiling face looks better than a not-smiling face, so to the extent you can muster it, give the world a grin and you’ll look AND feel better. It has been proven that moving your face into the position it would have if you were happy can actually start to make you feel happy. It certainly won’t solve every issue related to people feeling badly, but it’s a start.

I’m glad to hear that you feel empowered to get out and have some fun. For anyone who makes nasty comments, just consider the source. Don’t let them take any more of your self-esteem than THEY are worth to YOU.

[Ski]

in reply to: PTU, Skin Rash & Possible Thyroidectomy #1066144

You have definitely come to the right place!

Honestly, it sounds like your doctor is right on top of things, that is GREAT.

Remember, hypothyroidism only results in weight gain as long as you remain hypothyroid ~ once you are on replacement hormone, your levels normalize and you are no longer hypothyroid. You WOULD be, if you stopped taking replacement hormone, which you won’t. ” title=”Very Happy” />

MANY MANY MANY MANY of our members have had thyroidectomies and have been pleased with the result.

Good luck with your treatment! Do a search for thyroidectomy, you’ll find a lot of good information. Please feel free to ask any questions that come up, it’s what we’re here for!

[Ski]

in reply to: Alternating Synthroid doses #1066160

This is a good way to find a dose between two, when you need it ~ I did it one time and it worked for me. It builds up in your system over time, so taking doses on different days doesn’t result in feeling "up" one day and "down" the next, it really does end up getting you to the level in between. Sometimes you can do it other ways, though ~ right now I just take half a pill on Sundays, and the result is the same. It depends on the doses you’re "between," whether that works exactly right or not. You may be able to make some different adjustment, or just go ahead and take the alternating doses. The thing I like about the half-pill on Sunday is that I don’t need to manage two different prescription bottles. Speaking from experience, make some method to remember which day it is, and which pill you’re supposed to take that morning….

[Ski]

in reply to: Advice Needed – Nursing Career & TED with GD?? #1066170

Hi Sue,

Cathy, one of our facilitators, is likely a VERY good source for information for you, since she’s in the thick of the nursing business, and she’s also experienced issues with her eyes. We’ve also got one other member in nursing school, so I hope you’ll get some comprehensive answers from those who have been there.

What I can tell you is that with successful treatment and stable thyroid hormone levels, your muscles should get back to a state where you can effectively use them, and once your eyes go fully to the cold phase, you can easily use prism glasses to resolve your double vision, if that symptom even continues after you’re fully stable.

I would hate for you to drop a lifelong dream, believing that you’ve reached a state where you would be unable to perform the job duties. You may have to be gentler on yourself until you are truly well, and you may need to pay really close attention to stretching and exercising so that you keep your muscle strength up, but you CAN do it. We had a speaker at a conference a few years ago who was diagnosed with Graves’ Disease, treated, and then trained to CLIMB EVEREST. And DID IT (trained AND climbed ~ clumb?) . It was a truly inspirational story. He was already a climber, had summited several big mountains, and he acknowledged that his training after Graves’ was much tougher, but he DID IT. And you can too. I know it.

[Ski]

in reply to: Just how crappy did you feel after RAI? #1066167

For me, the period right after RAI was not much different ~ I started to feel the "edge" come off, but it’s still a very slow process. Your body actually takes up to six weeks just to flush out the excess thyroid hormone that was in your bloodstream on the day you TOOK the RAI, so we typically don’t feel all that different until at least that marker (except, as you say, when we may or may not have the ‘dumping’ of thyroid hormone ~ I didn’t). It’s all a matter of baby steps. Once your thyroid fails, some people have a very rapid drop into hypothyroid, others drop more gradually, but it typically takes at least that first six weeks before you even need to worry about it.

I hope that helps!

[Author]

Posts