[Ski]

in reply to: Time between RAI and pregnancy #1063454

Levels typically don’t change much for the first six weeks, since it takes that long for the excess thyroid hormone that existed prior to treatment to flush out of the bloodstream. After six weeks go by, you should be very vigilant about symptoms, because we have a similar "ramp up" time period while taking replacement hormone, before we really feel the effects of the replacement, so it’s good to catch your hypothyroid status as soon as possible and get started on replacement. Keep a list of classic hypothyroid symptoms and get your labs done when you can say absolutely you are experiencing 4 or 5 of them regularly. Really nice to have an open order at the lab during this time, but make sure you don’t abuse it, or the doctor may revoke it.

[Ski]

in reply to: Time between RAI and pregnancy #1063452

Hi Jen,

There are a few elements to this calculation. The first thing doctors consider is that, as the radioiodine that is NOT taken up in the thyroid leaves the body, it leaves for the most part in the urine, and the urine passes by the ovaries, so any eggs that were just reaching maturity *may* be affected. That’s why we’re told to drink lots of water and urinate often, so there’s no high concentration of the RAI being flushed out at any one time. The better you follow those instructions, the better. I’ve heard that six months has been the routine period of time recommended in order to be sure any egg that is fertilized has not been affected in any way, and my understanding is that many doctors believe that to be on the VERY cautious side, so in certain circumstances, they may shorten that window. I do know some people have posted here who got pregnant sooner than six months after their RAI, and ended up with beautiful, healthy babies, so this may be something you need to discuss frankly with your doctors so you can work together to come up with a plan that works for all of you and addresses all the issues.

You are right also when you suggest this has something to do with getting your levels right and healing from the hyperthyroidism. The upside is that, as you are getting your levels right and healing from the hyperthyroidism, look at that, maybe six months have passed. ” title=”Very Happy” />

Downside is that you can’t be sure that will be fully achieved within six months. Typically the RAI does most of its work in the first six weeks, but according to my original radiologist/oncologist, can continue affecting the thyroid for up to six months to some degree. Higher doses have the potential to shorten the period of time before you are measurably hypothyroid, so if you haven’t had the RAI yet, you may want to have a discussion with both your doctors (the endo and the radiologist/oncologist) to make sure you are aiming for rapid ablation. If that water’s under the bridge, then you might want to ask the doctors what their goal was, when they figured out the dose. I understand that the new "conventional wisdom" is to give higher doses because of better treatment success rates at those doses, so it’s likely that your dose was calculated with that rationale in mind already.

You will have an easier pregnancy if you are feeling well and if your body is stable, so of course that’s the optimum situation. I would recommend getting a team together as you come nearer to trying to conceive ~ include a high risk obstetrician and pediatric endocrinologist, as well as your "regular" doctors, and you may need to be the person taking questions one to another, unless you can get them to speak with each other (typically a little challenging, but it does happen sometimes). ” title=”Very Happy” />

Let us know how things are going for you!!

[Ski]

in reply to: Questions on Treatment #1063461

Well, two things. First, yes, you’d still have Graves’ Disease, technically. It is really more of a "syndrome" than a disease, and it can also involve (for some people) Thyroid Eye Disease (formerly known as Graves’ Eye Disease or Graves’ Ophthalmopathy) and/or pretibial myxedema (an orange-rind rash ~ purple in color ~ on the shins). Those manifestations are rare, but the likelihood of having them has no relationship to your thyroid treatment. You would, however, be free of the thyroid disease, having removed the thyroid. The antibodies may remain, but would no longer have the thyroid to affect. The hyperthyroidism is the most dangerous element of everything Graves’, so that part of it is no longer possible without a thyroid.

Second point, yes, you’d be hypothyroid, but of course we have synthetic replacement thyroid hormone, so once you are on a good dose of replacement hormone, you are no longer hypothyroid, you are corrected by replacement hormone and you are euthyroid, as people are meant to be. The difference then would be that you would need to manage any adjustments that need to be made by regularly checking thyroid hormone levels. After reaching a dose that works for you and remaining stable on that dose for a period of time, you can typically just be tested once a year, in the absence of any symptoms that may indicate your levels need adjustment. Lots of things can affect your need for thyroid hormone, but typically the changes don’t come on rapidly. The things that can affect your levels are activity level, weight, hormonal status (puberty/menopause/pregnancy), and age. I’m sure there are probably more. It’s just important to know that it’s not one dose for life, we do still need to keep an eye on things to some degree.

I hope that helps!

[Ski]

in reply to: Chronic Weakness 17 Months in Remission #1063463

Have you seen a physical therapist to evaluate your strength in each muscle group? It seems that hyperthyroidism affects each of us individually, and it seems to hit particularly hard in areas that have been affected earlier through accident/disease/etc., so it’s possible that you are hit particularly hard in the muscle groups that affect the areas where you are having pain, and it might be that a personalized exercise plan, specifically targeted to develop the areas where you might be weak, could give you some relief. It could take some time, but I’ll bet you’d feel results rather soon, if you are doing exactly what is needed for those specific muscles.

It’s worth a shot!

[Ski]

in reply to: Remission after 5 months?? #1063493

TSI antibodies are the ones that are unique to Graves’ Disease, and there is some correlation emerging in the studies between lower levels of TSI antibodies and higher incidence of remissions, so that may be helpful information before you decide (with your doctor) to stop taking the meds. The typical course of ATDs is to go for at least one year, maybe even two, before discontinuing the meds and attempting remission. Doses can be very, very low (5 mg every other day maintains things for some patients), but longer periods before stopping can be helpful. Keep in mind, a clinical remission is a period of longer than one year with no medications whatsoever (ATDs or replacement hormone), so even if you end up with a remission that lasts a little less than a year, it’s still a fairly long period of time for YOU.

In the event that a remission does not happen for you, though, keep in mind that patients can be maintained longterm on very low doses of ATDs.

[Ski]

in reply to: Can you find out if you have the antibody that causes TED? #1063560

We just got some info on the TSI test (at the conference) ~ it’s true that these antibodies are implicated in Graves’ Disease (the thyroid disease), and can be conclusive in diagnosing Graves’ along with observation of symptoms and elevated thyroid hormone levels. It appears that there is some relationship with TED (or pretibial myxedema) symptoms, but the direct connection has not yet been fully charted. It doesn’t appear that the number of antibodies in the system has a direct connection to severity of symptoms, etc., but we do know a few things. For instance, a patient that is attempting remission from ATDs may have a better chance of achieving that remission if the TSI levels are low when the medications are stopped. We also know that a pregnant mother with high levels of the TSI antibodies may have a higher risk of giving birth to a baby with transient hyperthyroidism (NOT Graves’) as a result.

Unfortunately, likelihood of TED is not something we can quantify right now, by any means. Most of the time, thyroid disease patients present with TED within 18 months of onset of thyroid symptoms, but there are those with TED that never develop thyroid symptoms, and there are those who end up with TED who were successfully resolved as to their thyroid symptoms for more than 20 years. I certainly wish I could guarantee that there were one way it happens, and if you’ve passed that point, you’re home free. But no one can do that.

The one thing we DO know is that only a small percentage of GD patients end up with severe eye symptoms, and only a small percentage *of those* develop the most severe symptoms, the ones that’ll make your knees go weak when you see those pictures. So while it’s possible, the odds are against it happening to you, so hopefully that helps a little.

[Ski]

in reply to: Hyperthyroidism: natural supplements or RI? #1063543

Just make sure you watch your thyroid hormone levels. If they remain within the normal range, and stable, then terrific. Perhaps you do not have Graves’ at all, perhaps the cause for your hyperthyroidism was something else. If you do have GD antibodies, they can wax and wane for reasons no one understands, so things could *appear* to resolve, but it may not be for the reason you think ~ there is absolutely no evidence that other substances have an effect on thyroid hormone levels, and believe me, they’ve checked! So you need to continue to be vigilant about your symptoms and keep checking your levels to make sure you don’t put yourself at risk. If your levels do not truly resolve, then you need to discuss that with your doctor. One more thing about that ~ in a normal, healthy person, thyroid hormone levels vary VERY little over their lifetime, operating in an extremely tiny range within the normal range, so even bouncing around within the normal range, if levels routinely go from the highest part of normal to the lowest part of normal, that’s not "normal," and it’s hard on your body (almost as hard as having level consistently outside the normal range).

[Ski]

in reply to: Hello from England, struggling with treatment #1063536

With careful attention, after achieving normal, stable thyroid hormone levels, your muscle strength and tone will *definitely* return. Seeing a physical therapist before you begin re-strengthening is a good idea, since you will not know exactly how much muscle you’ve lost or from where, without a comprehensive evaluation. I’ve heard stories of patients who had to return to an exercise regimen by "lifting" paperback books, it was all the muscles could initially tolerate. So, careful, but you’ll definitely get there!

[Ski]

in reply to: How to Choose / Tapazole/Thyroidectomy/RAI #1063565

Hi John,

Just adding one quick comment ~ if you can keep your thyroid hormone levels maintained on a very low dose of methimazole, the risk of the most dangerous side effects goes WAY down. Typically most people can remain managed on some continuous (usually very, very small) dose ~ remission is another animal entirely, and it’s true, the numbers for true, successful remissions are in the 30% range, but remission is only defined as a period longer than one year with normal thyroid hormone levels and no medication/supplements to maintain them. There are definitely people who achieve a remission but do, eventually, relapse. Maybe we need to define use of ATDs in two populations ~ those who are going for initial (or subsequent) remission, and those who are managed longterm on small doses of ATDs.

In any event ~ one caveat on that. The risk of the most dangerous side effects is highest in the first few weeks of taking the medication. That risk is the same for every patient, in other words, if you have taken the medication in the past without experiencing the most dangerous side effects, you are still as much at risk during the first period of taking the meds as a brand new patient. So make sure your doctor is testing your total blood count and liver enzymes at the start of any treatment phase with meds. After those first few weeks have passed, again, the risks go way down. You would want to keep checking periodically (ask the doctor how often they recommend, and/or signs to look for), but the highest risk is at the initiation of treatment.

This can be a good treatment choice *while you choose,* since you aren’t making any permanent decisions for yourself. You can see how it works for you to manage your levels on ATDs, and if that doesn’t work, you’ll have had some more time to figure out which of the other choices are more comfortable for you. Single most important determinant of future patient happiness: patient making their own choice for treatment.

Our conference last weekend reiterated some of the RAI/eye findings, and once again it was confirmed that, if a patient felt at great risk for being a patient who may experience eye changes following RAI, a short course of prednisone, beginning at a certain dose and tapering down a certain amount until the dose is stopped completely, removes the risk of increased eye findings following RAI. There has been some evidence that RAI produces more patients who experience a worsening of TED symptoms, though the population is rather small. With your family history, you may want to be cautious by using steroids with RAI (yes, steroids come with their own side effect risks, so all must be discussed and balanced), or by choosing thyroidectomy. As said before, thyroidectomy, in the hands of an experienced surgeon (one who does somewhere around 50 such surgeries in a year, or more), carries very low risk of the complications you speak about. Ask any surgeon what their complication rate is ~ don’t believe zero, and don’t let them evade the question, but the number should be very, very low.

Definitely take advantage of the search function here, we’ve had lots and LOTS of discussion on this very topic!

Oh yes, and welcome. ” title=”Very Happy” />

[Ski]

in reply to: hair loss – any tips? #1063593

Mamabear wrote an EXTENSIVE post on this topic, here’s a link for you:
http://www.ngdf.org/phpBB3/ngdf/viewtopic.php?f=3&t=38718&sid=e06442857b8b4b39af4bb68409845694

The basic rules are these: don’t stress your hair, it just makes things worse. That means brushing hard, wearing hats, perming, coloring, anything that pulls on it or weakens it. Once your levels are STABLE, your hair loss should stop, but if your levels are fluctuating, even a little bit, even going from a disease state of hypo or hyper into the normal range, your body removes resources from the hair and nails in order to protect the rest of you while this emergency situation (fluctuating and/or out-of-balance thyroid hormone levels) continues.

Cutting it short can help in a number of ways. It requires less "fuss," and if you have more hair than usual coming out (we all have *some* coming out daily), when it’s shorter, it’s not so startling to see it off of your head. In addition, you can "fluff" shorter hair to create the illusion of more hair. Once the loss stops, you can grow it out again, and it’ll be healthier and look better than if you grow it now.

I hope that helps! I know it’s a tough emotional "hit," hair loss, and all I can say is that this too shall pass…. ” title=”Wink” />

[Ski]

in reply to: Diet Support #1063715

The issue is typically more about the fluctuations ~ it’s just as debilitating for us to have thyroid hormone levels continually "travelling" as it is to have a consistent hyper or hypo state. We need long term stability before we can start to really, truly feel normal.

[Ski]

in reply to: One month post op –checking in #1063609

Thanks so much, Ruby! It’s so good to know that you’re feeling better ~ and the detail you’ve given here is priceless to those who come after!

[Ski]

in reply to: Questions about Ted #1063678

It’s because your immune system has run a bit amok ~ in most of us, boosting our immune system protects us from things that are attacking us, by stimulating the antibodies that act on viruses and bacteria in our body. With us, our immune system has developed antibodies to our own tissue, so boosting the immune system increases that attack as well. I hope that makes sense.

[Ski]

in reply to: Questions about Ted #1063675

Hi Paula,

You’ll see by the discussions you find here that TED has the potential to occur in people without thyroid disease, it is not completely understood whether the antibodies are related, similar, or the same ones, but TED can and does occur in patients who have no thyroid imbalance or disease.

TED can include some of the severe symptoms you describe, but not for the majority of patients, which is the information I want you to come away with. Looking at pictures online of people who have the very worst symptoms of TED is likely to be frightening, and not at all helpful. MOST patients with TED end up with small changes that eventually revert, and for whatever issues remain, there are surgical options for correction that are getting better all the time.

The fact is that the way TED acts, we need to wait it out for some period of time ~ there isn’t much you can do while the disease is in its "active" or "hot" phase, other than prednisone (which you’re already using), and/or directed radiation (narrow beam to the eye sockets). Since TED is definitely an autoimmune condition (the antibodies attack the tissues behind the eyes, either muscle or fatty tissue or both, seems to depend somewhat on the age of the patient), then keeping your immune system "quiet" can have a profound effect on limiting your symptoms overall. This doesn’t mean that you need to "boost" your immune system, it’s actually just the opposite. If you "boost" your immune system, you throw all the antibodies in your system into "active" mode, which includes the antibodies that are attacking your own tissue. What I mean is that it’s good to keep yourself healthy, to the extent that you can, and limit violent reactions to stressful situations. You can’t avoid stress, it happens to everyone, but if you can do anything to keep your body more relaxed overall, you may be able to limit the action of the antibodies.

TED is emotionally draining, so keep that in mind and do what you can to minimize the effect on you. Use dark glasses (which are good for the symptoms as well), raise the head of your bed to minimize the swelling that can occur during the night, but also make sure you socialize, because the loneliness can almost be worse than the fact that you feel like you don’t "look right."

Typically TED operates like this: there is a "hot phase" that may last anywhere between 1-3 years (please do not panic). Smokers typically end up with the longest hot-phase duration. If you smoke, you can radically improve your course of disease by quitting, NOW. During the hot phase, changes are frequent, you may find that muscles swell and then "un-swell" (what would that word be?), different muscles at different times. It IS frustrating, I know, but it is what it is. If you experience double vision, prisms can help you, but keep in mind that during the hot phase, you may need them, then not need them, etc. etc., so I wouldn’t invest in anything permanent. There are stick-on prisms that would probably be more help if you end up needing them. Not all patients do. When you have transient double-vision issues, you can sometimes use a patch (alternating eyes) to relieve the feeling and get through your day.

After the hot phase, there is typically a period of stability, where there are no changes at all. I don’t believe I’ve seen a solid definition of that particular timeframe, probably weeks or maybe months.

After that, there is a short period of improvement, and following that is the ending "cold phase," in which no changes are observed for at least six months, I believe is the figure. Doctors diagnose the "cold phase" in hindsight, typically. While you’re going through this, you should be seeing an ophthalmologist, so you’ve got the right referral there, and you should probably see them monthly or bi-monthly, so they can evaluate the changes that are going on in your eyes. Once you’ve been conclusively diagnosed as having reached the cold phase, you can talk with the doctor about your surgical options, if any are necessary. Show your doctor a photo of your eyes "before" so they can truly evaluate how to get back there.

Surgery prior to the cold phase has the potential to activate the antibodies again, which would negate the effects of any surgery that is done, as well as limit your options once you reach the cold phase. They only do surgery early on in the process for patients who are in danger of having their optic nerve compressed, because that can take your vision. An easy test to see if that is happening to you is to look at a Coke can (we pick it because of the BRIGHT red color), separately with each eye. If either eye sees it as more "pink" than "red," get an emergency appointment with your ophthalmologist to talk about it.

I hope this helps, I know TED is no fun, but you will get through it. We’re having a conference next week in San Diego where you could get LOTS of information (and support) ~ if you can come, we’d love to have you!

[Ski]

in reply to: Does this sound like Graves to you? #1063654

And by the way, anyone reading these messages belongs in the "knows stuff" column, no matter what!! It’s complicated information, it may take you a while to understand it all, but the mere fact that you’ve gone through the process of looking for information means you are paying attention, and it will serve you well as you start getting better.

[Author]

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