[Ski]

in reply to: Help Please.. #1075581

Hi Pixie,

You definitely need medical attention ~ please, regardless of the cost, go see a doctor. Hopefully one you already trust. Untreated hyperthyroidism is extremely dangerous, if that’s what’s going on. Your symptoms would imply hyperthyroidism, but I’m unsure about where you stand right now ~ you say that you had RAI, and you went moderately hypo. Does that mean you are currently taking thyroid hormone replacement? If so, the problem could be as easy as lowering your dose. If you are not taking thyroid hormone replacement, then you could be right, and your RAI may have destroyed enough tissue to regulate you for a while, but now the remaining tissue may be affected so severely by the antibodies that you’ve gone hyperthyroid again. This doesn’t fix itself. You need someone to treat you, one way or another. Whether it’s meds, another RAI, or surgery, you need to get your levels into the normal range before there is permanent damage to your body. Your three kids need you, and they need you healthy.

Please let us know how things are going with you.

[Ski]

in reply to: Calcium and thyroid #1075584

Hi Cathy,

My understanding is that the minerals (calcium) should be taken at least a couple of hours separate from the thyroid hormone, but definitely check with the pharmacist to be sure. It’d be good to have one mammoth meeting with the pharmacist about everything you take. Just list everything and take copious notes. ” title=”Very Happy” />

[Ski]

in reply to: Just Diagnosed #1075589

Hi Tiffany,

Welcome, we’re glad you found us! And I’m glad you finally got a diagnosis ~ that’s half the battle.

Graves’ thyroid disease and Thyroid Eye Disease are two different elements of Graves’ ~ treating one does nothing for the other. So whatever you do for your thyroid, you will have a separate treatment plan (with an opthalmologist) for your eye issues.

The most common "disease curve" for the eye disease lasts about a year. It typically begins with changes that come on rather rapidly (puffiness of the tissues around the eyes, and/or increase in fat beneath the eyes, and/or bulging of the eyes), then there’s a period where changes stop happening, then a period where symptoms improve, and finally a completely stable phase. There is only a small percentage of patients who have the very worst symptoms of the eye disease, so if you’re looking online and seeing scary pictures, try not to panic (I know that’s not easy). If you are a smoker, typically the disease curve is longer (up to three years), and the symptoms are worse.

There are things you can do to make yourself more comfortable while your eyes are "having their day." Raise the head of your bed to minimize fluid collecting in your eyes overnight and exacerbating your symptoms (we put 4×4 pieces under the head of the bedframe), use artificial tears liberally (NOT "get-the-red-out" drops), minimize your exposure to wind and bright light (use sunglasses that are only marginally tinted for indoors, for instance, and use wraparound sunglasses for outside), use baby shampoo to wash your face (less irritation), wear less makeup, things like that. The opthalmologist should be able to give you some ideas there too.

Once you reach the stable phase, spontaneous small improvements are still possible. My eyes were never really bad, but they did change, and people noticed. I am now 10 years past my first symptoms, and my eyes are almost back to where I started ~ to the point that I think people who never saw me during the "bad part" might not notice any change at all. Some of the most recent changes happened just in the past few years. Unfortunately, there’s no way to tell how your eyes will be ~ the odds are in your favor, so try and focus on that. (Focus!?! Am I trying to be funny? ” title=”Cool” /> No, it just comes out that way…. ” title=”Very Happy” />)

I’m sure this isn’t everything I could possibly say ~ do a search in these posts and the archives, you’ll find a WEALTH of information and anecdotal advice.

Welcome, and come back often, ask all the questions you may have!

[Ski]

in reply to: swimming after RAI #1075596

Well, this topic has never come up, so my advice would be to ask your doctor to be absolutely certain. My GUESS (uneducated as it is) would be that swimming presents no danger to her or anyone else after RAI.

I’ll tell you one thing I know for sure. She’s got one terrific Mom. ” title=”Very Happy” />

[Ski]

in reply to: Hyperthyroidism vs. Graves #1075664

Hi again Lynne,

These are good questions ~ you know, until you’ve got a confirmation that this is Graves’, it’s kind of hard to say, but if the eye symptoms you are experiencing are related to Thyroid Eye Disease (the eye disease that comes along with Graves’ thyroid disease), then you really need an opthalmologist (rather than an optometrist). It’s important that you see someone with the necessary training to deal with this, so you may want to make some phone calls to make sure you are seeing someone with experience treating TED specifically.

Some patients have bulging eyes, and if they come out far enough, sometimes the eyelids won’t close all the way, or they’ll "creep up" when you’re sleeping. The numbers vary, depending on the amount of bulging, the size of your eyelids to begin with, etc. If you don’t live with anyone who can check while you sleep, then the one test I’ve heard is to look in the mirror just after you wake up. If there is a red line of any kind across either eye, then probably that part of your eye is exposed while you sleep.

Funny how dismissive doctors can be ~ they’re not going through it, are they? As my Dad used to say, they always let you know that after a procedure you will experience "temporary, mild discomfort." Really. ” title=”Very Happy” />

[Ski]

in reply to: Attitude #1075601

Hi Jeff,

Good advice from Tracy ~ it’s true, our reactions are chemical, not emotional, before we are fully healed. I’m sure your wife is just as frustrated as you are. Try to just support her, help her with anything you can, and leave her space when she needs it. Help her have some time to herself ~ some time FOR herself ~ you’ll find that pays big dividends for both of you. I don’t want to be clumsy about this, but try to avoid making suggestions. I don’t know your precise relationship dynamics, but I do know that typically, people who care about others would like to help, and Graves’ patients are not actually very receptive to such suggestions. It’s a minefield, and until we are healthy, we might even think that some of our feelings have substance ~ it’s kind of like everything is amplified. I can tell when my levels climb toward hyperthyroid because what I call "the voices" start ~ not like third party voices talking in my head, but each little thing someone does triggers an "examination" in my head (why did they do that? why didn’t they just do what I asked? don’t they care about me? don’t I count?), and things that I could otherwise shrug off start to penetrate and really bug me.

I think it’s unreasonable to think that there will be no difficulties between you during this time, but if both of you can keep some perspective, I think you can get through it. Come back often, and send your wife to ask any questions she may have, we’ve all been there! ” title=”Very Happy” />

[Ski]

in reply to: Hyperthyroidism vs. Graves #1075662

Hi Lynne,

Sorry to hear about your eye symptoms ~ ask your family doctor for a referral to a good ophthalmologist. More than likely, the treatment will be "wait and see," but it’s good to get a baseline and have someone tracking your progress, just in case. Since you say you have trouble in the middle of the night, I feel that I should ask ~ are you sure your eyes are closing completely when you sleep? If not, that can cause serious damage. There are things you can do to cover your eyes during sleep, and the ophthalmologist can help you through that as well. In addition, there is an overnight eye gel you can use to give your eyes a good dose of moisture while you sleep. It’s tough to see through, so you want to make that the very last thing you do before bed, but the eye dryness can lead to corneal damage, which is irreversible and can risk your eyesight, so it’s critical to handle the dryness effectively.

I hope you get to the root of your thyroid issue soon ~ it’s so frustrating not knowing!

[Ski]

in reply to: Radioactive Iodine Treatment on Teenage Girls #1075608

Hi Sally,

The only issue with the reproductive system (for women) is that the RAI not taken up by the thyroid is, for the most part, excreted in urine. While that is in her bladder, it is near the ovaries, and doctors typically tell us to wait at least six cycles (six months) after RAI in order to attempt pregnancy, to ensure that any eggs maturing at the time of the RAI have left her system. Immature eggs are not affected. Beyond that, there are no future issues in terms of reproductive ability from the RAI.

RAI has been in use for more than 50 years, and there are no statistics of higher incidence of any disease in the children of RAI patients.

Graves’ could affect her ability to have children later in her life, but only through a mismanagement of her thyroid hormone levels (meaning her replacement hormone is either insufficient or given in excess). That’s the best reason to make sure her levels are right FOR HER, once she is on thyroid hormone replacement. Some doctors will say that once you are within the normal ranges, you can stop worrying, but it’s simply not so. The range of normal is HUGE, and it is huge because people feel normal at many different points along that range. Our OWN normal is what we’re looking for. If you are lucky enough to have test results for thyroid hormone levels prior to her diagnosis, that’s one of the best ways to find it. Otherwise, you need a smart, compassionate doctor who will work with her to find it.

If the PTU works for her, and keeps her levels stable, there may be no need to contemplate RAI just now. Also, remember that surgery is an option if you (or she) have an uncomfortable "gut reaction" to RAI. Statistics aside, I know we all have our own biases, and we have other good choices, so why not take advantage?

Remember that remaining hyperthyroid is the most dangerous option. Anything that can helps her get to normal levels is a good thing.

If you choose to go ahead with RAI, typically it’s pretty anticlimactic. She would probably have a short period without the PTU (since it would block the RAI from getting into her thyroid), then she would have an uptake/scan to help determine the right dose of RAI (that’s a two-day test, she would take a non-damaging form of RAI ~ different isotope than the treatment version ~ and return for a nuclear scan the following day to see how much has been taken up). They would determine an RAI dose, make an appointment, then she would come in and take the pill (or swallow the liquid ~ it comes in both forms). For the first couple of days she would need to be somewhat isolated. As our body takes up the RAI, it also (as I mentioned earlier) excretes the RAI that was NOT taken up, and it is excreted mostly in urine, but also somewhat in saliva and sweat. If someone else were to come into contact with that tiny amount, it could conceivably cause damage in the other person’s thyroid, so typically we are told to eat from disposable plates, with disposable utensils, for the first two or three days. The patient should not be preparing food for others during that time. In addition, there is an element of exposure risk from the RAI that IS in the thyroid, so she would need to avoid cuddling pets near her neck, or holding babies, for a period of time. That time period is derived from her dose. The RAI isotope has a half life of 8 days, so every 8 days, it is reduced by half. After you go through enough 8-day periods, the amount is inconsequential. I was told to think of distance and time ~ if I was going to be with someone for a long time (many hours), I should keep my distance (a few feet, at least). If I was going to hold someone close, I should make it short.

The RAI does most of its work in the first six weeks, but it can continue to work on the thyroid for up to six months. During (and after) that period of time, everyone needs to be vigilant. Once you see four or five routine hypothyroid symptoms occurring regularly, have her blood tested. When her levels fall into the hypothyroid range, the doctor will decide upon an initial dose of thyroid hormone replacement, and then the search is on for the PERFECT dose.

I hope this helps!

[Ski]

in reply to: Remission? #1075619

Hi Jane,

Typically, if ATDs are going to trigger a remission, it takes them much longer than a month and a half.

The Graves’ antibodies attack and ultimately cause the thyroid to fail prematurely in all Graves’ patients. It’s possible that you have been suffering so long that your thyroid is completely dead already, but that is a pretty long shot. It’s more likely that you’re seeing a fluctuating in your antibodies, which throws everything out of whack. Unfortunately, we don’t have any information on WHY the antibodies fluctuate, but they go up & down, and that can make your symptoms accelerate and disappear randomly. Stay in close touch with the doctor. I’m glad you have a standing order for lab tests, that can head off all kinds of trouble.

Of course you don’t want to start replacement thyroid hormone until it is determined that you absolutely need it, so the "wait and see" for now makes sense. If you are hypothyroid for a significant period of time, then taking synthroid would not make you hyper again, taking the right amount would make you normal (rather than hypo). Finding the right amount for any of our thyroid meds is tricky, so take on patience as your best friend.

[Ski]

in reply to: Atrial Fibrillation and Graves #1075627

Since it comes from being hyperthyroid, the only way it will come back is if you’re hyperthyroid (well, that’s the only way it will come back that is associated with Graves’). ” title=”Very Happy” />

I don’t remember how long it lasted for me, seemed like forever, definitely wasn’t. ” title=”Wink” /> The beta blockers were very effective at handling it for me. Remember that you cannot go "cold turkey" from beta blockers, because then you can experience a "surge" in the symptoms it was controlling.

[Ski]

in reply to: Atrial Fibrillation and Graves #1075625

Hi there,

Welcome! Actually, a month on the meds isn’t as long as you think ~ it can take up to six weeks for all of the excess thyroid hormone to be processed out of your bloodstream, so you’re still in the VERY early stages of your treatment. I had pretty bad a-fib too, and it was controlled well by the beta blockers, and went away entirely not long after my levels came down significantly. Remember, for whatever period of time you have been hyperthyroid, your body has literally been under attack, every single cell. Once your levels are normal, your body can BEGIN to heal. Think of it as a hurricane. The wind has died down, there’s no more rain or storm surge, but things are definitely not "normal." Much work must be done before you can truly use that word.

I hope that helps!

[Ski]

in reply to: Hyperthyroidism vs. Graves #1075658

Hi again Lynne,

It is true that the ATDs have a relatively low rate of success for the first try at remission, and after one success, if GD raises its ugly head again, the chances are even slimmer for a second remission. HOWEVER, any percentage above zero indicates that it is successful for someone. If you’re that someone, well then it worked 100% for you, didn’t it? The possibility of liver damage does exist, but from what I understand, if it’s going to occur in its worst form, it will happen right away, so patients are usually checked early on in the process for liver enzymes, and you would have to stop taking the meds if they were damaging your liver. (There is a second argument for liver damage when they are taken long term — for years and years — because our livers have less capacity to process foreign substances as we age, plus of course there’s a cumulative effect from taking it for years and years. That’s different.) The lowered white blood cell count is also a possibility, and it can be rather frightening if it does occur. I’ve seen doctors who were completely scared off of using them at all from seeing a patient with that particular side effect. It does give a warning sign (high fever, sore throat), and if you are tested quickly and the effect is discovered, you can easily reverse the condition by discontinuing the med. Those are definitely concerns, however they are yours to evaluate for yourself. The real difficulty is that, while you are hyperthyroid, everything speeds up ~ it’s hard to concentrate, it’s hard to evaluate ~ so the meds can be used to bring your thyroid hormone levels into the normal range so you can begin to heal your body and clear your head. The ATDs actually DO reduce thyroid hormone levels. It can be a moving target, since the antibodies rise & fall for no good reason, and that will affect your thyroid hormone production. Beta blockers are used only to mask symptoms, and to protect your heart during the most difficult times.

Still, the bottom line is that your thyroid will fail early from Graves’, so you need to come to grips with the fact that you will likely, at some point, need to take thyroid hormone replacement. It’s kind of your choice as to when, and how. Fluctuating levels are just as damaging as continuous high or low levels, so you could continue your symptoms much longer than necessary, if you’re always chasing that number rather than simply getting to it. And, to be fair, some people who just decide to be "done with it" and have RAI or surgery still have trouble finding their normal level. The one constant about Graves’ is that it is never "one size fits all," to quote our medical advisor. So, almost more important than your choice of treatment is your choice of physician. You need someone who will help you with your treatment, not decide for you what should happen next.

I am sorry you’re feeling badly ~ your attitude is a good one, that will help!

[Ski]

in reply to: Hyperthyroidism vs. Graves #1075655

Hi again Lynne,

It is rather mystifying to hear that a doctor would proclaim "no Graves" because your eyes are not bulging. Perhaps it’s a matter of semantics. Some doctors only use the term Graves’ Disease to refer to the eye disease, when actually that is just one symptom group in the "syndrome" of Graves’ (syndrome being the newest way to refer to Graves’). You’re right, not everyone who has Graves’ Thyroid Disease has the eye disease symptoms (we typically refer to it as Thyroid Eye Disease, because it can be connected to at least one other thyroid disease, Hashimoto’s), so that should not rule out Graves’. If you feel comfortable with your family doc, there’s a high probability you can be successfully treated with him. You may have to learn together, with some of the details, but a doctor who is willing to learn is a treasure.

We aren’t allowed to judge your test results, for many reasons. Different labs have different "normal" numbers, and different countries use different measures, so it’s impossible for us to know exactly what’s up with your tests. If you have a copy of the test results, you should be able to see whether your T4 and T3 actually do fall within the normal range at your lab. The TSH seems suppressed, that’s a very low number for any lab. Basically, T4 is thyroid hormone in your bloodstream, T3 is the active thyroid hormone (your body makes it from the T4 when needed), and TSH is Thyroid Stimulating Hormone, sent from the pituitary gland in response to the thyroid hormone levels it perceives. If the TSH is very very low, it senses too much thyroid hormone in your bloodstream and is trying NOT to stimulate the thyroid to release any more. If the TSH is very very high, it senses too little thyroid hormone in your bloodstream and it is trying to tell your thyroid to release lots more. Think of them like a teeter-totter, if one is high the other ought to be low.

As for an initial RAI recommendation for a person who does not feel very sick and has few symptoms, good instincts on your part!! There’s no reason you shouldn’t be able to use meds to bring your levels into the normal range and then look more closely at what’s going on.

As far as exercise goes, I’m not up on the technical terms, but our muscles are constantly being torn down and rebuilt, that’s what makes the strength. When we are hyperthyroid, the tearing down is accelerated, and the rebuilding is suppressed, so when we exercise vigorously, we accelerate even further the tearing down, and since the rebuilding is suppressed, we just lose MORE muscle mass than if we were not exercising. In addition, our heart is a muscle, so exercise would do the same thing to the heart, which could be truly dangerous.

Just ask your doctor what they would recommend in terms of exercise. Typically, while hyperthyroid, almost everything is discouraged. You can do gentle stretches to keep muscle tone, but you don’t want to risk more damage. Your body is working VERY hard, being hyperthyroid. It’s like putting a brick on the gas pedal in your car. You can probably still walk the dogs, but you might need to shorten the walks a bit.

It’s a good idea to get a book ~ we have some recommended books on the main website, they are full of terrific, basic info.

Keep asking questions! ” title=”Very Happy” />

[Ski]

in reply to: Choosing Thyroidectomy on Purpose #1075726

About the second autoimmune disease ~ those of us with one autoimmune disease have a higher likelihood of getting another, sadly. At our San Diego conference, we were told that recently a "genetic defect" has been identified that is found within EVERY autoimmune disease patient. Having the defect does not guarantee that a person will get an autoimmune disease, but everyone with an autoimmune disease has the defect, which is very interesting. The research continues. ” title=”Very Happy” />

[Ski]

in reply to: Daughter just diagnosed #1075677

Hi Janet,

Wow, three years old. She’s lucky to have you "at bat" for her.

We had a conference a few weeks ago, and one of the sessions was a "Q&A with the doctors" over lunch. There was a specific question about pediatric patients, and our medical advisor said that he would not recommend RAI for children ~ I think he drew the line as old as 18, before it would be a treatment of first choice. This wasn’t based on past experiences, or statistics on treatment, because there are really very few pediatric Graves’ patients. It was just a "cautious" approach, as radiation exposure is a cumulative, lifetime thing. The dose we’re given is fairly small, empirically speaking (cancer patients get 20 times as much), but the exposure risk just isn’t well documented in people who have so many years ahead of them.

The meds may not have a high percentage of success, but if you’re within that percentage, great! It IS possible, or there’d be a zero percent success rate. Of course, another consideration is that a three year old is going to be tough to corral and ensure steady compliance with taking the meds ~ one of the ATDs needs to be taken three times a day, I believe. The other can be taken once a day. Truly, I don’t know if either is preferred or restricted for children. I don’t think so, I think you have the choice of either (PTU has to be taken multiple times throughout the day, methimazole can be taken just once).

The decision belongs to you. Don’t let anyone bully you into something that you are uncomfortable with.

This is going to be a tough road for all of you. I would suggest that you try to have a conversation with your daughter, at her level of comprehension, to help her understand that this is not like a cold she’ll get over in a few days, or weeks, it’s something you will be managing all of her life, at some level. It gets easier with time and treatment, certainly, but levels still need to be maintained, and thyroid hormone levels can change throughout her life for many reasons ~ age, activity level, hormonal changes (puberty, pregnancy, menopause) ~ so it will be something that she’ll need to have "on her radar" always. Reassure her that you’ll be there, I know that will help. Tell her you understand that it may cause some behavioral changes, and that if she can help you to understand how she’s feeling, you can help her through those as well.

One of our classic symptoms is what we call "Graves’ rage" ~ when I felt it, it was truly uncontrollable, I’d be dealing with something fairly well and suddenly I would just blow up. Naturally, a three-year-old is a bit "unconscious" when it comes to her feelings and motivations, so this is a topic to explore gently, but she may still be able to tell the difference over time, which will also help you.

I’m so glad you found us. Good luck, come back and ask any questions you may have!

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