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in reply to: Weight Loss Success Stories #1073029

I’m going to reply to this last message in a new thread ~ look for it on the main forum list under "Son just diagnosed".

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in reply to: RAI for a 10-year old girl? #1072949

It sounds as though, with your experience and her doctor’s advice, you’re getting all the best possible information. The only comment I would make is that it is an option to continue having her take that small dose of ATD in order to keep her levels in check, but you know that too. Successive remissions are less and less likely (a smaller percentage of patients achieve remission in the second and third tries), but long term ATDs are a choice you could make, if you were interested in that. I completely understand the desire to treat prior to onset of puberty, however, you could perhaps wait until the doctor returns from sabbatical (a year, you say?) so that your daughter could be monitored by someone you really trust after the treatment. She’d be 11, so that’d still be ahead of the adolescent hormones raging, I think.

If RAI is your ultimate decision, I would definitely agree with the doctor that an ablative dose is best, for many reasons.

Lastly, in one study, done years ago (and never repeated successfully, FYI), about 16% of RAI patients had a "temporary worsening" of eye symptoms (neither term was clearly defined), but the eye disease is extremely rare in young patients, so I’d be surprised if she were having symptoms at all. It’s possible that she could experience a short period of "gritty eyes," but it doesn’t happen to everyone. Mine lasted about 60-90 days, I don’t recall exactly, but it was over fairly quickly. The potential for the worsening is removed if the patient takes a short course of steroids, but of course those carry their own potentially serious side effects, so a doctor will usually only prescribe them if the eye disease is already severe.

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in reply to: Are normal levels always normal? #1072937

Good questions! I’m glad to hear that your doctor understands this critical element of our healing. It’s true, our personal normal can be anywhere within that normal range, and it’s important to our future health to find it. The process of finding it is a little bit time-consuming, but since you are within the normal range all that time, it’s tweaking levels that feel pretty good, until they feel GREAT, so it’s not like wild swings from high to low. At first, it’s smart to keep a symptom diary, to see if you can tell which side of your normal you might be on. Some of the symptoms of hypo and hyper are the same, so it can be helpful to see a range of symptoms in order to get some idea of how YOUR body "likes" this level. If you and your doctor come to some conclusion about where you may stand in relation to your normal, try changing your dose by one level in that direction. Then you need to take that dose for six weeks so your body fully adjusts to it and gives accurate results in a blood test. In the first couple of weeks after changing that dose, you might feel a little weird ~ meaning that one day you might feel as if you’re getting a little hyper, the next you might feel as if you’re getting a little hypo. That evens out within a couple of weeks, after that it’s just waiting to have your blood drawn. All the while, keep the symptom diary. Each possible adjustment, obviously, takes at least six weeks, so you can see how this ends up taking a good deal of time if you are at all far away from your normal. Starting from the middle, maybe you could say that it’ll be quicker for you than for some.

If you find that you are feeling "too high" at one dose, "too low" at the next below it, it is possible to take both doses, on alternate days, and end up with a blended blood level between the two. You wouldn’t feel "high" on the one day and "low" on the next by doing this. The hormone builds up in the bloodstream. They actually say that, technically, we could take seven pills once a week and end up feeling the same way, but it’s easier for people to remember once a day.

The easiest way to know YOUR personal normal is with old blood tests, before you were hyper, LONG before. Not everyone has them, but if you do, BONUS. ” title=”Very Happy” />

Good luck! Let us know how it’s going for you.

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in reply to: Eye Disease #1073082

You are SO welcome! I’m glad we’re here to help. ” title=”Very Happy” />

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in reply to: AAAAHHHHHH!!!!!! #1072964

If there are any teaching colleges near you, they often offer care as well. It is horrific that people anywhere have to go through this, in this country especially. Obama’s got the ball rolling, but it’s going to take a while to turn this ship around. There is a lot of resistance from the health insurance industry.

In the meantime, I’m not really sure where to send you, but I know it’s worth the effort to find someplace. You’d be surprised at the kind of compassion you can find in certain pockets of the health care system. I remember when my husband was injured in an accident, before he had health insurance, we went to get him an x-ray at a "public clinic," and as soon as the three of us walked in (the two of us and our infant son), the wheels started turning. By the time we left, I think they charged us $50 and waived the rest, and we hadn’t even asked. It really depends on who you’re talking to, I believe that. Keep at it, you will find someone. You’re not even asking for anything that complicated ~ a short appointment, a consultation, a prescription. I’m so sorry it’s been so difficult for you.

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in reply to: AAAAHHHHHH!!!!!! #1072958

It feels hopeless now, but you WILL get there. It’s worth the effort, and you will overcome. You’ve done so much already, don’t give up now!

By the way, remind any other receptionists you speak with that they are essentially practicing medicine without a license, by giving you the "final word" as to whether anyone there can help you. A general practitioner understands about thyroid hormone and can prescribe replacement hormone, even if they don’t understand all the intricacies of Graves’ Disease. Some doctors are good, flexible, understanding ~ some are not so good, and those come in all stripes (general practitioners, endos, any specialty). A GOOD doctor is more important than an endocrinologist. Actually, you MIGHT be able to get good, basic care from a registered nurse practitioner.

Do your blood test results prove that you are outside the normal range of thyroid hormone?

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in reply to: Should I stop this never-ending cycle with ATDs and do RAI? #1072976

Sometimes the fluctuating levels can be just as damaging as outright hyperthyroidism ~ when you’ve been battling this long, you may find yourself far closer to the choice of RAI than you ever thought you would.

First, as mentioned before, RAI has no effect on future fertility. To the extent that an imbalance of levels could make it difficult to conceive, that’s a possibility, but it is not due to the RAI itself. Many, many patients have continued to have many beautiful, healthy children after RAI. In addition to that, studies done on those children actually show a tiny bit LESS disease than other children. Tiny bit.

You do have the choice of surgery, whether or not your doctor would make that the first choice. The choice is YOURS, and it really ends up being what you’re most comfortable with. Either RAI or surgery will accomplish the same goal.

If you pursue RAI, my personal advice is to make sure you have an ablative dose ~ one that will completely destroy your thyroid. It makes the outcome far more similar to that of surgery, with less waiting time until you are headed back to normal levels.

Being hypo does not have to go on for long ~ if you are vigilant and have an open order for lab tests, you can catch it early and keep yourself from sinking very low. You’re wise to consider it as another source of depression, and you’re also wise to begin a course of antidepressants that may help you stay afloat until you hit (and stay at) a good, normal hormone level.

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in reply to: RAI for a 10-year old girl? #1072947

There is at least one parent posting here who has been through a similar circumstance ~ Amy’s son was diagnosed a few years ago, and they’ve been battling with his levels ever since. He is a little bit older than your daughter (in his teens now), but they recently made the decision to go ahead with RAI, and he was treated a couple of weeks ago. I’m sure she’ll be checking in and will respond.

This is one of those situations in which we find ourselves as parents occasionally, where it seems we have no choices we LIKE. You’ve obviously already been through a lot with this condition, and so has your daughter. RAI will not affect her future chances of getting cancer, will not affect her future fertility, if that helps. The doses we take, as GD patients, are about 1/10 what a thyroid cancer patient would get as treatment, and even that is considered therapeutic, not harmful in and of itself. Still, if you prefer, surgery IS an option you could pursue. Again, no GREAT choices for you. Still, getting your daughter closer to health is extremely important, and as you say, it’s a good idea to get this treatment behind her before puberty hits, because then you could be in for really dramatic highs/lows.

How are you feeling about this? Have you discussed the circumstances with your daughter, at a level she can understand?

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in reply to: RAI VS Surgery #1073041

Rhonda ~ I don’t know of any reason that surgery would affect your eyes. The only treatment that might affect your eyes would be RAI, and that happens rarely. Personally, I had about 90 days of "gritty eyes" that was uncomfortable, and perhaps a tiny bit of proptosis (which has since completely gone away).

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in reply to: Graves without medicine #1072994

The meds you were on could be exactly what you’re looking for, but you need to be far more involved in using them. The relationship between them and your thyroid hormone levels changes, at first, and you need to be patient through the swings to find a good dose that leaves your levels in a normal place. It can take a good deal of time. In a hyperthyroid state, patience is the last thing we’ve got, but facts are facts, and nothing is going to resolve quickly, no matter what you do. Putting the time into it will preserve your thyroid, and return you to health. Not taking the meds could be fatal. Untreated hyperthyroidism is extremely dangerous, and can potentially affect every body system.

If you want to keep your thyroid, that’s certainly an option, as long as you are vigilant about your levels, compliant with your medications, and you have no severe side effects from the ATDs (that’s methimazole or PTU). Many people end up on a very tiny dose that keeps their levels just right, but when you’ve gone very hyper, you need a lot at first. It is a bit art, a bit science. A doctor can’t say okay, at your height and weight, with these levels, presto, that’s your dose. They give it their best shot, and see how it works out. Adjust as necessary, see how that works. This goes on for some time, until you hit (and remain at) a normal level that works for you.

You should probably do a little research on RAI or surgery, just in case you ultimately need to take advantage of one or the other. We understand, no one wants to destroy a part of themselves. That’s a different question, if you are experiencing the very serious possible side effects from the ATDs. The most serious side effects of ATDs can be reversed, if caught in time, but if you can’t take that medication, the only other option there is for resolving the hyperthyroidism is to remove the thyroid. Your husband is right ~ your kids need a mother far more than you need a thyroid. If that day comes (it is not inevitable, but you need the face the possibility), the thyroid hormone replacement you take afterward is NOT a pharmaceutical drug in the way that you are thinking. It is chemically identical to the T4 thyroid hormone our thyroid would put out, if it existed, so it is not processed through the liver, does not leave toxins.

Your body is running like a race car with a brick on the gas pedal right now. It is extremely dangerous to keep on this way.

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in reply to: PTU #1073008

When your blood levels are within the normal range, that’s the best time to start back ~ slowly.

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in reply to: My Husband has Untreated Grave’s Disease #1072996

Oh dear, you’ve got an issue here, haven’t you?

Synthroid is NOT a medication, it is the thyroid hormone your husband’s body is no longer able to produce, because his thyroid was destroyed. Thyroid hormone is literally the fuel for every cell in the human body, and without it, your husband can, quite literally, run out of gas. It can be fatal to be hypothyroid over a long period of time.

Whatever symptoms he was having may have been due to taking a little too much, or a little too little, but he NEEDS that thyroid hormone in his bloodstream in order for everything to WORK. It may take a little while to get him back into normal ranges, even, at this point, and then you’ll need to work with his doctor to find HIS normal point (the range is quite large, and we need to find our personal best point within that range in order to feel our best).

Thyroid hormone replacement is chemically identical to the T4 thyroid hormone our body produces, so it is not processed through the liver like a pharmaceutical. If he’s stopped taking it because it may be "toxic," he’s got it all wrong.

Start by having his blood drawn and his thyroid hormone levels tested. Try to convince him at least to CHECK his levels. If his TSH is sky-high, he is hypothyroid. TSH has an inverse relationship to thyroid hormone (T4). When one is high, the other is low. If he needs to see the full thyroid panel in order to "believe," ask the doctor to test him for TSH and T4.

PLEASE let us know what we can do to help. This has to be extremely tough on you. We can e-mail him, if you’d like. Send me a private message if you’d like me to do that.

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in reply to: PTU #1073005

Lifting weights can be counterproductive when you’re still hyper as well ~ take it VERY easy. While the levels are out of range, the "destruct" mechanism for muscle mass is accelerated, the "rebuild" mechanism is suppressed. You can end up doing yourself serious harm weightlifting at the wrong time. Losing all that muscle mass can be extremely debilitating.

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in reply to: FTI or Free T4 #1073063

The uptake/scan is done in a radiology lab, so you’d just need a request for the test and then you’d schedule it with the lab. Your GP should be able to refer you, but you may want an endo to do it, just because they probably have established relationships with the labs.

If you’re looking for a picture of your blood test results going forward, it’s a good idea to have them done at the same lab, at the same time of day (generally, like morning, or evening), under the same conditions (i.e., haven’t eaten, or just eaten, just before your medication, or whatever). Having them done under similar circumstances will help with consistency, so it will help you figure this out.

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in reply to: Eye Disease #1073080

Remember, your body and your mind are dealing with a LOT right now. Not only TED, but potentially GD, and also the realization that you have begun on a path that you know is going to be difficult. In this interim period, you may want to investigate anti-depressants. The need for them declines over time, with GD, but they can be an enormous help in the early stages, while we sort things out physically and emotionally. They do take a little while to "kick in," and they can be somewhat personal, meaning that you may have to try a few before you get the relief you want without any other unnerving symptoms, but it’s worth looking for the relief if you feel unable to handle it yourself.

But the most important message is to forgive yourself. Forgive yourself for getting this. Forgive yourself for hating this. Forgive yourself for needing help and for not being able to "shrug it off." Just remember that you WILL get through it. We’ve all been over this bridge (or through this muck, whatever metaphor you’d like to use), and we’re proof that it gets better.

Oh, the crying may or may not be good for the moisture on your eyes ~ kind of like licking your lips doesn’t moisturize them when they’re chapped. I’d still use the artificial tears regularly, if I were you. Tears from strong emotion have different mineral content than "regular" tears, and I’m not sure whether that’s good or not.

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