[Ski]

in reply to: Is it possible? #1075351

Well, if the pattern is small, focused locations where more iodine was taken up, then that can be "nodules," which (I think) are rarely malignant, and the treatment is much simpler with RAI ~ with nodules, they take up ALL the iodine and it destroys them, then healthy tissue is left behind.

[Ski]

in reply to: Is it possible? #1075349

Make sure you sit down with your doctor to go over the results of the uptake/scan. There are two elements to determining Graves’ with these tests, and both should be considered. There is, first, the amount of iodine taken up (a percentage), and second, the pattern of uptake. If the pattern is what they call "diffuse," meaning it’s spread evenly across the entire gland, that is a stronger indication of Graves’ Disease. If the pattern is specific, meaning it was taken up a lot in a few small areas, that would point to something else.

It IS possible to have a Graves’ diagnosis through an uptake/scan and have no symptoms or perceptible antibodies. The disease waxes and wanes, symptoms come and go, in some people for quite a while. If you do have it, but are asymptomatic, then the important thing is to know it’s there. You can keep an eye out for symptoms of the active disease and then you’ll know what to do. Meanwhile, you wouldn’t need any kind of treatment, if all of your levels are good and you have no symptoms. It’s a good time to do all your research, while you feel relatively well. That way, if you end up needing to pursue treatment, you’ll have an idea of what you want to do and (hopefully) getting well will be a shorter process.

[Ski]

in reply to: Metformin #1075356

As far as I know, Metformin has nothing to do with Graves’. From the way you tell the story, it sounds like that is aimed at the pre-diabetic state. More importantly, if your doctor has put you on medication and you are unclear as to why you are taking it, time for a frank discussion with either your doctor, your doctor’s nurse, or your pharmacist. Even basic information would help. Make sure to check and see if it may be affected by your thyroid hormone replacement, or vice versa.

If your TSH is too high, your doctor may have talked about changing your thyroid hormone replacement dose, did that happen too? TSH and T3/T4 have kind of a "seesaw" relationship ~ if everything is operating right, the pituitary gland "reads" the levels of T3/T4 and releases TSH in response. High levels of TSH are meant to travel to the thyroid and yell in its face "MAKE MORE!" You may want to get a copy of the blood test levels. It can help you keep it all clear.

[Ski]

in reply to: New to Graves and struggling with life… #1075359

Hi Jill,

Welcome ~ I know you didn’t want to join the club, but we’re glad you found us. ” title=”Very Happy” />

We’ve all been through it, reading your post brought it all back!! No fun at all.

The fact that your levels are dropping is a good thing, and the disappearing symptoms would indicate that you’re on the way to health. Now, about your hair ~ it does lose "support" because when your body is sick, the body withdraws resources from the hair and nails when it feels as if it needs those resources for more critical issues. Thyroid issues in particular trigger this response. It’s possible that your hair was simply weakening throughout everything up until now, and suddenly is coming out rapidly. It won’t leave you bald. Since your levels are improving, this should stop once your levels have arrived at AND STAYED AT normal levels for some time. Your body is literally under attack when you are hyperthyroid ~ thyroid hormone is the "fuel" for every cell ~ and the effects on your body are widespread. Once you reach normal thyroid hormone levels, your body can BEGIN to heal. It seems as if you’re getting there, so hang in and you may start to notice small improvements. The hair and nails are the last thing to return, so in the meantime you may want to find yourself a cute short haircut that minimizes your troubles. The advice is no coloring, no perms, no rough brushing or heat appliances, etc. etc. It WILL come back, I know it’s true.

Please, keep reading, keep asking questions! We’re here for you. Don’t give up on your dream of children. It may be a little while before you can try and expect success, but take it easy and don’t fret. Be kind to yourself now, please. It’s an assault. We don’t LOOK all that sick, but we feel AWFUL when we’re going through it like you are now.

All the best to you, and again, welcome.

[Ski]

in reply to: RAI dosage #1075409

I would discuss this with your doctor, because the uptake is pretty good information, but perhaps he has some other logic for figuring a dose. It’s worth a frank discussion. I skipped asking "what dose will I have and why," and I regretted it.

Unfortunately, NONE of our test results (not TSH, not T4 or T3, not uptake percentage) give us an accurate idea of "how sick we are." That is an unknown, better evaluated in hindsight.

Still, you’re probably not SO sick that you must rush. You have time to come to a complete understanding, at least.

[Ski]

in reply to: RAI dosage #1075407

I had RAI twice (please do not panic ~ I was an unusual case). The first time my endocrinologist did not have a discussion with the radiation/oncologist who formulated my dose. We had agreed that I wanted an ablative dose (I wanted to start from zero), and the dosing doctor had the feeling he could give me "just enough," so he gave me 10 millicuries. It was not enough. The second time I was given 22 millicuries.

Let me put this into perspective, and give you some of the mechanics of the RAI as well.

First, when you have a scan, the result is a percentage of the iodine that is taken up into the thyroid. When we are sickest, our thyroid takes up a LARGE percentage of iodine. So, at an 80% uptake, my initial effective dose was 8 millicuries (80% of the 10 millicuries in the dose). After one RAI, my thyroid was affected and had a much lower uptake ~ 25%, I think ~ so for the second RAI, I took 22 millicuries but only retained 5.5 millicuries in my thyroid.

Here’s what happens. We take the RAI, and most of it goes to our thyroid (thankfully, the only place in the body that iodine is taken in). It begins destroying thyroid cells. It does most of its work in 6 weeks, but can continue to destroy cells for up to six months.

The RAI that is NOT taken up into our thyroid leaves our body by fluid waste channels (mostly urine, also a tiny bit in sweat and saliva). Any of this "cast off" RAI ingested by another person would go to their thyroids and cause damage. Not much, but why risk it? As a result, we keep to ourselves for at least the first couple of days, as that "cast off" RAI is leaving our body. After 48 hours, that’s done. We are advised to drink LOTS of water and make sure we visit the toilet every hour or so, to limit any exposure within our bodies and flush out the excess ASAP.

Remember please that thyroid cancer patients can receive up to TWENTY TIMES the doses we get (yes, hundreds of millicuries), and even that dose of RAI is considered safe in the long term.

The dosing calculation is part art, part science. It is derived from your level of hyperthyroidism, your uptake, and other details. It is NOT an absolute. You may want to ensure that your endocrinologist and radiologist/oncologist have a discussion and AGREE upon the dose you need, it will probably eliminate at least a little of the uncertainty.

[Ski]

in reply to: I need some help making up my mind. #1075418

I just want to jump in with a quick comment ~ "getting rid of our thyroid" is kind of irrelevant, once we’ve got Graves’. At our most recent conference, our medical director showed slides of cells from a healthy thyroid vs. Graves’ thyroid. The gland is not normal ~ it is not just being affected by antibodies, it has literally been taken over.

We are able to achieve a remission with ATDs (well, some are), but the thyroid itself cannot be saved. Either the Graves’ antibodies will kill it prematurely, or we remove it ourselves with RAI or surgery. A successful remission can certainly put off the need for replacement thyroid hormone, but not forever.

I think the most important piece of advice you’ve received here is to weigh each option carefully, and choose the one YOU prefer. All have pros and cons. All can work. Choosing seems to help in our healing, perhaps because we have more information than we might have had without our own personal research, perhaps because by that point we understand that "it is what it is," and we get through it, rather than fighting against the feeling "why did they do this to me?"

We wish you all the best ~ please let us know how the process is going!

[Ski]

in reply to: Monitoring TSH after RAI #1075424

If I were you, I would want to have some confirmation sooner than 6 months, certainly. Maybe in a couple of months, or just split the difference and ask the doctor for a test at three months. The blood test isn’t all that expensive, and your health is too important to let it get away from you.

[Ski]

in reply to: Radioactive Iodine Treatment on Teenage Girls #1075614

Hi Tisha,

After the first couple of days have passed, your daughter will be able to attend school after RAI.

Believe me, if there were anything other than ATDs, RAI or surgery that would resolve hyperthyroidism, we would have ALL chosen it. Nothing reduces thyroid hormone levels other than these three treatments.

There are holistic treatments that can ease symptoms, but hyperthyroidism is the problem and must be resolved. In the days prior to these three treatments being available, fully 50% of Graves’ patients died from hyperthyroidism. It’s nothing to play with.

Your daughter is old enough to have a say ~ surgery is another valid option, and you would be perfectly welcome to choose that (unless there is some other risk factor for her undergoing surgery).

[Ski]

in reply to: thyroid illnesses and diet coke #1075434

Graves’ antibodies can come and go, and no one understands the reason behind that (yet). If you’ve got all the other symptoms, but a blood test for antibodies comes up negative, you can’t say "Aha, I don’t have it!" It would take more investigating to find out whether it’s truly Graves’ or not. And by the way, an extremely high percentage of hyperthyroidism is caused by Graves’ (I believe it’s near 90%). Sorry ’bout that.

[Ski]

in reply to: thyroid illnesses and diet coke #1075431

Hi Lynne,

As far as I know, there are no reputable studies to connect aspartame (NutraSweet) with any kind of diseases, though the suggestions are on the internet LIKE CRAZY. That said, I drank Diet Coke to the exclusion of any other drink for years (yes, I hate to admit it, years) before I was diagnosed with Graves’. It could have been the caffeine, or it could have been aspartame, or it could have been the exclusion of healthy drinks for all that time, but I think it may have served as some type of physical trigger, or perhaps it made me vulnerable.

Now, once you’ve got Graves’ ~ do you stop drinking the Diet Coke, or, if it has done damage, is the damage done already? Hard to say. There are no reputable studies that it causes specific harm, but what good does it do? Now that I don’t drink it any more, I can barely tolerate it, it’s like drinking a can of chemicals. It’s definitely better to be providing your body with some type of nutrient, or if not, just flushing it with plain water. I can’t see much good coming from sucking down a can full of stuff you can’t even pronounce. Just my two cents. ” title=”Very Happy” />

[Ski]

in reply to: Choosing Thyroidectomy on Purpose #1075734

Hi Helen ~ I’m copying your post to a new topic, I’ll call it "13 years later, now what?"
See ya there.

[Ski]

in reply to: Where can I get help if I don’t have any insurance? #1075459

If you have any teaching hospitals (attached to med schools) you may find some luck in having her treated there. For the most part, the initial phases of the eye disease are treated with "wait and see" technology (you can make the symptoms worse with things like surgical treatments), but it’d be good for her to at least have an initial consultation, because there are other treatments for keeping the inflammation to a minimum during what we call the "hot phase."

It may be worthwhile to call a local doctor’s office and see what they know about in terms of help for those without insurance. Besides aid organizations, some doctors may be willing to either work out a payment plan or waive part of their fees.

[Ski]

in reply to: Post-RAI – when do I start feeling better? #1075558

Hi Kallikat,

I’m glad you’re having some luck in figuring out what’s up ~ I know it’s frustrating when everyone thinks they know just what you need. My gut feeling is to say no to the protein shake ~ your son means well, but he’s presuming that your body is "just like everyone else’s", and that is just not so. There are all kinds of strange chemical reactions going on in your body, and until those are set right, you are going to feel as if you’re pedaling uphill for a while.

As far as a support group, it’s GREAT that you’re feeling motivated to begin such a thing! Send a private message to Nancy Patterson and she can probably help you with some ideas. One thing to note, though ~ typically we don’t recommend that you start/host a support group until you are feeling well. It has the potential to turn into just one more thing you don’t have time or energy for, and active Graves’ patients (you may have noticed) are VERY impatient!! ” title=”Very Happy” /> The likelihood is that it’ll take a little while to ramp up anyway, but I wanted to throw that out there for your consideration.

[Ski]

in reply to: Hashimoto’s Thyroiditis or Mental breakdown? #1075464

Sorry, I don’t know a site offhand for Hashimoto’s ~ just make sure you see some "medical seals" on the main site you look at. Wikipedia can actually be a good jumping off point, they’ll have lots of links and references to look at.

I wish them luck, this sounds like a real nightmare.

[Author]

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