[Bobbi]

#1171101

Perhaps some factual information about I131 will help, Oberon. Keep in mind that the precautions you will get have to do with preventing other people from receiving UNNECESSARY radiation exposure. That does not mean that the exposure is harmful to them all by itself. But radiation exposure is cumulative throughout our live span. Today’s RAI has to be added to yesterday’s layabout on the beach, added to the chest xray three years ago, added to last month’s dental xray, added to your vacation on an airplane, etc. etc. etc. Avoiding unnecessary exposure is wise. The dental technician is required to leave the room before the xray is taken for precisely the same reason. The dental xray dose is miniscule, but over time (and he/she gives many dental xrays) it could add up to a problematic amount and make him/her sick.

First of all, it is very soluble in water. Any RAI that does not get taken into your thyroid cells will be eliminated from your body via urine, sweat and saliva within approximately 48 hours. (Double check me on this, because I couldn’t find it in my notes, so your own nuclear med doc can tell you more precisely.) This explains the precautions that you get about double flushing of the toilet, using disposable eating utensils, and double bagging that trash, etc. (Although I was never told to double bag.)

Second, it has a half life of 8.1 days. Radioactive materials have their “life span” measured in half-life terms. After approximately 5 half lives the material is considered essentially gone because so little of it will remain. Some radioactive substances have half-lives measured in thousands of years. So a half-life of 8.1 days is really short. Not the shortest, but really short. So, what that means is that after 8.1 days, half of the dose that made it in to your thyroid (or trash) is left. After 16.2 days, one quarter of the dose is still left. After 24.3 days, one-eighth, and so on. For Graves patients the dose is relatively small to begin with compared with thyroid cancer patients. And yet the long-term studies of its impact on our health (long-term health) have shown it to be reasonably safe, even for thyroid cancer patients.

And, if you need to travel on a plane, you might get a letter from your doctor about the RAI. I have heard — online, which is not necessarily the best source of factual information — of people needing such a note if they are travelling relatively shortly after their RAI treatment. It might be totally unnecessary, but having a note would hlep to eliminate any TSA hassle.

[Julie3588]

#1171102

I flew about 4-5 weeks after having my RAI treatment and didn’t encounter any problems. The radiologist told me that I should be fine but gave me a note and a phone number to call in case I set off any detectors. The radiologist also told me to contact them if I did run into any problems since the radiation detectors are fairly new and they were trying to gather stats on what dosages set them off.

[ElisaK]

#1171103

Hi everyone! Glad to read through some of these posts! I am a 30 yr old female also having some distress with trying to make an informed decision about the best treatment method for my condition. I was diagnosed with Graves’ Disease a couple of months ago after a visit to the ER with a bpm of around 140 and shaking like a leaf, teeth chattering. I was initially told by the physicians assistant who discovered I was hyperthyroid not to worry because it would be a “quick fix”. Today I sit here and I’m just not really sure what she meant by that. The more I find out about my treatment options the more frightened I become.

After being discharged from the hospital the next day I was put on 10mg of Propranolol (every 6 hours) to keep my pulse down. I have mild asthma (seasonal or activity induced) and was told by a pharmacist that the ventilin inhaler I use might not be effective while on Propranolol? (one more factor to consider). Shortly thereafter I saw an endocrinologist who layed out 3 treatment options, all of which scared the ever loving crap out of me. I’ve always been sensitive to drugs and external factors (allergens) and radioactive iodine or surgery sounded much too harsh. So I would have to either brave the side effects and possible liver damage of anti-thyroid drugs or live with being hypothyroid post RAI and take hormone supplements for the rest of my life? Not thrilled to have to make that choice. Here would you like to eat this rotten banana or would you rather snack on this wormy apple?

After a thyroid uptake test confirmed I had Graves’ Disease my endocrinologist, (despite his enthusiastic push for RAI), agreed I would start taking Methimazole (15mg) once a day. He said he was starting me on a higher dosage to see more quickly if the drug was working (after I told him I’ve always been ultra sensitive to drugs).

After about 3 wks on the Methimazole I started to break out in a mystery rash mostly behind my ears, back of my neck, shoulders, and chest. The bumpy red rash disappeared and reappeared throughout the day and was itching like crazy by nighttime. I was also having some heart palpitations (possibly stress related). So I went in to see a doctor who said it was probably a reaction to the Methimazole. She called my Endo who told me to stop taking the medication and make an appointment to see him. With my insurance close to running out I reluctantly agreed and made the appointment. He checked my reflexes, had me drink water while he watched my neck, took my vitals, peeked at my skin, then told me the rash “could be” due to the Methimazole and advised me against taking the alternative ATD (PTU) because of the possibility of serious liver damage which is in his opinion “not worth the risk”. He proceeded to tell me my only options were to start me back on the Methimazole (lesser dosage of 5mg) after and if the rash cleared (in about a week) or to go ahead with RAI (again leaning towards the RAI). I decided to wait out the rash and try Methimazole again.

I’ve cut out caffeine from my diet (really hard as I love green tea), started eating healthier, reduced my sodium intake and I am still taking Propranolol but it’s been two weeks of research and I haven’t had the courage to start back on the Methimazole yet. I’m just plain scared. The rash is gone but my skin is still itchy in places. Anyone else have experience with a rash while on Methimazole and being put on a lower dosage successfully? Is there less of a risk of allergic reaction at a lower dosage? Should I have a baseline test done on my liver function etc before I start back on the Methimazole? I’ve been reading books about natural treatment solutions for hyperthyroid sometimes working hand in hand with conventional medication improving your chances of getting your thyroid back in balance – has anyone tried lifestyle changes and drug therapy? Right now this all feels so hopeless…

[Oberon]

#1171104

Spoke with nuclear med doc again and even mentioned the guidelines I was referred to and he still says only 24 hours away from small children. I asked about pets and sleeping alone. He still says no extra steps needed. My Endo said the same thing. They give me the impression this is no big deal.

I go for RAI tomorrow if I have the courage. I believe I will get 20 mcu. Still a little apprehensive, but getting tired of not exercising to keep my heart rate down. I am not a candidate for methimazole due to WBC. I fly in 2 and 3/4 weeks. That should be fun. This will be my first rough encounter with the TSA.

If my symptoms are not severe, is it possible to wait this thing out? I mean will my symptoms get worse if I do nothing? I have been told by two doctors that my thyroid will eventually give out due to Graves anyway. Has anyone tried waiting it out? Is it possible to get another blood test and find your levels are improving?

Oberon

[snelsen]

#1171105

If you waited to let your thyroid burn out, you could really destroy your health. Or die.
If you have been told that by docs, as them what they mean, and if they recommend that to patients. I suppose if you want to do that, you could discuss it with the docs, you would need to be watched very carefully, with lots of labs and reports on how you are doing. I really don’t know at all, but discuss it thoroughly.. Not sure what you mean. To continue on ATd’s or just do nothing because your symptoms are mild? Definitely doc question and consultation. probably with a 2nd opinion.
Shirley

[Bobbi]

#1171106

Oberon: telling you that your thyroid will eventually die off undoubtedly did NOT mean that you could wait it out. Yes, your symptoms are mild right now. You are so fortunate. They won’t stay that way. As hyperthyroid continues we become weaker and weaker. Muscles waste away. Keep in mind that the heart is a muscle. We lose bone. Permanently. Throughout the years, I’ve corresponded here with people who were permanently damaged by being hyperthyroid too long. Usually, they went undiagnosed. Sometimes they ignored the diagnosis. But nothing good came of it, either way.

[Bobbi]

#1171107

ElisaK: Yes, the propanolol is definitely a hazard to the treatment of asthma or other types of extreme allergic conditions. It interferes with the chemicals that are in the inhalers, or in the epi-pens etc. making them less effective. That does not necessarily mean that you cannot take the propanolol, but you should talk with your doctors about the situation. I have occasional (rare) asthma issues, and my allergist was OK with me taking a small dose of the propanolol. But if your asthma is significant, it might not be OK. Talk with your doctor, please.

You MUST treat the hyperthyroidism with one of the two main known effective options: either the methimazole, or removal of the thyroid. There are no alternative treatments that have been demonstrated to give us back our health. Some folks do use alternatives ALONG WITH a standard treatment to try to help, but only with the knowledge and approval of the doctor is that OK, because some things can interfere. (For example, I overheard a student in an oriental medicine clinic suggesting a huge dose of iodine as a treatment for Graves. My endo — when I checked that with her — was appalled. Apparently, the results of such a “treatment” are totally unpredictable, and often result in rampaging hyper symptoms.)

I know that you would much rather that this whole episode in your life would disappear, but it won’t. I will supply a “glass half full” perspective for you — which is real. Our treatments work to make us healthy again. Not all of us can safely do the drugs; not all of us can safely do RAI; not all of us can safely do surgery. But out of the three options, typically one of them will work well for us, and we DO regain our health, if we do not let hyperthyroidism drag out for too long.

Sending hugs,

[gatorgirly]

#1171108

Despite what your doctors told you, I would play it safe around pets and people. As others have mentioned here, we limit our exposure to others after RAI because the radiation we’re exposed to over a lifetime builds up. I would never put anyone at risk, especially something as helpless as a pet. If adults in your life don’t care about their personal risk, by all means ignore the precautions. My boyfriend at the time refused to leave me alone during that 72-hour period and I accepted his stubbornness, but I made sure to send my dog to the sitter for a long weekend and take Friday and Monday off from work – and I only received 10 mCi. We’ve since broken up and I have never been able to rid myself of the thought that he might one day develop cancer because of his stupidity over a girl at 26. Had my parents been in the state during this, they probably would have also ignored the precautions to make sure I was OK, but I wouldn’t have let anyone near me without them fully understanding their risk. Bobbi was the one to tell me back then that I didn’t need to send my dog away for the weekend, but he is a cuddler so I felt it best in the long run.

[Oberon]

#1171109

Thanks everyone. I dropped the dog off at her boarding joint. Planned for two days. Thanks, gator girly. I then drove to the hospital for my RAI. It has been two hours. So far just weird feelings in my neck. Before taking the magic pill, I spoke with a different nuclear med doctor that told me what I have been reading here. I have the luxury of working at home this week so I will spare my co-workers the extra radiation. He said I should be good to be around people by Monday. I am getting some jolly ranchers for the saliva gland thing. Any other tips for the immediate aftermath?

I could not sleep last night thinking about intentionally killing my thyroid. At the dog park this morning I told myself to just get it over with.

I can’t wait to eat seafood again. I have three days to go.

I am a little panicky about the airport scene I will have in a few weeks. I live in Southern California so I should assume a major airport like mine has a detector. I just hope the guns are not drawn when I get surrounded. Hopefully I will make my flight. I plan to have the letter out and be waving it. Does anyone know if the radiation detectors will sound an audible alarm with a flashing red light or will this be something I will not know about initially and then have a man in a black suit tap me on the shoulder and say, “Come with me, ma’m.”?

I have a very old cat with a hyperthyroid so she will be my only creature comfort for the next few days. My thoughts are all over the place. Probably a little hyper now.

Thanks again for the support. I’ll keep everyone posted – good or bad.

[Bobbi]

#1171110

I don’t know if you were warned, Oberon, but approximately one week after RAI we become more hyper than ever as damaged thyroid cells start dumping their stored supplies of thyroid hormone into the body. This is not thyroid “storm.” In storm, the thyroid cells are manufacturing new hormone. After RAI the cells are simply releasing already made hormone into the body, and are not making new hormone. Anyway, it doesn’t last for many days, but it can be a bit scarey if you are not anticipating it.

[Oberon]

#1171111

Thanks, Bobbi. I will be on the lookout for it. So far so good. I have been eating a lot of hard candies for my salivary glands. Does anyone know how long I need to keep that up?

[etleon05]

#1171112

Hi everyone,

I’m also new to Graves, though I’ve had the symptoms for some time but it never showed on my blood. Is that possible?

I was only recently diagnosed, FINALLY!! I was trying to find out what was wrong with my body for almost over a year. I’ve been on Methimazole 15mg (1x a day) and I got to a good point with my levels but the levels of my last two tests where from mild to higher or as my doctor says “toxic”.

TSH 0.01
T4, FREE 2.6
T4, TOTAL 14.6
T3 UPTAKE 40
T4, FREE CALCULATED 5.8
T3, TOTAL 283
T3, FREE 8.9

Not sure what all of those mean – to be honest. I’ve only been taking Methimazol for about 4 months and because my levels got higher, she is recommending RAI and that I have “no choice” – does this not seem to severe??? She also recommended, a 3 week leave of absence from work and be a “couch potato”. I’ve only been on the mends for only 4 months!?!? I did skip my meds for a day or 2 not realizing what this can do to me. Can the high levels be all a cause of me skipping my meds? I had several panic attacks last Thursday and Friday my heart at rest got as high as 130bpm. I’m honestly a little lost, I think she is to the extreme or is it me? Maybe I still can’t grasp my head around how severe Graves’ can be. I’m a high energy level person and I’m always on the move and love to work out and now I have to learn how to slow down. I really think I should go for a second opinion? Or does she seem reasonable considering all said? Well not “all”.

Any advice or words would be highly appreciated.

Thanks!

[Bobbi]

#1171113

Hi, etleon05, and welcome to our board.

The numbers themselves don’t tell you much. Each lab has a standard of normal that can be different from other labs. So you need to look at your own results where the lab posts it’s own range of “normal” values and indicates whether or not your values are out of range, and if so whether they are high or low.
So, it is helpful to get copies of your lab results, so that you can watch what is going on. Interpretting them, though, requires a doctor.

What the various items are on the lab report:

T3 and T4 are two thyroid hormones. Actually, T4 is sometimes considered a “pro-hormone” because it must be converted into T3 for the cells in the body to be able to use it. Thyroid hormone molecules are either “free” or bound up — tied onto — other molecules in the blood. It is the level of free hormone that is available to the cells, so when we are newly diagnosed, free levels of the two hormones are checked. Later on in treatment these tests typically are not done. All your doctor meant by having “toxic” levels of the hormones is that they are making you ill. Obviously, right?

TSH is Thyroid Stimulating Hormone, and it comes from the pituitary gland. The endocrine system has a series of checks and balances that regulate the levels of our various hormones. In the case of the thyroid, the pituitary gland acts as a type of thermostat. If the pituitary detects too high a level of thyroid hormone, it LOWERS its production of TSH; if it detects too low a level of thyroid hormone, it raises its production of TSH. The TSH test in labs can detect miniscule amounts of it, so it is used as the predominant gauge of our thyroid levels. If you look at your lab report, you may see that the report sometimes says that TSH is “<" 0.01. That "less than" sign means that the lab's ability to detect TSH -- AT ALL -- is gone. That's typically a sign that our thyroid levels are hugely out of whack high. Skipping meds is not something you should do from here on out. At all. No matter what med you are on. I realize that it takes some mental adjustments and especially if we start to feel well, the tendency is to think the meds have “fixed” us, and we don’t need them any more, or to forget the need for them. Conversely, if we start to feel “off” and blame the med, the tendency will be to “tinker” with the dose. Try to get into a routine as to when you take them. We have to be completely consistent with our taking of the meds for the test results to be accurate. And it is only if they are accurate that the doctor has the right information on which to make a treatment decision. That said, I don’t know if missing two days makes a huge difference. That would be something to ask the doctor. As to whether or not you should get a second opinion. That is always an option.
But your doctor’s advice about slowing down, taking care of yourself is important to heed. Right now, your levels are out of whack, and they are making your body ill. They can cause life-threatening heart issues. If your doctor says “slow down until we get this under control,” please pay attention.

[Oberon]

#1171114

72+ hours after RAI. I still feel fine. Had moments of hyper feeling but still on same dose of propranolol. The dog is home, but I am still limiting time.
I had a very severe flash of nausea last evening, but it went away. I thought the nausea was more of an immediate side effect.
No sore throat and I have had no salivary gland swelling so far. I guess thanks to the many hard candies. Finally a necessity to eat candy.

Oberon

[mvk]

#1171115

Hi Oberon,

Thank you for letting us know how you are feeling post RAI. I am having my dose tomorrow morning and it is encouraging to hear you are feeling pretty good after yours. I am anxious. These days I can’t distinguish whether it’s the disease process or me! If you feel up to it please keep telling us how you are doing and I will do the same.

Best Wishes!

[Author]

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