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?

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!

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.

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

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!

Thanks Oberon for keeping us posted. It sounds like things are moving along well for you.

Good luck mvk.

I take my RAI/I-131 May 3rd. I was told by the doctor I may not have problems after with hyper feelings because I've been on Methimazole 20 months (has not been working right for me!); I was in pretty bad shape back in August 2010 yet never went on a beta blocker due to using an herb to control the heart rate (only because I had reactions to the Metoprolol). Well I told the nurse if my pulse starts going past 100 bpm resting when I come off of Methimazole 1 week prior to RAI, I'm calling about getting some beta blocker! I am not taking any chances and never want to feel a resting heart rate of 130 bpm like back in August 2010.

It is wonderful that we can support one another through this journey!

beach45