[cometmozart88]

#1019825

Hello,
My name is Melissa and i was very surprised tonight to find out that such a board existed. I am 20 years old, and am in my 8th year of having graves disease. I am most certainly on the lower age scale of people who get diagnosed. Happy to announce that i am finally going in for my RAI treatment very shortly. I have the some of the more common symptoms of Graves, I have a good doctor and have been on monthly, Bi-Monthly blood tests since i was diagnosed. Its a thing you have to live with everyday and get use to. But i am thankful every morning that i am not disabled, or have cancer or something more sever than what i have been given. There is life after being diagnosed and i wish all of you members who are new to the disease safe travels and easy goings. There is always light at the end of the tunnel.
Have a wonderful week everyone, you will be in my thoughts!
Melissa

[DianneW]

#1074306

Hi Melissa,

Eight years is a long time to have Graves’ Disease for someone who is only twenty! Yes, you’re definitely on the lower end, though we know others as young as you are. What treatments have you had so far?

You sound like your attitude about this is wonderful. If you have questions about the RAI there are many of us here who have done it.

Best wishes

[cometmozart88]

#1074307

I have been on methimazole since i was diagnosed. I don’t know why its taken so long to do RAI but it will be happening soon. My doctor had failed to call me last month when i was supposed to have it done to tell me that my levels were off, so now i am currently taking 5mg tablets two in the morning and two at night. My dosage for this medication has always been more than one. So when i was looking at this board i found it interesting to see that some people only take one, i guess it depends on the severity. My specialist told me to expect to become hypo in 10 years. According to him its easier to treat. As for the RAI itself i am not too nervous. I haven’t really heard a lot of bad things that can happen to you by doing it apart from hypo. If anyone wants to share an experiance with RAI that was not the most positive i would be interesting in hearing that too. Its better to be over informed than under.
Have a wonderful day
Melissa

[DianneW]

#1074308

Melissa, when people have difficulty following RAI it generally has to do with difficulty stabilizing thyroid levels, and there are a number of reasons that can happen. Also, sometimes following RAI a person can temporarily become even more hyperthyroid because the damaged thyroid gland "dumps" stored thyroid hormone. Usually when that happens it’s only for a couple of weeks, give or take.

It’s also not possible for our doctors to determine ahead of time how a particular thyroid gland will respond to a given dose of radioactive iodine, so in spite of best efforts, a certain percentage of the time the given dose will fail to correct the hyperthyroidism and it will be necessary to give a second dose. Rarely even a third dose is necessary. This can be frustrating for the patient, needless to say.

That said, it can take anywhere from approximately a month, to six months or more (if you have multiple treatments) to control hyperthyroidism, with the usual time being around 2-3 months. Once hypothyroidism is achieved, thyroid replacement hormone should be initiated. At that point many patients begin to feel better in a week or so; however, the amount of damage the thyroid has sustained and its need for hormone doesn’t always stabilize right away, so in some cases the thyroid may decline in function further quite rapidly in that first year or so, making it difficult to adjust to the right amount of replacement hormone. The amount of time this takes varies for each person, and depends on factors only some of which are in the doctor’s control. When the levels don’t change much, the patient has a relatively easy time. When the levels keep changing, the patient can be uncomfortable.

Once thyroid levels are stabilized it can still take time to recover from the time spent with abnormal thyroid levels, but most people begin the journey of feeling well again.

A lot depends on having a doctor who is diligent about managing thyroid levels, and as a patient you can help yourself by being proactive and knowing that you don’t necessarily have to wait until a scheduled appointment time to have thyroid levels checked whenever you think that there has been a shift in your thyroid status. This is not to say that there are times when we really need to be patient and wait the full six weeks (or however long your doctor recommends) between tests to give a change in replacement dose a chance to work. But when there’s a drastic shift in status, such as when we in all likelihood have become hypothyroid after RAI, we shouldn’t have to wait until the next scheduled appointment for a blood test. I’ve never been refused when I simply walked in to the doctor’s office and told them I felt unwell and wanted a test done.

Once you get beyond the phase of adjusting thyroid hormone, all you have to do is remember to take your replacement hormone faithfully. The hardest thing for me at first was remembering whether or not I had taken it, so I had to get a pill box, and I could tell by whether or not it was gone from the box. Otherwise I remembered that I walked into the bathroom to take it, but did I or didn’t I?

I wish you the best with your treatment.

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