[knitlit]

#1019606

I was diagnosed w/graves mid Feb 09. I posted in a previous post my free T4 (results 2.82 ref range 0.58-1.64) and TSH Receptor Antibody (results 25 ref range 0-9). (TSH was .02)

I had the Thyroid RA Uptake test on Feb 23rd. which was a 2 day thing.

Uptake: after 4 hours 41% (normal 4 hr range is 4-20%)
after 24 hours 58% (normal 24 hr range is 8-32%)

The good news No nodules of sufficient size to detect. No hyperfunctioning "hot" or "cold" nodules revealed.

I haven’t had severe symptoms of Graves: Left eye mildly protruding. Am having intermittent high BP and pretty consistent high resting pulse. BP this first Endo visit was 126/80 pulse 82. I am noticing more frequent bm’s especially in the afternoon and evenings. I sleep good, but DH has woken me lately when he notices that my heart/pulse racing while sleeping. One time he could feel it even through several layers of blankets. I do notice that my heart is beating in a weird rhythm at times also. Overall, I have been feeling well.

Oh, I found out that I do have a slight goiter this past week. This is a recent development. January during the initial physical w/my internal medicine person (before the blood level results were available) there was no sign of goiter, February follow-up exam, still no obvious goiter.

The uptake test results didn’t mention goiter, but maybe the uptake test itself precipitated the goiter growth?

I had my first Endo appointment, he was pleasant, and even made the comment that I was thinking through all of this, "So, you were feeling fine until you went to the Dr." He had asked how the GD diagnosis came about. The Endo took over an hour w/me answering my questions, going over the results. He did an exam, including a reflex test on the inner part of my forearm. (haven’t had that done before) examined my abdominal area, ankles, heart/lungs. Had me swallow, observed the slight goiter. Did an eye movement exam.

His first recommendation for me was RAI.
I voiced my concerns and questioned about the advisability since I do have slight TED.
I had assumed that antithyroid meds would be the first option in treatment. To the Endo’s credit he listened, saying we could go that route, but in his experience the end result would be the RAI, even if I did the Antithyroid meds. Antithyroid meds would essentially put me into the hypo zone the same as would RAI, there is the affects of Antithyroid meds also, and that I was a good candidate for RAI because I haven’t been on ATP. Also, he countered that even though I felt good, this was deceptive.

He demonstrated his goals for me visually. Hyper at the top of the range, the number falling gradually after RAI, smaller dose of thryroid hormone at first, as I fall below the normal range, w/larger doses needed as my levels fall to keep me in the normal range, as they do after about 6 months. The goal being to adjust and keep me in a normal range.

I can see the logic in his reasoning. I forgot to ask if part of his determining factor is my age, 51.

What is proposed: RAI Ablation of 15 mCi of I-131. 1-2 days after the RAI start taking Methimazole 10mg- 2 tablets (20 mg’s total) daily until he sees me April 29th. He also put me on the beta blocker Atenolol 25 mg one or two a day for BP pulse control.

The RAI has been scheduled for this Friday. It was my decision after hearing him out, but I am concerned about whether I am taking a drastic step considering my mild symptoms, and the fact that I feel good now, am in a healthy weight range for my age and body frame, have a very good cholesterol and blood sugar numbers and don’t want to be yucky and have the affects of the treatment be worse than the actual disease so to speak.

I did call nuclear medicine for info on how the RAI will affect my work schedule and family/pet contact and for how long. I was able to talk to the technician that will be doing the RAI, he was very patient and pleasant, and actually offered the opinion that this procedure is a good option for me, giving me more info than what the Endo on what RAI after process is. I also voiced my eye concerns to the technician, his opinion was the same as the Endo’s, likely no eye problems, and that the RAI I am going to be given is pretty mild by standards. He also volunteered that my Endo’s method of prescribing Methimazole after RAI a good treatment strategy. I felt better after this conversation.

Since agreeing to do the RAI a few days ago (Friday) I seem to be getting more anxious as each day gets closer to the RAI appointment. I am going to call my Ophthalmologist tomorrow, I feel that I need to talk w/her, getting her opinion before I go through the RAI planned for Friday. I really need to know that I am doing the right thing or am I just obsessing over research that doesn’t pertain to me, may be out of date, or anecdotal?

Thanks for letting me vent.

[DianneW]

#1072829

What your endo recommended is not unusual advice for a patient of any age. It seems to be common for endocrinologists in the U.S. not to be optimistic about the chances of remission on antithyroid drugs (ATDs), which statistically run around 25-30% long-term. They also consider the fact that regardless of treatment method, many patients will eventually become hypothyroid.

We recommend that patients having a permanent treatment (surgery or RAI) are certain they feel like they’ve had time to become fully informed about all three treatment options and feel 100% confident the choice won’t be regretted. If you read this board you’ll see that a number of patients regret having chosen RAI too soon. I’m one of those who had RAI without having a chance to talk to others first, and now wish I’d tried ATDs. Like you, I had mild hyperthyroidism.

I believe statistics show that patients with mild hyperthyroidism are more likely to have a sustained remission, not that this should be a determining factor for anyone, since people are individuals, not numbers.

What surprises me about your doctor’s advice is his saying that ATD treatment would make you hypothyroid. The goal should be to make you euthyroid (normal thyroid levels). While occasionally in the course of ATD treatment the patient does become slightly hypothyroid due to over-treatment, a vigilant doctor will correct this as soon as possible. If you do change your mind and decide to try this, have a good discussion with him on this subject and if you’re not comfortable, I hope you’ll get a second opinion. It’s important for the eyes not to have uncorrected hypothyroidism.

It’s still not a problem to choose RAI if you try ATD treatment and for any reason decide you’d prefer to take the RAI after all.

RAI can worsen the eye disease in about 15% of patients, usually temporarily. The immune system reacts to the damaged thyroid cells and the antibodies associated with Graves’ Disease and TED raise temporarily. Presumably this is the reason. Taking a corticosteroid drug such as Prednisone for a period of time determined by your doctor will protect against all worsening of eye disease, but since it can have serious side effects, your doctor may decide it’s not worth the risk.

If you’re not completely sure the RAI is what you want to do, I suggest you postpone it and try ATD treatment. You’re welcome to hang out here with us and learn more from real people who have tried all three choices. All your options will still be open. Most people are eventually happy with their treatment choice when it’s one they made fully informed. I’m sure you will be too.

Best wishes,

[csm]

#1072830

Hi i’m new at this. But about 6 months ago i found out i have Graves disease and I have been taking methimazole. At first i felt better than I have in years. But now as time has gone on I feel pretty bad. Most of my symptoms are coming back and now I wish I had just done the RAI treatment. On my next appt I’m going to ask the endo to just go ahead with the RAI. I’m not sure if they can do it now that I’ve been taking the methimazole. My worst symptom is having periods every thirteen days. I went to the gyn, had everything checked and the gyn found nothing wrong with my female organs. I can’t keep on like this. Also I’m starting to have anxiety attacks at the grocery store. I had one last Sat. Does anyone know if I’ve already been taking methimazole can they go ahead and do the RAI?

[DianneW]

#1072831

Yes, they can still do the RAI when you’ve been on methimazole.

You should be aware that RAI is not usually a quick fix. Depending on the dose you’re given, it can take from six weeks to 3 months (or possibly longer) to bring down your hyperthyroidism. If you then become hypothyroid, your levels may continue to drop for at least another 6-12 months, so you could have thyroid levels that continually change. If this happens you may not feel very well yet until your levels do stabilize. Some people stabilize sooner than others do. It’s impossible to predict how any patient will respond to a given dose of RAI or how soon the thyroid levels will stabilize. If it’s a short process, the patient will probably be happy. If not, there may be regrets for a time.

You can choose to have the RAI or to find out if your doctor can help you determine why you aren’t feeling better while on methimazole or if a dose adjustment would help you more rapidly than changing treatment choices at this point.

I hope you feel better soon, either way.

[knitlit]

#1072832

Diane, thank you for your response.

I think the dr. meant that both options take your thyroid levels down and therefore can make you feel the same way? Maybe I misspoke. He said he would go the ATP route if I insisted, he obviously felt that RAI was the best option, so after talking w/him agreed to the RAI.

I have been reading library e-resources (magazine journal articles), Mary Shomon’s "Living w/Graves disease", as well as lurking on these boards. I tend to analyze the heck out of the pros and cons of things, researching & researching, of course focusing on the negative experiences. I guess like anything, you hear the bad but not the good.

I did call and talk to my Ophthalmologist today. I told her my dilemma. She asked who my Endo was, then reassured me to feel confident in whatever treatment course he recommends, that I was in very good hands, to trust his recommendations. This made me feel better. I see her in August again, unless I start having further eye problems. So, looks my decision will be to go ahead, take the bull by the horns, I will do the RAI.

Having a medical issue is a new & scary thing to deal with, since I have been very healthy. I will be definitely visiting frequently. I’m sure I will have lots more questions as this process goes along. I am not normally neurotic, I’m an upbeat glass is half-full kind of gal. I’m pretty pragmatic once I know the score and then do what needs to be done. This diagnosis has thrown me for a loop.

Thanks again for the valuable info and insight this board brings to those of us in the throes of anxiety, it really helps.

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