[beach45]

#1058987

I am scheduled for Radioactive Iodine Treatment for Graves Disease the first week of May 2012. I have been on Methimazole, antithyroid drug, since first week September 2010. The Methimazole has not put me into remission and my doctor suggested the Radioactive Iodine or Thyroid Surgery and I decided on Radioactive Iodine Treatment.

When this started back in 2010, my resting pulse was never under 100 bpm and frequently resting pulse at 120-130 bpm. Methimazole has gotten my pulse under control as I am currently on 5 mg of Methimazole and I have a pulse rate in the low to mid 80s in the last 2 months (in the 70s previously on 10 mg per day). I am starting to shake as my numbers are going toward hyperthyroid yet my endocrinologist does not want me on a beta blocker right now as he is happy with my pulse rate. I understand that.

Yet I will be going off of Methimazole one week prior to Radioactive Iodine Treatment. My endocrinologist also said that the chance of palpitations and hyperactivity or risk of thyroid storm post Radioactive Iodine Treatment is minimized due to my being on Methimazole for so long pre-RAI. I have high cholesterol which got worse on this medication which the LDL is 198. My HDL and Triglycerides are excellent though. No high blood pressure either; do not smoke or drink. I am currently not on a statin as higher cholesterol runs in my family even the thinner relatives and my mother’s total cholesterol has been over 300 for years and no statin, no major health problems and she is 86 years old. I do believe though I need to seriously think of going on one though myself as I am in my 50s. My endocrinologist is concerned about possibility of having a stroke if not controlled.

My endocrinologist is 1-1/2 hours away. I told his nurse over the phone that if my pulse starts shooting up to over 100 bpm once I’m off of the Methimazole for that week pre-RAI, that I will call. This does not seem unreasonable does it? I would feel better if I had a beta blocker in my hand now in case post RAI I had a racing heart as I never want to experience what I did back in 2010 as my heart was skipping also that summer pre-antithyroid drugs.

This is also my 3rd endocrinologist and the 2nd one I really liked left my area so I did bring all my history to my current endocrinologist and I re-emphasized to the nurse how bad my shaking and heart rate was back in 2010. I guess I’m just fearful of having a storm post RAI because I know that things get stirred up (antibodies) a little bit until they settle! (?). Yet this endocrinologist reassured me that things should be okay being on antithyroid drugs for so long pre-RAI; plus I never took a beta blocker at the start of this Graves journey as I used a herb at the guidance of a holistic nurse practitioner yet I am willing to try another as initally Metoprolol did not agree with me. I hestitate to bother my doctor as he did not offer me a beta blocker to start once we decided on the RAI as treatment for my Graves.

Maybe I am overworrying? I do appreciate any input on this issue in advance. Thank you.

[Bobbi]

#1171387

Well, I do empathize with you. It isn’t pleasant to go hyper again. It’s such an awful feeling. But going off the meds for a week helps to make the thyroid cells more “thirsty” for iodine, and increases the likelihood that the RAI will get taken into the thyroid rather than dissoved in the body’s fluids and excreted without being able to do it’s job.

I do hope you are feeling much better, and soon.

[doxnem]

#1171388

I did not have any break through symptoms after I had RAI. I was on a combination of anti-thyroid meds and lorazepam from the time of diagnosis to RAI which was approximately 12 weeks. The anti-thyroid meds had an adverse effect on my liver and I believe my storms were severe enough to warrant the fast turn-around to receive RAI. My doc had me hold onto the Lorazepam just in case, but I had no break through symptoms after my body settled from the RAI.

I understand why you are anxious about this. It is very difficult to get past the anxiety after you have experienced your body being taken over by these symptoms. I cannot of course guarantee that you will have the same results immediately post RAI, but hopefully you’ll feel a bit more at ease knowing a little more about what I experienced.

[beach45]

#1171389

Bobbi, thank you for that explanation as it does make a lot of sense why my endocrinologist wants me off of the Methimazole 1 week prior to RAI. I appreciate your comments!

Doxnem, thank you for your experience. It gives me relief. I know we are all different yet even my internist who I consulted with today reassured me that it will all work out just fine. He is working with my endocrinologist as my endocrinologist is 1-1/2 hours south of me at a Medical University and my internist is right here in town near the hospital I will be taking the RAI/I-131 May 3rd. The endocrinologist did say that getting to that balance may be uncomfortable and for some worse than others yet once I get to that point where I get on hormone, my internist said especially I’ll be over this up and down I’ve been on for 20 months with Methimazole. Sometimes I was going to being so hypo or so hyper that I just felt like I was out of control! My endo said that some do very well on Methimazole as I’m not one of them; and he is an endo who believes working with the Methimazole first, giving it a try for a while if tolerated. Plus my internist will give me a beta blocker if necessary pre or post RAI if I go over 100 bpm consistently. I really appreciate your comments as I think this anticipation is worse than anything!

[gatorgirly]

#1171390

I think your endocrinologist chose the perfect word: uncomfortable. That’s how I felt when I had to stop the PTU before RAI. I think I was off it for two weeks, but I’m not entirely sure. My boyfriend noticed it before I really did – he commented that I looked visibly more thin than in recent days. He was right. While that was music to my ears, I knew it was temporary and not the good kind of weight loss. The rest of the symptoms were uncomfortable – minor tremors, fatigue, and palpitations and tachycardia. Nothing major and not anything like how I felt before diagnosis (I was so sick leading up to my diagnosis that I dropped almost 20 pounds and my resting heart rate was close to 200 for two days straight).

Unfortunately, I’ve never been able to come off the beta blockers. We don’t know if it’s thyroid-related or just a coincidence but I’ve been steady on Synthroid since August 2011 and yet my heart rate refuses to come down on its own. Tachycardia runs in my family so that’s probably all it is, but I definitely needed an extra beta blocker every day for about three weeks after RAI. I’ve been on 10mg propranolol daily since then.

You’re probably also psyching yourself out a bit. I certainly did. Look at it as a weekend to yourself with no commitments, instead of focusing on how you might feel off the ATDs at first.

[beach45]

#1171391

Gatorgirly…thanks for sharing your experience! I already gained a lot 20 months on Methimazole and only slowly now dropping weight since I’m going hyper again. When this all started in 2010, I lost weight like crazy which was scary. I have those tremors, fatigue, not palps yet insomnia being on just 5 mg of Methimazole and I just am concerned being off of it for 1 week yet I guess it will go fast. My endocrinologist is not concerned that my heart rate will go crazy post RAI as he said being on Methimazole 20 months I should not have any major problems; yet both his nurse and my internist told me to call immediately if I have problems with rapid pulse/palps pre or post RAI.

I know a woman who had RAI a few years back and never came off of the beta blocker; on a low dose Metoprolol. When she stormed her heart rate was 200 bpm resting and rushed to the hospital. Even after RAI she had to stay on the beta blocker. Yet she is doing really well now.

You are right I am probably psyching myself out. I have a nurse practitioner who I consult with on the phone from up north where I came from and she told me be positive and do not get worked up. Yes it will be one good thing to just hang out in a separate room for a couple of days and maybe relax if that will be at all possible! Again, thanks for sharing!

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