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To take the Radioactive Iodine uptake or just stay on medication (Methimazole)?

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Thyroid Disorders
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Robbie Baguio
New Member
Joined : May 2014
Posts : 7
Posted 5/15/2014 5:48 PM (GMT -6)
Hi! New member here and in need of your help, personal experiences, and opinion. Ive been diagnosed with hyperthyroidism for 3 years now and have been taking medication (methimazole) since my diagnosis. I chose the medication path because my endocrinologist told me at the start that there's a chance it my cure my disorder permanently.

A week ago, I visited my endocrinologist and the blood work came back as still overactive. She said by now I should consider having the Radioactive iodine uptake to finally cure this disorder and be on medication (artifical thyroid hormones) to maintain my thyroid hormone level, for the rest of my life.

Now I have been all over the internet and read people's personal experiences after they had the radioactive iodine uptake and some of them said they felt different personality wise. Some said they've gotten slower in terms of reflexes and pace in daily life. I know it is kinda irrelevant but to me it matters a lot because I ride Sportsbikes and go fast on the road. Im 25 years old and enjoy outdoor activities. It will greatly affect me if ever its true.

Im thinking twice about doing this but then again they said that if I continue taking Methimazole, it will eventually have bad effects on my liver. I really need your help guys. Any input will be greatly appreciated. Thank you so much!
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jujub
Elite Member
Joined : Mar 2003
Posts : 10422
Posted 5/15/2014 6:50 PM (GMT -6)
I had the RAI treatment 20 years ago and I've been happy with it. Any slowing down I did was because my system wasn't over-revved by hyperthyroidism. (Pre-treatment resting pulse was 120, treatment put in back to its normal level in the low 60's.) I take one tablet a day for my thyroid and I haven't had to even think about it for 19 years.
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Robbie Baguio
New Member
Joined : May 2014
Posts : 7
Posted 5/15/2014 7:38 PM (GMT -6)
Wow thank you for such a quick reply! Did you notice any change personality/emotionally wise? Ive read that some people became less anxious. Also, what happened to your symptoms such as tremors, fatigue, etc? Ive always had tremors when exerting force especially on the hands(the propanolol helped a bit though). I also feel weaker in strength and endurance. Im 5'11 and 180 lbs male and I should be stronger than what I am right now. I go to the gym at least once to thrice a week and honestly there's too slow of a progress when it comes to muscle building. It is embarrassing sometimes.
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jujub
Elite Member
Joined : Mar 2003
Posts : 10422
Posted 5/16/2014 5:52 AM (GMT -6)
Anxiety, irritability can be symptoms of hyperthyroidism, so yes, anxiety often decreases when the thyroid is adequately treated. Ditto with the tremors. I had elevated heart rate, heat intolerance, rapid muscle exhaustion with exercise, insomnia, tremors and severe irritability. I also had "dumping syndrome" - after a large meal, particularly if I drank any alcohol, I would feel faint, cold, sweat so badly that my clothes would be soaked, and then would often throw up. That was when I stopped drinking at all. I also had two or three less severe episodes a month where I would get nauseated in the evening and have very bad diarrhea for about three hours, followed by very forceful vomiting. All of those symptoms went away within weeks of treatment.

Obviously, the medication is not getting you back to a normal thyroid balance and you still have symptoms. Along with making you feel bad, this is wearing out your organs more quickly than is normal.

I had a good sports medicine doc tell me once that when we're born our hearts have a built-in range of beats. Once they're used up, you start having heart problems or you can die from heart failure. So if your heart rate is increased drastically, you will have a shorter life. I have no idea if that's completely true, but it does sound logical.

If you check out the "Thyroid Basics" discussion at the top of this page, there are links to some good information about hyperthyroidism. That might be helpful to you always.
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Robbie Baguio
New Member
Joined : May 2014
Posts : 7
Posted 5/16/2014 12:01 PM (GMT -6)
Sounds like you had a very severe case. Im glad you were able to overcome it. My symptoms werent as bad compared to yours. It sucks not being able to perform 100% because of our condition. I cant jog more than a mile without fast walking because I get tired easily and my heart beats like a machine gun which is scary. Moreover, I took up Nursing degree for 3 years and didnt really like it primarily because of my tremors making it hard to do injections. So I had to change career and went for Radiologic Technology. I work now as an Xray tech and I know alot about radiation sciences. As a result, my fear of it is not as much compared to most people, which is why I chose RAI over thyroidectomy.

The medication was able to control my thyroid hormone levels though. Since my diagnosis and medication, it was playing in the average level here and there. Sometimes we had to increase dosage when it was going back up, and then decrease again when it was going below the average. So it required constant monitoring every 6 months. Its just recently that it went up again and Im now on a 3 year mark, which means Im past the chance of my thyroid being treated back to normal via medication. I am faced to do RAI or surgery from now on as it wouldnt be healthy for my liver if I continue medication.

Thank you for your help Judy. I will now schedule my RAI today and hope for the best. I will keep you posted. Probably will have the uptake in a few weeks' time.
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jujub
Elite Member
Joined : Mar 2003
Posts : 10422
Posted 5/16/2014 12:57 PM (GMT -6)
Good luck, and I hope your results will be as good as mine. Remember, it may take several months to get the medication dosage fine tuned, so be patient.

Funny, I'm a retired registered nurse. It's a pretty small world, isn't it?
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Robbie Baguio
New Member
Joined : May 2014
Posts : 7
Posted 5/16/2014 3:38 PM (GMT -6)
Scheduling of the RAI didnt happen today. Had to do CBC first before the nuclear medicine department will schedule me. I work 6 days a week so its really hard for me to find appropriate appointments for the blood work. Especially with my insurance(emblem health) , its so hard to get appointments that don't take weeks of wait.

Anyway, I'm fascinated that you're a nurse! Did you have problems with your job since you have tremors? Or is it gone now?
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jujub
Elite Member
Joined : Mar 2003
Posts : 10422
Posted 5/16/2014 4:09 PM (GMT -6)
My tremors were mostly when I wasn't using the hand. If I was just sitting, my hands would have a tiny shake. I was able to stabilize my hands on something so it didn't affect me. It's amazing how you can use your pinkie finger to prop your hand a bit. I wasn't doing many injections, but was doing quite a few caths as well as ostomy care on children in the outpatient clinic.

My tremors went away within a month of the RAI as my levels fell. So did all the other symptoms. Then I was very hypothyroid for a while until the dosage was adjusted. Since then it's been perfect. I do get TSH, free 4 and T3 every six months.
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Robbie Baguio
New Member
Joined : May 2014
Posts : 7
Posted 5/16/2014 10:16 PM (GMT -6)
What do you mean by propping of the hand with the pinkie? It reduces the tremors?
That's so good to hear that your symptoms slowly ddisappeared after the RAI and that you didnt have any negative side effects from it.
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jujub
Elite Member
Joined : Mar 2003
Posts : 10422
Posted 5/17/2014 6:54 AM (GMT -6)
It stabilized my hand quite a bit to have it anchored even just by the tip of my pinkie. My tremor was quite fine. I wouldn't have wanted to draw blood, but I was able to do these other things okay.
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Robbie Baguio
New Member
Joined : May 2014
Posts : 7
Posted 5/18/2014 10:23 AM (GMT -6)
Oh right yeah I used to do that before. Still didnt help that much though. I just hope it'll be gone completely a few months after the uptake.
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cfs
Regular Member
Joined : Aug 2011
Posts : 80
Posted 5/20/2014 8:53 AM (GMT -6)
I assume you're confident with the care you've had. While it is safe to stay long term on anti thyroid drugs, it's understandable that you want stability while on them.
Have you been on and off? On consistently? What dose? Do you split or take once a day? Has your doctor offered you the option of block and replace therapy? It's quite effective when administered properly.

There is a Graves support group on yahoo that I haven't checked in on in years but that I found very helpful. Also, Elaine Moore's work.

P.S. about bad effects on the liver: that's why they do a metabolic panel. There are many medications that can be problematic, such as immunosuppressants given for Crohn's. GI's allow a patient's level to be up to 5 x the norm before stopping.
The difference between Crohn's meds and ATDs is that the former are started low and one builds up to a long term therapeutic dose. In the case of the latter, one starts high and lowers the dose, so you can see that there is less stress on the liver. You might want to look into milk thistle (get reliable info) of a diet that's easier on your liver, e.g. less animal protein.
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Robbie Baguio
New Member
Joined : May 2014
Posts : 7
Posted 5/22/2014 9:37 AM (GMT -6)

cfs said...
I assume you're confident with the care you've had. While it is safe to stay long term on anti thyroid drugs, it's understandable that you want stability while on them.
Have you been on and off? On consistently? What dose? Do you split or take once a day? Has your doctor offered you the option of block and replace therapy? It's quite effective when administered properly.

There is a Graves support group on yahoo that I haven't checked in on in years but that I found very helpful. Also, Elaine Moore's work.

P.S. about bad effects on the liver: that's why they do a metabolic panel. There are many medications that can be problematic, such as immunosuppressants given for Crohn's. GI's allow a patient's level to be up to 5 x the norm before stopping.
The difference between Crohn's meds and ATDs is that the former are started low and one builds up to a long term therapeutic dose. In the case of the latter, one starts high and lowers the dose, so you can see that there is less stress on the liver. You might want to look into milk thistle (get reliable info) of a diet that's easier on your liver, e.g. less animal protein.



Its been on consistently for 3 years. I was on methimazole since my diagnosis and regulated my dosage accordingly to keep my hormones at an average level. Its just recently that my levels went up and it seems reasonable now to finally end the medication path and take the RIA uptake instead.

As for other options like block and replace therapy, I have no idea what that is and wasnt offered by my endocrinologist. Could you enlighten me? Thanks
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