Aa
RAI or stay on tapazole
My endo has recommended that I do RAI treatment. I have been diagnosed this Feb. I tried PTU for a month with no luck so then my endo put me on tapazole which did lower my T3 and T4. But she thinks I should do RAI, what would you suggest.
thanks
Jeff
This discussion is related to Contradictory info about RAI for Graves !!!?!!?????.
thanks
Jeff
This discussion is related to Contradictory info about RAI for Graves !!!?!!?????.
I totally agree with AR-10 and yes, I too have Graves , had Hyperthyroidism, Atrial Fibrillation 3 times in 2 weeks and went for RAI (exactly one year ago yesterday) and then 2 days before RAI...was found to have Cancer of the whole thyroid bed. I had a keyhole TT 3 months after RAI and have never looked back.
Read my journals as this will give you some idea as to just what to expect with RAI.
I have a heart murmur and Mitral Valve Prolapse (murmur was from birth).
Surgery at the time was too dangerous for me and TT was done under epidural.
Had I not had these done...I wouldnt be typing this post now.
Take time to decide but usually allow yourself 6-12 months to do as much research as you can.
I DONT regret RAI in any shape or form and would do it again if need be.
On other forums, I was basically classified as a 'leper' for having RAI and had the 'fear of God' put into me.
Dont let no-one do that to you.
But I do suggest that you research as much as you can because once you have RAI, you have to learn 'the other side of the fence' so to speak.
Treating Hypothyroidism.
Although I must say its been so much easier for me than dealing with Hyperthyroidism.
I also found the symptoms are not as severe as before RAI.
All the best :)
Read my journals as this will give you some idea as to just what to expect with RAI.
I have a heart murmur and Mitral Valve Prolapse (murmur was from birth).
Surgery at the time was too dangerous for me and TT was done under epidural.
Had I not had these done...I wouldnt be typing this post now.
Take time to decide but usually allow yourself 6-12 months to do as much research as you can.
I DONT regret RAI in any shape or form and would do it again if need be.
On other forums, I was basically classified as a 'leper' for having RAI and had the 'fear of God' put into me.
Dont let no-one do that to you.
But I do suggest that you research as much as you can because once you have RAI, you have to learn 'the other side of the fence' so to speak.
Treating Hypothyroidism.
Although I must say its been so much easier for me than dealing with Hyperthyroidism.
I also found the symptoms are not as severe as before RAI.
All the best :)
loulou35
You are the first person on here to describe symptoms/thyroid problems exactly like I had!!! I had a multinodular goiter with subclinical hyperthyroidism for years (since I was a teen - I'm in my early 30's now). My T4 and T3 levels were always normal and my TSH was always <.01. Thyroid uptake scan revealed hot and cold nodules. Fine needle biopsies of larger cold nodules were normal.
I started taking tapazole in my late 20's to try and treat my symptoms of fatigue and racing thoughts/poor working memory/attention. It didn't really work so I discontinued it. About 6 months after stopped the meds my T3 levels started climbing. I decided to get pregnant and hoped that my thyroid issues would go into remission as my 3rd endo (I've had 4 endos) suggested they might. Actually, they got worse. I threw up every day between 6-13 weeks pregnant and was eventually put on PTU at the end of my first trimester. I took it for the rest of my pregnancy and while breastfeeding. My beautiful baby boy is healthy and meeting all developmental milestones. He has no thyroid issues so far. Unfortunately, 6 months postpardum I developed an awful rash (the worst rash I've ever had) which was accompanied by really bad progressive joint pain. I stopped the meds and after 2 weeks my symptoms resolved. A couple weeks later I started tapazole again. I have a dry mouth and diminished sense of taste/smell. I'm exhausted all the time and still have problems with attention/working memory at times (which I used to attribute to stress of my job but I don't think this is the case anymore.) Tapazole can cause birth defects and I'd like to have another child therefore, I have elected to do RAI to treat my hyperthyroidism. After I do the RAI, I am going to wait about a year before trying to get pregnant. After the treatment I have to be apart from my son for a week which I'm dreading. Please let me know how your story has developed since your post in October 2008 (coincidently when my son was born). There don't seem to be many like us around.
You are the first person on here to describe symptoms/thyroid problems exactly like I had!!! I had a multinodular goiter with subclinical hyperthyroidism for years (since I was a teen - I'm in my early 30's now). My T4 and T3 levels were always normal and my TSH was always <.01. Thyroid uptake scan revealed hot and cold nodules. Fine needle biopsies of larger cold nodules were normal.
I started taking tapazole in my late 20's to try and treat my symptoms of fatigue and racing thoughts/poor working memory/attention. It didn't really work so I discontinued it. About 6 months after stopped the meds my T3 levels started climbing. I decided to get pregnant and hoped that my thyroid issues would go into remission as my 3rd endo (I've had 4 endos) suggested they might. Actually, they got worse. I threw up every day between 6-13 weeks pregnant and was eventually put on PTU at the end of my first trimester. I took it for the rest of my pregnancy and while breastfeeding. My beautiful baby boy is healthy and meeting all developmental milestones. He has no thyroid issues so far. Unfortunately, 6 months postpardum I developed an awful rash (the worst rash I've ever had) which was accompanied by really bad progressive joint pain. I stopped the meds and after 2 weeks my symptoms resolved. A couple weeks later I started tapazole again. I have a dry mouth and diminished sense of taste/smell. I'm exhausted all the time and still have problems with attention/working memory at times (which I used to attribute to stress of my job but I don't think this is the case anymore.) Tapazole can cause birth defects and I'd like to have another child therefore, I have elected to do RAI to treat my hyperthyroidism. After I do the RAI, I am going to wait about a year before trying to get pregnant. After the treatment I have to be apart from my son for a week which I'm dreading. Please let me know how your story has developed since your post in October 2008 (coincidently when my son was born). There don't seem to be many like us around.
Expect to get better! What are your levels (TSH, Free T3 and T4), and what dose of PTU?
Hello, I have subclinical hyperthyroidism, with multinodular goiter, does anyone have advice. I am trying to get pregnant, and my doctor just put me on a low dose of PTU. Any words of wisdom out there on what to expect? I was originally diagnosed two years ago with fluid cyst on one side of my thyroid. It was drained, and a repeat ultrasound shows it is still smaller. Not sure what happens now. My tsh is still suppressed, and free t4 and free t3 confirm the same.
I agree with take your time and be proactive. Knowing what I know from my experience, I would ask for my PTU dose to be increased and see what happens. I've been on PTU for over two years and while I'm not in remission, it's changed my life. I just had labs for liver done and all is good. Being only treated for a month and doc wanting RAI seems rushed to me -- unless your life has been threatened which I don't think you mentioned.
PTU is a short for the drug propothyrouricil which I think just "soaks up" the excess thyroid hormone. It took about 3-4 months on it until I started feeling normal again. After the cardiologist recommended that killing the thyroid to protect the heart from atrial fribulation was necessary I did the RAI and again it took several months on a very low dose of synthroid (.05mg) to feel normal. I guess I was fortunate as I know others had a hard time getting the right replacement drug and dosage. You didn't say what your blood levels were which may be a consideration. With RAI you are exchanging one disease hyperthyroidism for another hypothyroidism. Your problem is an immune system disorder and RAI is killing or partially killing the target organ not healing the immune system. I guess that makes sense??? Good thing the heart is not the target organ. I assume you are 26 and physically in good shape. If so then doing the antithyroid drug thing may be worth a try, just be careful to monitor your heart rythymn for pre-mature atrial flurry or atrial fribulation which could lead to stroke. Please keep in mind that I am not an endocrinologist and have only a cursory knowledge based on my personal experience. Take your time,be proactive and take personal responsibility in making your health care decisions.
here are my most recent lab work from May 22nd
TSH= .005 (.400 - 5.1)
T3= 5.8 ( 2.3 - 4.2)
T4= 1.5 (.7 - 1.9)
TSH= .005 (.400 - 5.1)
T3= 5.8 ( 2.3 - 4.2)
T4= 1.5 (.7 - 1.9)
I would think the length of time you can remain on Tapazole would depend on the dose and the condition of your Liver.
I have always been told that Tapazole is only safe to take for 12-18 months before the risk of Liver damage starts to become substantial. I'm sure the strength of the med and the health of the Liver provide enough variable to make that estimate quite a bit on the conservative side, but I have never heard you could take it for decades.
I would stretch out the decision making for a while, if the Tapazole can keep you balanced and at a good level. You may go into remission. Of course, that's just two more times your hormones are messed up, when you go into remission, and when you go Hyper again. But you might get a year of no meds and good levels if you do go into remission.
Eventually you will have to decide between RAI and surgery.
If you choose RAI, you might as well go for total destruction, because you will be lucky if that happens. "Wounding the gland" is just going to put you on a ten or twenty year slide toward where you are going to end up one way or the other, with a dead thyroid.
A failing gland in late stages is very irratic and med changes come often and help little. Just remove the thing, get your meds regulated, and get on with your life, before you have heart damage.
But give the meds a chance to work and you can learn all about Tapazole and RAI and surgery in the meantime.
My opinion of RAI for purposes of ablation is that it is slow, dangerous, unpredictable, and sometimes the best choice. I don't like it any more than HeritageWI does. But I did it. My body couldn't take the abuse it was getting anymore, and surgery was denied.
RAI stinks, but it can't be any harder on your body than years of going up and down and up and down.
HeritageWI, welcome to the board. Your method of treatment has worked for you, and it has worked for others, and I respect your choice. I think for some people it would do more harm than good. Thank you for providing it as an option, and if you have any data on long term usage of Methimazole I would be interested in educating myself further.
I have always been told that Tapazole is only safe to take for 12-18 months before the risk of Liver damage starts to become substantial. I'm sure the strength of the med and the health of the Liver provide enough variable to make that estimate quite a bit on the conservative side, but I have never heard you could take it for decades.
I would stretch out the decision making for a while, if the Tapazole can keep you balanced and at a good level. You may go into remission. Of course, that's just two more times your hormones are messed up, when you go into remission, and when you go Hyper again. But you might get a year of no meds and good levels if you do go into remission.
Eventually you will have to decide between RAI and surgery.
If you choose RAI, you might as well go for total destruction, because you will be lucky if that happens. "Wounding the gland" is just going to put you on a ten or twenty year slide toward where you are going to end up one way or the other, with a dead thyroid.
A failing gland in late stages is very irratic and med changes come often and help little. Just remove the thing, get your meds regulated, and get on with your life, before you have heart damage.
But give the meds a chance to work and you can learn all about Tapazole and RAI and surgery in the meantime.
My opinion of RAI for purposes of ablation is that it is slow, dangerous, unpredictable, and sometimes the best choice. I don't like it any more than HeritageWI does. But I did it. My body couldn't take the abuse it was getting anymore, and surgery was denied.
RAI stinks, but it can't be any harder on your body than years of going up and down and up and down.
HeritageWI, welcome to the board. Your method of treatment has worked for you, and it has worked for others, and I respect your choice. I think for some people it would do more harm than good. Thank you for providing it as an option, and if you have any data on long term usage of Methimazole I would be interested in educating myself further.
In the U.S., RAI is the standard treatment for Graves. In Europe and Japan, tapazole (methimazole) is the standard and RAI is reserved only if medication doesn't control the thyroid. It's a treatment of last resort. People can be on medication for decades.
What most people don't understand is that once you have hyperthyroid, it takes a *very* long time for your body to get back to normal, even if the medication is keeping your TSH and FT4 in bounds. Also, not all endos are up on the latest. In many labs across the nation, TSH levels are considered normal at high levels. The Society of Endos now considers 3.0 to be the maximum high. Some are now saying 2.5. And in my case, I have to keep my levels between 1.0 and 2.0.
My thyroid has been almost burned out by Graves and I'm now on Levathroid, treating for hypothyroid. However, I'm on a very low dose and my TSH results bounce around. Luckily my husband is a med tech and we can watch the levels very carefully. My doctor allows me to control the dose as needed.
I still have a murmur, but my heart rate is normal. But that took some time. I would *never* have RAI unless it was absolutely necessary.
I battled symptoms for a long time. It's not an easy situation, but perseverance pays off. With RAI there's many side effects they don't tell you about.
Dianne
What most people don't understand is that once you have hyperthyroid, it takes a *very* long time for your body to get back to normal, even if the medication is keeping your TSH and FT4 in bounds. Also, not all endos are up on the latest. In many labs across the nation, TSH levels are considered normal at high levels. The Society of Endos now considers 3.0 to be the maximum high. Some are now saying 2.5. And in my case, I have to keep my levels between 1.0 and 2.0.
My thyroid has been almost burned out by Graves and I'm now on Levathroid, treating for hypothyroid. However, I'm on a very low dose and my TSH results bounce around. Luckily my husband is a med tech and we can watch the levels very carefully. My doctor allows me to control the dose as needed.
I still have a murmur, but my heart rate is normal. But that took some time. I would *never* have RAI unless it was absolutely necessary.
I battled symptoms for a long time. It's not an easy situation, but perseverance pays off. With RAI there's many side effects they don't tell you about.
Dianne
I take 2 X 50mg three times a day. My last tsh was at .001. (I'm also pregnant and was feeling well before that.)
I'm sure there are good results with RAI but I've also read where it's not as straight forward as docs explain it and some have regretted the decision to have it.
What are your lab results?
I'm sure there are good results with RAI but I've also read where it's not as straight forward as docs explain it and some have regretted the decision to have it.
What are your lab results?
I do have Graves disease. The endo talked about the RAI and said I would take enough not to kill the thyroid. How did you feel during the time you were on PTU? I still don't have much energy, tired and get out of breath easy. I enjoy running and want to get better to get back to running. How did you feel after your RAI? How long did it take to get back to normal, if there is such a thing?
My endo just increased my Tapazole to 40mg once a day. I was taken 10mg 3x a day. I probably going to seek a second opion in the next week.
I was diagnosed with severe hyperthyroid last year making me have heart problems. I had to have surgery (total thyroid removed). I wish that I had tried some kind of holistic route before surgery. My life has been turned UPSIDE down since. It was really bad before sugery (on tapazale and heart meds) but it has been much worse since! It it basically ruining my life! How long have you been on meds to cool down your thyroid? Are you hashi or graves? By the way, what is PTU?
I've been on PTU for over 2 years. Has your dose been increased? I'm scared of RAI. I would seek a second opinion since you've only been treated for a month just to be sure and get more info.
Hi Jeff. Since no one seems to want to talk with us, I'll share what I know which isn't much. There are 3 ways to treat Graves or Hyperthyroidism which is what I assumed you have. Surgery, AntiThyroid Meds and RAI each with it's own set of consequences. Your endo has more than likely evaluated the risk-reward of each and believes that the RAI is best. The antithyroid med's are ok but I was on PTU for 2 years then had a problem that put me in the hospital. My cardiologist got on my case and recommended that I stop putting my heart at risk and do the RAI. Evidently they didn't manage to kill it as after 10 years it's back. In your case I would ask if they are going to "kill it or just wound it" If they do abalate it you will have to take replacement for life but should be able to have a normal life. I would go with the RAI..... Hope this helps, good luck
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