# hi everyone : previousley had graves now i think it has returned



## jrowsell (Jul 18, 2010)

hello everybody, I was diagnosed with graves disease in november 2005 i was put on block and replace for aprox 18 months then weaned off and i have been in remission for over 2 years without any meds. last week I started noticing trembling hands and my right eye playing up ie pressure behind and around my eye I had this the last time, feeling jittery and terrible headaches which i also got last time....although i havent had the weight loss i got last time and instead of palpatations i feel "fluttery". so i am wondering if this is the start of graves again...i am seeing my gp tomorrow for bloods to be done so i will know for sure this week....what i wanted to know is if you have had graves in the past and i thought it had been treated successfully with block and replace and over 2 years drug and graves free, is it unusual it coming back or is it usuall that it when you have had graves you have it for life.....and if it is back and after having the block and replace the first time could it be used a second time.....i am more for surgery rather than the rai route as i dont want my eye getting worse.
many thanks......i was bad the last time and dont want to go through that it affected my life my kids and my marriage ( graves rage)


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## Lovlkn (Dec 20, 2009)

jrowsell said:


> hello everybody, I was diagnosed with graves disease in november 2005 i was put on block and replace for aprox 18 months then weaned off and i have been in remission for over 2 years without any meds. last week I started noticing trembling hands and my right eye playing up ie pressure behind and around my eye I had this the last time, feeling jittery and terrible headaches which i also got last time....although i havent had the weight loss i got last time and instead of palpatations i feel "fluttery". so i am wondering if this is the start of graves again...i am seeing my gp tomorrow for bloods to be done so i will know for sure this week....what i wanted to know is if you have had graves in the past and i thought it had been treated successfully with block and replace and over 2 years drug and graves free, is it unusual it coming back or is it usuall that it when you have had graves you have it for life.....and if it is back and after having the block and replace the first time could it be used a second time.....i am more for surgery rather than the rai route as i dont want my eye getting worse.
> many thanks......i was bad the last time and dont want to go through that it affected my life my kids and my marriage ( graves rage)


I first want to congratulate you on your remission using the block and replace. Graves is a "for life" disease but people do reach remission like yourself but there is always the chance the antibodies will kick in and cause hyper symptoms like your are having again.

Since block and replace worked once if it were me I would give it a second shot. Did they do antibodies testing when they officially called remission? Being on low dose anti thyroid meds can also keep antibodies in check so even if you did B&R and then stayed on a low dose of ATD's you might maintain a manageable Graves even if you do not reach remission again.

I had surgery and if you are looking for a permanent treatment a TT is a good option. Going hypo immediately makes life alot easier hen calibrating replacement doses than the die off of the thyroid due to RAI.

My life and moods improved dramatically after my TT.


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## jrowsell (Jul 18, 2010)

thanks for your propmt reply x
when i was on block and replace i really had to push the consultant last time to stay on it he only wanted me on it for 6 months and i told him 18 months at least as i had researched the longer i was on block and replace safely without interferance to my white blood count that i would acheive higher success in reaching remission the longer i was on and he was really pushy inti the rai route, which i think he would be pushing again especially if my bloods prove hyper again....if people have been successfull on a second course or block and replace this is certenly a route i would consider again before surgery,
nievely i thought i would be free from graves forever..lol 
so if my bloods confirm i want to be armed with all the info again for the consultant and the best route
dreading the route of the symptoms to come as i think i have spotted this early that not all the symptoms i had last time have shown themselves..yet


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## Debbie from Milwaukee (Apr 18, 2010)

Can someone explain what "block and replace" is? My daughter had Grave's and was treated with Methimazole first, then RAI 3 years ago. Thanks!


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## Andros (Aug 26, 2009)

jrowsell said:


> hello everybody, I was diagnosed with graves disease in november 2005 i was put on block and replace for aprox 18 months then weaned off and i have been in remission for over 2 years without any meds. last week I started noticing trembling hands and my right eye playing up ie pressure behind and around my eye I had this the last time, feeling jittery and terrible headaches which i also got last time....although i havent had the weight loss i got last time and instead of palpatations i feel "fluttery". so i am wondering if this is the start of graves again...i am seeing my gp tomorrow for bloods to be done so i will know for sure this week....what i wanted to know is if you have had graves in the past and i thought it had been treated successfully with block and replace and over 2 years drug and graves free, is it unusual it coming back or is it usuall that it when you have had graves you have it for life.....and if it is back and after having the block and replace the first time could it be used a second time.....i am more for surgery rather than the rai route as i dont want my eye getting worse.
> many thanks......i was bad the last time and dont want to go through that it affected my life my kids and my marriage ( graves rage)


Welcome to the board. I am sorry for your disappointment re the rebound. Sad to say, I personally have never seen anyone go into permanent remission. Temporary, yes. It is a chronic disease which is life-time but it can be treated.

At this point, you may seriously wish to go ahead w/surgery so you can get serious about claiming your life back. I have no regrets about having RAI but now I am more inclined to recommend surgery because it would seem that sometimes cancer of the thyroid and hyper are bed fellows. This is discovered during pathology of the extricated gland.

Let us know what you decide and hang around. We have many here who have had the surgery and they can help you w/ tips and so on.


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## jrowsell (Jul 18, 2010)

Debbie from Milwaukee said:


> Can someone explain what "block and replace" is? My daughter had Grave's and was treated with Methimazole first, then RAI 3 years ago. Thanks!


hi debbie block and replace for me i was given carbimazole a high dose to stop my thyroid from functioning..ie resting then synthetic thyroid hormone a dose to artifically keep normal thyroid levels ...the thinking is the longer the thyoid is allowed to rest the better the chance of remission 
this is a quote from some information i have found.

In some instances, doctors end up taking over a patient's thyroid function with so called "block and replace" therapy, which "turns off" the patient's thyroid function with high doses of anti thyroid drugs and replaces the missing thyroxine with a synthetic hormonal replacement. The rather dodgy thinking behind block and replace is that by giving the patient's autoimmune thyroid destroying response a "rest", it may not start up again.


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## jrowsell (Jul 18, 2010)

Andros said:


> Welcome to the board. I am sorry for your disappointment re the rebound. Sad to say, I personally have never seen anyone go into permanent remission. Temporary, yes. It is a chronic disease which is life-time but it can be treated.
> 
> At this point, you may seriously wish to go ahead w/surgery so you can get serious about claiming your life back. I have no regrets about having RAI but now I am more inclined to recommend surgery because it would seem that sometimes cancer of the thyroid and hyper are bed fellows. This is discovered during pathology of the extricated gland.
> 
> Let us know what you decide and hang around. We have many here who have had the surgery and they can help you w/ tips and so on.


thank you.. it totally consumed me last time....i was obsessed by it...diet vitamins supplements all in the thinking it would go away and i would be fine....so i am considering surgery as i do not want to go through the old ..i cant have a prawn or broccolli because of the iodine etc...and i have to take vitamin abcde magnesium calcium etc keeping away from every stimulant known to man and other suppliments in the hope all would be cured...you know what its like at the height of being hyper you become obsessional with all sorts to the point of bizzare lol
cancer is a big issue with me my mum had brain cancer died at 49 not connected etc but still worries me


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## Andros (Aug 26, 2009)

Debbie from Milwaukee said:


> Can someone explain what "block and replace" is? My daughter had Grave's and was treated with Methimazole first, then RAI 3 years ago. Thanks!


Hi, Deb!! Block and replace is where the patient is put on anti-thyroid med and thyroxine. The anti-thyroid shuts down the pituitary, thyroid process and of course the thyroxine does it's job unencumbered.

Visualize if you will, not having a thyroid......that it was taken out. That is what the block does(just stops everything). Then you treat the patient w/thyroxine as if they had TT or RAI. It's tricky but it can be done.


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## jrowsell (Jul 18, 2010)

have been put on propranolol 40mg twice daily this morning and not been able to get an appointement for bloods till next wednesday, dont know whats happened to the good old drop in blood clinic take a ticket and wait your turn...even though my blood form says urgent apparently not urgent enough...gp doesnt ring you have to ring to get an appointment !!!


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## Andros (Aug 26, 2009)

jrowsell said:


> thank you.. it totally consumed me last time....i was obsessed by it...diet vitamins supplements all in the thinking it would go away and i would be fine....so i am considering surgery as i do not want to go through the old ..i cant have a prawn or broccolli because of the iodine etc...and i have to take vitamin abcde magnesium calcium etc keeping away from every stimulant known to man and other suppliments in the hope all would be cured...you know what its like at the height of being hyper you become obsessional with all sorts to the point of bizzare lol
> cancer is a big issue with me my mum had brain cancer died at 49 not connected etc but still worries me


Oh, my goodness! I am so so sorry about your mum. What a tragedy! I am not sure obsession is healthy but being cognizant certainly is.

Just take one day at a time here and try your best to make the decision that you think is the right one for you. You cannot do better than that.

We are here for you. I think it is more important to be concerned about what you are going to have rather than what you will not or cannot have.

hugs1


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