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    Old 01-19-2004, 09:11 AM   #1
    Cuibono
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    Question Should I opt for total thyroidectomy w/Hashis?

    I would appreciate opinions and/or experiences..I see my doc 1/27/04. Will take him up on offer to refer me to surgeon for thyroid biopsy for numerous lesions on thyroid that continue to enlarge despite 3 years Synthroid. Growth has accelerated extremely during the last six months. My husband suggests I just have the "darn thing taken out" since endo says it could take another ten years for Hashi's to destroy thyroid. I suffer from constant cycling between hypo and hyper. I tend to agree with my spouse since both lobes of thyroid are now diseased per endo.

    I am looking for experiences/opinions of people w/Hashis who have opted to have thyroid out or are considering it. I need the excisional biopsy anyway so my thought is...why would I want to go back in for another surgery if the path comes back with cancer cells when I've been told the thyroid will end up destroyed anyway. Also...I'm wondering even if the path is negative...at the rate I am producing solid nodules....isn't this a future risk, then. I do have other risk factors that make me a candidate for cancer.

    Any thoughts, opinions or experiences very welcome!

     
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    Old 01-19-2004, 10:31 AM   #2
    Redford Phyl
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Once upon a time the treatment for Hashis was surgical removal, then Synthroid or Armour for life. I wish theyd go back to it. Im on the Hashi hypo-hyper rollercoaster with a doctor who pays more attention to labs and believes in nothing but Armour. Ive cut my dose from 2 grains to 1.5 grains, and after 2 & a half weeks, Im finally starting to feel not so hyper. The tendency now is to avoid surgery, but I think it would change if the Endos and Surgeons of the world had to endure this misery. There are always possible complications to consider, but Id jump at the surgery if I had the chance. Much as I hate surgery, Id like to have my life back.

     
    Old 01-19-2004, 11:51 AM   #3
    Cuibono
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Quote:
    Originally Posted by Redford Phyl
    Once upon a time the treatment for Hashis was surgical removal, then Synthroid or Armour for life. I wish theyd go back to it. Im on the Hashi hypo-hyper rollercoaster with a doctor who pays more attention to labs and believes in nothing but Armour. Ive cut my dose from 2 grains to 1.5 grains, and after 2 & a half weeks, Im finally starting to feel not so hyper. The tendency now is to avoid surgery, but I think it would change if the Endos and Surgeons of the world had to endure this misery. There are always possible complications to consider, but Id jump at the surgery if I had the chance. Much as I hate surgery, Id like to have my life back.

    THANKS FOR THE REPLY, REDFORD! THIS IS JUST HOW I FEEL. I WOULD RATHER RISK SURGERY THAN GO THROUGH THIS FOR TEN MORE YEARS! WISH ME LUCK, I INTEND BRINGING IN A LETTER TO MY DOCTOR DOCUMENTING HOW THIS DISEASE IMPACTS THE QUALITY OF MY LIFE.

    BEST WISHES TO YOU WITH YOUR ONGOING HASHIS HYPO/HYPER. ONLY SOMEONE WHO LIVES WITH THIS CAN UNDERSTAND HOW IT CAN UNDERMINE YOUR QUALITY OF LIVING.

     
    Old 01-19-2004, 12:01 PM   #4
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Quote:
    Originally Posted by Cuibono
    I would appreciate opinions and/or experiences..I see my doc 1/27/04. Will take him up on offer to refer me to surgeon for thyroid biopsy for numerous lesions on thyroid that continue to enlarge despite 3 years Synthroid. Growth has accelerated extremely during the last six months. My husband suggests I just have the "darn thing taken out" since endo says it could take another ten years for Hashi's to destroy thyroid. I suffer from constant cycling between hypo and hyper. I tend to agree with my spouse since both lobes of thyroid are now diseased per endo.

    I am looking for experiences/opinions of people w/Hashis who have opted to have thyroid out or are considering it. I need the excisional biopsy anyway so my thought is...why would I want to go back in for another surgery if the path comes back with cancer cells when I've been told the thyroid will end up destroyed anyway. Also...I'm wondering even if the path is negative...at the rate I am producing solid nodules....isn't this a future risk, then. I do have other risk factors that make me a candidate for cancer.

    Any thoughts, opinions or experiences very welcome!
    I am not sure what to recommend as far as surgery vs no surgical removal, but I DO know that getting adequate Selenium in your diet can slow, and in some cases, even stop the antibodies, as well as help you utilize the thyroid hormones you are taking much more efficiently.

    For Hashimoto's I would suggest getting 200mcg a day fo a month, then dropping to 100mcg a day for maintenance. This has shown to help many people, and is something you can purchase inexpensively at many grocers, most pharmacies or virtually any health food store. My opinion is that this is worth a try for anyone with elevated antibodies.
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    Old 01-19-2004, 01:14 PM   #5
    Cuibono
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Quote:
    Originally Posted by Meep
    I am not sure what to recommend as far as surgery vs no surgical removal, but I DO know that getting adequate Selenium in your diet can slow, and in some cases, even stop the antibodies, as well as help you utilize the thyroid hormones you are taking much more efficiently.

    For Hashimoto's I would suggest getting 200mcg a day fo a month, then dropping to 100mcg a day for maintenance. This has shown to help many people, and is something you can purchase inexpensively at many grocers, most pharmacies or virtually any health food store. My opinion is that this is worth a try for anyone with elevated antibodies.

    MEEP, THANK YOU FOR REPLY...I HAVE TRIED AS LOW AS 50 SELENIUM (LEARNED THAT ON THIS BOARD!) I IMMEDIATELY GO HYPER...I AM CURRENTLY TRYING EATING ONE TO TWO RAW BRAZIL NUTS PER DAY TO GET MY SELENIUM. JUST STARTED SO WISH ME LUCK. MY LATEST FT3 READING HOWEVER (BEFORE I STARTED THE BRAZIL NUT THING) WAS HIGH, FT4 WAS LOW..ANTIBODIES WERE MUCH LOWER THAN LAST TEST...FROM 250 DOWN TO 25. THE REASON FOR BIOPSY IS THREE ULTRASOUNDS IN A ROW SHOWING GROWING SOLID NODULES, CHANGE/HOARSENESS IN VOICE, NECK MUSCLE PAIN, THROAT PAIN, JAW PAIN-CONSTANT. ALSO CHOKING, PROBLEMS SWALLOWING. MY DOCTOR SAID THE SURGEON GENERALLY WILL DO AN EXCISIONAL BIOPSY, SEND OUT TO PATHOLOGY, THEN TAKE THE THYROID OUT IF INDICATED. DOES THIS SOUND RIGHT?

     
    Old 01-19-2004, 01:35 PM   #6
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Quote:
    Originally Posted by Cuibono
    MEEP, THANK YOU FOR REPLY...I HAVE TRIED AS LOW AS 50 SELENIUM (LEARNED THAT ON THIS BOARD!) I IMMEDIATELY GO HYPER...I AM CURRENTLY TRYING EATING ONE TO TWO RAW BRAZIL NUTS PER DAY TO GET MY SELENIUM. JUST STARTED SO WISH ME LUCK. MY LATEST FT3 READING HOWEVER (BEFORE I STARTED THE BRAZIL NUT THING) WAS HIGH, FT4 WAS LOW..ANTIBODIES WERE MUCH LOWER THAN LAST TEST...FROM 250 DOWN TO 25. THE REASON FOR BIOPSY IS THREE ULTRASOUNDS IN A ROW SHOWING GROWING SOLID NODULES, CHANGE/HOARSENESS IN VOICE, NECK MUSCLE PAIN, THROAT PAIN, JAW PAIN-CONSTANT. ALSO CHOKING, PROBLEMS SWALLOWING. MY DOCTOR SAID THE SURGEON GENERALLY WILL DO AN EXCISIONAL BIOPSY, SEND OUT TO PATHOLOGY, THEN TAKE THE THYROID OUT IF INDICATED. DOES THIS SOUND RIGHT?
    OK, if you r T3 is high and T4 is low, then another approach might be in order. Perhaps a block and replace method would work for you, for now. What hapens is that they give you an anti-thyroid drug to block what your thyroid gland is over-producing (Usually, Too much T3 such as in your case), then give you thyroid meds to make sure that you are getting enough thyroid hormone to be healthy.

    This approach works VERY well for many people and might be just what you need. It woudl definitely give you moe time to decide on a surgery, if you aren't sure.

    On the other hand, removing the thyroid gland woould accomplish the same thing and get it over with.

    Either way, you will be on thyroid meds for life, in the end, most likely.
    __________________
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    I am not a doctor, nor have I ever played one on TV...

     
    Old 01-19-2004, 02:21 PM   #7
    Cuibono
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Quote:
    Originally Posted by Meep
    OK, if you r T3 is high and T4 is low, then another approach might be in order. Perhaps a block and replace method would work for you, for now. What hapens is that they give you an anti-thyroid drug to block what your thyroid gland is over-producing (Usually, Too much T3 such as in your case), then give you thyroid meds to make sure that you are getting enough thyroid hormone to be healthy.

    This approach works VERY well for many people and might be just what you need. It woudl definitely give you moe time to decide on a surgery, if you aren't sure.

    On the other hand, removing the thyroid gland woould accomplish the same thing and get it over with.

    Either way, you will be on thyroid meds for life, in the end, most likely.

    THANKS MEEP! I DID NOT KNOW ABOUT THE BLOCK AND REPLACE METHOD. I WILL BRING THIS UP TO MY DOCTOR.
    AS TO THE MEDS FOR LIFE....I HAVE BEEN TOLD I WILL NEED TO DO THAT ANYWAY SINCE BOTH LOBES ARE BECOMING PROGRESSIVELY DISEASED. HOWEVER, OF COURSE, NO ONE WANTS SURGERY UNLESS THEY HAVE TO.
    I WILL KEEP EVERYONE POSTED..MY APPT W/DOC IS 1/27.

     
    Old 01-19-2004, 03:53 PM   #8
    Ladywolfe
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Hi Cuibono and welcome

    I was diagnosed hypothryoid over 20 years ago, after the birth of my first child. My mother had thyroid cancer, and had to have hers removed (she lived just fine without it).

    In the past 3 years, I was diagnosed with hashi's - going from hyper to hypo like you would not believe. I had a goiter and nodules on both sides of my thyroid. The largest of the nodules was showing as a 'cold' nodule when I did the dye scan. I also had an ultrasound before all of this.

    My GP sent me to a surgeon (totally skipped the endo) to talk about options. I love my surgeon, he is such a sweetie.

    He examined the ultrasounds, lab results,etc...and told me "you've got a long history of thyroid problems, that within the past 3 years have not been responding to medicine. Your mother had thyroid cancer...you have a suspicious cold nodule on your enlarged thryoid....I can do a biopsy now, but I will have to do a biopsy on the thyroid if we have to go in for surgery later. My opinion - have the thing taken out - but it's up to you."

    I had it taken out dec 2nd of last year. Best decision I've made in a LONG time. The scar is very thin and very small. I was in the hospital just overnite and returned home the next morning. I was not hoarse at all. There was some stiffness of the neck (I think they swing you around by your neck when you're asleep,lol) but that has went away.

    My body is responding to my meds better now (without having to fight the hashi's)....my hair is growing back, I've lost a bit of weight, I'm sleeping better - things have just improved for me.

    Whatever decision you make - I wish you well. Please post back and let us know how you are.


    HUGS


    Mary Anne

     
    Old 01-19-2004, 05:31 PM   #9
    Cuibono
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Quote:
    Originally Posted by Ladywolfe
    Hi Cuibono and welcome

    I was diagnosed hypothryoid over 20 years ago, after the birth of my first child. My mother had thyroid cancer, and had to have hers removed (she lived just fine without it).

    In the past 3 years, I was diagnosed with hashi's - going from hyper to hypo like you would not believe. I had a goiter and nodules on both sides of my thyroid. The largest of the nodules was showing as a 'cold' nodule when I did the dye scan. I also had an ultrasound before all of this.

    My GP sent me to a surgeon (totally skipped the endo) to talk about options. I love my surgeon, he is such a sweetie.

    He examined the ultrasounds, lab results,etc...and told me "you've got a long history of thyroid problems, that within the past 3 years have not been responding to medicine. Your mother had thyroid cancer...you have a suspicious cold nodule on your enlarged thryoid....I can do a biopsy now, but I will have to do a biopsy on the thyroid if we have to go in for surgery later. My opinion - have the thing taken out - but it's up to you."

    I had it taken out dec 2nd of last year. Best decision I've made in a LONG time. The scar is very thin and very small. I was in the hospital just overnite and returned home the next morning. I was not hoarse at all. There was some stiffness of the neck (I think they swing you around by your neck when you're asleep,lol) but that has went away.

    My body is responding to my meds better now (without having to fight the hashi's)....my hair is growing back, I've lost a bit of weight, I'm sleeping better - things have just improved for me.

    Whatever decision you make - I wish you well. Please post back and let us know how you are.


    HUGS


    Mary Anne




    Mary Anne, thank you so much for your upbeat reply. I also have cold nodules and a goiter, family history of thyroid disorder and cancer. Like you, I just want to be able to balance my meds and get off the rollercoaster. I will keep you posted. Again, thanks to everyone for their very helpful replies.

    Caroline

     
    Old 01-19-2004, 10:07 PM   #10
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Caroline, Hi! I went through almost exactly what you are going through. I was dx'd with hypo and hashis around age 8, at 20 I had my first biopsy on a small nodule. It came back benign. My second biospy at age 21 resulted with the same thing. A few months later, swelling occured and I had it checked out again. Same conclusion. My endo gave me the option of having a partial thyroidectomy, and against everyone's wishes, I did. I felt I did not want to wait for the biospy results every 6 months (that was my other option), then wait for it to become cancerous then have it removed. So thank goodness I did-pathology report came back cancerous. I just had a total thyroidectomy on Jan 7th, and I do not regret it. Whether my gut instinct told me or not, this thyroid did not want to be in this body! I am so glad to get it all over with! I have only a couple more things down the road with the cancer, and I will be able to get on track with regulating meds for the first time in my life. This is truly a very exciting time for me as I have finally started losing weight (actually last year I started when I started cytomel) but I feel so good now and my thyroid isn't regulated at all. I believe it will be easier to treat my hypothyroidism without my pesky thyroid in the way. I will never regret this. It's been an interesting road- one I would rather not repeat, but thank goodness it happened. This board is so helpful during this time and will be as I carry my friendships over to new healthy days. I hope you decide whats best for you with the help of your doctors and friends. I also hope everything works out in the end. Good luck and keep us posted on your decisions!

    blue

     
    Old 01-20-2004, 09:34 AM   #11
    Cuibono
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Hi Bluesnowflake (I love that name)

    Thank you for your reply. I really love to read other people's stories. Before this board, I had no one to talk to about this disease. My friends and family all say the same thing, "Well, isnt Hashis really common? Don't you take a pill and shouldn't you be better now?" I really do understand that they can't understand...but this board gave me the opportunity to go somewhere where people really did understand!! I feel very fortunate.

    I like when you talked about your "gut" feeling. I also have a "gut" feeling to move ahead more proactively.

    I hope and pray your life continues to improve. Sounds like you are doing great!

    I will keep everyone posted.

    Caroline

    PS This is the first board I have ever joined (never went to chat rooms or anywhere else...basically use the computer for research). I think I'm finally getting the hang of it!

     
    Old 01-20-2004, 09:52 AM   #12
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    Re: Should I opt for total thyroidectomy w/Hashis?

    I bet you will soon get the hang of this board. It is great. Everyone is so helpful when they can offer advice, and if no knowledge is there (like me for most of the time) we offer support and a 'rant' place, and to just babble off steam.

    Welcome to here, where we are alllllll the same when you get right down to it.

    BonBe

     
    Old 01-20-2004, 10:12 AM   #13
    Cuibono
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    Re: Should I opt for total thyroidectomy w/Hashis?

    Quote:
    Originally Posted by BonBe
    I bet you will soon get the hang of this board. It is great. Everyone is so helpful when they can offer advice, and if no knowledge is there (like me for most of the time) we offer support and a 'rant' place, and to just babble off steam.

    Welcome to here, where we are alllllll the same when you get right down to it.

    BonBe
    Thanks for the support, BonBe and I will try to be there for others, also. Caroline

     
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