Re: Re: surgery stuff ---- a Topper rant by a pissed-off Topper

[Guest guest]

Never be ashamed to share an experience here.. please.. that goes for everyone... each of us is an explorer in just about every situation that we have with docs and surgeons and even families... the more that we learn of what has worked, and NOT worked, with others and why.. the more information we have in making decisions for our own situations....

That all said.

If the surgeon acted that way.... you were better off leaving.

So... no shame there....

As far as how much to take.

Even a small amount of tissue can potentially grow back.

There is currently NO way to surgically remove ALL thyroid tissue, there is always some left. The only way they can be sure that all the tissue is gone is RAI.

Depending on what is causing the goiter there are other ways to reduce the swelling of the gland... unless the nodules have hardened and can no longer shrink.

If Hashi's is involved simply cutting out chunks of gland won't be a permanent fix for goiter unless proper dosing is done to keep gland function suppressed which will keep the antibody activity suppressed.

If taking a Synthroid tablet daily, as easily as taking an aspirin, did the trick... not a single on of us would be here.

If taking a Synthroid tablet daily, as easily as taking an aspirin, worked for everyone....

I would not have lost my home, my car, my job, my ability to get a job, the career that I had BEFORE RAI. I would not have ended up on crutches, I would not have spent YEARS in chronic never ending pain. I would not have had to stop lifting weights, I would not have gained over 200 pounds.

If all those set backs were due to being without a thyroid due to the RAI (that was administered to me because the first doc I saw never even bothered to test me when I came in with a list of symptoms that included the loss of 40 pounds of body weight in 30 days - he sent me home telling me that I was 'too fat to be sick') then I would not have put those crutches away when I learned enough about thyroid care to start self treating and in doing so was off of those crutches in just a few months!

C'mon.. fess up..... is ANYONE here cuz they were so TOTALLY HAPPY with their treatment regime and level/quality of life that they wanted to learn more about thyroid by joining a support group???

I think it's safe to say that everyone one of us is here to learn more cuz we want to have the best result possible. Hey, I admit that there are people that do very well on Synthroid (or the other T4 only generics) it does happen. But it's not a huge percentage of the over-all population of thyroid patients and even a smaller percentage of the folks that actually end up looking to increase their level of knowledge by joining an online group (or a local community type group for that matter). We tend to end up here when we're not happy with how things are going OR when we are just starting out on the journey and trying to get enough information to make some intelligent choices.

I sooooo wish that I'd had someone to talk to when this hit me.... I didn't even have time to think about anything.. I had a piece of paper shoved in front of me... I was told to sign it to release them of any and all liability for the treatment they were about to do... and that if I didn't sign it they would not treat me and that if I didn't get treatment right NOW I would DIE!

Okay.. back to your friend....

Were they given any treatment at all or did the knife happy jerk (I only thought that, I didn't type that for others to see, right?) just jump up and down and say "chop it out chop it out"?

Adding iodine to someone dealing with Hashi's is the WRONG thing to do.... goiter caused by iodine deficiency needs iodine, goiter due to Hashi's antibody attacks and/or nodules is, as a general rule, is just made worse by adding iodine.

It's true that not everyone with Hashi's responds to suppression therapy only... and it's also true that it isnt' the easiest route to take.. and it's also true that I don't have Hashi's so I'm not speaking from personal experience in that respect....

but....

As someone without a gland.. that went through not having meds available to me... who, over the last year went from being someone doing pretty darn good on 4 1/2 grain a day to someone that had nothing a day... and is now starting all over again getting back on meds.....

NOT having any gland function at all and then NOT having access to the replacement hormone that we ALL need to stay alive... isn't the best way to go either.

I've been back on meds for less than two months... I had a 1/4 grain dosage increase yesterday... today I'm going through a mild hyper surge... am I hyper? No.. my dose isn't large enough BUT my body has been deprived of hormone and I'm going through the adjustments again to my body this is rough. From it's baseline perspective it is getting hit with a surge of extra hormone today. I think it's harder (or I'm biased) for someone with zero gland function cuz EVERYTHING is in direct relation to what is being taken ..

Okay.. that said.. and me being too gabby today....

From the doc's point of view the easy out.

Cut it... earn money from the surgery.

Wait for the person to back/slide crash then start treatment, earn money.

Joggle meds up and down, on and off, blaming it on the gland, never on the dosing or the brand of med (which for this type of doc is the 'easy as an aspirin' choice - Synthroid), earn more money with every office visit and a commission off of every lab test.

As symptoms list builds proclaim that the thyroid levels are perfect and that the symptoms are one of two things==

1) it's all in your head, grow up... take this pill and if this doesn't work we'll try this and if this doesn't work we'll try this (hmmm and I get to make money every time we try something)

2) it has nothing to do with your thyroid cuz you're on Synthroid and your TSH is just fine so it's something else so take this pill, if it doesn't work we'll try this pill.. then if it doesn't work we'll try this pill (hmmmmm and I get to make money every time we try something)

I'm on a rant... sorry.

One last comment.. then I'll shut up.

You know what got me with all this thyroid stuff? I mean why I wanted to start a group, why I wanted to start the website, why I'm still here after four years? I read a comment in a Thyroid newsgroup nearly five years ago.

Thyroid disease, the bread and butter disease. They can fail to diagnose us, fail to treat us, under treat us and pump us full of all types of drugs that mask the symptoms that are being caused by unhealthy thyroid levels and make a TON of money off of us for DECADES without killing us. By the time that we do die from a body that was tortured for all those years it's blamed on: ready? Poor lifestyle choices, improper responsibility in taking care of ourselves (the old sitting on the couch eating bon bons and not exercising routine) or old age... it has nothing to do with the medical malpractice on the part of the doctor(s) that failed to properly care for us in the first place.

The doctor that believed that that little Synthroid pill taken each morning was all it took to make it all better.

Okay. stuffing sock in mouth cuz I'm soo freaked right now I'm screaming at my monitor!!!

..... sliding soap box into the corner....

and getting up off this chair for a bit to walk off my hypery MAD!

Topper ()www.thyrophoenix.com

On Thu, 28 Dec 2006 11:10:30 -0800 (PST) G W writes:

You will never believe what happened. And I'm actually too ashamed to tell ya. But something happened and now my hypo/hashi friend is not speaking & very depressed. However, I really appreciate you () for taking time and so early this morning too, to give a very eager novice some helpful advice. But now since we no longer have a doctor nor a surgeon--I guess I have more time to learn as much as I can.

Ok so maybe, I'm enslaved to the many people that I love. And I'll admit, I do get a little over protective, sometimes. But I'M ALWAYS POLITE & eager to learn. And just because a doctor is a doctor, well it doesn't mean that he/she always has his/her patient's best interest at heart. I mean he/she didn't even read my friend's patient/file before surgery time. I actually think that he/she had no clue who we were. The doctor didn't even have a clue about the diagnosis. I mean it's not my fault, you were overbooked this AM or doing three things at once, doc said. In other words, it's not my fault, you were trying to beef up your Christmas bonus & booked too many surgeries in one day for which he/she was not prepared. Besides, you must communicate to your patients. We're clueless but we still deserve to know the ends and outs or the pros and cons. For goodness sakes, we're trusting you with our lives. We are not vehicles that you just filtering through a car wash. A surgeon is not some automobile shop owner, you deal with organs, not car parts.

Among other things: we were told to just show up 1.5 hours early, don't eat after midnight, no nail polish, no jewelry AND WE'LL DECIDE JUST BEFORE SURGERY IF WE SHOULD REMOVE 1/2 ALL OR JUST A PORTION OF THE THYROID, doc said. And then he/she decided to just remove all of it, without telling my friend who was under the impression that he/she'd opt to only operate on right side, saving 1/2 now--since there are no cancerous cells. The goal is just to remove the portion that swells, just remove the goiter. Reason being, my cousin doesn't have to use medicine, cause the good portion of thyroid is still in. I don't know how long this will last but we were hoping for the same blessing.

And then doc says, "well I can't remove a portion--it has to all come out." And then doc switches up and says, "well anytime you perform a thyroidectomy, you have to leave a little thyroid tissue on both sides." At an earlier point, he/she said that we could remove 1/2 and then leave 1/2. Today was the first we heard of excessive swelling on both sides. It's only the right side that VISUALLY has the problem. I understand that it's just a gland but considering I just cleaned out 400 emails about this gland, that's a pretty important gland. And then doc says, well synthyroid is just like aspirin, you just have to take it everyday for the rest of your life. Excuse me, no one is on this website complaining about aspirin, smarty. Bottomline, Doc said that we had three options: 1) we can remove all of the thyroid; 2) we can leave a little thyroid tissue on both sides 3) we can remove the whole right side ONLY but it's a good chance that it will grow back in 3 to 25 years.

I POLITELY suggested option 3 & we got the boot.

--Sorry for the long email. But can't we just take a truck load of Iodine pills and exercise? There has got to be away to shrink that goiter without a FULL THYROIDECTOMY & without: a very impatient and non communicative, unprofessional, AND HIGHLY RUDE surgeon who was not prepared for surgery.

Be honest with me, I can take it. What do you gurus think? Am I dreaming? Am I not facing reality? Ok, I need a break--going to see will smith and beyonce's movie...

[Guest guest]

I just want to thank everyone for listening/reading. I realize that my friend and I may be in a slightly better predicament than some of you. Topper, I had no idea that you had a near death experience, personally. I had no idea. Each of you are stronger and much, much, much, more educated in this area than I am. I think the doctor's decision to cancel surgery was an act of God, there is no way that doc was ready to operate and we were just not prepared. And so if doc decides to keep our money & charge us a big fat bogus bill, we'll just have to deal with it. This is all a big step. I thought that it was a simple surgery--just go in remove some and resew. I didn't even think about nerves and parathyroid (???) stuff. I came up with this Iodine stuff because my friend said that all of this started when he/she decided to stop eating salt. My friend thinks that the lack of salt & too many needle aspirations/biopsies made the goiter grow. We thought that Iodine

was some antiseptic element found in sea water and rocks. I thought that it was basically salt, itself. I could have sworn that my chem professor said this. PS Sam, thanks so much for your email. So many of you guys/girls are so great: Ken and his wife; renee, mary, andrea, topper, sam and so many others that take time to actually send novice emails that folk like myself can read (3x) for understanding....LOOOOOOOOOOOOOOOOL! Anyway, I really appreciate it. I went to see Dreamgirls (if you like good singing, check it out) & if you like lifetime movies and things that make you think (see pursuit of happiness/will smith). I feel much better--Ready to start researching. And maybe in about 10 to 20 years, we'll be ready to take on surgery again [LOL!] topper2@... wrote: Never be ashamed to share an experience here.. please.. that goes for everyone... each of us is an explorer in just about every situation that we have with docs and surgeons and even families... the more that we learn of what has worked, and NOT worked, with others and why.. the more information we have in making decisions for our own situations.... That all said. If the surgeon acted that way.... you were better off leaving. So... no shame there.... As far as how much to take. Even a small amount of tissue can potentially grow back. There is currently NO way to surgically remove ALL thyroid tissue, there is always some left. The only way they can be sure that all the tissue is gone is RAI. Depending on what is causing the goiter there are other ways to reduce the swelling of the gland... unless the nodules have hardened and can no longer shrink. If Hashi's is involved simply cutting out chunks of gland won't be a permanent fix for goiter unless proper dosing is done to keep gland function suppressed which will keep the antibody activity suppressed. If taking a Synthroid tablet daily, as easily as taking an aspirin, did the trick... not a single on of us would be here. If taking a Synthroid tablet daily, as easily as taking an aspirin, worked for everyone.... I would not have lost my home, my car, my job, my ability to get a job,

the career that I had BEFORE RAI. I would not have ended up on crutches, I would not have spent YEARS in chronic never ending pain. I would not have had to stop lifting weights, I would not have gained over 200 pounds. If all those set backs were due to being without a thyroid due to the RAI (that was administered to me because the first doc I saw never even bothered to test me when I came in with a list of symptoms that included the loss of 40 pounds of body weight in 30 days - he sent me home telling me that I was 'too fat to be sick') then I would not have put those crutches away when I learned enough about thyroid care to start self treating and in doing so was off of those crutches in just a few months! C'mon.. fess up..... is ANYONE here cuz they were so TOTALLY HAPPY with their treatment regime and level/quality of life that they wanted to learn more about thyroid by joining a support group??? I think it's safe to say that everyone one of us is here to learn more cuz we want to have the best result possible. Hey, I admit that there are people that do very well on Synthroid (or the other T4 only generics) it does happen. But it's not a huge percentage of the over-all population of thyroid patients and even a smaller percentage of the folks that actually end up looking to increase their level of knowledge by joining an online group (or a local community type group for that matter). We tend to end up here when we're not happy with how things are going OR when we are just starting out on the journey and trying to get enough information to make some intelligent choices. I sooooo wish that I'd had someone to talk to when this hit me.... I didn't even have time to think about anything.. I had a piece of paper shoved in front of me... I was told to sign it to release them of any and all liability for the

treatment they were about to do... and that if I didn't sign it they would not treat me and that if I didn't get treatment right NOW I would DIE! Okay.. back to your friend.... Were they given any treatment at all or did the knife happy jerk (I only thought that, I didn't type that for others to see, right?) just jump up and down and say "chop it out chop it out"? Adding iodine to someone dealing with Hashi's is the WRONG thing to do.... goiter caused by iodine deficiency needs iodine, goiter due to Hashi's antibody attacks and/or nodules is, as a general rule, is just made worse by adding iodine. It's true that not everyone with Hashi's responds to suppression therapy only... and it's also true that it isnt' the easiest route to take.. and it's also true that I don't have Hashi's so I'm not speaking from personal experience in that respect....

but.... As someone without a gland.. that went through not having meds available to me... who, over the last year went from being someone doing pretty darn good on 4 1/2 grain a day to someone that had nothing a day... and is now starting all over again getting back on meds..... NOT having any gland function at all and then NOT having access to the replacement hormone that we ALL need to stay alive... isn't the best way to go either. I've been back on meds for less than two months... I had a 1/4 grain dosage increase yesterday... today I'm going through a mild hyper surge... am I hyper? No.. my dose isn't large enough BUT my body has been deprived of hormone and I'm going through the adjustments again to my body this is rough. From it's baseline perspective it is getting hit with a surge of extra hormone today. I

think it's harder (or I'm biased) for someone with zero gland function cuz EVERYTHING is in direct relation to what is being taken .. Okay.. that said.. and me being too gabby today.... From the doc's point of view the easy out. Cut it... earn money from the surgery. Wait for the person to back/slide crash then start treatment, earn money. Joggle meds up and down, on and off, blaming it on the gland, never on the dosing or the brand of med (which for this type of doc is the 'easy as an aspirin' choice - Synthroid), earn more money with every office visit and a commission off of every lab test. As symptoms list builds proclaim that the thyroid levels are perfect and that the symptoms are one of two things== 1) it's all in your head, grow up... take this pill and if this doesn't work we'll try this and if this doesn't work we'll try

this (hmmm and I get to make money every time we try something) 2) it has nothing to do with your thyroid cuz you're on Synthroid and your TSH is just fine so it's something else so take this pill, if it doesn't work we'll try this pill.. then if it doesn't work we'll try this pill (hmmmmm and I get to make money every time we try something) I'm on a rant... sorry. One last comment.. then I'll shut up. You know what got me with all this thyroid stuff? I mean why I wanted to start a group, why I wanted to start the website, why I'm still here after four years? I read a comment in a Thyroid newsgroup nearly five years ago. Thyroid disease, the bread and butter disease. They can fail to diagnose us, fail to treat us, under treat us and pump us full of all types of drugs that mask the symptoms that are being caused by unhealthy thyroid levels

and make a TON of money off of us for DECADES without killing us. By the time that we do die from a body that was tortured for all those years it's blamed on: ready? Poor lifestyle choices, improper responsibility in taking care of ourselves (the old sitting on the couch eating bon bons and not exercising routine) or old age... it has nothing to do with the medical malpractice on the part of the doctor(s) that failed to properly care for us in the first place. The doctor that believed that that little Synthroid pill taken each morning was all it took to make it all better. Okay. stuffing sock in mouth cuz I'm soo freaked right now I'm screaming at my monitor!!! .... sliding soap box into the corner.... and getting up off this chair for a bit to walk off my hypery MAD! Topper ()www.thyrophoenix.com On Thu, 28 Dec 2006 11:10:30 -0800 (PST) G W <msflowersusa (AT) yahoo (DOT) com> writes: You will never believe what happened. And I'm actually too ashamed to tell ya. But something happened and now my hypo/hashi friend is not speaking & very depressed. However, I really appreciate you () for taking time and so early this morning too, to give a very eager novice some helpful advice. But now since we no longer have a doctor nor a surgeon--I guess I have more time to learn as much as I can. Ok so maybe, I'm enslaved to the many people that I love. And

I'll admit, I do get a little over protective, sometimes. But I'M ALWAYS POLITE & eager to learn. And just because a doctor is a doctor, well it doesn't mean that he/she always has his/her patient's best interest at heart. I mean he/she didn't even read my friend's patient/file before surgery time. I actually think that he/she had no clue who we were. The doctor didn't even have a clue about the diagnosis. I mean it's not my fault, you were overbooked this AM or doing three things at once, doc said. In other words, it's not my fault, you were trying to beef up your Christmas bonus & booked too many surgeries in one day for which he/she was not prepared. Besides, you must communicate to your patients. We're clueless but we still deserve to know the ends and outs or the pros and cons. For goodness sakes, we're trusting you with our lives. We are not vehicles that you just filtering through a car wash. A surgeon is not some automobile shop owner, you deal

with organs, not car parts. Among other things: we were told to just show up 1.5 hours early, don't eat after midnight, no nail polish, no jewelry AND WE'LL DECIDE JUST BEFORE SURGERY IF WE SHOULD REMOVE 1/2 ALL OR JUST A PORTION OF THE THYROID, doc said. And then he/she decided to just remove all of it, without telling my friend who was under the impression that he/she'd opt to only operate on right side, saving 1/2 now--since there are no cancerous cells. The goal is just to remove the portion that swells, just remove the goiter. Reason being, my cousin doesn't have to use medicine, cause the good portion of thyroid is still in. I don't know how long this will last but we were hoping

for the same blessing. And then doc says, "well I can't remove a portion--it has to all come out." And then doc switches up and says, "well anytime you perform a thyroidectomy, you have to leave a little thyroid tissue on both sides." At an earlier point, he/she said that we could remove 1/2 and then leave 1/2. Today was the first we heard of excessive swelling on both sides. It's only the right side that VISUALLY has the problem. I understand that it's just a gland but considering I just cleaned out 400 emails about this gland, that's a pretty important gland. And then doc says, well synthyroid is just like aspirin, you just have to take it everyday for the rest of your life. Excuse me, no one is on this website complaining about aspirin, smarty. Bottomline, Doc said that we had three options: 1) we can remove all of

the thyroid; 2) we can leave a little thyroid tissue on both sides 3) we can remove the whole right side ONLY but it's a good chance that it will grow back in 3 to 25 years. I POLITELY suggested option 3 & we got the boot. --Sorry for the long email. But can't we just take a truck load of Iodine pills and exercise? There has got to be away to shrink that goiter without a FULL THYROIDECTOMY & without: a very impatient and non communicative, unprofessional, AND HIGHLY RUDE surgeon who was not prepared for surgery. Be honest with me, I can take it. What do you gurus think? Am I dreaming? Am I not facing reality? Ok, I need a break--going to see will smith and beyonce's movie... __________________________________________________