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Surgery instead of RAI

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I went for a six week check up with my endocrinologist last week and he

mentioned to me that he is no longer sending any of his patients (he just

sees thyroid patients) for RAI anymore. His treatment of choice is ATD's

anyway but for the segment of people who cannot go that route, he is sending

them for surgery. He explained that there is a surgeon out of Columbia U.

Hospital in NYC who does same day surgery under local anasthesia and whatever

he is doing different it is a brand new technique and he is the only one

doing it so far. This sounds like a step in the right direction.

M.

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Hi, ,

When I asked my doctor why he is now choosing RAI over surgery he said there

was a great simplicity to the procedure this particular doctor performs and

it is more desirable because RAI invariably leads to hypothyroidism. I have

no idea about how the surgery avoids that or to what extent it avoids it. I

can only say my doctor was impressed enough to make the statement that he is

opting for surgery over RAI after decades of recommending the latter.

Someone else on this list emailed me privately and asked me for the surgeon's

name and number and I have forwarded that info to her. Before I put his name

on the list, I would feel more comfortable getting some feedback from her as

to how he is actually different. This way I will not feel responsible about

anyone wasting their time with him or being let down. After that, it would

be my pleasure to share his name.

M.

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Hi -

That sounds hopeful. Did he tell you why he isn't recommending RAI anymore?

I didn't do well after RAI and have been hoping for a long time that they

stop recommending it willy-nilly.

Take care,

dx & RAI 1987 (at age 24)

> I went for a six week check up with my endocrinologist last week and he

> mentioned to me that he is no longer sending any of his patients (he just

> sees thyroid patients) for RAI anymore. His treatment of choice is ATD's

> anyway but for the segment of people who cannot go that route, he is

sending

> them for surgery. He explained that there is a surgeon out of Columbia U.

> Hospital in NYC who does same day surgery under local anasthesia and

whatever

> he is doing different it is a brand new technique and he is the only one

> doing it so far. This sounds like a step in the right direction.

>

> M.

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What great news. Add this guy to the top doc's list, please!

Terry

> From: mercai@...

> Reply-To: graves_support

> Date: Thu, 8 May 2003 17:32:58 EDT

> To: graves_support

> Subject: Surgery instead of RAI

>

> I went for a six week check up with my endocrinologist last week and he

> mentioned to me that he is no longer sending any of his patients (he just

> sees thyroid patients) for RAI anymore. His treatment of choice is ATD's

> anyway but for the segment of people who cannot go that route, he is sending

> them for surgery. He explained that there is a surgeon out of Columbia U.

> Hospital in NYC who does same day surgery under local anasthesia and whatever

> he is doing different it is a brand new technique and he is the only one

> doing it so far. This sounds like a step in the right direction.

>

> M.

>

>

>

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In a message dated 5/8/2003 7:50:43 PM Eastern Daylight Time, jutek@...

writes:

>

> I didn't do well after RAI and have been hoping for a long time that they

> stop recommending it willy-nilly.

>

Hi ,

In what way didn't you do well? Please share.

I had RAI April 29th.

How long does it take for a person to start feeling better after RAI?

Thanks

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

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In a message dated 5/8/2003 9:00:33 PM Eastern Daylight Time,

aldente@... writes:

> top doc's

What are top doc's?

Thanks

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

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http://thyroid.about.com/library/weekly/aa011899.htm?PM=ss16_thyroid

> From: thebetzz@...

> Reply-To: graves_support

> Date: Fri, 9 May 2003 07:05:43 EDT

> To: graves_support

> Subject: Re: Surgery instead of RAI

>

> In a message dated 5/8/2003 9:00:33 PM Eastern Daylight Time,

> aldente@... writes:

>

>

>> top doc's

>

> What are top doc's?

> Thanks

> Betty

>

>

>

> PS If your are expecting an answer from me, and you don't get it, please

> email me back with a friendly reminder.

> " To err is human; to forgive, divine. "

>

>

>

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Hi ,

Thanks for sharing your story. I want to know what I possibly could be in

store for.

I think this is harder on my family than it is on me.

I don't appear to be sick, yet I am so tired that I have nothing to give.

This is what they see, but they don't understand it.

Did you get tremors? If so, did they go away? If your hair was falling out,

is it growing back? How about your fingernails, are they growing back strong

and no cracks?

Is IBS a sympton of thyroid? I also have IBS. If so, does it go away?

Sorry for all the questions

Thanks so much for sharing.

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

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Hi Betty-

It took me a couple of months. I didn't have to start taking Synthroid

until a year after RAI.

Initially, RAI made me more hyperthyroid and exacerbated my TED. My TED

went from mild to severe. I was very lucky. After about 6 months post-RAI

(after being followed closely), my eyes gradually receded. Now, although I

get ulcerative keratitis occasionally, my TED is mild.

Unfortunately, soon after that 2 months of increased hyperthyroidism

post-RAI, I started feeling exhausted all the time. They insisted on

keeping my TSH at the upper end of normal (high TSH=low thyroid levels). I

also started having problems with high cholesterol even though I was only

29, high cholesterol didn't run in my family and I was thin. After my

doctor put me on a strict diet and told me to exercise more (Jeeps! I was

already working out 4 hours/day 4 days/week) for the next year and rechecked

my cholesterol levels and they hadn't budged, he told me I'd have to

eventually be on cholesterol lowering drugs for the rest of my life. I

pointed out that a symptom of hypothyroidism is high cholesterol but he

insisted that wasn't my problem. I had told him that I didn't want to go

outside the normal range but he still refused. So, since I have a physician

for a husband and he was also disgusted by my treatment, he prescribed me an

increase of thyroid hormone. This moved my TSH into the mid-normal range

and my cholesterol levels plummeted. They have never risen since, despite

my diet, unless I'm hypothyroid.

About 6 years post-RAI, my thyroid completely died. It was then that I

really started having problems. The constant fatigue became even worse and

I started feeling what I could best describe as a sick fatigue chronically,

I couldn't get pregnant, my hair would break off easily and my skin would

swell, crack and bleed. I had sleep apnea, IBS, aching joints and painful

muscles, neuropathies and acne.

I could never get any doctor to help me because my TSH was mid-normal and I

had borderline high T4 levels. Finally, I was referred to an endocrinologist

who immediately diagnosed me as hypothyroid even though he didn't run any

tests. He requested a FT3 test for me, in addition to the other thyroid

tests (replacement hormone or T4 is converted to T3 or active thyroid

hormone), which came back below normal even though my FT4 levels were

high-normal.

Now, he keeps me on a large dose of Cytomel/T3 (that was the only way we

could get my FT3 levels to midnormal) and a regular dose of Synthroid/T4.

Most of the symptoms disappeared or got better. I couldn't convert T4 to T3

effectively any longer.

I don't know if the conversion problem was related to being kept hypothyroid

for so long or the RAI. What I would suggest is that when you feel good,

have your thyroid levels checked (FT3, FT4 and TSH) so that you have a

baseline to go by when you do become hypothyroid. Then, you'll be able to

have something to shoot for when you change your thyroid hormone.

You know yourself the best. When they try to tell you that you're normal

when you're clearly having problems, either insist on getting to the root of

the problem or find another doctor that's willing to help you.

Take care,

dx & RAI 1987 (at age 24)

P.S. Sorry everyone that this was so long.

> > I didn't do well after RAI and have been hoping for a long time that

they

> > stop recommending it willy-nilly.

> >

>

> Hi ,

> In what way didn't you do well? Please share.

> I had RAI April 29th.

> How long does it take for a person to start feeling better after RAI?

> Thanks

> Betty

>

>

>

> PS If your are expecting an answer from me, and you don't get it, please

> email me back with a friendly reminder.

> " To err is human; to forgive, divine. "

>

>

>

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Hi Betty-

All the tremors disappeared 2 months post-RAI. Hair stopped falling out

once my thyroid levels stabilized. That seems to be more associated with

rapidly changing thyroid levels rather than solely being related to

hyperthyroidism. And, yes, IBS is a symptom of thyroid disease. I still

have problems with it periodically but usually that's because my thyroid

levels are off. I didn't get it until I was hypothyroid for many years but

it's very common to have IBS with hyperthyroidism. Also, I always kept my

fingernails short because we have horses and they break off when I handle

tack so cracked nails haven't been much of a problem for me.

I was severely hyperthyroid with a waking HR of 150 bpm. It would go over

200 if I exerted myself at all. That also might factor into why I did so

poorly.

Take care,

dx & RAI 1987 (at age 24)

> Hi ,

> Thanks for sharing your story. I want to know what I possibly could be in

> store for.

> I think this is harder on my family than it is on me.

> I don't appear to be sick, yet I am so tired that I have nothing to give.

> This is what they see, but they don't understand it.

> Did you get tremors? If so, did they go away? If your hair was falling

out,

> is it growing back? How about your fingernails, are they growing back

strong

> and no cracks?

> Is IBS a sympton of thyroid? I also have IBS. If so, does it go away?

> Sorry for all the questions

> Thanks so much for sharing.

> Betty

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Again, thank you .

Is your hair growing back?

How about the IBS? Did it go away and how did you handle the IBS? It is

terrible. Keeps me in the house most of the time.

Tuesday it will be 2 weeks since I had the RAI. I appreciate your sharing

your experience with me. It means a lot.

Betty

In a message dated 5/10/2003 1:36:07 AM Eastern Daylight Time, jutek@...

writes:

>

> Hi Betty-

>

> All the tremors disappeared 2 months post-RAI. Hair stopped falling out

> once my thyroid levels stabilized. That seems to be more associated with

> rapidly changing thyroid levels rather than solely being related to

> hyperthyroidism. And, yes, IBS is a symptom of thyroid disease. I still

> have problems with it periodically but usually that's because my thyroid

> levels are off. I didn't get it until I was hypothyroid for many years but

> it's very common to have IBS with hyperthyroidism. Also, I always kept my

> fingernails short because we have horses and they break off when I handle

> tack so cracked nails haven't been much of a problem for me.

>

> I was severely hyperthyroid with a waking HR of 150 bpm. It would go over

> 200 if I exerted myself at all. That also might factor into why I did so

> poorly.

>

> Take care,

>

>

>

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

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In a message dated 5/10/2003 1:36:07 AM Eastern Daylight Time, jutek@...

writes:

>

> hyperthyroidism. And, yes, IBS is a symptom of thyroid disease. I still

> have problems with it periodically but usually that's because my thyroid

>

Is that how you can tell if your levels are off?

Betty

PS If your are expecting an answer from me, and you don't get it, please

email me back with a friendly reminder.

" To err is human; to forgive, divine. "

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Hi Betty-

Yes, it did grow back. There's a picture under Photos at the website if you

want to see. I have lots of hair.

The IBS is a little trickier. For the most part, it's gone. But there are

still occasions where I'm also housebound. I had twins not too long ago and

that seems to have messed things up (the hormonal changes) but the problem

seems to be mostly restricted to morningtime. If I have to be somewhere,

Immodium usually takes care of it.

Give yourself a couple of months before you worry about it. For a few

people it takes longer and for many even shorter than 2 months. Most,

however, have their thyroid levels start to drop after a couple of months.

Take care,

dx & RAI 1987 (at age 24)

> Again, thank you .

> Is your hair growing back?

> How about the IBS? Did it go away and how did you handle the IBS? It is

> terrible. Keeps me in the house most of the time.

> Tuesday it will be 2 weeks since I had the RAI. I appreciate your sharing

> your experience with me. It means a lot.

> Betty

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Hi again Betty-

It's not the only way I can tell. It's always accompanied by other symptoms

of my thyroid levels being off too. Many people have IBS without a thyroid

disorder. Elaine has an autoimmune condition that causes it and maybe

she'll pipe in here and tell you more about it. So, even though she does

have a thyroid disorder, her IBS is not solely related to her thyroid

levels. She also makes autoantibodies to her intestinal lining if she's not

careful about what she eats.

If your IBS is only related to your thyroid levels being off it'll go away

once you're euthyroid.

Take care,

dx & RAI 1987 (at age 24)

> > hyperthyroidism. And, yes, IBS is a symptom of thyroid disease. I

still

> > have problems with it periodically but usually that's because my thyroid

> >

>

> Is that how you can tell if your levels are off?

> Betty

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> P.S. Sorry everyone that this was so long.

Nothing to apologize for. This letter should have a special place in the

archives for people contemplating or who have had RAI on the importance

of immediate, regular, and competent monitoring.

Hugs to all the kids, Fay

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