Radioactive Iodine for Hashimotos/Thyroid resistance

[Guest guest]

Hi everyone,

Please see the earlier emails below...I'm really

leaning towards getting the RAI for my thyroid

becasuse I'm so sick of the Hashimotos causing me to

fluctuate. My mood in particular is so unpredictable

anymore - sometimes I feel like I'm crazy.

Topper, I guess I'm ready to accept the risks

involved. But as I was thinking about it, I came up

with one more concern. Even though my thyroid isn't

dead yet, my doc has been treating me with Armour

Thyroid for the past year (fluctuating the dose with

my swings) in order to keep me " balanced " . However, I

haven't really been balanced AND the Armour has never

really given me energy. I had other effects, such as

rapid heartbeat, sensitivity to heat, hunger, but no

energy...

....He told me I might be thyroid resistant...even

though my bloodwork shows me as HYPERthyroid, many of

my symptoms are HYPOthyroid. OR is it that Armour

doesn't work for me? Anyway, my concern is this: what

if I get the RAI and the Armour doesn't help me?? I

won't have any of my own gland left to back me up at

all. I'm confused and worried. Any thoughts?

Thanks so much!

M.

--- topper2@... wrote:

> I had RAI.

>

> I've never had any type of surgery.. so I can't

> really compare...

>

> All surgeries have risks... I know that... it has to

> do with the

> anesthesia....

>

> Pros and cons.. .that I know....

>

> Surgery is more precise as to how much gland is

> removed... but with

> Hashi's, it's best to get rid of all of it.. so that

> the antibodies have

> no stimulant... Surgery can not remove all of the

> gland.. they can get

> almost all of it, but there is tissue left behind.

>

> RAI is tricky. They do the math.... things that they

> have to consider is

> your body size, metabolic rate, size and activity of

> the gland, your

> level of physical activity (how much you

> move/sweat/breathe/eat/pee/ and

> move your bowels (to expel the excess radiation))

> and then a best guess.

> Too little and not enough of the gland is destroyed.

> Too much and all of

> the gland is gone, and there can be other side

> affects. It's my

> understanding that the 'sick' I had the first few

> days after RAI was

> radiation poisoning..... When I mentioned my

> illness during my first

> follow up I was made to feel as though I made a

> mountain out of a mole

> hill, exaggerated and it was all in my head IF I was

> sick.... in the last

> few years as I've done more research.... what I went

> through was real,

> not imagined, and fits with descriptions of

> radiation poisoning following

> too high a dose.

>

> The greater the gland activity the greater the

> uptake of the radioactive

> iodine and the greater its effectiveness. If the

> gland is in a 'dormant'

> period, like after a 'major' antibody attack,

> uptake will be less and

> effectiveness will be less. One of the reasons that

> some docs say to

> avoid all iodine intake before RAI is to starve the

> gland (of iodine) so

> that it scarfs up the radioactive iodine when it's

> introduced.

>

> Having less active gland tissue will reduce the

> activity of the hashi

> antibodies. Your 'swings' will be less severe.

>

> Remaining gland tissue can grow back.... not likely,

> but can happen

>

> RAI has side affects... two specifics are

> lymphedema, usually in the neck

> or chest... (mine is the chest) that can take as

> long as 20 years to show

> up and an increase in the likelihood of developing

> breast cancer... as

> well as other cancers. They haven't come up with a

> direct cause and

> effect link with the cancer issues, yet... they just

> say that as part of

> the population, RAI puts you at an increased risk.

>

> I have the page on the website that runs through

> some of the things that

> might come in handy (to know) as you consider RAI as

> one of your options

> ( www.thyrophoenix.com/rai.htm )

>

> As someone with no gland... a couple of things that

> I've noticed....

> I don't have any fluctuations. I have a pretty

> consistent and predictable

> curve in either going up or down in med dosing.

> I have no back up function. If I don't have meds,

> replacment hormone, I'm

> flat out SOL. My body has nothing going in.... it

> uses up what it has and

> then I bottom out. What I'm going through now is

> that bottom out from

> having run out of meds. I have some meds now and

> have just started taking

> it again a few days ago. I'm hyper sensitive to

> adjustments so get the

> honor joy and thrill of starting out with a quarter

> grain. I'll be

> adjusting dosages every six weeks, quarter grain at

> a time, until I get

> back up to my optimal, which seems to be about 4 1/2

> grain. If I go

> through the same reaction curve as the last time, as

> I hit about 3 grain

> my dosing adjustment increments will increase to 12

> weeks. I'm NOT

> looking forward to this.

>

> So there are pros and cons to all three routes 1,

> dealing with the gland

> and antibodies until the gland dies 2, facing

> surgery and it's chances 3,

> facing RAI and it's chances

>

> Others can comment more on the surgery options...

>

> Oh.... I guess there is a fourth option too....

> surgery to remove as much

> of the gland as possible... then a MUCH lower dose

> of RAI to zap the

> remaining tissue. The same route that is used in a

> lot of thyroid cancer

> treatments. Going that route you could see how

> effective the surgery was

> on reducing tissue and antibody activity... and if

> it's not adequate,

> then go with the RAI to 'finish it off' with much

> less risks cuz it would

> be a much lower dose.

>

> That's all that is coming to mind right now... it's

> time for bed...

> drat.. it's passed time for bed.....

>

> Topper ()

> Yahoo IM: toppertwo

>

>

> On Sun, 26 Nov 2006 16:12:14 -0800 (PST) " J.

> McCormick "

> mccormicklj@...> writes:

> > Hi everyone,

> >

> > I'm always on here with a different question. )

> >

> > I've read so many mixed reviews about radioactive

> > iodine. I've been dealing with Hashimotos now for

> 3

> > years and I'm SO tired of the ups and downs -

> hyper

> > and hypo symptoms and all the hormonal/sexual

> problems

> > that go along with them. So I wanted to ask you

> guys

> > what you think about radioactive iodine for

> > Hashimotos?

> >

> > My thyroid will eventually die anyway, right? Once

> > it's dead, I can be treated simply as HYPOthyroid,

> > right? Any idea what happens to the thyroid

> antibodies

> > after radioactive iodine? Are they still in your

> body?

> > If so, do they hurt anything once your thyroid is

> > dead?

> >

> > Thanks so much!!

> >

> > M.

>

________________________________________________________________________________\

____

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[Guest guest]

With Hashi's, you don't WANT your gland to back you up, you want it to

remain " silent " . The active Hashi's gland will produce more hormone,

producing more antibodies, producing further enlargement, swelling,

inflammation, nodules, infiltration with lymphocytes, and, overall, a ton

more destruction and damage, to the point that RAI won't even do any good,

you'll have to have it taken out because there won't be room in your neck

for it any more. This is why I've been saying more lately that I need a

scan, ultrasound, whatever, and frankly, I want the thing out of there,

because I KNOW that I've been having many more inflammation attacks in the

last yr than ever before. I hate to think of how grotesque that thing looks

in there, possibly wrapped up on my windpipe, pressuring my carotid

arteries, etc....etc.....This is the picture I've seen painted over and

over, from one Hashi's person to another, whose gland was allowed by some

dimwit doc to function on it's own, and that would include the former yrs

with mine. I'm tired of all the fun also, and I think that there is

irrevocable damage to the gland itself that can't magically be repaired. I

would opt for SURGERY, not RAI, being as mine will be permanently " frozen "

to the size and character that it probably already is. This is just one of

the little niceties about a Hashi's gland that sets it apart from the rest.

I think that DeQuervains does that, and heck if I know whether I have that,

maybe they'll know on autopsy, lol, or when it is taken out.

Radioactive Iodine for

Hashimotos/Thyroid resistance

> Hi everyone,

>

> Please see the earlier emails below...I'm really

> leaning towards getting the RAI for my thyroid

> becasuse I'm so sick of the Hashimotos causing me to

> fluctuate. My mood in particular is so unpredictable

> anymore - sometimes I feel like I'm crazy.

>

> Topper, I guess I'm ready to accept the risks

> involved. But as I was thinking about it, I came up

> with one more concern. Even though my thyroid isn't

> dead yet, my doc has been treating me with Armour

> Thyroid for the past year (fluctuating the dose with

> my swings) in order to keep me " balanced " . However, I

> haven't really been balanced AND the Armour has never

> really given me energy. I had other effects, such as

> rapid heartbeat, sensitivity to heat, hunger, but no

> energy...

>

> ...He told me I might be thyroid resistant...even

> though my bloodwork shows me as HYPERthyroid, many of

> my symptoms are HYPOthyroid. OR is it that Armour

> doesn't work for me? Anyway, my concern is this: what

> if I get the RAI and the Armour doesn't help me?? I

> won't have any of my own gland left to back me up at

> all. I'm confused and worried. Any thoughts?

>

> Thanks so much!

>

> M.

[Guest guest]

Please see the earlier emails below...I'm really

> leaning towards getting the RAI for my thyroid

> becasuse I'm so sick of the Hashimotos causing me to

> fluctuate. My mood in particular is so unpredictable

> anymore - sometimes I feel like I'm crazy.

This is from www.Merck.com

Radiation-Induced Thyroid Cancer

Thyroid tumors develop in people exposed to large amounts of

environmental thyroid radiation, as occurs from atomic bomb blasts,

nuclear reactor accidents, or incidental thyroid irradiation due to

radiation therapy. Tumors may be detected 10 yr after exposure, but

risk remains increased for 30 to 40 yr. Such tumors are usually

benign; however, about 7% are papillary thyroid carcinoma. The

tumors are frequently multicentric or diffuse.

Patients who had thyroid irradiation should undergo yearly thyroid

palpation, ultrasound, and measurement of thyroid autoantibodies (to

exclude Hashimoto's thyroiditis). A thyroid scan does not always

reflect areas of involvement.

If a nodule is found by ultrasound, fine-needle aspiration biopsy

should be performed. In the absence of suspicious or cancerous

lesions, many physicians recommend lifelong TSH-lowering doses of

thyroid hormone to suppress thyroid function and thyrotropinSome

Trade Names

THYTROPAR

More in Mosby's Drug Consult

secretion and possibly decrease the chance of developing a thyroid

tumor.

Surgery is required if fine-needle aspiration biopsy suggests

cancer. Near-total or total thyroidectomy is the treatment of

choice, to be followed by radioiodine ablation of any residual

thyroid tissue if a cancer is found (depending on the size,

histology, and invasiveness).

Now in case you do not know what Merck is, Merck is a medical

publication used by doctors and published by the medical profession.

April this year saw the lastest update and since the beginning of

November the web site has been updated.

They now include Radiation induced cancer in its own class of

cancer. It use to be included in a few of the other types of thyroid

cancer but now has its own classification..

To repeat the second paragraph above..

Patients who had thyroid irradiation should undergo yearly thyroid

palpation, ultrasound, and measurement of thyroid autoantibodies (to

exclude Hashimoto's thyroiditis). A thyroid scan does not always

reflect areas of involvement.

--------------------------------------

Now my own personal opinion..

With Hashi's the thyroid gland is attacked by antibodies that cause

inflammation, this inflammation destroys the thyroid gland..as the

gland is destroyed it releases stored up thyroid hormone..this

causes what is known as the Hashi's swing..you feel hypo..slowly

start feeling better, feel hpyer, then suddenly feel just a little

bit more hypo then before you started to feel better..

With RAI ( radiation danger aside) ..your thyroid uptakes iodine

which contains radiation, this radiation is used to kill thyroid

cells. Understand this is not a take a pill , it works over night

type of deal..the radiation works similair to the way the Hashi

antibodies work. They will not do RAI on some one who is hyper until

they bring the thyroid numbers down because of the increased risk of

thyroid storm..why? Because RAI kills of the thyroid cells, this

destruction causes inflammation which causes the thyroid to release

stored up hormones. Hashi's is already doing this to your

thyroid..only difference is RAI does it quicker most of the time

although some people have had to have RAI 2-3 times as it did not

kill enough cells..

-----------------------------------

I would look more towards the surgery end of things.. you have the

option of a total or partial thyroidectomy, and with a total most of

the antibodies to Hashi's will be removed with the

thyroid..antibodies are not produced in the thyroid gland and Hashi

antibodies sometimes will effect other parts of the body, but with

out a thyroid to attack the antibody numbers lower within about

3months...

----------------------------------

I know on mediboard those with Hashi's and surgery tend to do much

better overall..and have an easier time getting the medication

adjusted.

Kats3boys

[Guest guest]

I am soooo much with you on this one, IMHO. These glands are just too

baffling to deal with any more, as far as I'm concerned, especially when it

has advanced a ways.

Re: Radioactive Iodine for

Hashimotos/Thyroid resistance

> Please see the earlier emails below...I'm really

>> leaning towards getting the RAI for my thyroid

>> becasuse I'm so sick of the Hashimotos causing me to

>> fluctuate. My mood in particular is so unpredictable

>> anymore - sometimes I feel like I'm crazy.

>

> This is from www.Merck.com

>

> Radiation-Induced Thyroid Cancer

>

> Thyroid tumors develop in people exposed to large amounts of

> environmental thyroid radiation, as occurs from atomic bomb blasts,

> nuclear reactor accidents, or incidental thyroid irradiation due to

> radiation therapy. Tumors may be detected 10 yr after exposure, but

> risk remains increased for 30 to 40 yr. Such tumors are usually

> benign; however, about 7% are papillary thyroid carcinoma. The

> tumors are frequently multicentric or diffuse.

>

> Patients who had thyroid irradiation should undergo yearly thyroid

> palpation, ultrasound, and measurement of thyroid autoantibodies (to

> exclude Hashimoto's thyroiditis). A thyroid scan does not always

> reflect areas of involvement.

>

> If a nodule is found by ultrasound, fine-needle aspiration biopsy

> should be performed. In the absence of suspicious or cancerous

> lesions, many physicians recommend lifelong TSH-lowering doses of

> thyroid hormone to suppress thyroid function and thyrotropin

and possibly decrease the chance of developing a thyroid

> tumor.

>

> Surgery is required if fine-needle aspiration biopsy suggests

> cancer. Near-total or total thyroidectomy is the treatment of

> choice, to be followed by radioiodine ablation of any residual

> thyroid tissue if a cancer is found (depending on the size,

> histology, and invasiveness).

>

> --------------------------------------

>

> Now my own personal opinion..

> With Hashi's the thyroid gland is attacked by antibodies that cause

> inflammation, this inflammation destroys the thyroid gland..as the

> gland is destroyed it releases stored up thyroid hormone..this

> causes what is known as the Hashi's swing..you feel hypo..slowly

> start feeling better, feel hpyer, then suddenly feel just a little

> bit more hypo then before you started to feel better..

> With RAI ( radiation danger aside) ..your thyroid uptakes iodine

> which contains radiation, this radiation is used to kill thyroid

> cells. Understand this is not a take a pill , it works over night

> type of deal..the radiation works similair to the way the Hashi

> antibodies work. They will not do RAI on some one who is hyper until

> they bring the thyroid numbers down because of the increased risk of

> thyroid storm..why? Because RAI kills of the thyroid cells, this

> destruction causes inflammation which causes the thyroid to release

> stored up hormones. Hashi's is already doing this to your

> thyroid..only difference is RAI does it quicker most of the time

> although some people have had to have RAI 2-3 times as it did not

> kill enough cells..

> -----------------------------------

> I would look more towards the surgery end of things.. you have the

> option of a total or partial thyroidectomy, and with a total most of

> the antibodies to Hashi's will be removed with the

> thyroid..antibodies are not produced in the thyroid gland and Hashi

> antibodies sometimes will effect other parts of the body, but with

> out a thyroid to attack the antibody numbers lower within about

> 3months...

> ----------------------------------

> I know on mediboard those with Hashi's and surgery tend to do much

> better overall..and have an easier time getting the medication

> adjusted.

>

> Kats3boys

[Guest guest]

This may not work with everyone but I noticed that after taking Allegra it helped my suspected Hashis. So much so that the docs don't need to take it out now, like originally thought. The constant inflammation and swelling was due to me having constant reactions to things. Maybe that can help... if not, just know that we're here for you anyway and will support what ever decision that you make because ultimately, you'll be the one making it .

andrea

Radioactive Iodine for Hashimotos/Thyroid resistance> Hi everyone,>> Please see the earlier emails below...I'm really> leaning towards getting the RAI for my thyroid> becasuse I'm so sick of the Hashimotos causing me to> fluctuate. My mood in particular is so unpredictable> anymore - sometimes I feel like I'm crazy.>> Topper, I guess I'm ready to accept the risks> involved. But as I was thinking about it, I came up> with one more concern. Even though my thyroid isn't> dead yet, my doc has been treating me with Armour> Thyroid for the past year (fluctuating the dose with> my swings) in order to keep me "balanced". However, I> haven't really been balanced AND the Armour has never> really given me energy. I had other effects, such as> rapid heartbeat, sensitivity to heat, hunger, but no> energy...>> ...He told me I might be thyroid resistant...even> though my bloodwork shows me as HYPERthyroid, many of> my symptoms are HYPOthyroid. OR is it that Armour> doesn't work for me? Anyway, my concern is this: what> if I get the RAI and the Armour doesn't help me?? I> won't have any of my own gland left to back me up at> all. I'm confused and worried. Any thoughts?>> Thanks so much!>> M.

[Guest guest]

Hey everyone,

Thanks so much for your responses. Can I get more

thoughts from you? I have 2 docs...one has me on

Armour thyroid (60mg a day) and he told me I have to

be totally off it and still be hyper to be considered

for RAI. The other doc, I hate to admit, I lied to and

told him I'm no longer on it.

I just want this thing out of me!! I go hyper and hypo

so often that if I go off the Armour, I'm not sure

what my bloodwork will show at the time. What about

how I'm feeling? Don't I have a right to ask to get

the gland out of me?

If I stay on Armour to make the bloodwork look right

for RAI, will it hurt me?

Thanks soooo much!

*SIGH*

M.

> Radioactive

> Iodine for

> Hashimotos/Thyroid resistance

>

> > Hi everyone,

> >

> > Please see the earlier emails below...I'm really

> > leaning towards getting the RAI for my thyroid

> > becasuse I'm so sick of the Hashimotos causing

> me to

> > fluctuate. My mood in particular is so

> unpredictable

> > anymore - sometimes I feel like I'm crazy.

> >

> > Topper, I guess I'm ready to accept the risks

> > involved. But as I was thinking about it, I came

> up

> > with one more concern. Even though my thyroid

> isn't

> > dead yet, my doc has been treating me with

> Armour

> > Thyroid for the past year (fluctuating the dose

> with

> > my swings) in order to keep me " balanced " .

> However, I

> > haven't really been balanced AND the Armour has

> never

> > really given me energy. I had other effects,

> such as

> > rapid heartbeat, sensitivity to heat, hunger,

> but no

> > energy...

> >

> > ...He told me I might be thyroid

> resistant...even

> > though my bloodwork shows me as HYPERthyroid,

> many of

> > my symptoms are HYPOthyroid. OR is it that

> Armour

> > doesn't work for me? Anyway, my concern is this:

> what

> > if I get the RAI and the Armour doesn't help

> me?? I

> > won't have any of my own gland left to back me

> up at

> > all. I'm confused and worried. Any thoughts?

> >

> > Thanks so much!

> >

> > M.

>

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

I remember when I had my gall bladder out, my doc waited for ever to do the surgery. Every time I would see him, he'd say.. okay come back in 2 months... 3 months.. etc. Well, my health was slipping and I was slowly having to leave my job and losing more and more things. I told him one day, I said look... How much will this surgery cost? Around $7000, okay.. I'll tell you what.. you do the surgery because I'm losing my life here and I'll pay you out of pocket the whole thing, plus a tip. He said, well, it's not that simple.. I said, why not? lol It is MY body and MY life. Well, insurance may not cover it. I need to make sure they cover it. My response then was.... look, I can't work, I can't do anything anymore, my quality of life is crap.. my gall bladder NEEDS to come out... I know my body, I know it's telling me something's wrong. Do you want to be the person who doesn't listen??

You see... the whole time I was having trouble, my gall bladder was showing up fine in all of the tests. Well, when he finally said 'okay, let's do it' I looked on my report after and found that if they'd waited any longer, it could have ruptured because it was red and inflammed and a bit over normal size.

Of course, now I wonder how much of that was related to the crappy allergy laden food LOL. But my point is... you know your body better than anyone else. Make sure this is what you want and if it is, go through with a doc who will do it for you. Not just only that, but one who will do it right.

Good luck,

Radioactive> Iodine for > Hashimotos/Thyroid resistance> > > Hi everyone,> >> > Please see the earlier emails below...I'm really> > leaning towards getting the RAI for my thyroid> > becasuse I'm so sick of the Hashimotos causing> me to> > fluctuate. My mood in particular is so> unpredictable> > anymore - sometimes I feel like I'm crazy.> >> > Topper, I guess I'm ready to accept the risks> > involved. But as I was thinking about it, I came> up> > with one more concern. Even though my thyroid> isn't> > dead yet, my doc has been treating me with> Armour> > Thyroid for the past year (fluctuating the dose> with> > my swings) in order to keep me "balanced".> However, I> > haven't really been balanced AND the Armour has> never> > really given me energy. I had other effects,> such as> > rapid heartbeat, sensitivity to heat, hunger,> but no> > energy...> >> > ...He told me I might be thyroid> resistant...even> > though my bloodwork shows me as HYPERthyroid,> many of> > my symptoms are HYPOthyroid. OR is it that> Armour> > doesn't work for me? Anyway, my concern is this:> what> > if I get the RAI and the Armour doesn't help> me?? I> > won't have any of my own gland left to back me> up at> > all. I'm confused and worried. Any thoughts?> >> > Thanks so much!> >> > M.> > > > __________________________________________________________Cheap talk?Check out Yahoo! Messenger's low PC-to-Phone call rates.http://voice.yahoo.com

[Guest guest]

The trouble is that once the gland has "hardened", where all the damage has been done, it is irreversible at that point, no matter if we are on the proper amt of hormone presently. I have been having all kinds of trouble with it over this yr, even though my #s are better, and I know that my allergies probably have a lot to do with that. Trouble is that it is happening repeatedly, even with me taking the Allegra, which I consider to be the best safest antihistamine on the market, and this tells me that those antibodies are still having a field day. If the gland "dies" at an enlarged grotesque size, instead of in the shrunken state, we're talking about almost marble here, and then there is nothing you can do to change the size of a dead hardened gland, it won't even shrink any more, once it's reached this state, whatever yr or month that is. That's why I would always opt for surgery, when faced with that day. Think how close the carotid arteries are to something that big, it makes me shudder. I need pictures made, lol. Thanks for the support.

Re: Radioactive Iodine for Hashimotos/Thyroid resistance

With Hashi's, you don't WANT your gland to back you up, you want it to remain "silent".

[Guest guest]

>

> Hey everyone,

>

> Thanks so much for your responses. Can I get more

> thoughts from you? I have 2 docs...one has me on

> Armour thyroid (60mg a day) and he told me I have to

> be totally off it and still be hyper to be considered

> for RAI. The other doc, I hate to admit, I lied to and

> told him I'm no longer on it.

>

> I just want this thing out of me!! I go hyper and hypo

> so often that if I go off the Armour, I'm not sure

> what my bloodwork will show at the time. What about

> how I'm feeling? Don't I have a right to ask to get

> the gland out of me?

>

> If I stay on Armour to make the bloodwork look right

> for RAI, will it hurt me?

>

> Thanks soooo much!

>

> *SIGH*

>

> M.

>

Do you have a goiter or nodules? Usually you can get the gland

removed because of nodules or because of the goiter.. even if the

goiter is not large enough to cause problems you can get it removed

for cosmetic reasons..

Kats3boys

[Guest guest]

LOL you're welcome!! Good luck .

Re: Radioactive Iodine for Hashimotos/Thyroid resistance

With Hashi's, you don't WANT your gland to back you up, you want it to remain "silent".