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In the typical Hashi's case the thyroid is [eventually] eliminated

without the risks associated with surgery or radiation. With what to me

appear to wild swings in TSH readings and hyper symptoms in very short

periods of time with small T4 dosage changes I really don't know what to

say. Although surgical or radioactive destruction of the thyroid gland

are not to my knowledge done in most cases of Hashimoto's I guess that

if you have extreme difficulties in getting your T4 dose to a level that

will allow you to maintain a reasonable TSH and symptom level then that

might be an option you would want to discuss with your doctor.

I guess I really should be a doctor. Then you could pay me a ton of

money to tell you I really don't have a clue what's going on! [ggg]

Best,

..

..

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

> westieabbey <westieabbey>

>

>

> Sat Jan 1, 2011 12:29 pm (PST)

>

>

>

>

> Thank you . It is confusing isn't it? I understand what you're

> saying about dosing being a PITA. Because of that, I'm surprised

> doctors don't suggest removing the thyroid surgically while we're

> younger, rather than waiting until we're older, when surgery could be

> riskier. Since we know it isn't going to get better, is there really a

> benefit to keeping it when it seems unlikely it can remain stable?

>

> I have a friend who had a non-malignant growth on her thyroid, and

> surgery was done to remove it. She wasn't having trouble breathing or

> swallowing, so maybe it depends on the doctor.

>

> I don't think the Mayo Clinic doctor had a clue about the swelling

> either, since he said " maybe a time or two, " when I asked him if he'd

> seen this type of swelling before. It was not a definitive answer.

> Maybe I'm just weird. When I go back to the endocrinologist here, it

> will be interesting to hear what he has to say about it.

>

> I'm curious about how these doctors will respond to the fact that I

> canceled the biopsy here because I was tired of waiting, and had it

> done at the Mayo Clinic. I would much rather have had the diagnosis

> here, but the Mayo Clinic did in three days what these doctors

> couldn't or wouldn't do in four and one half months.

>

> Thanks for the good wishes and for writing back. Happy New Year to you

> and yours also.

>

> Barb

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Here's some info. I hope it helps.

 

http://www.drlowe.com/QandA/askdrlowe/antibody.htm

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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

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Hahahaha! Now you've got it . That's the first requirement of current

doctors.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: <res075oh@...>

Subject: Re: Good News

hypothyroidism

Date: Sunday, January 2, 2011, 10:20 AM

In the typical Hashi's case the thyroid is [eventually] eliminated

without the risks associated with surgery or radiation.  With what to me

appear to wild swings in TSH readings and hyper symptoms in very short

periods of time with small T4 dosage changes I really don't know what to

say.  Although surgical or radioactive destruction of the thyroid gland

are not to my knowledge done in most cases of Hashimoto's I guess that

if you have extreme difficulties in getting your T4 dose to a level that

will allow you to maintain a reasonable TSH and symptom level then that

might be an option you would want to discuss with your doctor.

I guess I really should be a doctor.  Then you could pay me a ton of

money to tell you I really don't have a clue what's going on! [ggg]

Best,

..

..

>       Posted by: " H " macbarb0503@...

>       <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

>       westieabbey <westieabbey>

>

>

>         Sat Jan 1, 2011 12:29 pm (PST)

>

>

>

>

> Thank you . It is confusing isn't it? I understand what you're

> saying about dosing being a PITA. Because of that, I'm surprised

> doctors don't suggest removing the thyroid surgically while we're

> younger, rather than waiting until we're older, when surgery could be

> riskier. Since we know it isn't going to get better, is there really a

> benefit to keeping it when it seems unlikely it can remain stable?

>

> I have a friend who had a non-malignant growth on her thyroid, and

> surgery was done to remove it. She wasn't having trouble breathing or

> swallowing, so maybe it depends on the doctor.

>

> I don't think the Mayo Clinic doctor had a clue about the swelling

> either, since he said " maybe a time or two, " when I asked him if he'd

> seen this type of swelling before. It was not a definitive answer.

> Maybe I'm just weird. When I go back to the endocrinologist here, it

> will be interesting to hear what he has to say about it.

>

> I'm curious about how these doctors will respond to the fact that I

> canceled the biopsy here because I was tired of waiting, and had it

> done at the Mayo Clinic. I would much rather have had the diagnosis

> here, but the Mayo Clinic did in three days what these doctors

> couldn't or wouldn't do in four and one half months.

>

> Thanks for the good wishes and for writing back. Happy New Year to you

> and yours also.

>

> Barb

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

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" I guess I really should be a doctor. Then you could pay me a ton of

money to tell you I really don't have a clue what's going on! [ggg]

LOL! I would rather pay you, Chuck, Roni, and others here, than my local

doctors . At least you're not indifferent like they are. I'v actually

learned more here than I have from them.

Barb

Re: Good News

hypothyroidism

Date: Sunday, January 2, 2011, 10:20 AM

In the typical Hashi's case the thyroid is [eventually] eliminated

without the risks associated with surgery or radiation. With what to me

appear to wild swings in TSH readings and hyper symptoms in very short

periods of time with small T4 dosage changes I really don't know what to

say. Although surgical or radioactive destruction of the thyroid gland

are not to my knowledge done in most cases of Hashimoto's I guess that

if you have extreme difficulties in getting your T4 dose to a level that

will allow you to maintain a reasonable TSH and symptom level then that

might be an option you would want to discuss with your doctor.

I guess I really should be a doctor. Then you could pay me a ton of

money to tell you I really don't have a clue what's going on! [ggg]

Best,

..

..

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

> westieabbey <westieabbey>

>

>

> Sat Jan 1, 2011 12:29 pm (PST)

>

>

>

>

> Thank you . It is confusing isn't it? I understand what you're

> saying about dosing being a PITA. Because of that, I'm surprised

> doctors don't suggest removing the thyroid surgically while we're

> younger, rather than waiting until we're older, when surgery could be

> riskier. Since we know it isn't going to get better, is there really a

> benefit to keeping it when it seems unlikely it can remain stable?

>

> I have a friend who had a non-malignant growth on her thyroid, and

> surgery was done to remove it. She wasn't having trouble breathing or

> swallowing, so maybe it depends on the doctor.

>

> I don't think the Mayo Clinic doctor had a clue about the swelling

> either, since he said " maybe a time or two, " when I asked him if he'd

> seen this type of swelling before. It was not a definitive answer.

> Maybe I'm just weird. When I go back to the endocrinologist here, it

> will be interesting to hear what he has to say about it.

>

> I'm curious about how these doctors will respond to the fact that I

> canceled the biopsy here because I was tired of waiting, and had it

> done at the Mayo Clinic. I would much rather have had the diagnosis

> here, but the Mayo Clinic did in three days what these doctors

> couldn't or wouldn't do in four and one half months.

>

> Thanks for the good wishes and for writing back. Happy New Year to you

> and yours also.

>

> Barb

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

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It all sounds very depressing and frightening to me Roni. I don't know where to

find a doctor who is qualified and interested enough to try anything different.

Maybe having no thyroid would be better. At least after the thyroid is removed

there wouldn't be swelling caused by antibodies, which according to the link you

sent could affect vision and who knows what else. My doctors wouldn't even do

an antibody test. Now that I've gone elsewhere and they will see I have

Hashimoto's, maybe they will, but what good does it do to know the antibodies

are high, if there is no way to lower them?

Since I've read this is the most common form of hypothyroidism, which is a

common condition, it seems like doctors would have more knowledge of how to

treat it. They sure aren't making any money by prescribing a generic

medication, so I don't see how it benefits them other than to get patients out

of the office.

My Dad had his thyroid removed when he was in his early twenties. I think it

had been overactive, because he was given a radioactive cocktail, and doctors

say that indicates it was. He lived the majority of his life on thyroid

replacement medication. He wasn't overweight, and didn't have any of the

problems associated with Hashimoto's. He died from unassociatd causes when he

was almost 80.

Barb

Re: Good News

Here's some info. I hope it helps.

http://www.drlowe.com/QandA/askdrlowe/antibody.htm

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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

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I always feel I learn something here. Its ben one of my biggest helpers.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: <res075oh@...>

Subject: Re: Good News

hypothyroidism

Date: Sunday, January 2, 2011, 10:20 AM

In the typical Hashi's case the thyroid is [eventually] eliminated

without the risks associated with surgery or radiation.  With what to me

appear to wild swings in TSH readings and hyper symptoms in very short

periods of time with small T4 dosage changes I really don't know what to

say.  Although surgical or radioactive destruction of the thyroid gland

are not to my knowledge done in most cases of Hashimoto's I guess that

if you have extreme difficulties in getting your T4 dose to a level that

will allow you to maintain a reasonable TSH and symptom level then that

might be an option you would want to discuss with your doctor.

I guess I really should be a doctor.  Then you could pay me a ton of

money to tell you I really don't have a clue what's going on! [ggg]

Best,

..

..

>       Posted by: " H " macbarb0503@...

>       <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

>       westieabbey <westieabbey>

>

>

>         Sat Jan 1, 2011 12:29 pm (PST)

>

>

>

>

> Thank you . It is confusing isn't it? I understand what you're

> saying about dosing being a PITA. Because of that, I'm surprised

> doctors don't suggest removing the thyroid surgically while we're

> younger, rather than waiting until we're older, when surgery could be

> riskier. Since we know it isn't going to get better, is there really a

> benefit to keeping it when it seems unlikely it can remain stable?

>

> I have a friend who had a non-malignant growth on her thyroid, and

> surgery was done to remove it. She wasn't having trouble breathing or

> swallowing, so maybe it depends on the doctor.

>

> I don't think the Mayo Clinic doctor had a clue about the swelling

> either, since he said " maybe a time or two, " when I asked him if he'd

> seen this type of swelling before. It was not a definitive answer.

> Maybe I'm just weird. When I go back to the endocrinologist here, it

> will be interesting to hear what he has to say about it.

>

> I'm curious about how these doctors will respond to the fact that I

> canceled the biopsy here because I was tired of waiting, and had it

> done at the Mayo Clinic. I would much rather have had the diagnosis

> here, but the Mayo Clinic did in three days what these doctors

> couldn't or wouldn't do in four and one half months.

>

> Thanks for the good wishes and for writing back. Happy New Year to you

> and yours also.

>

> Barb

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

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Roni, I'd be pretty cautious in taking Dr. Lowe's advice. A lot of what

he writes is not AFAIK supported by any credible research; and some

[such as the quote below] is I believe flatly contradicted by research:

..

> " Treatment with thyroid hormone usually suppresses anti-thyroid

> antibodies and slows or stops the process of autoimmune thyroiditis. "

..

There is to my knowledge no credible research anywhere supporting that

ANY product can effectively cure Hashimoto's [or at least put it into

permanent remission] as his statement seems to indicate. If anyone has

any credible support for such a claim I'd appreciate a link [one that

does not come from Dr. Lowe]. Everything I've seen indicates that

Hashimoto's eventually destroys the thyroid gland and treatment only

provides the T4 that the thyroid no longer provides in sufficient

quantity if at all. It does nothing to prevent the eventual destruction

of the thyroid gland.

Further, I've seen a number of references to the research that has been

done comparing the results of taking T4 alone to taking a combination of

T4 and T3. The results typically do not show any improvement above

chance or placebo.

We DO have quite a bit of anecdotal evidence that some people benefit

from a T4/T3 combination or T3 alone; but the number appears to be so

small that it is not picked up in the studies. You personally of course

apparently from all the evidence are one of those who DO need something

other than T4; but consider that for decades you couldn't get proper

treatment and I suspect that one of the reasons is that your condition

is so rare that your doctors had never even heard of it.

I'd also be suspicious of any doctor who trolls the internet for

patients. I would think any established doctor who is effective in his

practice would have far too many patients already to need to spend the

time [or even have the time to spend] seeking out patients on the internet.

Regards,

..

..

> Posted by: " Roni Molin " matchermaam@...

> <mailto:matchermaam@...?Subject=%20Re%3A%20Good%20News>

> matchermaam <matchermaam>

>

>

> Sun Jan 2, 2011 11:30 am (PST)

>

>

>

> Here's some info. I hope it helps.

>

> http://www.drlowe.com/QandA/askdrlowe/antibody.htm

> <http://www.drlowe.com/QandA/askdrlowe/antibody.htm>

>

> <>Roni

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IMHO the main reason we need to know if we have Hashimoto's is so we can

be prepared to react to the " roller coaster " effect we get as the

Hashimoto's waxes and wans as it typically does. That unfortunately

means that your T4 titration dosage is a moving target and that you

should probably have more frequent lab tests to see how you're doing

with your T4. It also probably means that you need to pay closer

attention to your symptoms so you can try to catch the swings sooner.

Those who are hypo but don't have Hashimoto's can typically titrate the

dosage until the lab results and symptoms are as desired and then

maintain that dosage for long periods of time; perhaps getting tested

only once per year. That just will not work if you have Hashimoto's.

Yes, it's a PITA; but by knowing you have it at least you have some way

to try to react to it.

Your personal case is IMHO in some ways similar to that of someone with

Hashimoto's; except that in your case the swings seem to occur much more

rapidly than I'd expect and from much smaller doses than I'd expect.

But what do I know...?

Luck,

..

..

>

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

> westieabbey <westieabbey>

>

>

> Sun Jan 2, 2011 7:45 pm (PST)

>

>

>

>

> It all sounds very depressing and frightening to me Roni. I don't know

> where to find a doctor who is qualified and interested enough to try

> anything different. Maybe having no thyroid would be better. At least

> after the thyroid is removed there wouldn't be swelling caused by

> antibodies, which according to the link you sent could affect vision

> and who knows what else. My doctors wouldn't even do an antibody test.

> Now that I've gone elsewhere and they will see I have Hashimoto's,

> maybe they will, but what good does it do to know the antibodies are

> high, if there is no way to lower them?

>

> Since I've read this is the most common form of hypothyroidism, which

> is a common condition, it seems like doctors would have more knowledge

> of how to treat it. They sure aren't making any money by prescribing a

> generic medication, so I don't see how it benefits them other than to

> get patients out of the office.

>

> My Dad had his thyroid removed when he was in his early twenties. I

> think it had been overactive, because he was given a radioactive

> cocktail, and doctors say that indicates it was. He lived the majority

> of his life on thyroid replacement medication. He wasn't overweight,

> and didn't have any of the problems associated with Hashimoto's. He

> died from unassociatd causes when he was almost 80.

>

> Barb

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IMHO the main reason we need to know if we have Hashimoto's is so we can

be prepared to react to the " roller coaster " effect we get as the

Hashimoto's waxes and wans as it typically does.

I agree . That's obviously what was happening with me, because I got so

hyper and my heart rate was unusually high. The doctor at the Mayo Clinic

called it Tachycardia. I was also losing weight easily, which as you know, is

not normal with hypothyroidism. I may keep taking one pill a day, and if I feel

like that, cut back to 1/2 pill for a while, since I have a better idea of

what's going on.

" Your personal case is IMHO in some ways similar to that of someone with

Hashimoto's; except that in your case the swings seem to occur much more

rapidly than I'd expect and from much smaller doses than I'd expect.

But what do I know...? "

More than I do. LOL!

I really hate this bump on my neck, and it seems there is nothing that can be

done about that either. I've read that taking thyroid replacement hormone can

sometimes make it smaller, or go away, but mine didn't appear until I had been

taking meds for about two months. The bump is th multi-nodular goiter. Since

the thyroid is going to be destroyed, and practically impossible to regulate, I

still don't understand the benefit of having it. Wouldn't it be easy to

regulate with one pill a day, with no thyroid at all?

Barb

Re: Good News

IMHO the main reason we need to know if we have Hashimoto's is so we can

be prepared to react to the " roller coaster " effect we get as the

Hashimoto's waxes and wans as it typically does. That unfortunately

means that your T4 titration dosage is a moving target and that you

should probably have more frequent lab tests to see how you're doing

with your T4. It also probably means that you need to pay closer

attention to your symptoms so you can try to catch the swings sooner.

Those who are hypo but don't have Hashimoto's can typically titrate the

dosage until the lab results and symptoms are as desired and then

maintain that dosage for long periods of time; perhaps getting tested

only once per year. That just will not work if you have Hashimoto's.

Yes, it's a PITA; but by knowing you have it at least you have some way

to try to react to it.

Your personal case is IMHO in some ways similar to that of someone with

Hashimoto's; except that in your case the swings seem to occur much more

rapidly than I'd expect and from much smaller doses than I'd expect.

But what do I know...?

Luck,

..

..

>

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

> westieabbey <westieabbey>

>

>

> Sun Jan 2, 2011 7:45 pm (PST)

>

>

>

>

> It all sounds very depressing and frightening to me Roni. I don't know

> where to find a doctor who is qualified and interested enough to try

> anything different. Maybe having no thyroid would be better. At least

> after the thyroid is removed there wouldn't be swelling caused by

> antibodies, which according to the link you sent could affect vision

> and who knows what else. My doctors wouldn't even do an antibody test.

> Now that I've gone elsewhere and they will see I have Hashimoto's,

> maybe they will, but what good does it do to know the antibodies are

> high, if there is no way to lower them?

>

> Since I've read this is the most common form of hypothyroidism, which

> is a common condition, it seems like doctors would have more knowledge

> of how to treat it. They sure aren't making any money by prescribing a

> generic medication, so I don't see how it benefits them other than to

> get patients out of the office.

>

> My Dad had his thyroid removed when he was in his early twenties. I

> think it had been overactive, because he was given a radioactive

> cocktail, and doctors say that indicates it was. He lived the majority

> of his life on thyroid replacement medication. He wasn't overweight,

> and didn't have any of the problems associated with Hashimoto's. He

> died from unassociatd causes when he was almost 80.

>

> Barb

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Barb,

You wrote:

> ... Maybe having no thyroid would be better....

For many, complete thyroid replacement is much more comfortable than the

instability of the Hashimoto's roller coaster.

> ... but what good does it do to know the antibodies are high, if

> there is no way to lower them?

It sometimes helps know how to interpret borderline, variable, or

inconsistent test results. Since the treatment is essentially the same,

with or without antibodies, for most of us the presence of antibodies

can be safely assumed without wasting money on another test.

Chuck

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So if I'm understanding you right Chuck, there won't be a need for antibody

tests in the future. That makes sense.

The roller coaster doesn't sound like much fun, but surgery doesn't either. It

would just be easier after recovery. There must be some reason doctors don't

recommend it. Is it that risky? I know all surgery is risky, but so is life.

Could it be part of trying to keep health care costs down, that no surgery be

performed unless absolutely necessary? I know in the past lots of patients have

had elective surgery that was covered by insurance.

Barb

Re: Good News

Barb,

You wrote:

> ... Maybe having no thyroid would be better....

For many, complete thyroid replacement is much more comfortable than the

instability of the Hashimoto's roller coaster.

> ... but what good does it do to know the antibodies are high, if

> there is no way to lower them?

It sometimes helps know how to interpret borderline, variable, or

inconsistent test results. Since the treatment is essentially the same,

with or without antibodies, for most of us the presence of antibodies

can be safely assumed without wasting money on another test.

Chuck

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Share on other sites

There is a " thyroidless " group here on in which there are folks discussing

the difficult time they are having trying to live without their thyroids. For

them, feeling good is not always as easy as just taking a pill.

Also keep in mind that without a functioning thyroid it's just a pill that

stands between you and death.

Many people with Hashis live all their lives with functioning (albeit poorly)

thyroid glands.

One thing that helps your thyroid is to make sure you have the optimal

vitamin/mineral and nutritional support it needs.

Marla

> > ... Maybe having no thyroid would be better....

>

> For many, complete thyroid replacement is much more comfortable than the

> instability of the Hashimoto's roller coaster.

>

> > ... but what good does it do to know the antibodies are high, if

> > there is no way to lower them?

>

> It sometimes helps know how to interpret borderline, variable, or

> inconsistent test results. Since the treatment is essentially the same,

> with or without antibodies, for most of us the presence of antibodies

> can be safely assumed without wasting money on another test.

>

> Chuck

>

>

>

>

>

>

>

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Getting depressed and frightened are the two things you really don't want to

allow yourself to do.

Both of them only exacerbaate any problem in the body - they are Stress!

 

I would try to make sure you are not eating any soy. It's found in almost any

processed food including bread, so you'll need to read labels. Also, try to stay

away from goitrogens at this time

till you straighten out your thyroid.

 

Here's some info on it. 

http://forums.about.com/n/pfx/forum.aspx?tsn=2 & nav=messages & webtag=ab-thyroid & ti\

d=32370

 

http://en.wikipedia.org/wiki/Goitrogen

 

I don't know what else to suggest. If you don't have cancer, in my opinion, I

would not have the thyroid removed. The thyroid pretty much controls the whole

body, and is a very important organ.

 

The main thing is not to panic. This is not an acute situation. Email me

directly I may have one more suggestion for you.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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

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, the mainstream doctors also advocate using levothyroxine, so he's not

saying anything different actually. He also didn't say it cures the hashimotos,

only that it suppresses the antibodies. I've read the mainstream sites and they

pretty much do the same thing, so in this instance he's right with them.

 

I would like her to have the benefit of a Reverse T3 test. The reason that for

decades no one knew what was going on with me was that no one tested for it.

Doctors typically don't test for it, and if they don't do the test they don't

see it. So people like me, and I'm sure there are a lot more than are known, get

mistreated or undertreated on a regular basis. I was lucky because it was my

Rheumatologist that agreed to test for it. He was shocked when he saw the

results, but he started me on the T3 protocol only, and I started to feel better

right away.

 

 

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: <res075oh@...>

Subject: Re: Good News

hypothyroidism

Date: Monday, January 3, 2011, 9:44 AM

Roni, I'd be pretty cautious in taking Dr. Lowe's advice.  A lot of what

he writes is not AFAIK supported by any credible research; and some

[such as the quote below] is I believe flatly contradicted by research:

..

> " Treatment with thyroid hormone usually suppresses anti-thyroid

> antibodies and slows or stops the process of autoimmune thyroiditis. "

..

There is to my knowledge no credible research anywhere supporting that

ANY product can effectively cure Hashimoto's [or at least put it into

permanent remission] as his statement seems to indicate.  If anyone has

any credible support for such a claim I'd appreciate a link [one that

does not come from Dr. Lowe].  Everything I've seen indicates that

Hashimoto's eventually destroys the thyroid gland and treatment only

provides the T4 that the thyroid no longer provides in sufficient

quantity if at all.  It does nothing to prevent the eventual destruction

of the thyroid gland.

Further, I've seen a number of references to the research that has been

done comparing the results of taking T4 alone to taking a combination of

T4 and T3.  The results typically do not show any improvement above

chance or placebo.

We DO have quite a bit of anecdotal evidence that some people benefit

from a T4/T3 combination or T3 alone; but the number appears to be so

small that it is not picked up in the studies.  You personally of course

apparently from all the evidence are one of those who DO need something

other than T4; but consider that for decades you couldn't get proper

treatment and I suspect that one of the reasons is that your condition

is so rare that your doctors had never even heard of it.

I'd also be suspicious of any doctor who trolls the internet for

patients.  I would think any established doctor who is effective in his

practice would have far too many patients already to need to spend the

time [or even have the time to spend] seeking out patients on the internet.

Regards,

..

..

>       Posted by: " Roni Molin " matchermaam@...

>       <mailto:matchermaam@...?Subject=%20Re%3A%20Good%20News>

>       matchermaam <matchermaam>

>

>

>         Sun Jan 2, 2011 11:30 am (PST)

>

>

>

> Here's some info. I hope it helps.

>

> http://www.drlowe.com/QandA/askdrlowe/antibody.htm

> <http://www.drlowe.com/QandA/askdrlowe/antibody.htm>

>

> <>Roni

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

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Surgery should always be done as a last resort. I have had surgeons even tell me

that. Anyone who wants to operate and remove an important organ of the body

unless it is imperitive to do so, in my opinion is very suspect.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

> ... Maybe having no thyroid would be better....

For many, complete thyroid replacement is much more comfortable than the

instability of the Hashimoto's roller coaster.

> ... but what good does it do to know the antibodies are high, if

> there is no way to lower them?

It sometimes helps know how to interpret borderline, variable, or

inconsistent test results. Since the treatment is essentially the same,

with or without antibodies, for most of us the presence of antibodies

can be safely assumed without wasting money on another test.

Chuck

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Thanks Marla. You're right. Since I have seen so much written about most

people taking a pill a day and being fine, I don't hear about those struggling

to survive without a thyroid. You make very good points, and I appreciate your

input.

Barb

Re: Good News

There is a " thyroidless " group here on in which there are folks discussing

the difficult time they are having trying to live without their thyroids. For

them, feeling good is not always as easy as just taking a pill.

Also keep in mind that without a functioning thyroid it's just a pill that

stands between you and death.

Many people with Hashis live all their lives with functioning (albeit poorly)

thyroid glands.

One thing that helps your thyroid is to make sure you have the optimal

vitamin/mineral and nutritional support it needs.

Marla

> > ... Maybe having no thyroid would be better....

>

> For many, complete thyroid replacement is much more comfortable than the

> instability of the Hashimoto's roller coaster.

>

> > ... but what good does it do to know the antibodies are high, if

> > there is no way to lower them?

>

> It sometimes helps know how to interpret borderline, variable, or

> inconsistent test results. Since the treatment is essentially the same,

> with or without antibodies, for most of us the presence of antibodies

> can be safely assumed without wasting money on another test.

>

> Chuck

>

>

>

>

>

>

>

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Thanks for the links and the suggestions Roni. I will read the information

thoroughly. It's interesting that people here know more about how to live with

thyroid disease than doctors. Not one doctor has mentioned making any changes

in diet, even though I asked them. They act like it doesn't make any difference

as long as we eat things in moderation.

I'm definitely not panicking, or even depressed or frightened now. I'm very

grateful to have received the good news that the biopsy was benign. Some of

what I read was frightening, because it painted such a negative picture of life

with Hashimoto's. Fortunately I haven't experienced very much of what was

described so far. Since every person's experience is different, maybe it won't

be as difficult to regulate as it is for some. At least I have hope that it may

not be.

Barb

Re: Good News

Getting depressed and frightened are the two things you really don't want to

allow yourself to do.

Both of them only exacerbaate any problem in the body - they are Stress!

I would try to make sure you are not eating any soy. It's found in almost any

processed food including bread, so you'll need to read labels. Also, try to stay

away from goitrogens at this time

till you straighten out your thyroid.

Here's some info on it.

http://forums.about.com/n/pfx/forum.aspx?tsn=2 & nav=messages & webtag=ab-thyroid & ti\

d=32370

http://en.wikipedia.org/wiki/Goitrogen

I don't know what else to suggest. If you don't have cancer, in my opinion, I

would not have the thyroid removed. The thyroid pretty much controls the whole

body, and is a very important organ.

The main thing is not to panic. This is not an acute situation. Email me

directly I may have one more suggestion for you.

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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There seems to be agreement on this also Roni. I guess I didn't realize how

serious it is to not have a thyroid, since I know people who have lived decades

without one. I thought the synthetic hormone would do the job of keeping

hormones in balance.

What I don't know is how those people who lived decades without thyroids

struggled or suffered. My grandmother was one of them, and she seemed cheerful,

active, and unaffected. The key word of course is seemed, because it's

something we never talked about. Another person I knew who didn't have a

thyroid was entirely different. He moved slowly and seemed depressed much of

the time. Also, it is scary to think about being dependent on a pill to live.

Barb

Re: Good News

Surgery should always be done as a last resort. I have had surgeons even tell me

that. Anyone who wants to operate and remove an important organ of the body

unless it is imperitive to do so, in my opinion is very suspect.

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>

> ... Maybe having no thyroid would be better....

For many, complete thyroid replacement is much more comfortable than the

instability of the Hashimoto's roller coaster.

> ... but what good does it do to know the antibodies are high, if

> there is no way to lower them?

It sometimes helps know how to interpret borderline, variable, or

inconsistent test results. Since the treatment is essentially the same,

with or without antibodies, for most of us the presence of antibodies

can be safely assumed without wasting money on another test.

Chuck

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What I don't know is how those people who lived decades without thyroids

struggled or suffered.

LOL! I just read what I wrote, and thought it was pretty funny, since no one

gets more than one.

Barb

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I'm glad that you're feeling a bit better about all this. There's no queston

that it is a P.I.T.A, but

such is life and it things could be a whole lot worse as my Grandma used to say.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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

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Yes, that's pretty funny. You should see some of the things I write. I cringe

when I read them.

One night it was late and I had taken my sleeping pill already and wanted to

email my son.

I didn't put a light on and thought I could do it with just the light from the

coputer screen because

I do touch typing, and don't look at the keys. Well, it seems I started out on

the wrong keys and sent a bunch of gibberish. His reply was Whaaaat? Now That

was funny.

 

 

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: H <macbarb0503@...>

Subject: Re: Good News

hypothyroidism

Date: Monday, January 3, 2011, 9:11 PM

What I don't know is how those people who lived decades without thyroids

struggled or suffered.

LOL!  I just read what I wrote, and thought it was pretty funny, since no one

gets more than one.

Barb

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Barb,

You wrote:

>

> So if I'm understanding you right Chuck, there won't be a need for

> antibody tests in the future. That makes sense.

Probably not. Some hypoT people and their doctors do like to know when

the antibodies are active, since they can come or go. I would tend to

assume that is when the symptoms are getting worse. The treatment is the

same; adjust the dosage to keep the TSH under control.

>

> The roller coaster doesn't sound like much fun, but surgery doesn't

> either....

I was not suggesting surgery for Hashimoto's. The roller coaster phase

is usually less than a year or two at the most. Once the gland is

destroyed, you just have to find the right replacement dose.

For people with Graves or hyperT, the preferred method for destroying

the thyroid is with radioactive iodine. With thyroid cancer or potential

cancer, they usually do surgery first and mop up with the iodine.

Chuck

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Barb,

You wrote:

>

> There seems to be agreement on this also Roni. I guess I didn't realize

> how serious it is to not have a thyroid, since I know people who have

> lived decades without one....

Most of the women in my family have lived multiple decades without any

thyroid function. I have gone over one decade. My son is an example of

one who has done well on T4 only following complete thyroidectomy and

radioactive iodine follow-up.

Most of the people that this list has shared with the thyroidless

group have more going on than just missing thyroid function. For

example, many seem to have T4-T3 conversion issues and need T3. The

levothyroxine treatment is based on the assumption that the liver

(mainly) and other organs will be able to efficiently convert the T4

taken orally into T3. This isn't true for about 5% of the hypoT

population, based on the number of prescriptions for T4 only versus

those with at least some T3. At least some fraction of that group

converts to ample T3 but makes too much RT3, as Roni does. RT3 actually

counteracts T3 by inertly filling T3 receptors.

Some people convert T4 to T3 effectively but have overactive binding

enzymes, which keep an excess fraction of both the T4 and T3 in a bound,

storage state circulating in the blood.

Chuck

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That's for sure!

Re: Good News

I'm glad that you're feeling a bit better about all this. There's no queston

that it is a P.I.T.A, but

such is life and it things could be a whole lot worse as my Grandma used to say.

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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

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The roller coaster phase

is usually less than a year or two at the most. Once the gland is

destroyed, you just have to find the right replacement dose.

Well that's good to know Chuck. I had no idea how long it might take. It's

surprising to me that so little is known about why it happens, and that there is

no way to stop it.

Barb

Re: Good News

Barb,

You wrote:

>

> So if I'm understanding you right Chuck, there won't be a need for

> antibody tests in the future. That makes sense.

Probably not. Some hypoT people and their doctors do like to know when

the antibodies are active, since they can come or go. I would tend to

assume that is when the symptoms are getting worse. The treatment is the

same; adjust the dosage to keep the TSH under control.

>

> The roller coaster doesn't sound like much fun, but surgery doesn't

> either....

I was not suggesting surgery for Hashimoto's. The roller coaster phase

is usually less than a year or two at the most. Once the gland is

destroyed, you just have to find the right replacement dose.

For people with Graves or hyperT, the preferred method for destroying

the thyroid is with radioactive iodine. With thyroid cancer or potential

cancer, they usually do surgery first and mop up with the iodine.

Chuck

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