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Alison,

I've heard a lot of controversy about 's syndrome. I've only been able

to find negative views about it on the web. Can you give me a website to

check out that is more impartial. What is the treatment, and is it going for

approval by the FDA now? I'm very curious because I have the same problem, my

normal temp is 96.6, and I'm on Amour Thyroid too. I take 60 mg a day, how

much are you taking?

Thanks,

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In a message dated 12/11/98 11:08:38 AM Mountain Standard Time,

LymeFightr@... writes:

> I'm taking Lexvoyl .. is that T3?

I don't think so.

...............................................................................

.................................

Levothyroxine

Clinical Pharmacology:

The synthesis and secretion of the major thyroid hormones L-thyroxine (T4) and

L-triiodothyronine (T3) from the normally functioning thyroid gland are

regulated by complex feedback mechanisms of the hypothalamic-pituitary-thyroid

axis. The thyroid gland is stimulated to secrete thyroid hormones by the

action of thyrotropin (thyroid stimulating hormone, TSH) which is produced in

the anterior pituitary gland. TSH secretion is in turn controlled by

thyrotropin-releasing hormone (TRH) produced in the hypothalamus, circulating

thyroid hormones, and possibly other mechanisms. Thyroid hormones circulating

in the blood act as feedback inhibitors of both TSH and TRH secretion. Thus,

when serum concentrations of T3and T4 are increased, secretion of TSH and TRH

is increased Administration of exogenous thyroid hormones to euthyroid

individuals results in suppression of endogenous thyroid hormone secretion.

The mechanisms by which thyroid hormones exert their physiologic actions have

not been completely elucidated. T4and T3 are transported into cells by passive

and active mechanisms. T3 in cell cytoplasm and T3 generated from T4 within

the cell diffuse into the nucleus and bind to thyroid receptor proteins, which

appear to be primarily attached to DNA. Receptor binding leads to activation

or repression of DNA transcription, thereby altering the amounts of mRNA and

resultant proteins. Changes in protein concentrations are responsible for the

metabolic changes observed in organs and tissues.

Thyroid hormones enhance oxygen consumption of most body tissues and increase

the basal metabolic rate and metabolism of carbohydrates, lipids, and

proteins. Thus, they exert a profound influence on every organ system and are

of particular importance in the development of the central nervous system.

Thyroid hormones also appear to have direct effects on tissues, such as

increased myocardial contractility and decreased systemic vascular resistance.

The physiologic effects of thyroid hormones are produced primarily by T3, a

large portion of which is derived from the from the deiodination of T4 in

peripheral tissues. About 70 to 90 percent of peripheral T3 is produced by

monodeoidination of T4 at the 5' position (outer ring). Peripheral

monodeiodination of T4 at the 5 position (inner ring) results in the formation

of reverse triiodothyronine (rT3), which is calorigenically inactive.

Pharmacokinetics:

Few clinical studies have evaluated the kinetics of orally administered

thyroid hormone. In animals, the most active sites of absorption appear to be

the proximal and mid-jejunum. T4 is not absorbed from the stomach and little,

if any, drug is absorbed from the duodenum. There seems to be no absorption of

the T4 from the distal colon in animals. A number of human studies have

confirmed the importance of an intact jejunum dileum for T4 absorption and

have shown some absorption from the duodenum. Studies involving radioiodinated

T4 fecal tracer excretion methods, equilibration, and AUC methods have shown

that absorption varies from 48 to 80 percent of the administered dose. The

extent of absorption is increased in the fasting state and decreased in

malabsorption syndromes, such as sprue. Absorption may also decrease with age.

The degree of T4 absorption is dependent on the product formulation as well as

on the character of the intestinal contents, including plasma protein and

soluble dietary factors, which bind thyroid hormone making it unavailable for

diffusion. Decreased absorption may result from administration of infant

soybean formula, ferrous sulfate, sodium polystyrene sulfonate, aluminum

hydroxide sucralfate, or bile acid sequestrants. T4 absorption following

intramuscular administration.

Distribution of thyroid hormones in human body tissues and fluids has not been

fully elucidated. More than percent of circulating hormones is bound to serum

proteins, including thyroxine-binding globulin(TGB), thyroxine-binding

prealbumin (TBPA), and albumin (TBA). T4 is more extensively and firmly bound

to serum proteins than is T3. Only unbound thyroid hormone is metabolically

active. The higher affinity of TGB and TBPA for T4 partly explains the higher

serum levels, slower metabolic clearance, and longer serum elimination half-

life of this hormone.

Certain drugs and physiologic conditions can alter the binding of thyroid

hormones to serum proteins and/or the concentrations of the serum proteins

available for thyroid hormone binding. These effects must be considered when

interpreting the results of thyroid function tests. (See Drug Interactions and

Laboratory Test Interactions.)

T4 is eliminated slowly from the body, with a half-life of 6 to 7 days. T3 has

a half-life of 1 to 2 days. The liver is the major site of degradation for

both hormones. T4 and T3 are conjugated with glucuronic and sulfuric acids and

excreted in the bile. There is an enterohepatic circulation of thyroid

hormones, as they are liberated by hydrolysis in the intestine and reabsorbed.

A portion of the conjugated material reaches the colon unchanged, id

hydrolyzed there, and is eliminated as free compounds in the feces. In man,

approximately 20 to 40 percent of T4 is eliminated in the stool. About 70

percent of the T4 secreted daily is deiodonated to yield equal amounts of T3

and rT3. Subsequent deiodination of T3 and rT3 yields multiple forms of

diiodothyronine. A number of other minor T4 metabolites have also been

identified. Although some of the metabolites have biological activity, their

overall contribution to the therapeutic effect of T4 is minimal.

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Syre thing, Liz. She definitely recognizes it. I don't know how rigorously she

treats it but she was the one who first told me about it, and that it looks like

I

have it!

Look for my E-Mail!

Alison

L10Graham@... wrote:

> From: L10Graham@...

>

> > Date: Fri, 11 Dec 1998 00:28:40 -0500

> > From: Alison E Schettini <alison7@...

>

> > Did your doctor ever consider 's Syndrome? It appears to be common

> > among Lyme patients and of course, low temps is one of the tip offs. <<

>

> Dear Alison,

>

> I cannot find 's Syndrome in the Merke Manual is it the same as 's

> disease? If it is I would be very interested to know more about it. I

> haven't heard it connected to Lyme but many years ago long before Lyme was

> ever heard of both my children were sent to a liver specialist in Philadelphia

> because illness and test results were suspect of 's disease. My son has

> had abnormal copper, ceruloplasm, liver ensymes and billirubin for over 20

> years but the 's got lost in the paperwork.

>

> Does your doctor recognize this? If so could you privately email his/her name

> and address to me. Maybe I could write him?

>

> Thanks, Liz (L10Graham@...)

>

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

>

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(and Liz)

I went back to find the case studies and did, alomg with a bunch of

other sites that seem helpful.

Here they are-apparently this is quite a wdiespread problem!

I do know that my doctor, one of the old malaria seekers, told me that

low body temps prevent Lyme from being killed. All I know is I always

feel feverish and always have a sub normal temp.

I am also on 60 mg of Armour Thyroid. What we really need though is, I

believe, a straight T4 but it is in the process of being manufactured

and hasn'r hit the market yet...one more cross to bear!!!

Alison

www.wilsonsyndrome.com

www.wilsonsyndrome.com/testimon.htm

www.orthomed.com/wilsons.htm

www.wilsonssyndrome.com/Syndrome.htm

http://pages.prodigy.com/ALSPROD/.htm

--

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As far as I understand from Dr. 's book, he recommends T3

treatment. 's theory is that the cells of these patients

fail to convert T4 into T3 which is the active thyroid hormone. A

related theory is that of Dr. Lowe about T 3 problems in

Fibromyalgia.. He sees fibromyalgia as a result of a genetic defect

that makes the cells resistant to T3, and his treatmet is, therefore, to

give huge doses of T3 to overcome this resistance. Since my lyme

symptoms are indistinguishable from fibromyalgia,, this interests me.

I know I should go back to the literature to verify this before putting

it out on the list - but I'm too tired right now.- and I'm as sure as I

ever am of anything that this is accurate. IIf anyoe is interested I

can dig up the information and figure out how you can get hold of it.

I just started on armour thyroid which has T3 in it. There has been no

miracle cure as yet. I would love to hear of other people's thyroid

experiences. I really think there is something to all of this, and am

wondering whether to just go to staight T3 treatent.

Ellen.

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Inside Edition did a piece just yesterday on 's Syndrome

you might check the internet for their web site and see if it will

have links that might give you more information. Sorry, I so seldom

watch t.v. I can't even tell you what station the show is on.

Wishing us all health and freedom from pain,

both physical and emotional -

L10Graham@... wrote:

> From: L10Graham@...

>

> > Date: Fri, 11 Dec 1998 00:28:40 -0500

> > From: Alison E Schettini <alison7@...

>

> > Did your doctor ever consider 's Syndrome? It appears to be common

> > among Lyme patients and of course, low temps is one of the tip offs. <<

>

> Dear Alison,

>

> I cannot find 's Syndrome in the Merke Manual is it the same as 's

> disease?

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Sorry...braindead me!!! It IS T3 for 's, not T4!

I am not sure what Levoxyl is, though. I did check it in my PDR but it

didn't say. I guess that all the available thyroid meds on the market

are a combination of T3 and T4 right now.

Alison

--

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  • 1 year later...
Guest guest

Sheila,

The Lyme Alliance site has info on 's, here is the url and the

article:

http://www.lymealliance.org/Medical/MedCategory7/med12/med12.html

CHAT WITH A LYME-LITERATE PHYSICIAN

Recently, we were privileged to have the opportunity to discuss some of the

complications of treating Lyme disease with a physician who has dealt with

many Lyme disease patients. Because of the prevailing atmosphere in this

country for physicians who are diagnosing and treating this disease, we are

not publishing the name of this doctor. However, we are offering the

information he has provided, in hope that it may prove to be an avenue worth

pursuing for others in their struggles with overcoming Lyme disease. This

first segment deals with a thyroid condition called 's Syndrome. In

June, we will offer a segment dealing with chronic candidiasis, and his

treatment protocol for this problem. Our last segment in July will be a

short article on dealing with digestive enzymes. Our thanks to this

physician for being willing to share this information with the Lyme

community, as well as for being among the doctors who have been there for

us, the Lyme patient.

WILSON'S SYNDROME

Q. Doctor, thank you for agreeing to share information about 's

Syndrome with our readers. Since 's Syndrome is a thyroid disorder,

would you please first clarify what the function of the thyroid is?

A. The thyroid can be described as the thermostat for the whole body. It

tells each one of your three or four trillion cells how fast or slow to

work. The faster they work, the higher your temperature, and the slower they

work, the lower your temperature will be. The thyroid is under the watchful

eye of the pituitary gland, which resides in your head and is constantly

sampling the bloodstream. If it does not detect enough thyroid hormone in

the bloodstream, it sends out a signal. This signal is called thyroid

stimulating hormone, or TSH, and tells your thyroid to work harder. One of

the ways it will work harder is by getting bigger, and thus one develops

goiter, or a swelling in the neck. There are now blood tests that can check

for TSH, and this is often the main test done by physicians. If the TSH test

is normal, then it's assumed that the person's thyroid is normal, also.

Q. What was the circumstances that led up to your treating patients for

's Syndrome?

A. When I first began practicing some twenty years ago, I would see many

people who had been on thyroid medication for many years, either for fatigue

or their physician had found their basal metabolic rate to be slow. In

medical school, I was taught that if blood tests are normal one does not

need extra thyroid. However, I found with the majority of these people, even

though their blood tests would be normal without the thyroid medication,

they would soon come back complaining of a lot of symptoms consistent with

hypothyroidism: hair loss, weight gain, fatigue, and dry skin. When I would

put them back on the thyroid medication, they would again improve.

About twelve years ago, I received some information about Dr. Broda '

contention that you could have normal blood tests, but still have slow

metabolism. His method of diagnosing this was taking your underarm

temperature first thing in the morning, and if it was consistently below

97.8, he found a trial of thyroid medication to be very beneficial. I also

found this to be the case, but I still didn't understand exactly why. I

assumed it had something to do with the individual cellular uptake of the

thyroid hormone.

Last year, at the Lyme Symposium in Boston, I talked with a physician who

said that he's had excellent results by treating his Lyme patients for

's Syndrome. I read the information he gave me, as well as the

Doctor's Manual for 's Syndrome, named for the discoverer, E. Denis

, MD. He had described this condition about fifteen years previously,

and it seemed to explain on a metabolic level what I was observing.

Q. How does a person develop 's Syndrome?

A. The thyroid produces an inactive hormone called T4. The T4 is then

activated to an active form called T3 in peripheral tissues, such as the

kidneys or liver. When the body is under stress for various reasons, such as

acute or chronic illness, or because of a fasting state, the body will try

to conserve energy by changing less T4 into the active T3. With less T3, the

cells of the body slow down as a protection. When the stress has been

removed, the process is supposed to reverse itself, but often it does not.

Instead, the same enzyme that breaks down T4 into T3 will now change the T4

into something called reverse T3, which is broken down into an inactive

product.

Q. How is this Syndrome diagnosed?

A. If the patient has symptoms for hypothyroidism although his blood tests

are normal, he is instructed to take his temperature three times a day,

beginning three hours after he gets up, using a glass mercury thermometer

under the tongue, for seven days, and then average the temperatures. If it's

averaging 97.8 or below, the idea of 's Syndrome needs to be

considered. Women should do this during the first two weeks of their

menstrual cycle, as the temperature tends to be naturally higher during the

second two weeks. I might add that the Syndrome may coexist with true

hypothyroidism. In this case, thyroid tests may be abnormal, but you'll find

that the usually prescribed thyroid hormones may not entirely solve the

problem.

Q. How is 's Syndrome treated?

A. Dr. maintains that if a patient is given T3, the active hormone,

orally, the body's production of T4, and therefore it's conversion to

reverse T3, is decreased over time. This allows the whole system to

recalibrate, and, after a period of time, be able to depend on the thyroid

to work properly on its own.

On the other hand, if a patient is treated with a T4 containing medication,

such as Synthroid, which is total T4, or with a thyroid glandular, which is

a combination of T3 and T4, you can encourage the system to continue to run

in the wrong direction. According to Dr. , " 's Syndrome can be

followed as a persistent, maladaptive, stress-related, reversible impairment

in the conversion of T4 to T3. " There is a product called Cytomel that is

T3. The problem with this medication is when one puts it into the system, it

is quickly gone, so Dr. has formulated a timed-release T3 that must

be taken twice a day, twelve hours apart, pretty much to the minute. This

formula can only be obtained through compounding pharmacies. You must find

the proper dose by monitoring your oral temperature three times a day,

aiming for a temperature of around 98.6. Over a period of time, a person

would not need any more thyroid medication, and there is a special method

that is used to get a person's thyroid working properly.

Q. Do you find that many people with Lyme disease also have 's

Syndrome?

A. One would think that the majority of people with Lyme disease, because of

it's hit to the immune mechanism and its chronic debilitation, would

actually have 's Syndrome. I've found that it's not unusual for Lyme

patients to run average temperatures in the 96/97 degree range. What happens

when your temperature is lower than 98.6 is that your enzyme system does not

work nearly as well. this causes the characteristics and symptoms to occur.

Q. Does the same treatment you generally use work well for Lyme patients?

A. I find with Lyme patients that generally certain things work very well

for some people, and don't do anything at all for others. I find this to be

the case with T3 treatment for 's Syndrome, also. I think one of the

problems I run into with this treatment is due to the frontal lobe syndrome

that causes the brain 'fog' that Lyme patients tend to have. It's difficult

for them to take a medication on the minute twice a day. I usually have them

get a watch that will ring every twelve hours. There are other problems,

such as remembering to check their temperature three times a day and

documenting it, and being able to shake down the thermometer without having

it slip out of their fingers and smash to the floor, because of joint

problems.

I've had excellent results with some of my Lyme patients - therefore my

learning about 's Syndrome has been useful. However, for a physician,

it's quite difficult to follow, and I still consider myself in the learning

stage.

Q. Is there any other information about this Syndrome that may be

informative to our readers?

A. Yes, there is one other thing I'd like to mention. Often, in patients

running a low temperature who have not had Lyme disease for a long period of

time, it is possible to get their system to reset itself by taking the

strain off the system by treating the Lyme disease, avoiding having to treat

for 's Syndrome. Also, because of the complicated nature of treating

's Syndrome, if a person's temperature is low, I will often try to use

Armour Thyroid, which is a glandular type thyroid with both T4 and T3

present, at a small dose. Often, the temperature will come up and stay with

this regimen, without having to go to the 's Syndrome treatment.

As just an aside, often people with Lyme disease are concerned because they

are gaining so much weight, so they will go on a diet. This has the effect

of making the 's Syndrome worse and it slows the body down even

further. They find that they have to take a very small amount of calories to

lose any weight at all, and their fatigue will worsen. Dieting is

counter-productive.

Thank you for spending so much of your time with us on this subject, Doctor.

You have been extremely informative, and we're sure many Lyme patients will

benefit.

If any of our readers would like more information on 's Syndrome, you

can write to the 's Syndrome Foundation, P.O. Box 539, Summerfield,

Florida 34492-0539. There is a very good book available called " 's

syndrome: The Miracle of Feeling Well " . Send a check or money order for

$21.95 plus $4 shipping and handling to the Foundation, or order by credit

card at: (800) 533-5895, extension 210.

From: EJFISCH@... <EJFISCH@...>

>Sheila, 's' is a syndrome where the body has lost the ability to

>convert T4 into T3 we need both for proper Thyroid function. I will try to

>find some information to send you. you can also look it up on the Internet.

>One of the symptoms is a lowered body temperature but this can also be

caused

>by other reasons. Aids research has shown when our immune system goes into

>overdrive we convert from a cellular immunity to a humural immunity which

is

>not the best for our bodies as it is always in overdrive. Low body

>temperature, the need for frequency to urinate more often, sleep issues,

and

>many more are part of the problem

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  • 1 year later...
Guest guest

I have just finished reading www.wilsonssyndrome.com after hearing about it

in Stocktons book " Beyond Amalgam " .

In her book, she states " The person dealing with chronic jawbone cavitations

may, due to the prolonged stress to teh body, also be suffering from another

widespread but underdiagnosed condition: s syndrome. 's

Syndrome is a stress related thyroid disorder involving a functional

impairment in teh conversion of T4 to T3, the active thyroid hormone. Where

it is present, the body temperature is sub-normal and enzyme function

becomes impaired. This makes recovery from cavitatations, or any other

disorder, difficult. "

I'm wondering if anyone has tried treatment for s syndrome or knows

anythign about this.

Thanks,

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Guest guest

> From: " ~ ~ " <sbulmer@...>

> Where it is present, the body temperature is sub-normal and enzyme function

becomes impaired.

This makes recovery from cavitatations, or any other disorder, difficult. "

> I'm wondering if anyone has tried treatment for s syndrome or knows

anythign about this.

What " is " the alternative treatment for it?

My average temperature over the years has remained at about 97.2 within a few

tenths (normal for

me), and been as low as 95. Nothing I've tried has seemed to change it much

though I've not

checked it for quite awhile now.

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Guest guest

Hi,

If you read that whole site www.wilsonssyndrome.com it explains everything but

the treatment. For that info, you have to buy the " Doctors Manual " for $31 or

so. Or find someone who has tried it. I'm trying to do the latter b/c I'm just

spending too much money willy-nilly on trying to get out of the CFS rut.

SO, to answer your question, I don't know what the treatment is, other than it

involves time sustained T3 and no T4.

>

> From: ~ Rupp ~ <jrupprun@...>

> Date: 2002/06/15 Sat AM 03:00:40 EST

> " gallstones " <gallstones >

> Subject: Re: 's syndrome

>

> > From: " ~ ~ " <sbulmer@...>

>

> > Where it is present, the body temperature is sub-normal and enzyme function

becomes impaired.

> This makes recovery from cavitatations, or any other disorder, difficult. "

>

> > I'm wondering if anyone has tried treatment for s syndrome or knows

anythign about this.

>

> What " is " the alternative treatment for it?

>

> My average temperature over the years has remained at about 97.2 within a few

tenths (normal for

> me), and been as low as 95. Nothing I've tried has seemed to change it much

though I've not

> checked it for quite awhile now.

>

>

>

> Learn more from our experience, more then 200 liver

> flush stories: http:///messages/gallstones-testimonials

>

> Liver Cleanse Recipe: http://www.CureZone.com/cleanse/liver/

> Liver Flush FAQ: http://curezone.com/forums/forum.asp?ForumID=73

>

> Images:

> http://CureZone.com/image_gallery/cleanse_flush/

> http://CureZone.com/image_gallery/intrahepatic_stones/

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> http://DrHulda.com

> http://www.liverdoctor.com/

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> http://www.cyberpog.com/health/index.htm

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Guest guest

Natural thyroid. That low of a temperature is indicative of low

thyroid. Dawn

>

> What " is " the alternative treatment for it?

>

> My average temperature over the years has remained at about 97.2

within a few tenths (normal for

> me), and been as low as 95. Nothing I've tried has seemed to

change it much though I've not

> checked it for quite awhile now.

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Guest guest

With a low temperature, I would also consider mitochondrial dysfunction and

adrenal fatigue. People always first think of thyroid but I think anything

that impairs your cellular metabolism will affect your temperature. Am I

making any sense?

----- Original Message -----

From: " azdmarie " <nortons@...>

<gallstones >

Sent: Monday, June 17, 2002 2:18 PM

Subject: Re: 's syndrome

> Natural thyroid. That low of a temperature is indicative of low

> thyroid. Dawn

> >

> > What " is " the alternative treatment for it?

> >

> > My average temperature over the years has remained at about 97.2

> within a few tenths (normal for

> > me), and been as low as 95. Nothing I've tried has seemed to

> change it much though I've not

> > checked it for quite awhile now.

>

>

>

> Learn more from our experience, more then 200 liver

> flush stories: http:///messages/gallstones-testimonials

>

> Liver Cleanse Recipe: http://www.CureZone.com/cleanse/liver/

> Liver Flush FAQ: http://curezone.com/forums/forum.asp?ForumID=73

>

> Images:

> http://CureZone.com/image_gallery/cleanse_flush/

> http://CureZone.com/image_gallery/intrahepatic_stones/

>

> To unsubscribe, sned blank e-mail to:

gallstones-unsubscribe and then reply to confirmation

message!

>

> To Post message: gallstones

> Subscribe: gallstones-subscribe

>

> Web Sites for more information:

> http://DrHulda.org

> http://DrHulda.com

> http://www.liverdoctor.com/

> http://www.sensiblehealth.com/

> http://www.cyberpog.com/health/index.htm

> http://www.relfe.com/gall_stone_cleanse.html

> http://www.cleansingorsurgery.com/

>

> Group page: gallstones

>

> To change your subscription to digest send blank e-mail to:

gallstones-digest

> To change your subscription to NO-MAIL send blank e-mail to:

gallstones-nomail

> To change your subscription to NORMAL send blank e-mail to:

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> You are receiving this email because you elected to subscribe to the

Gallstones group on 's groups. By joining the list you agree to hold

yourself FULLY responsible FOR yourself!

> Have a nice day !

>

>

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  • 8 months later...
Guest guest

Thanks . I certainly don't wish to argue, but I understood that the

's Syndrome was specifically discredited by the American Thyroid

Association. I'm not sure whether the ATA is considered a reputable

organisation among members of this list, or whether ATA has changed its mind

about 's. If this has all been discussed before, please let me know

and I can do a search of the archives rather than clog up this list.

>

> Dear ,

>

> Personally, I think that chronic cough and lung sensitivity is related to

> hypothyroidism. I've had lung problems and lingering coughs and

> pneumonias/bronchitis episodes for as long as I've been hypothyroid. Dr.

> Denis , developer of treatment for 's Thyroid Syndrome, lists

> asthma as a symptom of hypothyroidism. If you haven't looked at that

> website, and since you mention you've had to increase your meds twice, you

> might find some interesting information for yourself there.

> www.wilsonssyndrome.com

>

> is now offering herbal care products for specific maladys related to

> long-term or severe untreated hypothyroidism, which is what a lot of us have

> suffered through since our blood tests have always read normal and we've been

> refused medicine. He has a preparation that I'm going to try (as soon as I'm

> done with the one for the heart) called AsthmaCare. It's for lungs and

> bronchial problems. Here's the link to that info: <A

> HREF= " http://www.wilsonssyndrome.com/Products/AsthmaCare.htm " >

> http://www.wilsonssyndrome.com/Products/AsthmaCare.htm</A>

>

> Let me know if I can help in other ways,

> in LA

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