's Disease

May 14, 2003

Hi, Nat.

I think it's unlikely that you have 's disease. Your liver

enzymes are normal, and you don't exhibit the serious motor

neurological symptoms or psychiatric features that are

characteristic of 's disease. Furthermore, if you had

's disease, it would likely have shown up earlier in your life.

I suspect that your ceruloplasmin and copper results are further

manifestations of malabsorption. I think the most productive area

to work on is to try to understand why your digestive system is not

absorbing a wide variety of nutrients well, and to fix that.

Nevertheless, if you are still concerned that 's disease might

be a possibility, the tests to run are a slit lamp test by an

ophthalmologist to see if you have characteristic copper deposition

in the corneas of your eyes, and a measurement of the copper level

in the urine, which is often high in 's disease. Beyond those

is a liver biopsy to look for high levels of copper in the liver.

But as I said, I would suspect malabsorption first, in view of your

other test results and the stability of your weight.

Rich

> Hi,

>

> Has anyone been tested for 's Disease? I just received my

> blood test results in the mail and they show below normal

> Ceruloplasmin and Copper levels at low/normal.

>

> Rich, it looks as though the low ATP is the problem?

>

> I read this on Medscape:

>

> " In our patient, the low ceruloplasmin is compatible with the

> diagnosis of 's disease. 's disease is associated with

> low serum ceruloplasmin because of an abnormal ATPase that is

> required for copper to enter the secretory pathway, bind to

> apoceruloplasmin, and exit into the plasma bound to ceruloplasmin.

> Approximately 90% of all patients (85% of individuals with hepatic

> manifestations alone) have ceruloplasmin levels below normal.[4]

The

> level is relatively lower in patients with neurologic or

psychiatric

> disease.[5] Low-normal levels (20-22 mg/dL) are found in 5% to 15%

of

> patients with 's disease for 2 reasons: (1) ceruloplasmin is

an

> acute-phase reactant and therefore may increase because of

infection

> or inflammation; and (2) rather than measuring oxidase activity,

some

> laboratories use immunologic assays that measure both

ceruloplasmin

> and apoceruloplasmin in the serum.[1] Pregnancy or exogenous

> estrogens may also elevate otherwise low ceruloplasmin levels into

> the normal range. False positives (ie, low ceruloplasmin levels)

can

> occur in patients with nephrotic syndrome, protein-losing

> enteropathy, malabsorption, or severe malnutrition, as well as in

> patients with nonwilsonian fulminant hepatic failure, secondary to

> diminished hepatic synthetic function. Also, 10% of individuals

who

> are heterozygous for 's disease have low ceruloplasmin

levels. "

>

> Thanks,

> Nat

June 16, 2008

hi

why do you think you have s disease? I don't think it's a real disease! If you are hypo then you might be hypo! (and iodine deficient). are you taking iodine?

my TSH was always low, even after a partial thyroidectomy and lifelong hypo syptoms, so I could never get treatment. I actually borrowed some Armour from a friend, then went to a (flaky) alternative doc and told him I needed a new Rx. That works sometimes! go to a doc and tell them you are on meds and need a new Rx!

Gracia

Hi, I think I have 's Disease as I am Hypo and seem tohave almost every symptom listed. Has anyone ever tried the Gland Formula from http://www.healthherbs.com and has it helped?If yes, did you also need another thyroid supplement?This is what is in the formula. Gland Formula provides iodine and raw adrenal concentrates which may help with thyroid function. Thyroid Boost contains raw thyroid concentrate including thyroid hormones (Thyroxin, T4 free). This product is designed to help support T4 and boost T3 thyroid hormones. Raw glandular concentrates are from South American or New Zealand farm raised, grass fed cattle. All batches are analyzed for any contaminants. Free of BSE. Thank you for any info you can provide. angelatmysidelocalnet

June 16, 2008

Hi Gracia, The reason I feel I have 's Disease is because of the list of symptoms. (see below)

I have almost every one of them.

I don't think my thyroid is completely shot, but I've noticed for the last ten years the eyebrows thinning, the hair thinning and it is all I can do to make myself get up off the sofa and go do something.

And of course, I have put on a lot of extra weight.

For the last ten years especially, I have had no interest in anything, plus a lot of "pain" everywhere. And practically every symptom on that list.

About a month ago I started on losol, worked up to nine drops a day. I had a mild Bromide reaction and cut back to six drops a day.

I'm afraid to do the salt loading as I have always retained fluid (swollen legs, feet) and now have lympedema in my right arm and leg as a result of having breast cancer surgery about fifteen years ago.

After the first initial engery burst from the losol, I am back to being listless.

I have not been to a doctor for my thyroid problems because I don't have health insurance and won't be on medicare for another year.

But I think the symptoms pretty much speak for itself.

I am taking a lot of good brand supplements and am seriously leaning toward the Nascent Iodine and using the Gland Formula.

I was hoping someone would have had some experience with these products. Thanks for your reply

angelatmyside@...

Symptoms from Dr. Wison's description:

These symptoms can include severe fatigue, headache and migraine, PMS, easy weight gain, fluid retention, irritability, anxiety, panic attacks, depression, decreased memory and concentration, hair loss, decreased sex drive, unhealthy nails, constipation, irritable bowel syndrome, dry skin, dry hair, cold and/or heat intolerance, low self-esteem, irregular periods, chronic or repeated infections, and many other complaints

>> > hi> why do you think you have s disease? I don't think it's a real disease! If you are hypo then you might be hypo! (and iodine deficient). are you taking iodine? > my TSH was always low, even after a partial thyroidectomy and lifelong hypo syptoms, so I could never get treatment. I actually borrowed some Armour from a friend, then went to a (flaky) alternative doc and told him I needed a new Rx. That works sometimes! go to a doc and tell them you are on meds and need a new Rx!> Gracia> > Hi, I think I have 's Disease as I am Hypo and seem to> have almost every symptom listed. > > Has anyone ever tried the Gland Formula from > http://www.healthherbs.com and has it helped?> > If yes, did you also need another thyroid supplement?> > This is what is in the formula. > > Gland Formula provides iodine and raw adrenal concentrates which may > help with thyroid function. > > Thyroid Boost contains raw thyroid concentrate including thyroid > hormones (Thyroxin, T4 free). > > This product is designed to help support T4 and boost T3 thyroid > hormones. > > Raw glandular concentrates are from South American or New Zealand > farm raised, grass fed cattle. > > All batches are analyzed for any contaminants. Free of BSE. > > Thank you for any info you can provide. > angelatmyside@...>

June 16, 2008

If you have had breast cancer plus all those symptoms of hypo I think you will need Iodoral/Lugols 50--100mg. have you looked at http://www.breastcancerchoices.org ? maybe your TSH willl go up and then doc will give you thyroid meds too. ppl here have reported that salt loading actually reduces swelling. I am glad you have found your way here.

Gracia

Hi Gracia, The reason I feel I have 's Disease is because of the list of symptoms. (see below)

I have almost every one of them.

I don't think my thyroid is completely shot, but I've noticed for the last ten years the eyebrows thinning, the hair thinning and it is all I can do to make myself get up off the sofa and go do something.

And of course, I have put on a lot of extra weight.

For the last ten years especially, I have had no interest in anything, plus a lot of "pain" everywhere. And practically every symptom on that list.

About a month ago I started on losol, worked up to nine drops a day. I had a mild Bromide reaction and cut back to six drops a day.

I'm afraid to do the salt loading as I have always retained fluid (swollen legs, feet) and now have lympedema in my right arm and leg as a result of having breast cancer surgery about fifteen years ago.

After the first initial engery burst from the losol, I am back to being listless.

I have not been to a doctor for my thyroid problems because I don't have health insurance and won't be on medicare for another year.

But I think the symptoms pretty much speak for itself.

I am taking a lot of good brand supplements and am seriously leaning toward the Nascent Iodine and using the Gland Formula.

I was hoping someone would have had some experience with these products. Thanks for your reply

angelatmysidelocalnet

Symptoms from Dr. Wison's description:

These symptoms can include severe fatigue, headache and migraine, PMS, easy weight gain, fluid retention, irritability, anxiety, panic attacks, depression, decreased memory and concentration, hair loss, decreased sex drive, unhealthy nails, constipation, irritable bowel syndrome, dry skin, dry hair, cold and/or heat intolerance, low self-esteem, irregular periods, chronic or repeated infections, and many other complaints

---

..

June 16, 2008

The symptoms listed are all symptoms of hypothyroidism. As Gracia said, many physicians (even thyroid knowledgable alternative docs) and patients think 's Disease is a figment of Dr. 's mind. Yes, people with those symptoms do have a disorder, but it is hypothyroidism. He may have great stories from "successful patients" on his website, but there are many stories from disgruntled patients that you don't see there.

Perhaps you prefer the idea of 's Disease because you think you can treat it with his formulas and you don't have to see a doctor to do that or get a prescription. But hypothyroidism causes damage that you may not even be aware of yet, and the longer you put off effective treatment, the more damage your body experiences. Don't spend too much time trying out formulas and supplements before taking stock of any progress. Most overtly hypothyroid people need thyroid hormone. If you have subclinical hypothyroidism, you may get by with iodine. I can't comment on 's supplements.

You can order blood or saliva tests of thyroid function yourself from www.healthcheckusa.com or canary club, you don't need a doctor. You can order dessicated thyroid from overseas sources.

Lynn

Re: 's Disease

Hi Gracia, The reason I feel I have 's Disease is because of the list of symptoms. (see below)

I have almost every one of them.

I don't think my thyroid is completely shot, but I've noticed for the last ten years the eyebrows thinning, the hair thinning and it is all I can do to make myself get up off the sofa and go do something.

And of course, I have put on a lot of extra weight.

For the last ten years especially, I have had no interest in anything, plus a lot of "pain" everywhere. And practically every symptom on that list.

About a month ago I started on losol, worked up to nine drops a day. I had a mild Bromide reaction and cut back to six drops a day.

I'm afraid to do the salt loading as I have always retained fluid (swollen legs, feet) and now have lympedema in my right arm and leg as a result of having breast cancer surgery about fifteen years ago.

After the first initial engery burst from the losol, I am back to being listless.

I have not been to a doctor for my thyroid problems because I don't have health insurance and won't be on medicare for another year.

But I think the symptoms pretty much speak for itself.

I am taking a lot of good brand supplements and am seriously leaning toward the Nascent Iodine and using the Gland Formula.

I was hoping someone would have had some experience with these products. Thanks for your reply

angelatmyside@...

Symptoms from Dr. Wison's description:

These symptoms can include severe fatigue, headache and migraine, PMS, easy weight gain, fluid retention, irritability, anxiety, panic attacks, depression, decreased memory and concentration, hair loss, decreased sex drive, unhealthy nails, constipation, irritable bowel syndrome, dry skin, dry hair, cold and/or heat intolerance, low self-esteem, irregular periods, chronic or repeated infections, and many other complaints

>> > hi> why do you think you have s disease? I don't think it's a real disease! If you are hypo then you might be hypo! (and iodine deficient). are you taking iodine? > my TSH was always low, even after a partial thyroidectomy and lifelong hypo syptoms, so I could never get treatment. I actually borrowed some Armour from a friend, then went to a (flaky) alternative doc and told him I needed a new Rx. That works sometimes! go to a doc and tell them you are on meds and need a new Rx!> Gracia> > Hi, I think I have 's Disease as I am Hypo and seem to> have almost every symptom listed. > > Has anyone ever tried the Gland Formula from > http://www.healthherbs.com and has it helped?> > If yes, did you also need another thyroid supplement?> > This is what is in the formula. > > Gland Formula provides iodine and raw adrenal concentrates which may > help with thyroid function. > > Thyroid Boost contains raw thyroid concentrate including thyroid > hormones (Thyroxin, T4 free). > > This product is designed to help support T4 and boost T3 thyroid > hormones. > > Raw glandular concentrates are from South American or New Zealand > farm raised, grass fed cattle. > > All batches are analyzed for any contaminants. Free of BSE. > > Thank you for any info you can provide. > angelatmyside@...>

June 17, 2008

Hi Lynn,

Thank you for your imput. I only found the info on 's Disease through a link someone posted on the forum and it was the healthherbs.com link.

That's where I read about the 's Disease and the symptons were listed.

Other than that I don't know anything about this man or who or what he is and have not been or knew he had a website.

I know I am hypo as I do have a lot of the symptoms that I have researched but I don't think I am too severe but you are right, the way to go is to get a thyroid test.

I went to the website you recommended. These are the tests they offer: (listed below)

I listed them here because as I am completely in the dark about all of this I thought someone else might benefit from this info.

I just started researching about being hypo only this past month so I am trying not to take up too much space on the forum and trying to google as much info as I can.

I will say although that up till now, I thought Iodine would be all I would ever need but apparently there is a big difference between taking just Iodine and the Amour which is what I assume you mean by "dessicated thyroid."

Do you have any recommendations which test I should order?

Anti-Thyroid Antibodies Valued at: $92.00Our Price: $70.00 Test includes: Thyroglobulin Antibodies and Thyroid Peroxidase Antibodies

Thyroid Panel Valued at: $125.00Our Price: $45.00 American Thyroid Association recommends thyroid testing every 5 years for anyone over 35 years old.

Thyroid Panel II Valued at: $325.00Our Price: $85.00 Test includes: Free T3 (Triiodothyronine),Free T4 (Thyroxine), and TSH (Thyroid Stimulating Hormone).

Thyroid Stimulating Immunoglobulin (TSI) Valued at: $234.00Our Price: $98.00 Recommended for persons who have hyperthyroidism or Graves' Disease

TSH Valued at: $91.00Our Price: $37.00 TSH Test

The Thyroid-Stimulating Hormone Test, or TSH test, is the most important test used to determine thyroid function.

TSH is a chemical produced by the pituitary gland, which is found in the base of the brain. TSH determines how much thyroid hormone (T3 and T4) your thyroid produces.

High TSH typically means that you have an under-active thyroid (or hypothyroidism).

A TSH test is done for hypothyroidism in individuals who have experienced undiagnosable weight gain, lethargy, dry skin, constantly feeling cold, and constipation.

High TSH values can indicate that your thyroid is under-active, often caused by a failure of the gland itself.

An elevated TSH level can also mean that you have a tumor on the pituitary gland that is causing excess hormone production.

Thank you,

angelatmyside@...

> >> > > > hi> > why do you think you have s disease? I don't think it's a real disease! If you are hypo then you might be hypo! (and iodine deficient). are you taking iodine? > > my TSH was always low, even after a partial thyroidectomy and lifelong hypo syptoms, so I could never get treatment. I actually borrowed some Armour from a friend, then went to a (flaky) alternative doc and told him I needed a new Rx. That works sometimes! go to a doc and tell them you are on meds and need a new Rx!> > Gracia> > > > Hi, I think I have 's Disease as I am Hypo and seem to> > have almost every symptom listed. > > > > Has anyone ever tried the Gland Formula from > > http://www.healthherbs.com and has it helped?> > > > If yes, did you also need another thyroid supplement?> > > > This is what is in the formula. > > > > Gland Formula provides iodine and raw adrenal concentrates which may > > help with thyroid function. > > > > Thyroid Boost contains raw thyroid concentrate including thyroid > > hormones (Thyroxin, T4 free). > > > > This product is designed to help support T4 and boost T3 thyroid > > hormones. > > > > Raw glandular concentrates are from South American or New Zealand > > farm raised, grass fed cattle. > > > > All batches are analyzed for any contaminants. Free of BSE. > > > > Thank you for any info you can provide. > > angelatmyside@> >>

June 17, 2008

I will say although that up till now, I thought Iodine would be all I would ever need but apparently there is a big difference between taking just Iodine and the Amour which is what I assume you mean by "dessicated thyroid."

Armour is one brand of dessicated thyroid. Westhroid and Naturthroid are other brands, supposedly with fewer of the fillers and binders that can cause problems for some people. There are many generic forms of Armour available from various manufacturers, including Time Cap Labs (TCL) which my doctor likes. I like the use the broader term of dessicated thyroid rather than referring to the specific brand of Armour.

Yes, big difference between Iodine and Armour. If the thyroid is damaged from antibodies or prolonged nutritional insufficiency, or the pituitary isn't stimulating TSH production, or there is receptor resistance, or probably lots of other reasons, then only thyroid hormone will do the trick.

Do you have any recommendations which test I should order?

Right now, at a minimum, order the Thyroid Panel II. I think that initially it would also be useful to order the Anti-Thyroid Antibodies to see if antibodies are an issue for you.

You can get 10% off by using the code 12345.

Anti-Thyroid Antibodies Valued at: $92.00Our Price: $70.00 Test includes: Thyroglobulin Antibodies and Thyroid Peroxidase Antibodies

Thyroid Panel Valued at: $125.00Our Price: $45.00 American Thyroid Association recommends thyroid testing every 5 years for anyone over 35 years old.

Thyroid Panel II Valued at: $325.00Our Price: $85.00 Test includes: Free T3 (Triiodothyronine),Free T4 (Thyroxine), and TSH (Thyroid Stimulating Hormone).

Thyroid Stimulating Immunoglobulin (TSI) Valued at: $234.00Our Price: $98.00 Recommended for persons who have hyperthyroidism or Graves' Disease

TSH Valued at: $91.00Our Price: $37.00 TSH Test

angelatmyside@...

Lynn

June 17, 2008

I would do the two tests I have in red below. Enter 12345 as the code and you will get 10% off. If you can afford it, I would add instead of the thryoid panel II because it gives you a bigger picture. Low iron / ferritin will cause issues with thyroid and your cholesterol many times will be elevated in hypo conditions too. The CBC will give you some good info as well.

VIP Plus II

Valued at: $590.00

Our Price: $125.00

Includes Total Cholesterol, HDL, LDL, and Ratios, Triglycerides, Glucose(Diabetes), Kidney, Liver, and Heart Functions, Potassium, Calcium, Uric Acid, Electrolytes, Iron, Ferritin, PLUS a CBC (Complete Blood Count) and Comprehensive Thyroid Profile II: Free T3, Free T4, and TSH (Thyroid Stimulating Hormone).