From

[Guest guest]

,

In my opinion, you might be better off considering the Cleveland Clinic instead of the Mayo Clinic. I know Jerry (who I hope is still with the group) and some others are under the care of docs at the Cleveland Clinic and sing their praises. I will try to find the name of the hepatologist I saw at Mayo. He was very nice and really didn't know quite what to make about their pathologist reading my same liver biopsy slides so totally different from how the pathologist in Birmingham and the hepatologist at Vandy read it. However, I only spent maybe 20 minutes with him, so I don't have enough experience with him to be able to say if he is good or bad. I also have no experience at all with the Mayo transplant surgeons since I am nowhere near needing a transplant and hope never to be!

Just looked at Mayo's web site and the hep I saw was Dr. Gross. Here's a link.

http://www.mayoclinic.org/gi-rst/10022830.html

Here's the info on getting an appt.

The availability of appointments depends largely on your condition. Patients with urgent conditions or diagnoses are given priority.

For appointments or more information, call:

Gastroenterology appointment secretaries: (507) 284-2141 Central appointment office: (507) 284-2111

Here's info on becoming a patient at Mayo in Rochester.

http://www.mayoclinic.org/becomingpat-rst/

One thing I do have to say about Mayo is that there are numerous hotels in the area, many within walking distance. They range in price from about $25 a day up to any amount you'd like to spend. I stayed at the Executive Inn and my room was only $232 for the whole week including tax. The hotel was old and certainly not fancy, but it was clean and the people were nice. It also had a small fridge and microwave in the room. There's free shuttle service to all the Mayo facilities from the hotel and some hotels offer free shuttle service to and from the airport. The place I stayed at was only 3 blocks from the main Mayo facility so I walked it a couple of days. The entire Mayo facility is HUGE so be prepared for a lot of walking. I brought my rolling carry-on suitcase with me every day so I didn't have to lug my heavy purse, medical records, and/or any purchases I might have made at the many stores available.

Best of luck to you no matter where you choose to go. I do have to say that the nurses and staff at the Mayo were wonderful. I was admitted just overnight after my ERCP. The ERCP was done at Rochester Methodist Hospital but after the ERCP I was transported to Saint 's Hospital via ambulance for my overnight stay. This is customary. For some reason they do the ERCPs at one hospital but GI patients are kept overnight at the other hospital.

In the GI clinic, I originally saw Dr. Chari (for a total of maybe 10 minutes) and his resident, Dr. Lara, who actually completed his residency and was a full fledged GI doc on the 2nd day that I saw him. ly, Dr. Lara was a blooming idiot and if Dr. Chari agreed with the things Dr. Lara told me (as Dr. Lara said) then I certainly could not recommend Dr. Chari to anyone. Dr. Lara's last day at Mayo was the day of my 2nd visit with him and he was moving to Texas as a 'real' doc! I saw Dr. Lara and Dr. Chari initially on a Monday. I told the GI doctors that I thought my rheumatologist wanted me to see a rheumy at Mayo in addition to the GI docs because of the numerous autoimmune diseases that I have. They said they would set up the appt with the rheumy dept for me. However, by Wed morning, they had not set up an appt for me in the rheumy dept so when I saw Dr. Lara again on Wednesday I asked about it.

He asked me why I thought I needed to see a rheumatologist. I told him it was what my rheumy from home wanted because I have so many autoimmune diseases and a very strong family history of autoimmune diseases. My sis, daughter, and I each have 2 or more autoimmune diseases and when our hematologist did genetic testing on my sis and I, he found that we inherited a gene from each parent that can lead to autoimmune diseases. Weird since neither our mom or dad have any autoimmune diseases that we know of!

Anyway, Dr. Lara started off the appt by telling me that I don't really have a lot (if any) autoimmune diseases. Dr. Lara told me that I definitely do not have lupus because I have no rash on my face. Never mind that

1. Dr. Lara is a GI doc, NOT a rheumatologist

2. I was diagnosed with lupus almost 10 years ago

3. I DO have the typical butterfly rash on my face that often goes with lupus. It's just that it sometimes it is VERY prevalent and other times it is hardly noticeable with make-up on, especially since I use make-up designed to help hide the red of the rash. I told Dr. Lara that I have the butterfly rash and that if he sent me out in the sun or kept me under the UV lights in his office for a while, it would become more obvious

4. Prior to my lupus diagnosis, I had a biopsy of the rash on my face - they took two chunks of skin, which each required 3-4 stitches. The biopsy came back stating the rash was consistent with lupus.

Despite all this, Dr. Lara was insistent that I absolutely do not have lupus and both of the rheumatologists that have said I do are wrong! Oh, also when I mentioned having an autoimmune clotting disorder (antiphospholipid syndrome), he said, "Oh, that's just part of having lupus. Everyone with lupus has that." NOT TRUE!

Next, he told me that I'd probably never really had an attack of pancreatitis. Never mind that

1. I've had numerous episodes of attacks of acute pancreatitis with clearly elevated pancreas enzymes.

2. The CT scan done at Mayo showed an area of either a tumor or scar tissue at the ampulla of vater, the place where the pancreatic duct and common bile duct meet

3. The Mayo pathologist that read my liver biopsy slides stated that there was damage to my liver consistent with multiple attacks of acute pancreatitis

Dr. Lara then told me that I definitely don't have AIH. His reasoning behind saying that was that

1. Even though my ANA is almost always positive (out of the 25 or so times it has been checked, it has been negative only 1 or 2 times in ten years), I've never had a positive anti-smooth muscle antibody. I've been checked for the anti-smooth muscle antibody only about 3 times because all my other doctors have said that with AIH, you normally have either a positive ANA OR a positive anti-smooth muscle antibody, although some have both, you can definitely have AIH and only have one of those two antibodies positive.

2. Dr. Lara insisted that to have AIH, both antibodies must be positive.

3. Also, the Mayo pathologist that read my liver biopsy from Dec 2002 said she saw no signs of AIH and that the damage to my liver was consistent with damage done by repeat attacks of acute pancreatitis (which Dr. Lara had only minutes before told me I'd probably never had an attack of acute pancreatitis)

When I asked Dr. Lara if I did not have AIH, how could he explain my liver enzymes that had been ranging as high as almost 800 went down to near normal after only 2 1/2 weeks on prednisone, he told me my liver enzymes had never been anywhere near that high. I told him they most certainly had. He said they were never that high in any of the lab work I had provided him with. I instantly pulled out sheet after sheet of labs with my liver enzymes ranging from around 500-800 from July to December 2002, prior to my liver biopsy and diagnosis of AIH. He got all flustered when I proved him wrong and just kind of stuttered about, never answering my question. He then switched to the subject of me going through their pain rehab program.

Dr. Lara had suggested on Monday that I see Mayo's pain doctors despite the fact that I'm quite happy with my pain mgmt doc at home. Initially, they were not going to be able to get me in to see a Mayo pain doc til the following week and I wasn't able to stay til the next week because my flight could not be changed. I managed to get them to work me in and I saw a pain doc on Tuesday. I talked to him for over an hour. Their pain program is a psychiatric program to help you learn techniques to deal with chronic pain. It's a three week long program. The psych doc I talked to was great. We talked for two hours. He said that with chronic pancreatitis, it is unrealistic to think that one can manage for any length of time without pain meds regardless of techniques used to help deal with pain. He told me that it sounded like I had a very good and supportive team of docs, including my pain doc, GI/Hep, internal med doc, and rheumatologist at home. He said that if it ever got to the point that the pain medicine and nerve blocks that I have were no longer able to keep my pain to a tolerable level, I might want to consider their program, but at this time, he saw no need for me to even consider it.

Well, Dr. Lara obviously didn't know I'd seen the pain psych at Mayo, because he told me that he thought the only thing I needed to do was go through their pain program and I'd have no more problems. When I told him I had seen the pain doc and what he had said, Dr. Lara first tried telling me that I had NOT seen one of their pain psych docs because he didn't have a report. I told him it had been late Tuesday and the doc probably just had not completed his report since this was early Wed. Dr. Lara then became all flustered and said, "You're sure he didn't recommend that you go through our pain program?" I assured him I had understood the pain doc quite well!

Then he said, that he really didn't have anything to offer me other than to recommend that I take antioxidants because some people with chronic pancreatitis benefitted from them. (This was despite the fact that he'd told me I'd probably never even had an attack of acute pancreatitis.) He ended the visit saying that he couldn't really say for sure that I didn't have chronic pancreatitis, but he couldn't say 100% for sure that I do have it either.

This had to be about the most ridiculous doctor's appt I'd ever had! The next morning I called my rheumatologist's office to let them know what had happened since she was the one that had referred me to the Mayo Clinic. Within an hour after calling my rheumy's office, I get a call on my cell phone asking me to come back to the GI clinic and see a different GI doc! It seems my rheumy chewed a hole in someone's butt! The GI I saw then was sooooo nice. His name is Dr. Topazian. He immediately told me that lupus was not his area of expertise, but that he did know you could certainly have lupus without having a rash on your face. He apologized for the way Dr. Lara treated me. He told me that it does appear that I have chronic pancreatitis and that even if we only count the acute pancreatitis attacks I've had since July 2002 where the pancreas enzymes were elevated to the point that there was no doubt I was having an attack of acute pancreatitis, there were a minimum of 10 attacks in less than two years! He reviewed my ct scan films from the last ct scan I'd had done at home and from the ct scan done at Mayo and said that the area of concern around the ampulla of vater was only slightly visible on the films from home, but was much more prominent on the films done the previous day at Mayo. He recommended an ERCP, but I told him I wouldn't let them do one unless my GI doc from home said I should. He called my GI doc right then. The two of them convinced me to let the Mayo docs try another ERCP. Big mistake and waste as they couldn't get to the ampulla of vater because of my gastric bypass. However, at least they tried, but that is absolutely the LAST ERCP anyone will ever do on me! The GI that did the ERCP was Dr. sen and he was nice and I did like him until I had to suffer through the ERCP awake and literally screaming in pain, the best I could scream with a tube down my throat. He kept saying, I don't think she'll remember any of this. WRONG! I remember it all and I don't know of anything in my life that has ever been so painful as feeling a hose move all around inside you! Don't know why I wasn't knocked out. They supposedly gave me 400 mg of demerol and 17 mg of versed. I finally passed out near the end, but other than that I was totally awake!

Okay - well, I got way off topic, but I just wanted you to know about my experience with Mayo Clinic in Rochester!

Take care and I hope you soon find the doctor that is right for you.

[Guest guest]

Weston wrote:

> ,

> In my opinion, you might be better off considering the Cleveland

> Clinic instead of the Mayo Clinic. I know Jerry (who I hope is still

> with the group) and some others are under the care of docs at the

> Cleveland Clinic and sing their praises. I will try to find the name

> of the hepatologist I saw at Mayo. He was very nice and really didn't

> know quite what to make about their pathologist reading my same liver

> biopsy slides so totally different from how the pathologist in

> Birmingham and the hepatologist at Vandy read it. However, I only

> spent maybe 20 minutes with him, so I don't have enough experience

> with him to be able to say if he is good or bad. I also have no

> experience at all with the Mayo transplant surgeons since I am nowhere

> near needing a transplant and hope never to be!

>

> Just looked at Mayo's web site and the hep I saw was Dr. Gross.

> Here's a link.

> http://www.mayoclinic.org/gi-rst/10022830.html

>

>

> Here's the info on getting an appt.

>

>

>

> The availability of appointments depends largely on your condition.

> Patients with urgent conditions or diagnoses are given priority.

>

> For appointments or more information, call:

>

> * Gastroenterology appointment secretaries: (507) 284-2141

> * Central appointment office: (507) 284-2111

>

> Here's info on becoming a patient at Mayo in Rochester.

> http://www.mayoclinic.org/becomingpat-rst/

>

> One thing I do have to say about Mayo is that there are numerous

> hotels in the area, many within walking distance. They range in price

> from about $25 a day up to any amount you'd like to spend. I stayed

> at the Executive Inn and my room was only $232 for the whole week

> including tax. The hotel was old and certainly not fancy, but it was

> clean and the people were nice. It also had a small fridge and

> microwave in the room. There's free shuttle service to all the Mayo

> facilities from the hotel and some hotels offer free shuttle service

> to and from the airport. The place I stayed at was only 3 blocks from

> the main Mayo facility so I walked it a couple of days. The entire

> Mayo facility is HUGE so be prepared for a lot of walking. I brought

> my rolling carry-on suitcase with me every day so I didn't have to lug

> my heavy purse, medical records, and/or any purchases I might have

> made at the many stores available.

>

> Best of luck to you no matter where you choose to go. I do have to

> say that the nurses and staff at the Mayo were wonderful. I was

> admitted just overnight after my ERCP. The ERCP was done at Rochester

> Methodist Hospital but after the ERCP I was transported to Saint

> 's Hospital via ambulance for my overnight stay. This is

> customary. For some reason they do the ERCPs at one hospital but GI

> patients are kept overnight at the other hospital.

>

> In the GI clinic, I originally saw Dr. Chari (for a total of maybe 10

> minutes) and his resident, Dr. Lara, who actually completed his

> residency and was a full fledged GI doc on the 2nd day that I saw

> him. ly, Dr. Lara was a blooming idiot and if Dr. Chari agreed

> with the things Dr. Lara told me (as Dr. Lara said) then I certainly

> could not recommend Dr. Chari to anyone. Dr. Lara's last day at Mayo

> was the day of my 2nd visit with him and he was moving to Texas as a

> 'real' doc! I saw Dr. Lara and Dr. Chari initially on a Monday. I

> told the GI doctors that I thought my rheumatologist wanted me to see

> a rheumy at Mayo in addition to the GI docs because of the numerous

> autoimmune diseases that I have. They said they would set up the appt

> with the rheumy dept for me. However, by Wed morning, they had not

> set up an appt for me in the rheumy dept so when I saw Dr. Lara again

> on Wednesday I asked about it.

>

> He asked me why I thought I needed to see a rheumatologist. I told

> him it was what my rheumy from home wanted because I have so many

> autoimmune diseases and a very strong family history of autoimmune

> diseases. My sis, daughter, and I each have 2 or more autoimmune

> diseases and when our hematologist did genetic testing on my sis and

> I, he found that we inherited a gene from each parent that can lead to

> autoimmune diseases. Weird since neither our mom or dad have any

> autoimmune diseases that we know of!

>

> Anyway, Dr. Lara started off the appt by telling me that I don't

> really have a lot (if any) autoimmune diseases. Dr. Lara told me that

> I definitely do not have lupus because I have no rash on my face.

> Never mind that

> 1. Dr. Lara is a GI doc, NOT a rheumatologist

> 2. I was diagnosed with lupus almost 10 years ago

> 3. I DO have the typical butterfly rash on my face that often goes

> with lupus. It's just that it sometimes it is VERY prevalent and

> other times it is hardly noticeable with make-up on, especially since

> I use make-up designed to help hide the red of the rash. I told Dr.

> Lara that I have the butterfly rash and that if he sent me out in the

> sun or kept me under the UV lights in his office for a while, it would

> become more obvious

> 4. Prior to my lupus diagnosis, I had a biopsy of the rash on my face

> - they took two chunks of skin, which each required 3-4 stitches. The

> biopsy came back stating the rash was consistent with lupus.

>

> Despite all this, Dr. Lara was insistent that I absolutely do not have

> lupus and both of the rheumatologists that have said I do are wrong!

> Oh, also when I mentioned having an autoimmune clotting disorder

> (antiphospholipid syndrome), he said, " Oh, that's just part of having

> lupus. Everyone with lupus has that. " NOT TRUE!

>

> Next, he told me that I'd probably never really had an attack of

> pancreatitis. Never mind that

> 1. I've had numerous episodes of attacks of acute pancreatitis with

> clearly elevated pancreas enzymes.

> 2. The CT scan done at Mayo showed an area of either a tumor or scar

> tissue at the ampulla of vater, the place where the pancreatic duct

> and common bile duct meet

> 3. The Mayo pathologist that read my liver biopsy slides stated that

> there was damage to my liver consistent with multiple attacks of acute

> pancreatitis

>

> Dr. Lara then told me that I definitely don't have AIH. His reasoning

> behind saying that was that

> 1. Even though my ANA is almost always positive (out of the 25 or so

> times it has been checked, it has been negative only 1 or 2 times in

> ten years), I've never had a positive anti-smooth muscle antibody.

> I've been checked for the anti-smooth muscle antibody only about 3

> times because all my other doctors have said that with AIH, you

> normally have either a positive ANA OR a positive anti-smooth muscle

> antibody, although some have both, you can definitely have AIH and

> only have one of those two antibodies positive.

> 2. Dr. Lara insisted that to have AIH, both antibodies must be positive.

> 3. Also, the Mayo pathologist that read my liver biopsy from Dec 2002

> said she saw no signs of AIH and that the damage to my liver was

> consistent with damage done by repeat attacks of acute pancreatitis

> (which Dr. Lara had only minutes before told me I'd probably never had

> an attack of acute pancreatitis)

>

> When I asked Dr. Lara if I did not have AIH, how could he explain my

> liver enzymes that had been ranging as high as almost 800 went down to

> near normal after only 2 1/2 weeks on prednisone, he told me my liver

> enzymes had never been anywhere near that high. I told him they most

> certainly had. He said they were never that high in any of the lab

> work I had provided him with. I instantly pulled out sheet after

> sheet of labs with my liver enzymes ranging from around 500-800 from

> July to December 2002, prior to my liver biopsy and diagnosis of AIH.

> He got all flustered when I proved him wrong and just kind of

> stuttered about, never answering my question. He then switched to the

> subject of me going through their pain rehab program.

>

> Dr. Lara had suggested on Monday that I see Mayo's pain doctors

> despite the fact that I'm quite happy with my pain mgmt doc at home.

> Initially, they were not going to be able to get me in to see a Mayo

> pain doc til the following week and I wasn't able to stay til the next

> week because my flight could not be changed. I managed to get them to

> work me in and I saw a pain doc on Tuesday. I talked to him for over

> an hour. Their pain program is a psychiatric program to help you

> learn techniques to deal with chronic pain. It's a three week long

> program. The psych doc I talked to was great. We talked for two

> hours. He said that with chronic pancreatitis, it is unrealistic to

> think that one can manage for any length of time without pain meds

> regardless of techniques used to help deal with pain. He told me that

> it sounded like I had a very good and supportive team of docs,

> including my pain doc, GI/Hep, internal med doc, and rheumatologist at

> home. He said that if it ever got to the point that the pain medicine

> and nerve blocks that I have were no longer able to keep my pain to a

> tolerable level, I might want to consider their program, but at this

> time, he saw no need for me to even consider it.

>

> Well, Dr. Lara obviously didn't know I'd seen the pain psych at Mayo,

> because he told me that he thought the only thing I needed to do was

> go through their pain program and I'd have no more problems. When I

> told him I had seen the pain doc and what he had said, Dr. Lara first

> tried telling me that I had NOT seen one of their pain psych docs

> because he didn't have a report. I told him it had been late Tuesday

> and the doc probably just had not completed his report since this was

> early Wed. Dr. Lara then became all flustered and said, " You're sure

> he didn't recommend that you go through our pain program? " I assured

> him I had understood the pain doc quite well!

>

> Then he said, that he really didn't have anything to offer me other

> than to recommend that I take antioxidants because some people with

> chronic pancreatitis benefitted from them. (This was despite the fact

> that he'd told me I'd probably never even had an attack of acute

> pancreatitis.) He ended the visit saying that he couldn't really say

> for sure that I didn't have chronic pancreatitis, but he couldn't say

> 100% for sure that I do have it either.

>

> This had to be about the most ridiculous doctor's appt I'd ever had!

> The next morning I called my rheumatologist's office to let them know

> what had happened since she was the one that had referred me to the

> Mayo Clinic. Within an hour after calling my rheumy's office, I get a

> call on my cell phone asking me to come back to the GI clinic and see

> a different GI doc! It seems my rheumy chewed a hole in someone's

> butt! The GI I saw then was sooooo nice. His name is Dr. Topazian.

> He immediately told me that lupus was not his area of expertise, but

> that he did know you could certainly have lupus without having a rash

> on your face. He apologized for the way Dr. Lara treated me. He told

> me that it does appear that I have chronic pancreatitis and that even

> if we only count the acute pancreatitis attacks I've had since July

> 2002 where the pancreas enzymes were elevated to the point that there

> was no doubt I was having an attack of acute pancreatitis, there

> were a minimum of 10 attacks in less than two years! He reviewed my

> ct scan films from the last ct scan I'd had done at home and from the

> ct scan done at Mayo and said that the area of concern around the

> ampulla of vater was only slightly visible on the films from home, but

> was much more prominent on the films done the previous day at Mayo.

> He recommended an ERCP, but I told him I wouldn't let them do one

> unless my GI doc from home said I should. He called my GI doc right

> then. The two of them convinced me to let the Mayo docs try another

> ERCP. Big mistake and waste as they couldn't get to the ampulla of

> vater because of my gastric bypass. However, at least they tried, but

> that is absolutely the LAST ERCP anyone will ever do on me! The GI

> that did the ERCP was Dr. sen and he was nice and I did like him

> until I had to suffer through the ERCP awake and literally screaming

> in pain, the best I could scream with a tube down my throat. He kept

> saying, I don't think she'll remember any of this. WRONG! I remember

> it all and I don't know of anything in my life that has ever been so

> painful as feeling a hose move all around inside you! Don't know why

> I wasn't knocked out. They supposedly gave me 400 mg of demerol and

> 17 mg of versed. I finally passed out near the end, but other than

> that I was totally awake!

>

> Okay - well, I got way off topic, but I just wanted you to know about

> my experience with Mayo Clinic in Rochester!

>

> Take care and I hope you soon find the doctor that is right for you.

>

>

>

>

>

[Guest guest]

,

A new baby and a grandbaby to come - how wonderful! Congrats!

I have actually had fleeting thoughts of getting into the foster parent world. I haven't even mentioned it to my hubby as I think he'd have a straight jacket for me in 5 minutes! Realistically, I don't think it's something I can do right now, mostly because I am in the hospital so often.

take care,

[Guest guest]

Thanks for writing.... I think my feet are okay... I kind of have a weird

thing with the outer upper theigh area... sort of numb.... I don't know - today

I

was pretty good but then again I took all my pain meds... and I have this

board I put in the car and at work so I have a straight back sort of chair

everywhere.

Thanks Again, julie

[Guest guest]

--HELLO!!! I wanted to shoot you all of a quick post while I had

been provided with a laptop from NEBH...ain't that great PR....!!

The PR lady who delivers my patient email, set up a TECH person to

come on the rehab floor and wire me up a hospital laptop!! I had

expressed how it was so great to get emails from folks everyday but

felt a bit sad ..boohoo..poor me...that I was unable to

respond...not that I could have reponded the first four days..all I

could do is moan...bet Cam is glad I was not her roommate!!! I was

soooo very happy to talk to Cam and ! Everyone who has emailed

me..

you will never know how much I appreciated it..keep them coming ..I

won't have the laptop for long..off to second stage...

Surgery was as all had decribed..sucked big time...what even

sucks,stinks, more is I have to do it again!! I have not been able

to wrap my head around that one yet!!

Pause...Rand was just in here....I showed him the web site....don't

worry did not let him see the posts;....just proved that it is

REAL!! He laughed....he said he has never been on it..I said we

would know if he had..he must register!!!I was even lucky enough to

get a personal visit from the Pres. of NEBH today, he is from PA,

near PennState and heard from the PR lady that someone famous from

PA was here....kidding,,,yes, he is from PA and he did come see

me....wondered how I ended up here.....? TOld him about Cam and the

site and he said they refer to us as " alpha " patinets...folks who

research on the internet etc....smart buc=nch we are....told him I

came for Rand not really the hospital but it was a nice

extra....doctor first, hospital second.....at least in my small

mind...enough of my babble for now...

[Guest guest]

Hi ,

This is . I am around but not very involved in hyperthyroidism so much

lately. It's not that I don't want to be, but I've developed another disease

which has pretty much crippled me for the last four years. It often seems that

my life has been " one damn disease after another " and my goal in life is to

solve these diseases so that others don't have to put themselves at risk and

go through the hell of trying to figure out how to get out of the mess they're

in.

I can't tell you what disease I have now.....it's complicated since millions

of people have this disease and I don't want to put out false promises of a

cure, but I can tell you it's been the most difficult disease of my life.

Hyperthyroidism took me less than a year to figure out enough to get well, but

this one has taken me more than 4 years. I'm feeling somewhat confident now, as

I've been 4 weeks without symptoms, but the cure has been more hell than the

disease. When you have hyperthyroidism, taking copper can make you feel

better in hours or days, the path to healing in this disease leads to months of

worse hell before it starts to get better. I need to be really sure of what

I'm talking about before I tell anyone about how I've (hopefully) corrected

this disease, because if I'm wrong, a lot of people could be hurt following the

path I took. I know this sounds cryptic, but, as I said, I can't say to much

right now.

, I can't tell you how much it means to me when someone asks how I am

and if I am well. So many people look at and use the information that I've

found and published on ithyroid.com without thinking about the pain that I've

gone through to discover this information and wondered if I am well. Maybe

you're psychic and have felt something about me and my condition, because I'm

going though some very difficult nights lately, trying to get through the last

of some cleansing crises which will hopefully leave me at the doorstep of

health (once again).

The important thing for all of you who are still solving the hyperthyroidism

problem, is that through all these years since recovering from

hyperthyroidism, my thyroid has remained healthy. All blood tests since 1998

have shown

that my thyroid is perfectly normal. TSH is normal, T4 is normal, free T3 is

normal, etc. I feel great with normal thyroid function. Copper is the key to

recovering from hyperthyroidism and each of you should be able to recover

fully, as I have, by following the information on ithyroid.com. Even though I

have

not done much with the website at ithyroid.com for the last few years, I

have felt good, knowing that the information there is valid and is sufficient

to

enable anyone to recover from hyperthyroidism.

Hopefully, this has caught many of you up with what is going on with me and

you'll have an idea of what I've been going through. I'm very hopeful that I

can soon share with you the drama of the last few years, but keep in mind, I

might be going down a wrong path and you'll never hear about it.

The important thing is that I'm here, going through crises like you are. It

may be a different disease, but it's still hell. Hopefully, I can find some

information that might spare many, and perhaps millions, from suffering what

I've been through.

Like many of you, I'm beat-up, tired, discouraged, but hopeful. Any note of

caring can buoy me up and get me through the current crisis, so I can

hopefully rise to be a beacon to knowledge sometime in the future. I always

want to

hear from people who are doing well. Send me emails!!!

Remember: Together we can change the world. Let's do it!!!!

Love and courage to all of you!!

In a message dated 10/31/2007 12:21:11 A.M. Pacific Daylight Time,

b53cjf@... writes:

Hi all,

I'm a 54 yo female, Dx 3 months ago with hashi's. Also found out a

couple weeks ago I am positive for a significant amount of TSI so have

the potential for Graves. I tried Armour, could not tolerate it due

to getting hyper so quit after 4 days. I think it triggered something

because I've not been the same since. I'm not on any meds, but was

feeling very hyper for several weeks with high bp spikes, pounding

heart, and sleeplessness.

I've since discovered I have low ferritin and came across a study by

Mayo that showed people who could not tolerate thyroid meds due to the

same symptoms I had, were found to have low iron stores (ferritin)

But prior to figuring out I had the low ferritin, I thought it was

strictly due to hyperT so I read and re-read 's site and found the

copper helped immensely. No more high bp, the heart pounding was less

and I was calmer. I did high copper for about 1 1/2 weeks and now am

adding the iron and I feel like I've come back from the edge of death

(I was scared)

What exactly the mechanism was by which the copper helped, I'm not

sure. It probably helped mobilize what little iron I did have so that

I could use it and/or it somehow down-regulated the thyroid. In any

case, it worked and I am so thankful to .

I also found a study showing that anemia triggers excess norepineprine

which can cause anxiety and hyperness. So it's possible that my whole

hyper episode was triggered by iron deficiency.

Which brings me to the big question. Where is this wonderful

person who did the website and all the wonderful research and shared

his experiments on himself? I am forever grateful for that site and

refer back to it frequently. Is he still around and well?

I am on other thyroid lists where people mention iThyroid and how the

information there has helped them and everyone wonders whatever

happened to , as it does not appear that he has done anything with

the website in a few years.

I am looking forward to learning as much as possible.

************************************** See what's new at http://www.aol.com

[Guest guest]

Dear ,

I am so sorry to hear you are struggling with yet another challenge.

I, too, have been cured since 1998, and have stayed around to help others.

Of course, I think of you often, as I am one of the original members of this

group.

Last Monday night some a**hole in a large, souped-up SUV ran through a stop

sign and smashed me on the passenger side (I was driving) while I was coming

home from work. Thank God I survived, albiet with lots of muscle soreness,

although my poor car didn't make it. A visit to the ER ruled out internal

injuries and broken bones, but I sure am sore!

I am seeing a body worker and other healers, and also will go for PT, etc.,

for insurance purposes.

So, life goes on, and the challenges continue.

You have helped countless men and women in their struggle to regain their

health, and so live in all of our hearts and minds. I hope that we all can

send you enough love, and healing energy, so that you win your latest battle,

which I know you can.

Please keep in touch with us--we all care about you, and are concerned, and

want to hear from you.

Yours in struggle,

AntJoan

************************************** See what's new at http://www.aol.com

[Guest guest]

I'm not at all psychic, but I did have a feeling that something was

wrong with you (was afraid you were dead!).

It just seemed strange that someone who had such a passion for healing

and had such success would put so much into a website to help others

and then seem to disappear.

Another lady and I have been going through similar symptoms at about

the same time, and we discovered we both had found the info on your

website and were trying the copper at the same time. So I found this

website last night and quickly emailed her and we are both so excited

to know you are still around.

I am so sorry to hear you are struggling with some disease. It is

scary to have something that you feel you have no control over.

I am an RN and had a holistic practice for a few years and was able to

help many people solve their health problems. And anytime I did not

feel well, I was able to solve my own with diet and my arsenal of

supplements.

But when my body recently went out of control with this hyper thing I

truly felt like I was going to die. It was very scary and I spent

every day feeling like the sword of Damocles was hanging over my head.

I felt like I had absolutely no control over it and wondered how I

ever got to this place since I've eaten healthy and taken handfuls of

supplements over the years. Nothing was working.

Until, of course, I found your website. I am so grateful for it. I'm

seeing progress every day. I can at least sleep at night now.

I will be praying for you to have insipiration and guidance in

regaining your health. And you must share it with us when you are ready.

Please pop in now and then and let us know how you are doing.

>

>

> Hi ,

>

> This is . I am around but not very involved in hyperthyroidism

so much

> lately. It's not that I don't want to be, but I've developed another

disease

> which has pretty much crippled me for the last four years. It often

seems that

> my life has been " one damn disease after another " and my goal in

life is to

> solve these diseases so that others don't have to put themselves at

risk and

> go through the hell of trying to figure out how to get out of the

mess they're

> in.

>

> I can't tell you what disease I have now.....it's complicated since

millions

> of people have this disease and I don't want to put out false

promises of a

> cure, but I can tell you it's been the most difficult disease of my

life.

> Hyperthyroidism took me less than a year to figure out enough to get

well, but

> this one has taken me more than 4 years. I'm feeling somewhat

confident now, as

> I've been 4 weeks without symptoms, but the cure has been more hell

than the

> disease. When you have hyperthyroidism, taking copper can make you

feel

> better in hours or days, the path to healing in this disease leads

to months of

> worse hell before it starts to get better. I need to be really sure

of what

> I'm talking about before I tell anyone about how I've (hopefully)

corrected

> this disease, because if I'm wrong, a lot of people could be hurt

following the

> path I took. I know this sounds cryptic, but, as I said, I can't

say to much

> right now.

>

> , I can't tell you how much it means to me when someone asks

how I am

> and if I am well. So many people look at and use the information

that I've

> found and published on ithyroid.com without thinking about the pain

that I've

> gone through to discover this information and wondered if I am well.

Maybe

> you're psychic and have felt something about me and my condition,

because I'm

> going though some very difficult nights lately, trying to get

through the last

> of some cleansing crises which will hopefully leave me at the

doorstep of

> health (once again).

>

> The important thing for all of you who are still solving the

hyperthyroidism

> problem, is that through all these years since recovering from

> hyperthyroidism, my thyroid has remained healthy. All blood tests

since 1998 have shown

> that my thyroid is perfectly normal. TSH is normal, T4 is normal,

free T3 is

> normal, etc. I feel great with normal thyroid function. Copper is

the key to

> recovering from hyperthyroidism and each of you should be able to

recover

> fully, as I have, by following the information on ithyroid.com. Even

though I have

> not done much with the website at ithyroid.com for the last few

years, I

> have felt good, knowing that the information there is valid and is

sufficient to

> enable anyone to recover from hyperthyroidism.

>

> Hopefully, this has caught many of you up with what is going on with

me and

> you'll have an idea of what I've been going through. I'm very

hopeful that I

> can soon share with you the drama of the last few years, but keep

in mind, I

> might be going down a wrong path and you'll never hear about it.

>

> The important thing is that I'm here, going through crises like you

are. It

> may be a different disease, but it's still hell. Hopefully, I can

find some

> information that might spare many, and perhaps millions, from

suffering what

> I've been through.

>

> Like many of you, I'm beat-up, tired, discouraged, but hopeful. Any

note of

> caring can buoy me up and get me through the current crisis, so I can

> hopefully rise to be a beacon to knowledge sometime in the future.

I always want to

> hear from people who are doing well. Send me emails!!!

>

> Remember: Together we can change the world. Let's do it!!!!

>

> Love and courage to all of you!!

>

>

>

>

>

>

>

>

> In a message dated 10/31/2007 12:21:11 A.M. Pacific Daylight Time,

> b53cjf@... writes:

>

>

>

>

> Hi all,

>

> I'm a 54 yo female, Dx 3 months ago with hashi's. Also found out a

> couple weeks ago I am positive for a significant amount of TSI so have

> the potential for Graves. I tried Armour, could not tolerate it due

> to getting hyper so quit after 4 days. I think it triggered something

> because I've not been the same since. I'm not on any meds, but was

> feeling very hyper for several weeks with high bp spikes, pounding

> heart, and sleeplessness.

>

> I've since discovered I have low ferritin and came across a study by

> Mayo that showed people who could not tolerate thyroid meds due to the

> same symptoms I had, were found to have low iron stores (ferritin)

>

> But prior to figuring out I had the low ferritin, I thought it was

> strictly due to hyperT so I read and re-read 's site and found the

> copper helped immensely. No more high bp, the heart pounding was less

> and I was calmer. I did high copper for about 1 1/2 weeks and now am

> adding the iron and I feel like I've come back from the edge of death

> (I was scared)

>

> What exactly the mechanism was by which the copper helped, I'm not

> sure. It probably helped mobilize what little iron I did have so that

> I could use it and/or it somehow down-regulated the thyroid. In any

> case, it worked and I am so thankful to .

>

> I also found a study showing that anemia triggers excess norepineprine

> which can cause anxiety and hyperness. So it's possible that my whole

> hyper episode was triggered by iron deficiency.

>

> Which brings me to the big question. Where is this wonderful

> person who did the website and all the wonderful research and shared

> his experiments on himself? I am forever grateful for that site and

> refer back to it frequently. Is he still around and well?

>

> I am on other thyroid lists where people mention iThyroid and how the

> information there has helped them and everyone wonders whatever

> happened to , as it does not appear that he has done anything with

> the website in a few years.

>

> I am looking forward to learning as much as possible.

>

>

>

>

>

>

>

>

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

>

>