new and need advice

July 14, 2000

Wow, hard to imagine taking just two motrins! I would really consult

with a rheumy. A chiropractor is not as knowledgable about PA and

spinal adjustments will not affect inflamed joints or prevent joint

deterioration. I have very mild arthritis compared to many list

members and I take a Disease Modifying Anti-Rheumatic (DMARD) and

prescription NSAIDS every day. I have to line up all my potions on

the sink or I'll forget them!

July 11, 2001

> Hi all I'm new to the group and am trying to find information and

> advice to help my mother inlaw. She has late stage liver disease and

> had a bout with Hepatic Encephalopathy.Ammonia was high at 148, they

> are now treating her with lactulose and a limited protein diet.Her

> ammonia is continuing to climb however 190 1 week ago and has about

> doubled to 360 this week. Her Doctor cannot figure out how she looks

> and says she feels so well.He thinks she should be in a coma at this

> point.All her other blood work looks good they say.

> Has anyone else had levels this high, what can be done to help her?

> At the present time she is only being seem by a GP and we are trying

> to get her transfered to TN from VA to see a specialist.

> By the way she is 70, so I was told they wouldn't consider her for a

> transplant.Any info would be greatly apprietiated.

> Thanks,Dawn

Dawn.....Ammonia levels rise due to liver damage... how did they determine to

take her ammonia levels? This is not a common test in blood tests and usually is

used to detect the severity of portal systemic encephalopathy.... the

encephalopathy itself should be very apparent by now.... I`m not familiar with

the scale being used so the numbers mean little but certainly seems high.... by

the way this test should be done using arterial blood, not venous as it may give

false results. I had hepatic encephalopathy and it was quite obvious... I

reached a state of semi-comatose.... I had no idea what was going on around

me,couldn`t speak and make sense. was unable to do simple motor tasks, etc, etc

..... what I`m trying to say is that these kind of indicators should be

apparent.... Lactulose and low protein diet kept mine under control fairly well,

but a high degree of unresponsive encephalopathy should indicate a need for

transpant.... I`m not sure that being refused a transplant at 70 is a fact

etched in stone....other factors include her actual other overall health.... can

she take the trauma of a transplant.... If I was you I`d check various Tx

centers to see what the requirements were, she may be eligible after

all..doesn`t she exhibit any other compications such as varices, ascites or

edema or jaundice. Why Tennessee? There should be closer centers in Va. (

Hopkins in MD. comes to mind) Try them all .... I went to The Cleveland Clinic

which is one of the very best. You can contact ALF on line for recommendations

or UNOS. The Cleveland Clinic has a great website.

BTW... my mother had a triple bypass at age 81. 70 isn`t that old (damn ... it`s

only 12 yrs. older than me)

my prayers,

Jerry

July 11, 2001

Dawn,

I agree with Jerry. Please check with the Cleveland Clinic (800-223-2273, Lou Farquhar) as I have met with many of their recipients and one lady was 71. Calendar age is not always the determining factor -- if you are in good health otherwise and can withstand the procedure, some centers will try to get you listed.

Randy had bouts of encephalophy also. We just called it space cadeting because at times he didnt have a clue who he was, who I was or where he was.

Other times he just checked out for a while. For him, lying down in a dark room without any type of stimulation (such as the TV on) seemed to lessen the severity of the attacks. Each person is different though. Lactulose was a daily regime and after awhile, Randy could feel it coming on and let me know. We immediately stopped what we were doing and got him home ( it even meant leaving groceries in the shopping cart at the store one time). We were fortunate than most, as I was able to be with him 24/7 and could "read" the changes in him and could administer the remedy quickly. Many are not as fortunate and I really do not know how they handle it being alone or the family knowing they cannot be there. Randy would not have eaten or taken his meds regularly without help. Lucky for us, Randy gave up trying to drive a car or cook long before he got really bad. He also didnt wander off as some people do.

The encephalophy robs the person of their dignity and pride at times. It is important to recognise that when they feel good, let them do for themselves.

I tried explaining to his employer (without success) how Randy could do quantum physic equations in the morning and maybe a couple of hours later, try and figure out how to find his pencil. Then by quitting time, be okay.

Most people do not want to understand this disease that strikes with a vengence.

Good luck with your Mother. And please keep us posted. We are here to help in any way we can.

Cheryl & Randy McCullough

Randy tx 12-14-99 AIH

Cheryl is his Living Liver Donor

LURD Surgery #2

Cleveland Clinic Foundation in Ohio

July 11, 2001

I don't know where in Virgina you are at, but I go to Hopkins, and

they have great Gastro's and Hept's there. You may also want to consider

Duke, if it isn't too far - How about UVA?

-Clyde

gefox@... wrote:

>

> > Hi all I'm new to the group and am trying to find information and

> > advice to help my mother inlaw. She has late stage liver disease and

>

> > had a bout with Hepatic Encephalopathy.Ammonia was high at 148, they

>

> > are now treating her with lactulose and a limited protein diet.Her

> > ammonia is continuing to climb however 190 1 week ago and has about

> > doubled to 360 this week. Her Doctor cannot figure out how she looks

>

> > and says she feels so well.He thinks she should be in a coma at this

>

> > point.All her other blood work looks good they say.

> > Has anyone else had levels this high, what can be done to help her?

> > At the present time she is only being seem by a GP and we are trying

>

> > to get her transfered to TN from VA to see a specialist.

> > By the way she is 70, so I was told they wouldn't consider her for a

>

> > transplant.Any info would be greatly apprietiated.

> > Thanks,Dawn

>

> Dawn.....Ammonia levels rise due to liver damage... how did they

> determine to take her ammonia levels? This is not a common test in

> blood tests and usually is used to detect the severity of portal

> systemic encephalopathy.... the encephalopathy itself should be very

> apparent by now.... I`m not familiar with the scale being used so the

> numbers mean little but certainly seems high.... by the way this test

> should be done using arterial blood, not venous as it may give false

> results. I had hepatic encephalopathy and it was quite obvious... I

> reached a state of semi-comatose.... I had no idea what was going on

> around me,couldn`t speak and make sense. was unable to do simple motor

> tasks, etc, etc .... what I`m trying to say is that these kind of

> indicators should be apparent.... Lactulose and low protein diet kept

> mine under control fairly well, but a high degree of unresponsive

> encephalopathy should indicate a need for transpant.... I`m not sure

> that being refused a transplant at 70 is a fact etched in

> stone....other factors include her actual other overall health.... can

> she take the trauma of a transplant.... If I was you I`d check various

> Tx centers to see what the requirements were, she may be eligible

> after all..doesn`t she exhibit any other compications such as varices,

> ascites or edema or jaundice. Why Tennessee? There should be closer

> centers in Va. ( Hopkins in MD. comes to mind) Try them all .... I

> went to The Cleveland Clinic which is one of the very best. You can

> contact ALF on line for recommendations or UNOS. The Cleveland Clinic

> has a great website.

> BTW... my mother had a triple bypass at age 81. 70 isn`t that old

> (damn ... it`s only 12 yrs. older than me)

>

> my prayers,

> Jerry

>

July 11, 2001

> > > Hi all I'm new to the group and am trying to find information

and

> > > advice to help my mother inlaw. She has late stage liver

disease and

> >

> > > had a bout with Hepatic Encephalopathy.Ammonia was high at 148,

they

> >

> > > are now treating her with lactulose and a limited protein

diet.Her

> > > ammonia is continuing to climb however 190 1 week ago and has

about

> > > doubled to 360 this week. Her Doctor cannot figure out how she

looks

> >

> > > and says she feels so well.He thinks she should be in a coma at

this

> >

> > > point.All her other blood work looks good they say.

> > > Has anyone else had levels this high, what can be done to help

her?

> > > At the present time she is only being seem by a GP and we are

trying

> >

> > > to get her transfered to TN from VA to see a specialist.

> > > By the way she is 70, so I was told they wouldn't consider her

for a

> >

> > > transplant.Any info would be greatly apprietiated.

> > > Thanks,Dawn

> >

> > Dawn.....Ammonia levels rise due to liver damage... how did they

> > determine to take her ammonia levels? This is not a common test in

> > blood tests and usually is used to detect the severity of portal

> > systemic encephalopathy.... the encephalopathy itself should be

very

> > apparent by now.... I`m not familiar with the scale being used so

the

> > numbers mean little but certainly seems high.... by the way this

test

> > should be done using arterial blood, not venous as it may give

false

> > results. I had hepatic encephalopathy and it was quite obvious...

I

> > reached a state of semi-comatose.... I had no idea what was going

on

> > around me,couldn`t speak and make sense. was unable to do simple

motor

> > tasks, etc, etc .... what I`m trying to say is that these kind of

> > indicators should be apparent.... Lactulose and low protein diet

kept

> > mine under control fairly well, but a high degree of unresponsive

> > encephalopathy should indicate a need for transpant.... I`m not

sure

> > that being refused a transplant at 70 is a fact etched in

> > stone....other factors include her actual other overall

health.... can

> > she take the trauma of a transplant.... If I was you I`d check

various

> > Tx centers to see what the requirements were, she may be eligible

> > after all..doesn`t she exhibit any other compications such as

varices,

> > ascites or edema or jaundice. Why Tennessee? There should be

closer

> > centers in Va. ( Hopkins in MD. comes to mind) Try them

all .... I

> > went to The Cleveland Clinic which is one of the very best. You

can

> > contact ALF on line for recommendations or UNOS. The Cleveland

Clinic

> > has a great website.

> > BTW... my mother had a triple bypass at age 81. 70 isn`t that old

> > (damn ... it`s only 12 yrs. older than me)

> >

> > my prayers,

> > Jerry

> >

May 21, 2005

Hi !

I don't think that you are being a hypochondriac by

wanting to make sure that you have made the best

decision for your health. If it would make you feel

better to see an endocrinologist, then go see one.

There is absolutely nothing wrong with getting a

second opinion.

(the other one!)

--- rkaras2 <rkaras2@...> wrote:

> Hi. I just recently found out that my TSH level is

> 7.47. My T3 and T4

> seem to be normal (but I didn't get the Free levels

> done). I'm getting

> contradictory information about this level. Some

> people (including my

> Dr.) tell me that the number is not too high and not

> to worry about

> it. On the other hand I am reading online that

> numbers that high could

> lead to infertility, miscarriage, and other

> complications.

>

> Am I being a hypocondriac or should I see an

> endocrinologist and go on

> medicine?

>

> Thanks in advance!

>

> (yes, another ) : )

>

__________________________________________________

March 20, 2007

Hi ! Welcome to the lousy parents board - where you are

welcome to vent all you want and you will get loads of great advice!

I think most of us have heard that comment at least once " lousy

parents " ... HA!

I was the same way. I thought there's no way my kids could be

Aspergers. But, in doing all the research, just about everything

fits, and I think if you stick around, you will find yourself reading

posts that you will swear they are talking about your kid. I honestly

because of my lack of knowledge of Aspergers thought my kid was

bipolar too. We are all here for you. This board is great!

Welcome aboard our roller coaster )

Amy

>

> Hi Everyone,

>

> Thank you for letting me join. My son is 12 1/2 years old. As a

baby, he would scream for hours. I thought it was colic, but later

learned colic isn't supposed to last for a year! He spoke before he

was one, but then he stopped talking for a year. He had problems

getting along with other kids. I remember when he was about four, he

had a friend over. Whenever a friend came over, he had to put his

" special toys " hidden in my room so no one else would play with them.

Well, this day, the friend found the toys. My son got so upset, he

shoved the little girl into our piano and she got a big bruise. My

husband's family has a history of mood disorders. He is really smart;

he learned to play chess when he was four. Things got so bad with his

behavior, that a few weeks ago we had to put my son in a phosp. It was

really tough to do. He got mad and threatened to stab us with a knife

while we slept.

>

> He has about 10 different diagnosis'. My son, Elliot, has auditory

processing problems, short term memory problems, dyslexia, a recent

EEG showed seizures in his right temporal lobe. He is on medication

for Bipolar, but this last doctor at the hospital told me he thought

my son has Asperger's. I am really floored by this. I just don't see

how he can be Asperger's. He can be so empathetic sometimes. If his

little sister is scared, he will sit by her bed until she falls

asleep. He wants friends, even though the kids he usually picks are

trouble-makers. He does pretty well holding things together in school.

>

> One neuropsy. told us he thought Elliot had a NVLD, that all his

psy. testing showed this, but then when he met Elliot, who was very

polite and funny with the doctor, he said, " Oops, I was wrong " . Not

very helpful.

>

> So, we really don't know. My family thinks he has behavioral

problems because we are lousy parents. It seems everyone I know has

advice to give, but no one wants to deal with him.

>

> Anyway, sorry this is so long. Thank you for letting me join. If

anyone has any advice about Asperger's, I would really appreciate it.

>

> Atlanta, GA

> mom to Elliot, 12.5 yrs

> Lithium, Lamictal, Seroquel

>

August 28, 2008

,

I did feel that swelling in my thyroid. I took a tiny amount, my dr prescribed 1 drop and since I am so sensitive to everything I took 1/8 drop (I diluted in water to achieve this). I have not had my thyroid antibodies checked to determine Hashimotos.

I am not taking Selenium yet but am taking large doses of magnesium (trying to control my racing heart) and I tried the salt but it really made me feel swollen. My hair analysis showed very high levels of sodium, could this be why salt make me so uncomfortable?

I am not exposed to bromide or fluoride I don't think, where does bromide hide out? I am exposed to alot of chlorine. Because of my food allergies my diet is horrible. I react to everything, some things more severely than others. Everything I do eat is Organic.

I appreciate your help for a newbie. Thanks.

CynIt's only a deal if it's where you want to go. Find your travel deal here.

August 28, 2008

Welcome Cyn -

There are varying things that people feel. Since I lost my thyroid to

cancer before taking iodine I don't have that experience but I can tell you

what I have been told by others.

Many feel a surge or swelling of their thyroid as the iodine gets into the

tissues. You didn't mention how much you took. For some just a little will

do it. For others it takes a lot more like 50 mgs. Have you had your

thyroid antibodies checked to determine if you have Hashimotos? This can be

a reason why others are sensitive to adding iodine.

Make sure that you are supporting your body with the co-factors for iodine

like Selenium, magnesium and unrefined sea salt. You can find the nutrients

on my website at www.naturalthyroidchoices.com .

How long it takes to feel better is also very individual. If you are very

toxic with halides like bromide and fluoride or you continue to be exposed

to them it can take a long time to feel better because you will go through a

detox. You may feel more energy in a few days but some who detox report

fatigue that you must push through. For me it took 4 weeks of detoxing

before I started feeling better. I was determine to get it out of me so I

just supported my liver and kidneys, took breaks off and on and made it

through. How do you eat? Is it a clean / nourishing diet? Organic? These

are considerations.

I hope I have helped. There are no definite answers unfortunately because

we are all different.

New and Need Advice

>I have never posted to a group that I just joined so I hope I'm not

> stepping on any toes cuz I need some advice quickly. I tried to do a

> search but didn't find what I was looking for. I am loaded with food

> allergies and have really bad heart palpitations (racing) my TSH is low

> and my adrenals glands are in the pits. Also my sex hormones are all

> very low. I am taking hydrocortisone for my adrenals and my dr wants

> mt to start Lugol's Iodine. I took a very small amount today. What

> have people felt when they started treating with iodine? I swear I

> could feel it in my thyriod - a little scary cuz it was my throat. I

> just felt kind of weird. My heart raced for several hours which may or

> may not be related to the iodine.

>

> What have others felt when starting treatment? And how long does this

> last and when can I expect to maybe feel a little better?

> Thanks for reading this.

> Cyn

>

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

>

August 28, 2008

HI Cyn,

What was the reason/dx the doc put you on iodine for?

This is all still so confusing to me.

I have a nutritionist who says I can/should take iodine and an

Endo who says it’s very bad for Hashis patients which I do have.

sue

On 8/28/08 9:39 PM, " lahock2000 " <LaHock@...> wrote:

I have never posted to a group that I just joined so I hope I'm not

stepping on any toes cuz I need some advice quickly. I tried to do a

search but didn't find what I was looking for. I am loaded with food

allergies and have really bad heart palpitations (racing) my TSH is low

and my adrenals glands are in the pits. Also my sex hormones are all

very low. I am taking hydrocortisone for my adrenals and my dr wants

mt to start Lugol's Iodine. I took a very small amount today. What

have people felt when they started treating with iodine? I swear I

could feel it in my thyriod - a little scary cuz it was my throat. I

just felt kind of weird. My heart raced for several hours which may or

may not be related to the iodine.

August 29, 2008

My thyroid and adrenal glands are very low. We have a swimming pool and I asked my dr if I could go in it and she said she wanted me to take iodine if I was going in the pool. I have heard iodine is bad for Hashis but I really don't know anything about this.

CynIt's only a deal if it's where you want to go. Find your travel deal here.

August 29, 2008

,

So you're saying iodine is good for Hashis? I will read that site you sent but this is contradictory to what I've heard but like I said I know nothing about this subject.

CynIt's only a deal if it's where you want to go. Find your travel deal here.

August 29, 2008

According to the iodine docs it is the only treatment for hashi's as it creates the iodolipids that put the brakes on the oxidation process (burning) of the thyroid gland. You must take selenium, Vit C and magnesium too. You can read about hashi's and iodine in Dr. Brownstein's iodine book www.drbrownstein.com

We have a pool too and I have to up my kids dosage of iodine to keep them good during the summer.

Re: New and Need Advice

My thyroid and adrenal glands are very low. We have a swimming pool and I asked my dr if I could go in it and she said she wanted me to take iodine if I was going in the pool. I have heard iodine is bad for Hashis but I really don't know anything about this.

Cyn

It's only a deal if it's where you want to go. Find your travel deal here.

August 29, 2008

You are probably exposed to halides w/o realizing it. Bromide is in bread, sports drinks, citrus soda, electronics, mattresses, carpets, flame retardants in clothing and the list goes on. Fluoride is in city water, cold cereals and teas. Eat a diet rich in fruits, veggies and meat that comes from animals fed grass and organic grains.

Re: New and Need Advice

,

I did feel that swelling in my thyroid. I took a tiny amount, my dr prescribed 1 drop and since I am so sensitive to everything I took 1/8 drop (I diluted in water to achieve this). I have not had my thyroid antibodies checked to determine Hashimotos.

I am not taking Selenium yet but am taking large doses of magnesium (trying to control my racing heart) and I tried the salt but it really made me feel swollen. My hair analysis showed very high levels of sodium, could this be why salt make me so uncomfortable?

I am not exposed to bromide or fluoride I don't think, where does bromide hide out? I am exposed to alot of chlorine. Because of my food allergies my diet is horrible. I react to everything, some things more severely than others. Everything I do eat is Organic.

I appreciate your help for a newbie. Thanks.

Cyn

It's only a deal if it's where you want to go. Find your travel deal here.

August 29, 2008

Just saw your note today. I too had a strange feeling in my throat,

warmth, no pain or anything, just a noticing of my thyroid area. It

passed and in a few weeks I started to feel some energy. I also

noticed my basal temp come up a half degree and of course, also the

bromide detox symptoms. But the detox is worth it to have some energy

and not feel like I'm on death's door.

Hope this gives you some encouragement.....

Blessings-

Vicki

>

> I have never posted to a group that I just joined so I hope I'm not