Re: hashimoto encephalopathy

[Guest guest]

We've all had so many conversations about the anemias, now I can't remember whether you said that you'd been tested for the B12 and Folic Acid. I will tell you that, when the B12 serum test is doubtful (don't ask me what that means because it does have it's own normal range, so how would we know, if it's just "passing through the blood for the moment"?), then, not only should a Schilling test be done for this (don't know what that involves either), but also a Homocysteine level. The homocysteine is supposed to be pretty reliable for the Folic Acid Anemia. A B12 anemia, would you believe, can be short for 20 or 30 yrs, but noone will know what is causing the trouble until it's so bad that the anemia finally shows up in a certain pattern of the red blood cell counts. And it seems that almost noone thinks to run it. I never went any further than the B12 serum and the Red Cell Folate tests, but I should have had these tests I just told you about. I do not know anything about the testing for Hashimoto's Encephalopothy. Nutritional anemias, though, can be very major causes of neurological symptoms that keep going downhill. I know that it sounds simple, but doctors almost have to be cajoled into doing these tests, unless they are into naturopathy.

Re: kelp and B complex

Kelp is high in iodine.. and unless you're someone with goiter from iodine deficiency... it's pretty much not good for us...

? Were you the one that posted on this a while back? Iodine and Hashi's... not being a good combo?

Topper ()

On Wed, 7 Jul 2004 16:19:30 -0700 (PDT) edumom writes:

My friend is pushing me to try these...anybody know anything about them? Any experiences?

sincerely, edumom, mother of boys ages 13-15

NO GIRLS ALLOWED!!!!

[Guest guest]

Is that multiple jerking or can it be a single jerk?

I was doing that a lot during the time that I had no meds... before I

found a source for natural thyroid and started self medicating.....

I feel really guilty about my mom.. but none of us knew.. my thyroid

storm started less than 2 years before she died and no one knew what was

wrong with me, either. When I got nuked (the RAI) it all happened so fast

that I didn't even have time to call anyone and ask what I should do..

they kept telling me at the hospital that as soon as the test results

were in to verify that they would have to do it right away or I could

die. I called my folks when I got back to my apartment.

Even as I started to slow down and go hypo.. no one pulled it

together.... My mom died that summer. She was buried on my birthday that

year... and I was so hypo from the nuke and waiting, with all the tests,

for them to determine if I had any function left that I was pretty numb

through everything that happened....

Mom and I had so many odd things in common... Our headaches (mine are

gone now), funny moles, early period.. a calcium 'pore' thing.... hair

color change (blonde to mouse brown), bad teeth.. just all kinds of

stuff... it was all considered hereditary...

Now, as I learn more and more... all mom's stuff was hypo... and your

comments about the aneurysm... darn... all from crummy irresponsible

docs... Mom went in... she was determined that there was something

wrong.. she was labeled a complainer and a hypochondriac... but that

wasn't it... she didn't imagine her pain.. it was real.. just no one

matched a cause.

Dad found her diary... he and I both read it.... Her thoughts.... You

guys have been there, many of you, so I won't go into detail.. but the

classic hypo depression. And one thought that was repeated over and over

for years. That death would be a welcome end to the pain.

She had told us to have a huge party when she died. No sadness, only

laughter and good memories. We were to celebrate for her. We did just

that.. it was one of the best parties that we'd ever thrown.. before or

since. But it wasn't until we read that diary until we understood just

what it all meant.

We had been told that her low body temp (97) was normal for her. We were

told that the headaches were normal... the back pain, the weight gain,

the temp intolerance.. that was all due to the brain surgery. The brain

fog and forgetfulness and the dwelling in the past was all said to be

leakage from the aneurysm.. yet that started months before the seizure

that alerted the docs to the aneurysm.

Heck.. when she went in with the horrendous neck and head pain they told

her to take these (Tylenol 3) and stay in bed for a couple of weeks... it

was a week into that that it started to leak and she went into

convulsions.. they never even tested her for the pain, and she had a HIGH

threshold for pain.. so it wasn't just a lark for her to go in to say she

hurt... Just take 2 of these and go to bed......

Oh... give me a bat.. no, I'll grab a crutch... I need to go beat some

docs and then hand them a couple of aspirin and tell them to go to

bed....

Topper ()

On Wed, 14 Jul 2004 09:58:18 -0300 Janaina Viggiano

writes:

> Monoclonal jerks are when you are almost falling asleep and your arms

> and legs just shake really strongly, like in a convulsion, and it

> wakes you up.

>

> Topper, the hypo and the aneurism are not mutually exclusive I

> think. My

> grandma was hypo, she died of an aneurism. I am pretty sure the same

>

> poor circulation that makes hypo people more prone to heart attacks

> makes them more prone to aneurisms.

>

>

> Jan

[Guest guest]

For me it is more like a single jerk - that is what makes it different

from restless leg syndrome, where it keeps shaking.

I am terribly sorry about your mom. It is terrible what people like her

have suffered, and so many still suffer nowadays. My grandma probably

would have lived to be more than 61 also if it hadn't been for the hypo

and poor treatment. She tried everything, all sorts of alternative

treatments, but she went through the old thing - doctors refusing to

treat until she was really sick, alternative quacks giving her iodine

for the hypo, then tiny doses of meds until she found a Chinese doctor

who must have been following some sort of 's protocol, cause I

remember she took Cytomel 2x a day. That is when she got healthy for a

while, but I think the damage to her body was too extensive by then,

cause a few years later she had the aneurism and died.

That is what I mean about this possible diagnosis of Hashi's

encephalopathy - it is supposed to be a really rare condition, and yet

so many of us have a ton of those symptoms. So something is wrong -

either those symptoms are not really proof that you have encephalopathy

and you can only find it with an MRI or something, or it is not a rare

disease and there are tons of Hashi's people with it. That is what I

find so bizarre.

Also, I found it very interesting that the treatment for that is with

*physiological dosages of steroids*. It is exactly the same treatment a

ton of us are on for adrenal fatigue, following the Jefferies and

Peatfield protocols. The article about this on 's site is written by

a woman who is on 5mg Prednisone - same as I am, same as Peatfield

recommends. A lot of us feel that the thyroid pills only work when the

adrenal issues are addressed, otherwise we still have symptoms,

especially brain fog. So is Hashi's encephalopathy really a disease, or

is it like fibromyalgia, just a symptom of poorly treated hypothyroidism

with adrenal fatigue? Cause if doing the same treatment people do for

adrenal fatigue cures it... It is a crazy theory, but I thought you'd

enjoy it cause you also have a curious mind.

Jan

topper2@... wrote:

>Is that multiple jerking or can it be a single jerk?

>

>I was doing that a lot during the time that I had no meds... before I

>found a source for natural thyroid and started self medicating.....

>

>I feel really guilty about my mom.. but none of us knew.. my thyroid

>storm started less than 2 years before she died and no one knew what was

>wrong with me, either. When I got nuked (the RAI) it all happened so fast

>that I didn't even have time to call anyone and ask what I should do..

>they kept telling me at the hospital that as soon as the test results

>were in to verify that they would have to do it right away or I could

>die. I called my folks when I got back to my apartment.

>

>Even as I started to slow down and go hypo.. no one pulled it

>together.... My mom died that summer. She was buried on my birthday that

>year... and I was so hypo from the nuke and waiting, with all the tests,

>for them to determine if I had any function left that I was pretty numb

>through everything that happened....

>

>Mom and I had so many odd things in common... Our headaches (mine are

>gone now), funny moles, early period.. a calcium 'pore' thing.... hair

>color change (blonde to mouse brown), bad teeth.. just all kinds of

>stuff... it was all considered hereditary...

>

>Now, as I learn more and more... all mom's stuff was hypo... and your

>comments about the aneurysm... darn... all from crummy irresponsible

>docs... Mom went in... she was determined that there was something

>wrong.. she was labeled a complainer and a hypochondriac... but that

>wasn't it... she didn't imagine her pain.. it was real.. just no one

>matched a cause.

>

>Dad found her diary... he and I both read it.... Her thoughts.... You

>guys have been there, many of you, so I won't go into detail.. but the

>classic hypo depression. And one thought that was repeated over and over

>for years. That death would be a welcome end to the pain.

>

>She had told us to have a huge party when she died. No sadness, only

>laughter and good memories. We were to celebrate for her. We did just

>that.. it was one of the best parties that we'd ever thrown.. before or

>since. But it wasn't until we read that diary until we understood just

>what it all meant.

>

>We had been told that her low body temp (97) was normal for her. We were

>told that the headaches were normal... the back pain, the weight gain,

>the temp intolerance.. that was all due to the brain surgery. The brain

>fog and forgetfulness and the dwelling in the past was all said to be

>leakage from the aneurysm.. yet that started months before the seizure

>that alerted the docs to the aneurysm.

>

>Heck.. when she went in with the horrendous neck and head pain they told

>her to take these (Tylenol 3) and stay in bed for a couple of weeks... it

>was a week into that that it started to leak and she went into

>convulsions.. they never even tested her for the pain, and she had a HIGH

>threshold for pain.. so it wasn't just a lark for her to go in to say she

>hurt... Just take 2 of these and go to bed......

>

>Oh... give me a bat.. no, I'll grab a crutch... I need to go beat some

>docs and then hand them a couple of aspirin and tell them to go to

>bed....

>

>Topper ()

>

>

>

[Guest guest]

I does make you wonder, doesn't it? How many things are folks suffering

from that are just a case of one or two strong hypo symptoms standing out

and that being addressed and the thyroid issues not even checked out?

I think back to one of the things that my mom did that made her feel so

much better.. to the point where I once drove an hour to her house to

pick up money and then another hour and a half, in a storm (in clear

weather the whole trip would have only been and hour and a half) so that

I could pick up a quart of heavy water... it was H2O2 that was supposed

to increase the oxygenation of the blood, increasing energy and

alertness.. and that is exactly what it did for her.. but when I tried

it.. didn't do a thing for me (I was hyper at the time and didn't know

it). One of the things that we deal with is poor breathing and low iron

which reduces the oxygen content of the blood....

So just another goofy thing that she did that made her feel better that

no one else understood. We still have a bottle of it in the stuff

freezer. It doesn't freeze.. and mom has been gone for 14 years.

We need a telethon or something - to make folks aware.. not only for

themselves but for their kids and parents and friends... How many folks

are still going through this H**** simply because they don't know it's

not 'normal' or that it's not 'all in their heads'....

.... sliding soap box into corner.....

So, back to the head thing... it's swelling inside the skull that would

only show up in an MRI? Scary..

Curious mind.. that's one way of putting it! hehehehehehe I guess the

more I hear/learn the more things I find that pull together to give a

clearer picture.. this thyroid picture is soooo fuzzy... it really takes

some effort to make it clearer....

Topper ()

On Wed, 14 Jul 2004 16:41:55 -0300 Janaina Viggiano

writes:

> For me it is more like a single jerk - that is what makes it

> different

> from restless leg syndrome, where it keeps shaking.

> I am terribly sorry about your mom. It is terrible what people like

> her

> have suffered, and so many still suffer nowadays. My grandma

> probably

> would have lived to be more than 61 also if it hadn't been for the

> hypo

> and poor treatment. She tried everything, all sorts of alternative

> treatments, but she went through the old thing - doctors refusing to

>

> treat until she was really sick, alternative quacks giving her

> iodine

> for the hypo, then tiny doses of meds until she found a Chinese

> doctor

> who must have been following some sort of 's protocol, cause I

> remember she took Cytomel 2x a day. That is when she got healthy for

> a

> while, but I think the damage to her body was too extensive by then,

> cause a few years later she had the aneurism and died.

>

> That is what I mean about this possible diagnosis of Hashi's

> encephalopathy - it is supposed to be a really rare condition, and

> yet

> so many of us have a ton of those symptoms. So something is wrong -

> either those symptoms are not really proof that you have

> encephalopathy

> and you can only find it with an MRI or something, or it is not a

> rare

> disease and there are tons of Hashi's people with it. That is what I

> find so bizarre.

> Also, I found it very interesting that the treatment for that is

> with

> *physiological dosages of steroids*. It is exactly the same

> treatment a

> ton of us are on for adrenal fatigue, following the Jefferies and

> Peatfield protocols. The article about this on 's site is

> written by

> a woman who is on 5mg Prednisone - same as I am, same as Peatfield

> recommends. A lot of us feel that the thyroid pills only work when

> the

> adrenal issues are addressed, otherwise we still have symptoms,

> especially brain fog. So is Hashi's encephalopathy really a disease,

or

> is it like fibromyalgia, just a symptom of poorly treated

> hypothyroidism

> with adrenal fatigue? Cause if doing the same treatment people do

> for

> adrenal fatigue cures it... It is a crazy theory, but I thought

> you'd enjoy it cause you also have a curious mind.

>

> Jan

[Guest guest]

I agree that we need a telethon. We should start pestering Dr. Phil, now

that his wife is on Armour.

It is sad that there are so many like your mom, doing crazy stuff to try

to make themselves better because doctors are inconsiderate. My grandma

did the kelp, all kinds of stuff.

I agree, it is a really fuzzy picture, but together we can make it clearer.

Jan

topper2@... wrote:

>I does make you wonder, doesn't it? How many things are folks suffering

>from that are just a case of one or two strong hypo symptoms standing out

>and that being addressed and the thyroid issues not even checked out?

>

>I think back to one of the things that my mom did that made her feel so

>much better.. to the point where I once drove an hour to her house to

>pick up money and then another hour and a half, in a storm (in clear

>weather the whole trip would have only been and hour and a half) so that

>I could pick up a quart of heavy water... it was H2O2 that was supposed

>to increase the oxygenation of the blood, increasing energy and

>alertness.. and that is exactly what it did for her.. but when I tried

>it.. didn't do a thing for me (I was hyper at the time and didn't know

>it). One of the things that we deal with is poor breathing and low iron

>which reduces the oxygen content of the blood....

>

>So just another goofy thing that she did that made her feel better that

>no one else understood. We still have a bottle of it in the stuff

>freezer. It doesn't freeze.. and mom has been gone for 14 years.

>

>We need a telethon or something - to make folks aware.. not only for

>themselves but for their kids and parents and friends... How many folks

>are still going through this H**** simply because they don't know it's

>not 'normal' or that it's not 'all in their heads'....

>

>... sliding soap box into corner.....

>

>So, back to the head thing... it's swelling inside the skull that would

>only show up in an MRI? Scary..

>

>Curious mind.. that's one way of putting it! hehehehehehe I guess the

>more I hear/learn the more things I find that pull together to give a

>clearer picture.. this thyroid picture is soooo fuzzy... it really takes

>some effort to make it clearer....

>

>Topper ()

>

>

>

[Guest guest]

How do we do a tv thing? I don't want to be on national television.. but

sometimes I get soooo frustrated that I'm willing... and if the jerk that

I'm trying to avoid starts stalking me again... I just have my body

guards beat him up!!!! hehehehehehe

Topper ()

On Wed, 14 Jul 2004 20:44:44 -0300 Janaina Viggiano

writes:

> I agree that we need a telethon. We should start pestering Dr. Phil,

> now

> that his wife is on Armour.

>

> It is sad that there are so many like your mom, doing crazy stuff to

> try

> to make themselves better because doctors are inconsiderate. My

> grandma

> did the kelp, all kinds of stuff.

>

> I agree, it is a really fuzzy picture, but together we can make it

> clearer.

>

>

>

> Jan

[Guest guest]

I get those every so often, in one of my legs.

Great! One more risk factor for heart disease to add to my list (very

poor genetics, PCOS, diabetes, high cholesterol, birth control pills).

So do the monoclonal jerks indicate poor circulation? Not a clot, I hope?

blithe

> Monoclonal jerks are when you are almost falling asleep and your arms

> and legs just shake really strongly, like in a convulsion, and it wakes

> you up.

>

> Topper, the hypo and the aneurism are not mutually exclusive I

think. My

> grandma was hypo, she died of an aneurism. I am pretty sure the same

> poor circulation that makes hypo people more prone to heart attacks

> makes them more prone to aneurisms.

>

>

> Jan

[Guest guest]

hi, the monoclonal jerks are from the thyroid attacking the neurons in the brain and interrupting electrical activity - like when ppl have an irregular heartbeat and need a pacemaker - same sort of thing with the brain......i'll let you know how it works b/c i just started treatment for it -- my EEG was abnormal and the neuro said these are seizure like activity with the jerking. he expects them to go away after steroid treatment but if not we have to rule that out and consider it epileptic type seizures and start me on medication for that -- i think its the thyroid b/c of the way all the symptoms started togeather - time will tell.

the oxygen to the brain was good - my O2 sats were great so its the electrical activity that is being interfered with -

visit our website

www.geocities.com/tanyarn96/countryside.html

www.poncetihomes.com

-- Re: Re: hashimoto encephalopathy

Actually from what I've read the monoclonal jerks are from lack of oxygen to the brain... so a balanced thyroid should take care of them.Janblithezb00tik wrote:>I get those every so often, in one of my legs. >Great! One more risk factor for heart disease to add to my list (very>poor genetics, PCOS, diabetes, high cholesterol, birth control pills).>So do the monoclonal jerks indicate poor circulation? Not a clot, I hope?>>blithe>> >

[Guest guest]

Thanks for the correction. I had an EEG, an MRI, the whole thing when I

was untreated though and it was all normal, but I was still having the

monoclonal jerks. They were one of my first symptoms, right after the

goiter, much before I started forgetting stuff.

Jan

wrote:

> hi, the monoclonal jerks are from the thyroid attacking the neurons in

> the brain and interrupting electrical activity - like when ppl have an

> irregular heartbeat and need a pacemaker - same sort of thing with the

> brain......i'll let you know how it works b/c i just started treatment

> for it -- my EEG was abnormal and the neuro said these are seizure

> like activity with the jerking. he expects them to go away after

> steroid treatment but if not we have to rule that out and consider it

> epileptic type seizures and start me on medication for that -- i think

> its the thyroid b/c of the way all the symptoms started togeather -

> time will tell.

> the oxygen to the brain was good - my O2 sats were great so its the

> electrical activity that is being interfered with -

>

>

> visit our website

> www.geocities.com/tanyarn96/countryside.html

> <http://www.geocities.com/tanyarn96/countryside.html>

> www.poncetihomes.com

> <http://www.poncetihomes.com/>

>

>

>

>

>

>

>

>

> *

[Guest guest]

I've talked about this before, but I had a severe case of vertigo back in '98, around 4 yrs after I was diagnosed with hypo. I had felt really good up until this point, even on Synthroid, then Levoxyl. I now have a permanent case of earringing from this bout. The slight earringing was first, then sound changes from other people's voices by telephone (sound conduction is different through a telephone to the inner ear than it is out in the open), then came the vertigo and Dandy's Syndrome, and the most horrible part of it lasted for several wks, then improved over the next 3 months or so after that. I still have subtle changes in balance, when I walk and look behind me or looking way up above me, and the earringing got louder and never went away. I had been exposed over and over to the Smokeout in Texas, when the winds were bringing all the smoke from the Mexican fires that went on for several monts during that yr. Yes, the doctor said that there were 30 to 40 cases of people with a strange vertigo in town over a period of a week or so, and during the previous wks and for several wks after was the heaviest part of the smoke. I lifted my window a lot (crazy me!). I slept with the window open because of a claustrophobic feeling I had back then (that I don't have now, BTW). I got up one morning and fell in the floor, and that's when all the fun started. But here's the big thing about it----I NEVER felt good after that day, and it was then that my thyroid function went downhill on a slow drift and culminated in me getting my own tests this yr. Now, what I'm wondering is if my antibodies might have been high then, and could they have been attacking the inner ear parts. I looked up something on this last yr and found out that those thyroid antibodies CAN attack the inner ear, as well as other body parts. Does anyone know anything else about this, more than what I picked up reading? This was basically all the info that was written on the sbjct, and, even though I am now on Armour and am feeling somewhat better, and can at least function better, I still have this earringing. They never did an MRI on my head, but did attach some sort of electrodes to my head in the audiologist's office to test for brain tumor, so THEY said. I was given antihistamines, flonase, for this, but heck, I already knew I had nasal allergies and had already treated myself on and off for them, to try to clear my sinuses and ears. This is all they ever did for me.

Re: Re: hashimoto encephalopathy

Actually from what I've read the monoclonal jerks are from lack of oxygen to the brain... so a balanced thyroid should take care of them.Janblithezb00tik wrote:>I get those every so often, in one of my legs. >Great! One more risk factor for heart disease to add to my list (very>poor genetics, PCOS, diabetes, high cholesterol, birth control pills).>So do the monoclonal jerks indicate poor circulation? Not a clot, I hope?>>blithe>> >