Re: hashimoto encephalopathy

July 8, 2004

hi,

i saw a new neurologist yesterday to get a 2nd opinion about the 1st dr's diagnosis and he actually sat and took my whole life from the time i had the 1st problem - best history and physical i ever had - i failed the neuro test - could remember anything - he really thinks my problems are not neurological but thyroid related and since so many of my problems are mental decline he thinks i have hash encephalitis but was glad i have an appt next week with an endo so he can see what she says and he thinks i need to be treated with high dose cortisone - he said if she wouldn't do it he would certainly consider it -- however - after i focused my research on that i think i will either ask her 1st about surgery to remove it and if that isn't an option i want the IVIG immunogobulin therapy which is much less toxic to the body - i just don't know if my insurance will cover it - i'll say i have bad reactions to prednisone. one way or another i'm coming out of that visit with a treatment plan - i feel like i need to be in the hospital. my 4 yr old just asked me why i'm sick all the time - that makes me even more depressed. the hot flashes are killing me - i'm going to see a new gyn also - i'm firing all my old dr's -- i'm going to see if the thyroid is indeed the reason for the drop in estrogen as they think and if not then its as a result of the tubal and if thats the case i'm going to see about doing surgery for a reversal and see if that helps.

after reading quite a bit of info about the encephalitis i'm convinced thats what i have and i'm going to flat out tell her that.

can you give me a list of labs that i should have drawn and any other tests that need to be ran?

visit our website

www.geocities.com/tanyarn96/countryside.html

www.poncetihomes.com

-- Re: kelp and B complex

I was one, and I just answered this one. There was a site that talked about Hashi's people possibly having iodine allergy, but it didn't go into any great details. I don't know what I did with that link, or if I even saved it.

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!!!!

July 11, 2004

,

With hypo as bad as yours, I would not believe the encephalitis

diagnosis. There is a very good chance it is just the hypo. Are there

any non-hypo symptoms the encephalitis has that you have?

Jan

wrote:

> hi,

> i saw a new neurologist yesterday to get a 2nd opinion about the 1st

> dr's diagnosis and he actually sat and took my whole life from the

> time i had the 1st problem - best history and physical i ever had - i

> failed the neuro test - could remember anything - he really thinks my

> problems are not neurological but thyroid related and since so many of

> my problems are mental decline he thinks i have hash encephalitis but

> was glad i have an appt next week with an endo so he can see what she

> says and he thinks i need to be treated with high dose cortisone - he

> said if she wouldn't do it he would certainly consider it -- however -

> after i focused my research on that i think i will either ask her 1st

> about surgery to remove it and if that isn't an option i want the IVIG

> immunogobulin therapy which is much less toxic to the body - i just

> don't know if my insurance will cover it - i'll say i have bad

> reactions to prednisone. one way or another i'm coming out of that

> visit with a treatment plan - i feel like i need to be in the

> hospital. my 4 yr old just asked me why i'm sick all the time - that

> makes me even more depressed. the hot flashes are killing me - i'm

> going to see a new gyn also - i'm firing all my old dr's -- i'm going

> to see if the thyroid is indeed the reason for the drop in estrogen as

> they think and if not then its as a result of the tubal and if thats

> the case i'm going to see about doing surgery for a reversal and see

> if that helps.

> after reading quite a bit of info about the encephalitis i'm convinced

> thats what i have and i'm going to flat out tell her that.

> can you give me a list of labs that i should have drawn and any other

> tests that need to be ran?

>

> visit our website

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

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

> www.poncetihomes.com

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

>

> /--*/ Re: kelp and B complex

>

> I was one, and I just answered this one. There was a site that talked

> about Hashi's people possibly having iodine allergy, but it didn't go

> into any great details. I don't know what I did with that link, or if

> I even saved it.

>

> * 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 <edumom_b@...

> > 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!!!!

>

> *

July 11, 2004

these are the symptoms of hashimotos encephalopathy:

confusion, disorientation, psychosis, coma, tremors, convulsions, concentration problems, attention span problems, difficulty retaining information, short term memory problems, seizure activity, monoclonal jerks - involuntary muscle jerks, dementia, fatigue, coordination difficulties, headaches, episodes of stroke, stroke like disorientation, right side partial paralysis, speech difficulties, articulation difficulties, word finding difficulties, fine motor movement problems - coordination of arms hands and fingers.

out of these 23 symptoms i have 12 --- the main thing is the monoclonal jerks - i don't think this is a hypo thing or is it? its almost like seizure activity but it only happens when i'm drifting off to sleep and the whole time i'm sleeping - they are very strong - not just tremor type movement. also the mental problems listed here i have them all and i think it goes way past brain fog like with hypo - its scaring me - i've stopped driving because i can't remember where i was going or can't remember how to get there - i feel like alzheimers to me....when i went to the neurologist he did his exam and he tells you 3 items and says to remember them - he told me to remember tobacco, airplane, and something else i can't remember right now (LOL) ...then he proceeded with the exam and had me walk a straight line like the drunk test and i couldn't walk a straight line and was very off balance - he didn't tell me if i did OK on all the reflexes but 5 min later he asked me tthose 3 words and i could only remember one of them - thats bad......i make my husband come with me because i can't remember what to tell the dr and then i can't remember what the dr tells me -- i just asked him what the neuro said and he said he is pretty confident that this is what i have because of the jerking activity and how bad the mental part is but he said he wants to see what the endo thinks but he said he would treat me with steroids if she wasn't willing to help me and he also mentioned that he could send me to one of the teaching hospitals in new orleans if neccessary.

you know how you can read an article and you freak out because it sounds like they are talking about you and just forgot to put your name in - well - thats how i was about all the articles i read on this.

like anything else though it has degrees of severity as you can see with the stroke and coma - i'm not that bad but i have the first half of the symptoms - the only ones i don't have are the most severe of them and hope i don't get there.

i guess my question is - how bad is brain fog - what exactly do y'all experience?

i have an EEG this week and my neuro appt (TG) i've already had 2 abnormal EEG's in the past - unrelated to hypo as far as i know - they dx'd me as having some sort of seizures that you don't know you are having - i wasn't having this jerking activity and memory stuff until i guess 6 months ago and its progressively gettting worse.

hopefully this enddo will give me a dx and treat me b/c i'm at the end of my rope and ready to check myself into a mental institution since i can't go to the hospital. i'm really that bad. keep fingers crossed for me this week and i'll touch base and let y'all know whats going on....

visit our website

www.geocities.com/tanyarn96/countryside.html

www.poncetihomes.com

--*/ Re: kelp and B complex> > I was one, and I just answered this one. There was a site that talked > about Hashi's people possibly having iodine allergy, but it didn't go > into any great details. I don't know what I did with that link, or if > I even saved it.> > > > * 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!!!!> >> >> > >>> *

July 12, 2004

, I quite frankly think that there's a whole lot of us with these symptoms, but many of us are not fortunate enough to find a doctor who would even consider this for 2 seconds out a 15 minute visit to them. Will be praying for you to find answers.

* Re: kelp and B complex>> Ke! lp 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!!!!> >> >> > >>> *

July 13, 2004

,

Out of those I have had when in hypo: confusion, disorientation,

tremors, concentration problems, attention span problems, difficulty

retaining information, short term memory problems, seizure activity

(when I was untreated, any fever I had turned into seizures. Also

everytime I have had surgery since I've been hypo, I have seizures),

monoclonal jerks, fatigue, coordination difficulties, headaches, speech

difficulty, articulation difficulties, word finding difficulties,

coordination of arms hands and fingers.

So I think many people here have encephalopathy, then. I don't know, you

are the first that has ever mentioned being Dx with this and lots of

people complain of these symptoms.

Even when I am perfectly fine I still have the monoclonal jerks, I've

had those since my teens, since before any other hypo symptoms. My

problem with the words (aphasia) was so bad the doctors did all sorts of

neurological tests on me when I was untreated, looking for a tumor or

something, and I was perfectly ok according to a bunch of neurologists,

including my own cousin, who I trust. So if there was technically

nothing wrong with my brain when I had all these symptoms, it either

means docs grossly underdiagnose this encephalopathy and tons of us have

it, or that just having these symptoms doesn't necessarily mean you have

encephalopathy - it might, it might not.

I don't know, I am no doctor, but I don't think that you necessarily

have this.

Jan

wrote:

these are the symptoms of hashimotos encephalopathy:

confusion, disorientation, psychosis, coma, tremors, convulsions,

concentration problems, attention span problems, difficulty retaining

information, short term memory problems, seizure activity, monoclonal

jerks - involuntary muscle jerks, dementia, fatigue, coordination

difficulties, headaches, episodes of stroke, stroke like disorientation,

right side partial paralysis, speech difficulties, articulation

difficulties, word finding difficulties, fine motor movement problems -

coordination of arms hands and fingers.

out of these 23 symptoms i have 12 --- the main thing is the monoclonal

jerks - i don't think this is a hypo thing or is it? its almost like

seizure activity but it only happens when i'm drifting off to sleep and

the whole time i'm sleeping - they are very strong - not just tremor

type movement. also the mental problems listed here i have them all and

i think it goes way past brain fog like with hypo - its scaring me -

i've stopped driving because i can't remember where i was going or can't

remember how to get there - i feel like alzheimers to me....when i went

to the neurologist he did his exam and he tells you 3 items and says to

remember them - he told me to remember tobacco, airplane, and something

else i can't remember right now (LOL) ...then he proceeded with the exam

and had me walk a straight line like the drunk test and i couldn't walk

a straight line and was very off balance - he didn't tell me if i did OK

on all the reflexes but 5 min later he asked me tthose 3 words and i

could only remember one of them - thats bad......i make my husband come

with me because i can't remember what to tell the dr and then i can't

remember what the dr tells me -- i just asked him what the neuro said

and he said he is pretty confident that this is what i have because of

the jerking activity and how bad the mental part is but he said he wants

to see what the endo thinks but he said he would treat me with steroids

if she wasn't willing to help me and he also mentioned that he could

send me to one of the teaching hospitals in new orleans if neccessary.

you know how you can read an article and you freak out because it sounds

like they are talking about you and just forgot to put your name in -

well - thats how i was about all the articles i read on this.

like anything else though it has degrees of severity as you can see with

the stroke and coma - i'm not that bad but i have the first half of the

symptoms - the only ones i don't have are the most severe of them and

hope i don't get there.

i guess my question is - how bad is brain fog - what exactly do y'all

experience?

i have an EEG this week and my neuro appt (TG) i've already had 2

abnormal EEG's in the past - unrelated to hypo as far as i know - they

dx'd me as having some sort of seizures that you don't know you are

having - i wasn't having this jerking activity and memory stuff until i

guess 6 months ago and its progressively gettting worse.

hopefully this enddo will give me a dx and treat me b/c i'm at the end

of my rope and ready to check myself into a mental institution since i

can't go to the hospital. i'm really that bad. keep fingers crossed for

me this week and i'll touch base and let y'all know whats going on....

visit our website

www.geocities.com/tanyarn96/countryside.html

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

www.poncetihomes.com

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

July 14, 2004

Jan,

What are monoclonal jerks?

As I follow this thread I'm having the most horrible thoughts.. that my

mom never had a brain aneurysm. Or that, if she did, it was from

undiagnosed, untreated long term hypo.

I don't dare find out... Or I'll be the one you'll hear about on the news

blowing away all the doctors in a local hospital and the sister clinic

across the street.. then heading downtown to blast the shrinks that

worked with her after the surgery.

All my life my mom had problems and was in and out of the doctor's

offices and hospitals and they never did squat for her... always telling

her that it was in her head... I look at the symptoms that she had now

(she's been dead for 13 years... wow... in a week) and it all just

screams hypo... and no one knew.

Topper ()

On Tue, 13 Jul 2004 23:21:27 -0300 Janaina Viggiano

writes:

> ,

>

> Out of those I have had when in hypo: confusion, disorientation,

> tremors, concentration problems, attention span problems, difficulty

> retaining information, short term memory problems, seizure activity

> (when I was untreated, any fever I had turned into seizures. Also

> everytime I have had surgery since I've been hypo, I have seizures),

> monoclonal jerks, fatigue, coordination difficulties, headaches,

> speech

> difficulty, articulation difficulties, word finding difficulties,

> coordination of arms hands and fingers.

> So I think many people here have encephalopathy, then. I don't know,

> you

> are the first that has ever mentioned being Dx with this and lots of

> people complain of these symptoms.

> Even when I am perfectly fine I still have the monoclonal jerks,

> I've

> had those since my teens, since before any other hypo symptoms. My

> problem with the words (aphasia) was so bad the doctors did all

> sorts of

> neurological tests on me when I was untreated, looking for a tumor > or

> something, and I was perfectly ok according to a bunch of

> neurologists,

> including my own cousin, who I trust. So if there was technically

> nothing wrong with my brain when I had all these symptoms, it either

> means docs grossly underdiagnose this encephalopathy and tons of us

> have

> it, or that just having these symptoms doesn't necessarily mean you

> have encephalopathy - it might, it might not.

>

> I don't know, I am no doctor, but I don't think that you necessarily

have this.

>

> Jan

July 14, 2004

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

topper2@... wrote:

>Jan,

>

>What are monoclonal jerks?

>

>As I follow this thread I'm having the most horrible thoughts.. that my

>mom never had a brain aneurysm. Or that, if she did, it was from

>undiagnosed, untreated long term hypo.

>

>I don't dare find out... Or I'll be the one you'll hear about on the news

>blowing away all the doctors in a local hospital and the sister clinic

>across the street.. then heading downtown to blast the shrinks that

>worked with her after the surgery.

>

>All my life my mom had problems and was in and out of the doctor's

>offices and hospitals and they never did squat for her... always telling

>her that it was in her head... I look at the symptoms that she had now

>(she's been dead for 13 years... wow... in a week) and it all just

>screams hypo... and no one knew.

>

>Topper ()

>

July 15, 2004

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.

Jan

blithezb00tik 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

>

July 17, 2004

jan, from what i've read it seems to say that its a disease process all its own and not a symptom. there are all kinds of theories but they ddo think many more of us have it than they think. for me the jerking is extreme and about 3 min apart and effects my whole body - my arm might fly up, my leg will kick out, i've been bent over at the waist - my head will jerk to the side, my face gets contorted, i can feel my back and neck doing it. it only starts when i'm dozing off and continues all night. the bad thing is there is no definitive test for diagnosis - they can do EEG's but they can go either way, MRI's may go either way - CSF may or may not have proteins - they took my abnormal EEG and my word on the change in symptoms for a diagnosis - there is a type 1 and type 2 with type 2 having the stroke type symptoms - there is like 24 different symptoms and i have at least 12 of those strongly and i would definitely have type 1 (TG)......i'm not familiar with adrenal fatigue nor the protocols you listed but steroids are used in high doses to suppress the immmune system and for inflammation - the woman from mary's site started out at 96 mg a day and was titrated down to 4 mg a day......they are supposed to wean you off completely where you have no meds except thyroid meds UNLESS you have a flare up then you get back on the steroids but at the dose you left off at - not back at the high dose.....this is a remission type disease.....the definition is the way our body attacks our thyroid - with HE it attacks the neurons in the brain. they also use steroids with cancer for immunosuppression. like i said i can't compare to adrenals b/c i'm not familiar - same with the protocols - i don't know what those are for -- but if its an autoimmune disease then i would think you see the same treatment - same as you see cross over treatment with different types of cancer.

i'll be able to tell you soon how the treatment works for me.

visit our website

www.geocities.com/tanyarn96/countryside.html

www.poncetihomes.com

-- Re: hashimoto encephalopathy

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.Jantopper2@... 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 ()>> >

July 17, 2004

,

Mine usually don't continue all night, hopefully - it is only when I am

about to fall asleep, for around 1 hour a night (since I keep falling

asleep again and again) and during the day if I try to take a nap. But

mine went away in the past without any steroids, so I am sure they are

the same symptom but caused by a different problem. Now I am on steroids

(low-dose) but still having them. I always have an ashtma type thing and

the constant yawning going on when I have the jerks, so that is why I

speculate it might be from lack of oxygen in my case.

It is a good thing that the dosage of steroids is gonna be reduced

eventually, but I am concerned that if you are off of them completely,

your adrenal glands are not gonna kick back in and then you are gonna

have all the symptoms of adrenal fatigue. Of course now you should focus

on getting well from the encephalopathy, but be extra careful when it is

time to stop the prednisone, as adrenal fatigue in someone taking

thyroid meds can be pretty scary cause it causes an intolerance to the

thyroid meds.

Jan

wrote:

> jan, from what i've read it seems to say that its a disease process

> all its own and not a symptom. there are all kinds of theories but

> they ddo think many more of us have it than they think. for me the

> jerking is extreme and about 3 min apart and effects my whole body -

> my arm might fly up, my leg will kick out, i've been bent over at the

> waist - my head will jerk to the side, my face gets contorted, i can

> feel my back and neck doing it. it only starts when i'm dozing off and

> continues all night. the bad thing is there is no definitive test for

> diagnosis - they can do EEG's but they can go either way, MRI's may go

> either way - CSF may or may not have proteins - they took my abnormal

> EEG and my word on the change in symptoms for a diagnosis - there is a

> type 1 and type 2 with type 2 having the stroke type symptoms - there

> is like 24 different symptoms and i have at least 12 of those strongly

> and i would definitely have type 1 (TG)......i'm not familiar with

> adrenal fatigue nor the protocols you listed but steroids are used in

> high doses to suppress the immmune system and for inflammation - the

> woman from mary's site started out at 96 mg a day and was titrated

> down to 4 mg a day......they are supposed to wean you off completely

> where you have no meds except thyroid meds UNLESS you have a flare up

> then you get back on the steroids but at the dose you left off at -

> not back at the high dose.....this is a remission type disease.....the

> definition is the way our body attacks our thyroid - with HE it

> attacks the neurons in the brain. they also use steroids with cancer

> for immunosuppression. like i said i can't compare to adrenals b/c i'm

> not familiar - same with the protocols - i don't know what those are

> for -- but if its an autoimmune disease then i would think you see the

> same treatment - same as you see cross over treatment with different

> types of cancer.

> i'll be able to tell you soon how the treatment works for me.

>

> visit our website

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

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

> www.poncetihomes.com

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

>

> /--*/ Re: hashimoto encephalopathy

>

> 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 te

>

> *

July 19, 2004

I experience the monoclonal jerks, on very rare occasions now. I do

take seizure meds, to control migraines... migraine disease and

epilepsy are interrelated. That may be the reason I do not have the

monoclonal jerks any longer. The MRI I had for my migraines came out

normal. All this while being treated for thyroid disease... granted,

undertreated, but treated somewhat, none-the-less.

Cathryn

>

> > 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/>

> >

> > *

July 19, 2004

I've had all kinds of neuro exams, first cause my cousin is a

neurologist and I was sort of her guinea pig when she was in med school,

and second cause I have severe sinus infections and they always wanna

check if that is really what is causing my headaches or if I have a

brain problem of some kind. The brain is ok so there is no

encephalopathy, so I am thinking that those symptoms are not definite

indicators of HE, just risk factors that justify doing the brain tests.

I tend to have seizures though, both when I take anesthesia and when I

have fever - been having them since I was a toddler. This could be

related. had monoclonal jerks this afternoon, when I tried to nap.

Jan

Cathryn wrote:

>I experience the monoclonal jerks, on very rare occasions now. I do

>take seizure meds, to control migraines... migraine disease and

>epilepsy are interrelated. That may be the reason I do not have the

>monoclonal jerks any longer. The MRI I had for my migraines came out

>normal. All this while being treated for thyroid disease... granted,

>undertreated, but treated somewhat, none-the-less.

>

>Cathryn

>

July 19, 2004

From what I've read true HE is very rare. I know the about.com site

had a link to another site. I checked it out because I had a serious

head injury last year and have Hashi's.

Louise

>

> >I experience the monoclonal jerks, on very rare occasions now. I

do

> >take seizure meds, to control migraines... migraine disease and

> >epilepsy are interrelated. That may be the reason I do not have

the

> >monoclonal jerks any longer. The MRI I had for my migraines came

out

> >normal. All this while being treated for thyroid disease...

granted,

> >undertreated, but treated somewhat, none-the-less.

> >

> >Cathryn

> >

July 20, 2004

I just think that this is too peculiar to be coincidental---Both me and two

of my girls had granmal seizures when children. I had two at about age 3

and studdered for a yr or two after that, then the studdering completely

stopped. My first daughter from my first marriage had one heavy seizure,

with no explanation, at the age of 16 months. My second daughter from that

marriage had 3 granmal seizures, approximately 4 hrs apart, at the age of 18

months, no explanation, and both had all the tests available at that time.

Nothing was found, except nothing was EVER mentioned about thyroid, but they

or me would never have known to test for that 32 yrs ago and 26 yrs ago,

respectively. I had school testing done on the second daughter (not knowing

to do this with the first one), and she was found to have attention deficit.

Both had terrible learning problems in school, with inability to concentrate

and depression, anxiety. One is now 34, the other 28. Both were diagnosed

with Hashimoto's and hypothyroidism l0 yrs ago, and 8 yrs ago, respectively.

These children from my first marriage are the only ones so far to be

diagnosed with any form of thyroid disorder (I suspect their father may have

had hyperTGraves and I think thyroid disorder also ran in their family, when

I think back). The two children from my second marriage display no symptoms

of thyroid disorder, and BTW, never had seizures as children or at any other

time in their lives. My brother, who is now deceased, of indirect " bipolar

disorder " (yeh, I bet I know what it was now, I've often thought), and

alcoholism, also had sezures at about the age of 18 months to 2 yrs old, no

explanation ever derived at any time. You can say I'm leaping way out in

left field here, but I say that ALL of it was the chromosomal disorder of

Hashimoto's, and that it was one of the manifestations of the disease,

though, I would say in my brother's case, it could have been Grave's, where

the full blown eye disease never manifested itself. I do remember that

" stare " he had though. The trouble started with him at about the age of 10,

with all kinds of physical manifestations, stomach problems, weight loss,

very hyper behaviors, and you know the rest probably.

Re: Re: hashimoto encephalopathy

> I've had all kinds of neuro exams, first cause my cousin is a

> neurologist and I was sort of her guinea pig when she was in med school,

> and second cause I have severe sinus infections and they always wanna

> check if that is really what is causing my headaches or if I have a

> brain problem of some kind. The brain is ok so there is no

> encephalopathy, so I am thinking that those symptoms are not definite

> indicators of HE, just risk factors that justify doing the brain tests.

>

> I tend to have seizures though, both when I take anesthesia and when I

> have fever - been having them since I was a toddler. This could be

> related. had monoclonal jerks this afternoon, when I tried to nap.

>

> Jan

>

> Cathryn wrote:

>

> >I experience the monoclonal jerks, on very rare occasions now. I do

> >take seizure meds, to control migraines... migraine disease and

> >epilepsy are interrelated. That may be the reason I do not have the

> >monoclonal jerks any longer. The MRI I had for my migraines came out

> >normal. All this while being treated for thyroid disease... granted,

> >undertreated, but treated somewhat, none-the-less.

> >

> >Cathryn

July 20, 2004

It may be rare in the fact that it may not be diagnosed as what it really

is.

Re: hashimoto encephalopathy

> From what I've read true HE is very rare. I know the about.com site

> had a link to another site. I checked it out because I had a serious

> head injury last year and have Hashi's.

>

> Louise

July 20, 2004

Yes, all I've read says it is rare - and yet the list of symptoms is so

common I think everyone with Hashi's has them. So I've come to the

conclusion the list of symptoms is lousy and proves nothing. LOL

Jan

LestatL382@... wrote:

>From what I've read true HE is very rare. I know the about.com site

>had a link to another site. I checked it out because I had a serious

>head injury last year and have Hashi's.

>

>Louise

>

July 20, 2004

Yes! I had seizures for the first time when I was 3 and had a fever. I

still have them if I have a fever or anesthesia, a couple years ago I

had hernia surgery and they got so bad when I was coming to I woke up

strapped to the bed like a mental patient. I have no neuro problems that

explain this seizures either, the docs who did my surgeries also ordered

all kinds of tests when I warned them I was gonna have convulsions.

I had already been born with the " stomach problems " - I was born with a

pancreas deficiency (no production of enzymes) that doctors speculated

to be autoimmune. It caused malabsorption of everything, kind of a worse

celiac. I could only digest 2 foods: frog and brown rice. Everything

else came out the way it went in. I replaced the enzymes, but until I

healed I could only eat those 2 things, until I was almost 4. I've

researched a bit about this and it seems it hardly ever happens to

people, only to dogs - weird.

I agree it is too much of a coincidence - the same gene for autoimmune

disease has to have something to do with the seizures.

Jan

wrote:

>I just think that this is too peculiar to be coincidental---Both me and two

>of my girls had granmal seizures when children. I had two at about age 3

>and studdered for a yr or two after that, then the studdering completely

>stopped. My first daughter from my first marriage had one heavy seizure,

>with no explanation, at the age of 16 months. My second daughter from that

>marriage had 3 granmal seizures, approximately 4 hrs apart, at the age of 18

>months, no explanation, and both had all the tests available at that time.

>Nothing was found, except nothing was EVER mentioned about thyroid, but they

>or me would never have known to test for that 32 yrs ago and 26 yrs ago,

>respectively. I had school testing done on the second daughter (not knowing

>to do this with the first one), and she was found to have attention deficit.

>Both had terrible learning problems in school, with inability to concentrate

>and depression, anxiety. One is now 34, the other 28. Both were diagnosed

>with Hashimoto's and hypothyroidism l0 yrs ago, and 8 yrs ago, respectively.

>These children from my first marriage are the only ones so far to be

>diagnosed with any form of thyroid disorder (I suspect their father may have

>had hyperTGraves and I think thyroid disorder also ran in their family, when

>I think back). The two children from my second marriage display no symptoms

>of thyroid disorder, and BTW, never had seizures as children or at any other

>time in their lives. My brother, who is now deceased, of indirect " bipolar

>disorder " (yeh, I bet I know what it was now, I've often thought), and

>alcoholism, also had sezures at about the age of 18 months to 2 yrs old, no

>explanation ever derived at any time. You can say I'm leaping way out in

>left field here, but I say that ALL of it was the chromosomal disorder of

>Hashimoto's, and that it was one of the manifestations of the disease,

>though, I would say in my brother's case, it could have been Grave's, where

>the full blown eye disease never manifested itself. I do remember that

> " stare " he had though. The trouble started with him at about the age of 10,

>with all kinds of physical manifestations, stomach problems, weight loss,

>very hyper behaviors, and you know the rest probably.

>

July 20, 2004

This is from about.com:

Hashimoto's Encephalopathy: A Brief Introduction

From Shomon,Your Guide to Thyroid Disease.

by Shomon

Hashimoto's Thyroiditis is the autoimmune thyroid disease that is

the most common cause of hypothyroidism, an underactive thyroid. A

very rare condition associated with Hashimoto's Thyroiditis is

Hashimoto's Encephalopathy, a neuroendocrine disorder. Much like the

antibodies in Hashimoto's Thyroiditis attack the thyroid, in

Hashimoto's Encephalopathy, antibodies attack neurons in the brain.

While Hashimoto's Encephalopathy is quite rare (there may only be

several dozen diagnosed patients in the U.S.) it is also likely that

there are many more undiagnosed sufferers. Because it is little

known and its symptoms are primarily neurological, it is easy to

misdiagnosis or overlook and the symptoms frequently lead to

mistaken neurological diagnoses.

Some of the most common symptoms of Hashimoto's Encephalopathy

include: disorientation, psychosis, tremors, concentration and

memory problems, jerks in the muscles and lack of coordination,

headaches, partial paralysis on the right side, and speech problems.

Sometimes, patients are mistakenly diagnosed as having had a stroke,

or having Alzeimer's. Typically, Hashimoto's antibodies levels will

be high, and the patient may also have a diagnosable case of

Hashiomoto's Thyroiditis, but TSH levels may also be normal.

The condition can also appear in adolescents, but is even more

likely to be overlooked. The symptoms in adolescents, unlike adults,

frequently include seizures, confusion and hallucinations. A drop in

school performance is also a common symptom, along with progressive

cognitive decline. Thyroid autoantibody levels should be evaluated

in these adolescents with these symptoms, even when thyroid function

tests are normal. (Distinct Pediatric Manifestations of Hashimoto's

Encephalopathy Described)

The primary treatment for Hashimoto's Encephalopathy is oral

corticosteroid drugs - for example, Prednisone. While Hashimoto's

Encephalopathy is a relapsing condition, the use of oral

corticosteroid can keep the condition manageable for many patients.

HELPS: The Hashimoto's Encephalopathy Loved Ones & Patients Support

Group, Founded by Beverly Seminara

Beverly Seminara, a writer and Hashimoto's Encephalopathy patient,

has created HELPS: The Hashimoto's Encephalopathy Loved Ones &

Patients Support Group, for her fellow patients. Beverly has also

written the internet's only detailed patient-oriented overview of

Hashimoto's Encephalopathy, and assembled some key journal

references on the condition. She has researched the subject

extensively on her own behalf, and has put her information together

into the article, Hashimoto's Encephalopathy: A Neuroendocrine

Disorder. Beverly is also available to help other Hashimoto's

Encephalopathy patients. Visit the HELPS website now.

> It may be rare in the fact that it may not be diagnosed as what it

really

> is.

>

> Re: hashimoto encephalopathy

>

> > From what I've read true HE is very rare. I know the about.com

site

> > had a link to another site. I checked it out because I had a

serious

> > head injury last year and have Hashi's.

> >

> > Louise

July 20, 2004

Well, this is the thrid email I have read since I woke up, but frogs??? I

am awake now even on 1/2 cup of coffee

>

>Reply-To: The_Thyroid_Support_Group

>To: The_Thyroid_Support_Group

>Subject: Re: Re: hashimoto encephalopathy

>Date: Tue, 20 Jul 2004 10:07:15 -0300