Re: karen- hashimoto's encephalitis

[Guest guest]

Hi ,

I wrote you a LONG letter this morning and was gonna post it but I chickened

out. I have been wanting to talk about a couple of things but I'm afraid to. Did

you ever keep a secret for a really long time and just got sick of it? My

husband knows and so does my brother and sister. My parents know a little.

that's it. I want to talk about it.

I'm having some fears and it's upsetting me. I know I have deterioration of

cognition. It's quite apparent when you look at my psych eval. i just had done

to the one I had done in 1990. My Wechsler Memory Scale-III total memory

composite placed me in the borderline range.

my psychologist said I was the most complex person he'd seen in his entire

career. What if these memory problems look like ADHD but are actually related to

my thyroid? He told me can't make that determination.

I'm terrified. it's never been this bad before. yesterday in school I couldn't

sit still. I couldn't get myself centered. still can't. i know i'm sounding

weird. sorry.

anyone with Hashi's...our cognition can be affected. also remember, we are at

risk of getting other autoimmune disorders.

here are some links about autoimmune disorders, Hashi's & how they affect

cognition.

Here's the first article. The link is at the end. hugs, sheila

QUESTION- " HASHIMOTO'S ENCEPHALITIS " ?

Dear Thyroid experts :I had a patient who was admitted to hospital with

confusion. she is 39 yo with known Hashimotos found last month to present with

tonic-clonic seizure. Not doing well for one month and problems with word

finding. ct at outlying hospital reported as cerebral edema. EEG revealed

bifrontal rhythms and polymorphic slowing. Had a ventriculostomy placed due to

CSF pressure of 20. Pt discharged and then represented with confusion ...Further

investigations showed questionable cerebritis around ventriculostomy site on MRI

.. Other w/u at outside hospital neg HSV/PCR, transthoracic echo neg, CT

angiogram positive for PE with positive anticardiolipin antibody. Pt then

anticoagulated prior to transfer to our institution--- Found to have elevated

microsomal ab 1:6400, and anti TPO 2517. Patient was seen by rheumatologist with

negative workup at our institution (neg for ANA, anti DNA , anti RNA, SSA, SSB,

SCL70 and chromatin antibodies negative, c3 208 ). Underwent

plasmapheresis and steroids. She was then place on prednisone 100mg /d. No

other residual neurological problems. No other explanation by rheum who felt the

original antibodies for anticardiolipn was negligible (am trying to get

records).

I had seen her one year ago with a goiter about 120g and placed her on thyroid

hormone for biopsy positive autoimmune thyroid Hashimotos.

Other complicating history--with PE dx on coumadin, not optimal surgical

candidate at this time.

Is there some information /references on Hashimoto's encephalopathy/cerebritis

as that is the suspected diagnosis by the rheumatologist. . If this is true

-optimal treatment? Ablation with I-131 vs surgical resection of

goiter?....Should I be worried about thyroid lymphoma ? Re bx ? Re-ultrasound

thyroid for size pending.

Appreciate any input or recommendations for further history or investigations.

anne marie lee

annemarielee@...

anne.m.lee@...

2220 riverside ave s

mpls, mn 55454

612-373-5540

univ of mn clinical asst professor

RESPONSE BY LESLIE J DE GROOT,MD-- Surely your case fits into the category of

" Hashimoto's encephalitis " . By now there have been more than 50 similar patients

reported.-(Neurology 1991:41:223-233, Neurol 1996;243:585-593, Neurology

1997;49:623-626, Euro Neurol 1999;41:79-84, and many others on Medline). The

manifestations are typically confusion, obtundation, dementia, seizures,

sometimes psychosis, movement disorders, stroke-like episodes with abnormal EEG,

variable minor abnormalities on CAT or MRI, sometimes elevated CSF protein, and

typical findings of Hashimoto's with high antibodies. Usually the patients

respond to prednisone, and some have been given other therapies including IV IgG

and cyclophosphamide. Some do not respond totally. I am not aware that removal

of the thyroid by surgery and 131-I has been reported or attempted, although it

obviously is an interesting idea. If the patient fails to respond to

immuno-suppressive therapy , one could make a case for total removal of

thyroid antigens. However I must immediately point out that there is absolutely

no published support or experience with this approach, so far as I know.

There is as yet no consensus that this is " due to " Hashimoto's thyroiditis and

its autoimmunity. Some observers believe this is the case, and others contend

that it is simply the combination of some yet undiagnosed unusual encephalitis,

and a fairly common thyroid disease. My bias is that it will be found to be tied

in some way to autoimmunity to CNS antigens that somehow overlap with antigens

in the thyroid.

J De Groot, MD Univ of Chicago/Endocrinology

RESPONSE BY DR. NOBUYUKI AMINO - Your case is compatible with so called

Hashimoto’s encephalopathy or encephalitis, although the existence of such a

specific disease is not completely established. As you know Hashimoto’s

thyroiditis is very common. Around 10 % of adult women in the general population

have positive anti-thyroid microsomal antibodies. Thus I speculate that an

autoimmune encephalitis is coincidentally associated with Hashimoto’s

thyroiditis. It is well known that Hashimoto’s thyroiditis frequently aggravates

during the postpartum period, but development of associated encephalopathy has

not been reported. Therefore I believe that encephalopathy in your patient might

occurred independently from Hashimoto’s thyroiditis. Therefore total

thyroidectomy may not release the patient’s symptoms. We need more definitive

evidence that encephalopathy is really causatively associated with autoimmune

thyroid disease. In your case, the patient is suffered from PE, and has positive

anticardiolipin antibodies. It is strongly suggested that encephalopathy might

be related to a vascular problem induced by an autoimmune mechanism, such as

lupus anticoagulant and/or other antibodies to various coagulation factors. As

reported in other patients, steroid therapy would be preferable, if patient

relapses.

http://www.thyroidmanager.org/experts.htm#QUESTIONHASHIMOTOSENCEPHALITIS

K a r e n P <karlynn17@...> wrote:

----Original Message Follows----

From: " Kemal And Sheila Kalajdzic " <kemalandsheila@...>

Reply-hypothyroidism

hypothyroidism

Subject: low fat diets/ " thyroid friendly diets "

Date: Sat, 20 Mar 2004 17:44:12 -0000

Sheila, thanks. However, this quote disturbs me:

" This same diet should control the risk

factors that can lead to brain damage and deterioration of

congition. "

Autoimmune disease causes brain damage? don't tell me that

Dr. Ridha Arem says in " The Thyroid Solution, "

" A thyroid-friendly diet should also be a diet friendly to the

immune system, one that is likely to prevent or temper an autoimmune

attack on the thyroid. This same diet should control the risk

factors that can lead to brain damage and deterioration of

congition.

_________________________________________________________________

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[Guest guest]

i am definately dwindling in brain fucntion im a college graduate now i

struggle with words as if i had alzheimers and im only 27.. i feel like i

jsut want to be in a home and wait to die cuz i dont see a lot of help out

there nad am not capable of doing it myself and scared... i dunno if this is

thyroid or something they just havent tested..

btw i was also molested at 10 and its something you never forget.. even if

its not the um actual act its still stays in your mind forever and ppl looka

t you as if it shouldnt matter.. because as we know if someone doesnt have

the experience of pain or torment they jsut dont get it...

low fat diets/ " thyroid friendly diets "

Date: Sat, 20 Mar 2004 17:44:12 -0000

Sheila, thanks. However, this quote disturbs me:

" This same diet should control the risk

factors that can lead to brain damage and deterioration of

congition. "

Autoimmune disease causes brain damage? don't tell me that

Dr. Ridha Arem says in " The Thyroid Solution, "

" A thyroid-friendly diet should also be a diet friendly to the

immune system, one that is likely to prevent or temper an autoimmune

attack on the thyroid. This same diet should control the risk

factors that can lead to brain damage and deterioration of

congition.

_________________________________________________________________

Get reliable access on MSN 9 Dial-up. 3 months for the price of 1!

(Limited-time offer)

http://join.msn.com/?page=dept/dialup & pgmarket=en-us & ST=1/go/onm00200361ave/dire\

ct/01/

[Guest guest]

hi kim, i know EXACTLY how you feel! I have been there before with the feelings

of desperation so bad that I just wanted to give up and die.

thank you for sharing what you've been through. i know how terribly hard that

is. i can also relate to going through some childhood traumas. i understand

about the pain and torment. i can't talk about certain things in open forum.

it's too hard.

they say thyroid disease is partly related to keeping things inside. i'll post

the article when i get back from school.

i just want to tell you i thought there were certain things I would have to live

with every day of my life. I thought I would have to live with mental illness

every day of my life (BIG secret I've been wanting to get off my chest).

i thought i would feel that pain and torment every single day. just so you know,

there is hope.

my life is a miracle now. I was determined to change myself. I believed I could

change the pathways in my brain. and i did. i spent over a decade in

unconventional therapy...before I was raped.

i was a pretty messed up person to say the least. Like other illnesses, it takes

finding the right doctor I guess. meds did nothing for me.

i went through times when I had very little hope, but i trusted my therapist

even when i couldn't imagine a day when I wouldn't feel completely empty inside.

i found myself...the real me, and that was the most amazing thing...hard

journey, but worth it. i found a really special person.

you are special too. i know where you're at. you just gotta believe it doesn't

have to always be like this.

you don't need to go to some home and wait to die. you need the right medical

care first of all. and you need to work through traumas. you need to believe you

didn't deserve what happened to you. you need to believe that you're a

wonderful, loveable person. there is nothing inherently bad about you, and you

have to believe that too.

thyroid disease is about not having a voice. some people think that's a crock of

SH_T. I don't! Secrets can kill us inside.

anyway, i've tried to find that article for 10 min. now...can't see it. will

look tonight.

thanks for sharing. it makes it easier for me to share, but whew...it's hard to

press this send button!

hugs, sheila

Kim <kckim@...> wrote:

i am definately dwindling in brain fucntion im a college graduate now i

struggle with words as if i had alzheimers and im only 27.. i feel like i

jsut want to be in a home and wait to die cuz i dont see a lot of help out

there nad am not capable of doing it myself and scared... i dunno if this is

thyroid or something they just havent tested..

btw i was also molested at 10 and its something you never forget.. even if

its not the um actual act its still stays in your mind forever and ppl looka

t you as if it shouldnt matter.. because as we know if someone doesnt have

the experience of pain or torment they jsut dont get it...

low fat diets/ " thyroid friendly diets "

Date: Sat, 20 Mar 2004 17:44:12 -0000

Sheila, thanks. However, this quote disturbs me:

" This same diet should control the risk

factors that can lead to brain damage and deterioration of

congition. "

Autoimmune disease causes brain damage? don't tell me that

Dr. Ridha Arem says in " The Thyroid Solution, "

" A thyroid-friendly diet should also be a diet friendly to the

immune system, one that is likely to prevent or temper an autoimmune

attack on the thyroid. This same diet should control the risk

factors that can lead to brain damage and deterioration of

congition.

_________________________________________________________________

Get reliable access on MSN 9 Dial-up. 3 months for the price of 1!

(Limited-time offer)

http://join.msn.com/?page=dept/dialup & pgmarket=en-us & ST=1/go/onm00200361ave/dire\

ct/01/