[bobthebuilder54]

Looking for information on Hashimoto's Encephalopathy, wondering if anyone here has this dx also. Just have been informed as of a few days ago that I have this very rare disease.

So just looking for some input.

Thanks guys,
susie

[mrsD]

This forum is not very active. Over the years there have been 10 posts on this subject here.

If you search encephalopathy on this forum you'll find some of the older posts. Some of those people haven't posted here recently.

I cannot give you a search list, as it does not remain active when moved from person to person.

So you have to do the search yourself. Sorry. The search command is on the first page of this forum in the upper right.

This is not a common disorder:
http://en.wikipedia.org/wiki/Hashimo...encephalopathy

[Friedbrain]

OMG, but *sputter* please don't leave! Tell me more!!! What are your symptoms and how did you get a diagnosis? And by whom? (you can be general and just say specialty)

I am SO interested in learning more about HE, and mrsD is right, there's not a lot of people talking about it.

Here's my story, in brief. I've had Hashimoto's since high school, so for almost <cough> 30 ys. 9 ys ago, my "head blew up". Docs don't know why, but started having both central and peripheral nervous system problems, including two ER visits within a month, one of them status epilepticus, resulting in a combined 10 days in the hospital. No cause discovered (stroke and MS were ruled out), so treated for seizure disorder.

About 5 ys ago, I stumbled across HE when I had a symptom flare (moved, lots of stress, med changes by new *%#$@ docs) and it sounded so much like my symptoms; went to a Dr in a large city who did research on HE. He basically looked at how I was Right Then, which was mostly stable by the time I got in to see him, and said go home and come back if you're having problems. Grrr.

Ff to now. Moved again, low stress right now (months later), so low symptoms. NewEndocrinologist wants me to go off of cortef, which I take for adrenal insufficiency (diagnosed 8.5 ys ago during the initial mess). I pointed out that I felt SO much better once I was on cortef (actually, they put me on solumedrol in the hospital, and my severe neurological symptoms including loss of balance and 6th nerve palsy resolved); trying to go off it had, in the past, initiated a return of neurological symptoms.... NewEndo pointed out that it's possible that, because of my various autoimmune antibodies, the cortef helps me by "masking" autoimmune problems (since it's also anti-inflammatory). I mentioned HE. He said that HE is a dubious thing. Yes, Hashimoto's patients have TPO antibodies; yes, Hashi patients have neurological problems; but evidence that TPO abs correlate with symptomology is absent, therefore he considers HE to be suspect. Ooookay..... NewEndo DID hold off on taking me off cortef, however; he said to talk to my neuro (whom I see in two weeks), since it's possible that the cortef IS helping with neurological problems, if it's autoimmune...and leaving it up to my neuro. NewEndo said he was sending my neuro a letter stating exactly that.

I would LOVE to know your experience!!!! I'm pretty nervous about going off the cortef!

[bobthebuilder54]

Well, the thankyous said, let me say I am so happy to have someone to talk to.

Yes It is very, very rare, so when I tell people I have this, they say to me, how do they know? What are your symptoms? just like they did when they first told me I had scleroderma, also rare, and when I say I have a myositis very rare.

Well, it goes like this I hope I do not bore you; About six to seven years ago, I got so tired and weak could not walk from my car to a local wallmart I was under very extreme stress and have been for the past nine or so years does not let up. Well, went to a general and she said I was hypothryod and gave me a lecture of how dangerous my levels were, bla, bla, then put me on meds, which made me feel better. Did not take the weight back off I had put on before I was dx, butttt. So more stress and more weird symptoms, my thumbs hurt, I could not grasp anything, or I dropped everything, I changed the way I wore clothes, did my hair, i just thought it was arthritis, or carpel tunnel, so then I started to develop rashes, rashes up and down my whole back from my ankles to the shoulders down my arms. that lasted six months and nothing would help could not stand clothes on myself. Then I deveolped rashes on my face, chest, hands went to an alergist who said allergys, gave me cream, then went to my PCP and she said you are allergic to the sun, so then my hands started to swell, fingers swell, they were blotchy, scalery would change to beet red, and change due to stress, again the doctor said sun and stress, then I started with trouble lifting my legs up to go up curbs, then the stairs in my house again my primary said stress, then I got hot flushes from my feet to my head, then inside my legs, would last hours, then my knee joints, all my fingers, my ankles, my toes, (by the way this whole time my feet are so bad, I can hardley walk on them, feel swollen but are not) then I started to feel weak, my arms I could not lift them up to do my hair, or showering was to much, my legs were weak, i felt like I was dragging around a 500 pound weight. It would come and go, again it was said as stress, then I decided to go to a dermatolgist, who looked at tmy hands and said I am sure you have lupus, did so many blood tests I cannot even tell you, it kept comming back speckled pattern postive ANA then I developed Raynauds disesae, I had it so bad my hands were actually blue, I mean blue, I ended up in the hospital a coupld times with weird symptoms, could not swallow no spit felt like I was going to pass out, another time i had weird reaction to light and felt like my whole upper body was somewhere else spent three days in the hospital, finally said it was anxiety attack, ( i have never had one before this and do not beleive this is what it was) Then another attack this past summer stopped at a stoplight the lights it was summer were too much for me afraid to drive, that weird feeling again. Well anyway, back tot he dermo I asked if he would send me to a rheumy because I was doing my research on the internet and knew something was wrong ( I have never been a sick person) except to headaches, sinus, but not this kind of stuff. So went to the rheumy and he took a couple of hours checking over all my blood tests and his own exam and said you do not have lupus you have scleroderma, now I was really scared. So he put me on plaqunell which did help, gave me trental for the raynauds, and it helped so much so fast that withing a few appointments he changed my dx to UCTD with features of lupus and scleroderma. SEnt me to a pulmalogist, (I wont go into all the tests, now) started to have cat scans, echos bla, bla. Now I am getting worst, my muscle weakness is bad, legs feel like there is tissue moving in my calfs, feet buzz all the time oh yea I developed an autioammune colits also, so my primary says, would you like to have me send you to a neurolgist, and I said, yes, so on I go and that is the best thing I have done. I love her.
She did spinal taps, mris, mra, eeg, emg, nerve conductiont tests and then a muscle and nerve biopsys. went into her officce and she said you have perhieral neuropathy, your eeg shows lessons on part of your brain, your biopsys show inflammatory muscle fibers, bla, bla,gave me anti siezures meds, and told me to quit my job. (believe it or not I am skipping a bunch)ha, ha, well then she said I want you to go to Mayo to make sure we are treating you correctly for the autioammune stuff and everything else, so as inurances go mine would not cover mayos but would cover northwestern universisty hospital so that is where I went in aug and oct of this year, first to the sclero clinic, that is who did the thryoid perixadase antibodys test along with many others and it came back 1200 something and it should be 60 so she upped my thryoid meds, and said go to a endengonalsity, so then went to the neurolgist at northwestern and he wanted to start all my neurogical tests back and I was suppose to go there last week, went to my neurolgist here and she said why go through those all again, susie, I told her about he endengolist I had an appointment with and she said, you know what I can do all that for you here, you have had enough so she did another thyroid perxidase test, and the other thyohglobin, (i know this is wrong spelling) she said,that since my meds were upped three months ago it sould have been time to adjust these tests, but they did not all came back extrememly high, she said that this is causing my congitive problems, becuse I forgot to mention I had gotten I could not spit the words out if you know what I mean, I would say the wrong words like window for mirror, small for low and when I was tired or stressed I sounded illeterate, and my short term was getting worst along with my balance I walked like a drunk I would walk sideways instead of straight ahead, but did not know what disese was causing what. so that is when I got the HE diagnoise, and also my rhuemy changed the meds of mine in May beccause of the myositis to an autioammune suppressent,

Now sorry so long It is a long story and did not put it all down, lol, I am sure yours is the same, I would like to hear if you do not mine.
There is power in each others storys I believe. The other thing I have never heard of your drugs you were on, can you explain to me/
Also just had my first 90 min IVinfussion today, yippie, hopefully it will help all I have. (wouldnt that be nice)
Oh I was going to explain the He to you, next post ok
Susie

[bobthebuilder54]

Also my neurolgist even before she dx me with this, told me she was going to be my quarterback with my healthcare, she said people with autioammune diseases like this that have so many doctors need one doctor incharge of and watching the meds I now take about 35 a day, well she is an agressive doctor, who is not afraid to talk to my other doctors. She is in constant contact with my rheumy, and discuss my healthcare. (Ilove that). I have through my research seen that endoncolgists are hestiant to dx He. I think you are doing the right thing going to a neurolgist. IT is neuroendo disease.
Please dont you leave me alone here either, lol
susie

[bobthebuilder54]

Originally Posted by mrsD

This forum is not very active. Over the years there have been 10 posts on this subject here.

If you search encephalopathy on this forum you'll find some of the older posts. Some of those people haven't posted here recently.

I cannot give you a search list, as it does not remain active when moved from person to person.

So you have to do the search yourself. Sorry. The search command is on the first page of this forum in the upper right.

This is not a common disorder:
http://en.wikipedia.org/wiki/Hashimo...encephalopathy

Mrs. D
Thank you for your help I will do what you suggested. I appreciate it.
Susie

[bobthebuilder54]

Friedbrain,
Really I am not a stalker, but I just looked up your dx of adrenal insufficiency and it does say that a cause of this can be hashimoto's disease, HUM.
I am sure you know that that is why you are questioning this, it is very interesting, also had to look up the anticadiolipin, that can point to lupus or scleroderma, wow we do sound like a simmilar case.
I am interested.
susie

[mrsD]

I'd like to interject here also... the presence of rash, and autoimmune could also point to gluten intolerance.

People with gluten issues, may be called Celiac if they have the genetic markers, but also can be missing those, and just intolerant to gluten.

Thyroid disease is linked to it.
Please look at this website, which explains all the confusing symptoms of gluten intolerance (including neuropathy)

http://sites.google.com/site/jccglutenfree/

Over the past decade I have seen many people benefit from that website. So do take a look and study it. She also goes into the complex world of testing for it, where doctors may drop the ball... so that part is interesting, too. Jcc and I met many years ago on a peripheral neuropathy forum, and she has been tireless in bringing this information to people who are suffering from "something" and falling thru the medical diagnostic cracks.

[bobthebuilder54]

Mrs. D,
I certainly will. I have been reading a little off and on on the forum groups about Gluten but did not know it can be related to thyroid problems, intersting. I think the doctors just stopped looking for my direaha problems when I had a colonascopy and it showed microscopic colitis. So that is what I have been treated for. Which is not always helpful hoping the steriods take care of that too. lol. But yes I am seriously going to look at that web site.
I did see something about it again last night when I was looking up some information for other particapent on this forum. (His dxs) because I was not familiar with them.
So again thank you, I appreciate it.
Susie

[Friedbrain]

Susie,
Thank you so much for taking the time to share your long abbreviated story. Like you said, people with complicated health issues DO have long stories lol

But we definitely have overlap. I'm fascinated by your story in particular because, although I share health problems with many people, very few have the neurological involvement that I've had. Specifically, my initial symptoms were loss of balance and inability to move my eyes horizontally. One evening, I was driving home and my eyes were moving sluggishly side to side, like I was drunk (wasn't). The next morning, I woke up and walked into a wall. Within 24 hrs, I was seeing double (soon diagnosed as 6th nerve palsy). When I was hospitalized a week later, the nurses thought I was blind because I had to hold the wall to walk because I had NO balance. A month later, I had seizures in the middle of the night and was unconscious and seizing the entire way to the hospital. For the ten days of testing (including MRIs, and later, lumbar punctures), they found no cause. I also had trouble swallowing (in and out of the hosptial), couldn't urinate while in the hospital....peripheral problems that stumped them. Anyway, they gave me high dose steroids IV (solumedrol) in the hospital the second time, and I slowly decreased the steroids once I got out. My neurological problems (balance/eye movement/swallowing) improved on the steroids, started to worsen again at one point when I made another decrease so my neuro had me increase and slow the taper even more.

My main problem, I think, is that my health problems are not constantly with me. Early on, before the medication helped stabilize my health (several months), I noticed that they were related to my monthly cycle: vision/balance problems are more likely to strike around ovulation; my seizures occur during the night in the week before my period (called catamenial epilepsy...maybe related to proportionally greater estrogen, which is excitatory, vs progesterone (which is decreasing at this time), which is inhibitory in the brain). And then, stress exacerbates the symptoms, whereas if things are calm, I'm often fine. That complicates it for doctors, and they don't like that. I have a PhD in a medical science field, so do my own research on this when I'm motivated (ie having problems; when things are ok, I take a break worrying about it). I track my symptoms and try to understand my "triggers".

For example, even on two anti-seizure medications, I still often have problems sleeping the week before my period. So when I had an in-hospital two-day EEG to detect abnormal brain activity years ago and it was during what I consider my "ok" time of the month, it detected nothing. When a new doc ordered a sleep study last month, I was able to schedule it a month in advance for a night when I thought I might be vulnerable.....and sure enough, I had sleep problems!

I did have rashes many years ago, so was close to a lupus diagnosis with the autoantibodies; told I had "Antiphospholipid Syndrome" or something like that. I've also had problems with blue/numb fingers, which come and go (particularly with stress); and dry eyes/mouth, which is Sjogren's Syndrome (just had another SSb positive result, so will be talking to my new doc about this at the end of the month).

Over the last year (I went thru a lot of stress last year, and my health seemed to take another dive, with new problems cropping up), I've had new severe/strange allergic symptoms of no known cause. Several times, I woke up with a puffy face. Depending on severity, it was my eyes and lips, and one time even the skin around my lips (angiodema; I looked it up). I also was experiencing severe rashing on the front of my trunk at night. I tried going to the doc once when my face was swollen but by the time I got in (~10am), the swelling was down so not much for her to say. I did take pics of my trunk; wish I had taken pics of my face. These things haven't happened for about 6 mo tho, so not a major concern right now.

I was trying to find my TPO value, but can't right now. I have a gigantic binder with all my test info over the years; need to organize it better so I can find relevant results!!!

My biggest concerns are two-fold: one, that as soon as stress hits, I crumble. The symptoms resemble dysautonomia in some ways, because the problems are both central and peripheral. And the seizures and sleeping problems that happen in the middle of the night, making me afraid of going to sleep sometimes.

I'm not working right now, but I'm afraid that as soon as I do, the problems will come back. And now that the NewEndo wants to take me off the steroid...! Two moves ago, new docs changed my meds around (both neuro and endo) and I started having seizures again. Once I start having seizures, I lose my driver's license for a period of time.....which is devastating. I do NOT want that to happen again!!