# Hashimoto's encephalopathy anyone?



## jumpinjiminy (Nov 27, 2010)

My newest adventure in the continually unfolding health drama is this thing called HE. But it's not for certain. It was a nightmare, that's for sure.

Anyone else have this?


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## Kaylasly (Nov 14, 2009)

I am not sure, but I sure had a lot of symptoms of it. A year later I am still having strange symptoms. What are your symptoms?


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> My newest adventure in the continually unfolding health drama is this thing called HE. But it's not for certain. It was a nightmare, that's for sure.
> 
> Anyone else have this?


Oh, my goodness!!! Are you okay now?? Geez; welcome to the board by the way.

I sure don't think we have anyone here who has had Hashimoto's 
Encephalopathy at the present time.

Oh, please...................when you do have the time or the inclination, share w/us what you will. It could very well help save a life!

I think we all would at least like to hear of your symptoms, how it was diagnosed and what the treatment plan is.


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## jumpinjiminy (Nov 27, 2010)

Mine came on like an attack of MS. Symptoms that I've been accumulating off and on over 20 years all came on at once. Before then, they were all isolated odd incidents that seemed unrelated.

I had been going to the bathroom a lot and then found out I was running a fever by accident. There was this horrible brain fog and run down feeling. It was like I was sick but there were no signs of illness other than the fever and low energy level. So I saw the doc thinking a UTI I'd been treated for earlier in the year never cleared up all the way.

He treated me with a heavy dose of sulfonamides in case it had progressed into a kidney infection and sent my urine off to the lab. It came back negative. During the week of sulfonamide treatment I started having paresthesias like bugs were biting me in patches all over. It got worse if I was exposed to heat. My vision was blurring in one eye, and my ear started ringing on that same side.

After about seven days, the paresthesias started to clear up and the docs thought it might have been viral. So to kill off the virus I went into the sauna with my friend and within five hours it felt like someone had spread Biofreeze all over my feet, legs and one forearm. I started having muscle spasticity/dystonia and myclonic jerks.

The next day, my legs all of a sudden felt like they had 20 pound weights strapped above the knees. By evening, I couldn't stand in the kitchen without feeling like my knees were going to buckle. While all of the rest was going on, all of a sudden I started walking like I was drunk and lost control of my coordination. If I was walking across the room, my feet would stop but my body kept going forward.

Prior to all of this, there were other signs and only now do I realize they were part of the whole thing (since it's almost all gone now). I had hand tremors that started in the spring and worsened during this episode. My head started this little jerk thing, and I don't even know how long it was doing that, but it's gone now too. There was nerve pain in a couple of my teeth. I thought it was a cavity, but know better now because it's gone. I had an unusual headache with visual aura (which I never get) about three weeks before the big blow up of craziness.

Things went on for two to three months with a fever spike every week with new neurological symptoms creeping through my body until the left side of my back and ribcage were the only things unaffected by paresthesias, numbness and spasticity. There were a lot of visual symptoms, flashing lights, colored lights, floating stars, blurring, pain, stabbing pains in the eye. At some points there was confusion and memory loss so bad I forgot how to do simple tasks like sorting laundry. I couldn't focus long enough to put a meal or shopping list together. When at the store, I couldn't figure out what to put in the cart, nothing came together into a coherent plan.

Every symptom that came on went through this stage where it would be very prominent for several weeks, some of them for a couple of months, but then they would start blinking out and eventually disappear. They were almost all transient and would wax and wane even while in the prominent stages.

All tests came back normal until two months later there was a blood calcium spike, a low complement on testing by the rheumatologist, low vitamin D, and after the cardiologist ordered the event monitor for near fainting spells and palpitations, the neurologist started suspecting Hashi's. He ran the tests for a couple of antibodies and one showed up 5x higher than normal. That was last week.

I still feel like crummy most of the time, but when my fever is higher I feel the best. I'm wondering if this is because my thyroid levels are rising and under attack. After about four days of fever, I get fatigued and can barely get moving. The fever usually goes down at this point.

During the month of October, I went almost three weeks with normal temps. That was the time that most of the neuro symptoms healed for good. I still get a few after running a fever, but they are not as intense or long lasting as the problems this summer.

It was a very frightening process, and frustrating because nobody would do anything to help me. They didn't know what I had, so wouldn't do anything to treat it. It's still ongoing. So hopefully, I can find a doc that wouldn't mind starting me on a little steroid to bring the ab numbers down. They aren't very high right now, so the neuro isn't 100% sure that's what I have. But I think he hit the nail on the head with this. Nothing else can wax and wane as quickly, nor include things like hair loss, anxiety attacks, palpitations, toenails falling off, etc.

What symptoms are you having?


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> Mine came on like an attack of MS. Symptoms that I've been accumulating off and on over 20 years all came on at once. Before then, they were all isolated odd incidents that seemed unrelated.
> 
> I had been going to the bathroom a lot and then found out I was running a fever by accident. There was this horrible brain fog and run down feeling. It was like I was sick but there were no signs of illness other than the fever and low energy level. So I saw the doc thinking a UTI I'd been treated for earlier in the year never cleared up all the way.
> 
> ...


I just cannot tell you how much we all appreciate you sharing this with us. We have discussed HE often here.

You poor dear; you are lucky to be alive. Why don't docs recognize this??

I posted this May 12, 2010. I in fact had the Graves' Encephalopathy. Myoclonic seizures and all that you mentioned. This was a long time ago like around 1983 and forward.

You will find it of interest. http://www.biomedcentral.com/1471-2377/10/27

Fortunately I had a thyroid storm. I say fortunately because that led to my diagnosis.

Treating the thyroid aggressively "should" bring down the antibodies. Do you know which antibodies we are talking about here?


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## jumpinjiminy (Nov 27, 2010)

Hi Andros. I didn't know you could have Graves encephalopathy. My anti TPOs are high. He said the thyroglobulin ab was within normal range - not sure if there were any or not. And for some reason the docs aren't very forthcoming with numbers unless you ask specifically for them. I think my TSH tested at 3.74. Not sure when it was done though.

It's good to know that I'm not crazy, and that all of the highs and lows over the years finally have a possible explanation. This has been a long time coming.

Were you treated with steroids for your Graves Encephalopathy?

I'm hoping they can get my hormones stabilized. After reading here, I'm not sure how easy that's going to be. I was under the impression thyroid is an easy fix.

Over the last couple of years, I've gradually lost interest in just about everything that I enjoy in life. It would be nice to get my energy, motivation and interests back.


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## jumpinjiminy (Nov 27, 2010)

Thank you for the link. It was very informative. I was wondering if they removed my thyroid, if that would stop any further attack on the CNS. There was only one person they did this with, but the person didn't require any further steroid treatment.

The neurologist won't give a formal diagnosis because he said my ab numbers weren't high enough and my EEG was normal. His advice was to wait six months and do another EEG.

I don't know about you but, I'm not content to wait until there's enough damage to cause brain wave changes before somebody starts treatment.

Neurologists can be so frustrating and ultra conservative sometimes. I need a more aggressive doctor.


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> Thank you for the link. It was very informative. I was wondering if they removed my thyroid, if that would stop any further attack on the CNS. There was only one person they did this with, but the person didn't require any further steroid treatment.
> 
> The neurologist won't give a formal diagnosis because he said my ab numbers weren't high enough and my EEG was normal. His advice was to wait six months and do another EEG.
> 
> ...


If the antibodies you have are indigenous to the thyroid, ablating the thyroid would indeed stop the attacks.

hugs,


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## Kaylasly (Nov 14, 2009)

I was never diagnosed with this but when I googled my symptoms it kept coming up. I had a lot of neurological symptoms. Buzzing constantly in my limbs, twitching, and limbs going numb. I still have it but not as bad as it was. I had major personality changes and would start crying hysterically out of nowhere. I could not be happy. This is totally unlike me as I have always been a very stable person. I am back to normal now but sometimes I am scared it will happen again. When I got TED last January is when the head problems started and I am not sure what I can attribute to TED. I had major headaches, a stiff neck and major confusion. I could not function. I stayed in my room all day with the shades drawn. I was very dizzy also. I would wake up in the middle of the night and be very confused. It was terrifying! Then around March I got a big lump in my neck and could not clear my ear. After many tests they figured out I had an abscessed tooth that had been there since 2006, at least. I still can't clear my ear all the way but it is about 85 percent better. I still have muscle stiffness and buzzing internally. Sometimes I have trouble walking and i am not sure if it is because muscles are stiff. I am not a health problem person, I am very active, a runner and lift weights and travel a lot. This really turned my life upside down. I am a changed person, but I have resumed my full life. I am trying not to think of it and move on, it is really hard!


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> My newest adventure in the continually unfolding health drama is this thing called HE. But it's not for certain. It was a nightmare, that's for sure.
> 
> Anyone else have this?


I forgot to get this link for you the other day.

http://www.thyroidmanager.org/Chapter8/8-frame.htm


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## jumpinjiminy (Nov 27, 2010)

Kaylasly, that sounds exactly like what I've been going through. I've had two episodes of really bad headaches in my life, and during those times these other symptoms came along with them. Two years ago, I had a headache that lasted for about three months. That event preceded a lot of the stuff happening today. It just kept coming on in fits and bursts, but it was all easily explained away - hormones, aging, stress, poor nutrition (no appetite), sleep deprivation (anxiety), etc.

Have you had your antibodies tested? What has your doc had to say about what you've been experiencing? Apparently, many docs aren't that familiar with this aspect of the thyroid problems.

Mine is flaring up again. I felt it coming back yesterday. It's starting with eye twitches, blurring vision in one eye, ringing in the ear on that same side, paresthesias like icy/hot and bugs biting, sharp/shooting nerve pain in one location, burning feet, spasticity in the thighs and one forearm, brain fog, stiff neck, myoclonus in the jaw, and worsening tremors of the head and hands.

Oh joy. Here we go again.


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> Kaylasly, that sounds exactly like what I've been going through. I've had two episodes of really bad headaches in my life, and during those times these other symptoms came along with them. Two years ago, I had a headache that lasted for about three months. That event preceded a lot of the stuff happening today. It just kept coming on in fits and bursts, but it was all easily explained away - hormones, aging, stress, poor nutrition (no appetite), sleep deprivation (anxiety), etc.
> 
> Have you had your antibodies tested? What has your doc had to say about what you've been experiencing? Apparently, many docs aren't that familiar with this aspect of the thyroid problems.
> 
> ...


Saying a serious prayer for you. If you think you need to, go to ER but by all means call your doc Monday morning (tomorrow.)


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## jumpinjiminy (Nov 27, 2010)

Aw, thanks Andros. This is a very mild attack, and fading for now. If they didn't have me go to the ER a few months back, it probably wouldn't do any good now.

There is no telling how bad it will get before it gets better. The pattern seems to be it gets worse in fits and bursts over several days, then tapers off over several more.

But after having been through it once, I have a better idea of when to go to the ER. I haven't come close to that point since the big flare a few months back.

Funny how this thing can hide in the background for a while and then Whammo!


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## ksgal (Nov 19, 2010)

Prayers for everyone that is having to deal with this! I have a friend who was having symptoms much like what you are having. They found he had a tumor on one of his adrenal glands. His potassuim was very low and his blood pressure would go dangerously high. Apparently a lot of people have this but it takes something to make the tumor start working - it secretes hormones just like the adrenals but without anything controling it. In his case he overheated this summer and that is what they think made his start "working".


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## jumpinjiminy (Nov 27, 2010)

I saw my GP today to follow up on the TPOab tests. He's checking free T4 and T3, TSH and cortisol to check for thyroid and adrenal fatigue.

Then he prescribed a trial dose of prednisone to see if the neuro symptoms and fever would clear up. He also said we could try some synthroid for a month to see if that helps with the energy levels. He warned that if he sent me to an endo, that they would only go by the numbers, but he doesn't have any trouble doing a trial to see how it goes even if the numbers don't match up.

This is why I love this guy. :hugs:

Would an abdominal CT show adrenal tumors? He hasn't ordered one since I had one in the ER after a uterine ablation earlier this year. In fact, I've had three of them in the last three years. One for ovarian cysts and the other for a kidney stone. Nobody has seen any tumors. This is a good thing. But I did find out you can have antibodies against your adrenal glands as well as your thyroid, and they sometimes come together.


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## jumpinjiminy (Nov 27, 2010)

I wanted to pop in and give an update. It appears that I do not have the Hashis' encephalopathy because of spinal cord involvement.

That and, I did a treatment that brought the fevers down and along with that went the TPO antibodies.

The endo says she's never seen that happen before, to go from high to normal antibodies.

Despite the disappearance of the antibodies and fevers, I'm still having new neuro problems showing up all the time.

Thyroid is under control.

Had a disease gall bladder removed for chronic inflammation. And since then, I'm feeling better energy wise. I'm not fully back to myself, but definitely closer than before.

There it is in a nutshell. Still waiting for some test to show what's going on. Until then, I'm still in limbo on the neurological problems.


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> I wanted to pop in and give an update. It appears that I do not have the Hashis' encephalopathy because of spinal cord involvement.
> 
> That and, I did a treatment that brought the fevers down and along with that went the TPO antibodies.
> 
> ...


It is truly wonderful to hear from you. You have been through it, that is for sure. When did you have your gall bladder removed?

What do your thyroid labs look like now? If you can, the most recent with results and ranges. We always need the ranges.

What thyroxine replacement are you on and how much?


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## jumpinjiminy (Nov 27, 2010)

Hi Andros. Thank you for thinking of me. I had my gallbladder out in May. Strange thing happened, my face, neck and chest were flushing and that stopped with the gallbladder removal. I thought it was gone for good, and then noticed I was flushing again across the cheeks and nose the other day. Now I'm wondering if it's a reaction to oysters. This flushing thing started last year this same time, and it's the only time of year I eat oysters.

In either case, I haven't had my labs done in awhile, so can't share values. She's ordered the TPOs and TSH. There are no tests ordered other than that. At this point, I'm waiting until we get our insurance switched over next year. Better coverage for labs, tests, exams and in-network providers.

I just have one question - my hair finally stopped falling out in June after having been on levo .25 for six months. I went without the levo for a week because nobody bothered to tell me I needed to schedule an appointment to get a refill. Now my hair is starting to fall out again. Is it possible that going one week without such a small dose is going to trigger another episode of hair loss? Or should I check with a dermatologist about this periodic hair loss instead?

Funny thing, I had some genetic studies done and I fell in the typical range for Hashi's but higher than average for autoimmune hair loss. Now it's got me wondering with this new round starting up, if it's thyroid related at all.

Ah well, good to see you, Andros. :hugs:

No diagnosis yet on the neuro issues. They seem to have stabilized, almost disappeared completely, but are creeping up again with each insult to my immune system. The big things for me are staying out of the heat and not getting sick. Vaccines are a minor trigger as well. The more of these insults I have, and the closer they are together, the more problems crop up, the worse the get, and the longer they linger.

All in all, doing well with the help of some really great docs who know how to treat symptoms, even if they can't find the underlying problem.


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## Kezza (Aug 25, 2011)

Hi the flushing in the face and the sensitivity to heat, have you been checked for Lupus cause those could be symptoms. Ive had the same off and on over 4-5 years so they suspect it. Lupus cause inflammation and can also attack the organs/brain etc but good youve seen a neuro


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> Hi Andros. Thank you for thinking of me. I had my gallbladder out in May. Strange thing happened, my face, neck and chest were flushing and that stopped with the gallbladder removal. I thought it was gone for good, and then noticed I was flushing again across the cheeks and nose the other day. Now I'm wondering if it's a reaction to oysters. This flushing thing started last year this same time, and it's the only time of year I eat oysters.
> 
> In either case, I haven't had my labs done in awhile, so can't share values. She's ordered the TPOs and TSH. There are no tests ordered other than that. At this point, I'm waiting until we get our insurance switched over next year. Better coverage for labs, tests, exams and in-network providers.
> 
> ...


Most of us w/thyroid disease have an inability to tolerate seafood due to high iodine content. So, oysters may be your culprit here.

I hope you have seen your doctor for a refill on your thyroxine replacement?How is the hair doing?

Glad to hear that overall you are doing better. Small blessings become big blessings sometimes.


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## jumpinjiminy (Nov 27, 2010)

Thanks, Kezza. I've been tested for everything. I've been tested for thyroid and lupus since my early 20s and always have normal TSH and no ANAs. They stop with the screening tests. Last year I requested deeper tests for all of it. Still no sign of lupus or other connective tissue diseases, gout, sjogren's, sarcoidosis, or lyme's.

Andre, the hair loss has slowed since the post above. I couldn't believe how little time it took to start falling out again and how long it took to slow down to normal. Crazy.

I know one thing, the week without thyroid hormone, I could really tell it. I was almost too tired to drive to the pharmacy to get the refill! Bad, bad fatigue.


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> Thanks, Kezza. I've been tested for everything. I've been tested for thyroid and lupus since my early 20s and always have normal TSH and no ANAs. They stop with the screening tests. Last year I requested deeper tests for all of it. Still no sign of lupus or other connective tissue diseases, gout, sjogren's, sarcoidosis, or lyme's.
> 
> Andre, the hair loss has slowed since the post above. I couldn't believe how little time it took to start falling out again and how long it took to slow down to normal. Crazy.
> 
> I know one thing, the week without thyroid hormone, I could really tell it. I was almost too tired to drive to the pharmacy to get the refill! Bad, bad fatigue.


You have had Anti-DNA test for Lupus?

http://www.thelupussite.com/antidna.html


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## BuffyFan (May 13, 2011)

I haven't read all of the responses but your symptoms sound very much like a lot of the symptoms in lyme disease..please get tested if you haven't already....lyme can attack everything in the body, musculoskeletal system, nervous system, cardiac system...I have heard of so many people with lyme that were mistakenly diagnosed with MS.


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## jumpinjiminy (Nov 27, 2010)

Hi again. I was tested for Lyme's twice. They were both negative. I've been tested for ANAs multiple times over the years, always negative. Then they did the deeper tests - complement levels, various lupus and connective tissue disease antibodies, all negative. Copper levels, normal. Tuberculosis, sarcoidosis, celiac disease, all normal. The only things they found after very extensive testing were the TPO antibodies, a low C3 level, and a low Vitamin D level. My TSH was barely above normal, but started me on thyroid replacement anyway. It helped.

My nails stopped splitting and chipping, my hair stopped falling out, my head cleared up a little, and my energy was better - not normal yet, but better.

Andros, just wanted to let you know my tests came back. TSH was a little above normal again and T4 was normal. TPO antibodies are back up, this time higher than they've ever been at 360 something. I was thinking they might be as my temp started climbing above my norm again. It never went into the fever range, but was stubbornly trying to get there.

I'm still think oysters might have been the trigger for this, and have read a few places that the high iodine levels in them can be bad for people with Hashimoto's. Is this true? There was a recurrence of a few neuro symptoms.

My dosage of Synthroid has been upped to .50. I guess this place doesn't typically test for the frees and T3.


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## daisydaisy (May 12, 2010)

that is why i don't feel well eating seafood it all makes sense now Ty. I do hope you feel better very soon. I too have been in a roller coaster ride this last month with my tsh fluctuating so badly and yes the migraines are the worst along with the eye twitching and a lot of other things you named. i am glad I am not alone, Ty to all for this board and bless all.


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