# Hashimotos Encephalitis



## geezuzsaves (Jun 18, 2013)

My name is Jim and my wife Jennifer was diagnosed with HE about 11 years ago.
It all started when one day with opposites, to my wife sitting was standing and cats were barking and so on. Well, the next morning it was getting worse and so I took her to the ER here in our small town thinking hse was having a stroke then they transferred her to the University of Tn. Medical Center where she was admitted for 18 days. She continued to worsen daily to the point of a small child. I had to basically do Everything for her. Her motor skills were shot, her reasoning was not there and confusion. While in the Hosp they did every test and saw every Specialist, but even the 2 neuro Drs admitted they just didnt know what was wrong. So we flew her to Stanford Medical Center in Ca. where after much more testing they came up with a diagnosis of HE.. 
In fact one Dr thought she had mad cow disease but by the Grace of God she slowly started to get better but only to about 60-70%. 
Today(June 2013), 11 years later she still has motor skill issues including difficulty walking, swallowing mechanism doesnt work properly and she tends to choke a lot, dementia including reasoning and repeats herself quite a bit and much confusion.. 
She also has a slight shake of her hands and sometimes her body and has periodic episodes where the disease becomes much worse as is the case now. These episodes can last for months and I hope and pray she comes out of this one soon. 
I had to take early retirement at age 55 unfortunately but I was blessed I was able to do it by the grace of God. I have read that HE is very rare, only a few people have it this bad.


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## Octavia (Aug 1, 2011)

Wow. I am sorry you and your wife have gone through this. I don't know anything about HE, but it sounds like a nightmare.

Does your wife still have her thyroid, or has it been removed?


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## Andros (Aug 26, 2009)

geezuzsaves said:


> My name is Jim and my wife Jennifer was diagnosed with HE about 11 years ago.
> It all started when one day with opposites, to my wife sitting was standing and cats were barking and so on. Well, the next morning it was getting worse and so I took her to the ER here in our small town thinking hse was having a stroke then they transferred her to the University of Tn. Medical Center where she was admitted for 18 days. She continued to worsen daily to the point of a small child. I had to basically do Everything for her. Her motor skills were shot, her reasoning was not there and confusion. While in the Hosp they did every test and saw every Specialist, but even the 2 neuro Drs admitted they just didnt know what was wrong. So we flew her to Stanford Medical Center in Ca. where after much more testing they came up with a diagnosis of HE..
> In fact one Dr thought she had mad cow disease but by the Grace of God she slowly started to get better but only to about 60-70%.
> Today(June 2013), 11 years later she still has motor skill issues including difficulty walking, swallowing mechanism doesnt work properly and she tends to choke a lot, dementia including reasoning and repeats herself quite a bit and much confusion..
> ...




What a story and how blessed your wife is to have a doting and loving husband such as your self.

Tell me, Jim.........................what thyroxine replacement is your wife on? Does she still have her thyroid or did they take it out?

Has your wife had these labs recently; TSH, FREE T3 and FREE T4? And if so, could you post the results and RANGES, please?

Has Jennifer had an MRI of the brain? If so, was anything noted?

So glad you joined and I will gladly add you and your wife to my prayer list.


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## geezuzsaves (Jun 18, 2013)

My wife Jennifer is on Levothyroxine 50mcg, pretty low dose. Before she was first diagnosed with HE the Drs didn't put her on any meds at first bc of not knowing what they were dealing with. But she actually started getting better before the high steroids she was on for about 5-6 months. So, I don't think in my mind the steroids had anything to do in helping her recover but really unsure.
My wife continues to have episodes as I mentioned in the last post but I dont like the side effects those Pharma drugs have on her. Episodes come and go, hopefully this one will dissipate soon. 
My wife still has her Thyroid but her sister has Graves disease and had her thyroid zapped and on I believe the same meds but diff amounts.
My wife has had I believe 3 MRIs at diff times and I dont remember what the results were -sorry Id have to go back and look at some of her old reports If I still have them. Maybe Ill hunt them down later, if I can find them Ill let you all know.
Her Labs back in Jan 2013 before this new episode for TSH - .83 abd T4-8.2
I do know my wife has been anemic most her life but when this whole thing started 11 years ago she had to also have a blood transfusion and to this day I have to give her 27 mg of Iron every other day- 3 pills a week.
Goin back to her lab work in Jan. I noticed her MCV and MCH were pretty high which may indicate she has B12 and possibly Selenium deficiency but Im not a Dr. but I have been thinkin of trying high doses of sublingual B12 and adding 100 mg of Selenium to her diet and see what that does for a couple of months. Anything is better than steroids! Thank you for your prayers!


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## Andros (Aug 26, 2009)

geezuzsaves said:


> My wife Jennifer is on Levothyroxine 50mcg, pretty low dose. Before she was first diagnosed with HE the Drs didn't put her on any meds at first bc of not knowing what they were dealing with. But she actually started getting better before the high steroids she was on for about 5-6 months. So, I don't think in my mind the steroids had anything to do in helping her recover but really unsure.
> My wife continues to have episodes as I mentioned in the last post but I dont like the side effects those Pharma drugs have on her. Episodes come and go, hopefully this one will dissipate soon.
> My wife still has her Thyroid but her sister has Graves disease and had her thyroid zapped and on I believe the same meds but diff amounts.
> My wife has had I believe 3 MRIs at diff times and I dont remember what the results were -sorry Id have to go back and look at some of her old reports If I still have them. Maybe Ill hunt them down later, if I can find them Ill let you all know.
> ...


Jim; see if sometime in the near future you can get your wife's FREE T3 done. Jennifer is on such a low dose of T4; this is causing me great concern. She cannot heal if her FREE T3 is in the basement.

Here is some info that may help!

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

Her doctor could very well be keeping Jennifer in a very very bad place.

If you do get the FREE T3 labs done; be sure to get a reference range as well as different labs use different ranges.

Did your wife ever have an ultra-sound of her thyroid?


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## HotGrandma (Sep 21, 2012)

I have heard and read about this.

http://thyroid.about.com/cs/hashimotos/a/encephalopathy.htm

But this is not the link I was looking for. What I have previously read is that the only treatment is with steroids, and that is the only thing to keep the brain from further deteriorating.

http://www.orgsites.com/fl/hashimotos-encephalopathy-casestudies/ My hopes would be to check with one of the Doctors in these studies and get their advice.

FYI you can take up to 800 mg of Selenium per day, which helps with Free T4 to Free T3 conversion. If it were me in this type of a relapse I would be getting all antibodies tested, not just thyroid. Autoimmune diseases wants the company of other autoimmune disease. I am so sorry you are having to deal with such a devastating illness with your wife. You sound like a strong person. Stay strong for you both. Wishes.


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## geezuzsaves (Jun 18, 2013)

Thanks to all of you for your concern. My wife may have had a Thyroid ultrasound years ago I just don't recall. I will certainly ask my Dr about this asap. Thank you again


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## geezuzsaves (Jun 18, 2013)

Jennifer and I went to a new Neuro Dr yesterday and he really wasn't much help.He wanted us to try IV steroids for 5 days only to see if it will reduce the inflammation. He recommended that we see an Endocronologist so we made an appt for mid July 2013 and I think Im gonna wait to see this Dr first before I make any steroid decision- just to many side effects. Im trying some natural remedies in the mean time but it will probably take months for these to work but will see. If anyone has anything to add please do! We have been dealing with this disease for many years and its yo yo effects. Thanks


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## bigfoot (May 13, 2011)

Yes, steroids are not a fun time. But, for something like H.E. (aka SREAT), I would probably want to go for the heavy artillery. I've read that a small maintenance dose of Prednisone-type drugs (say, 5 mg or less) can actually be pretty advantageous. The risks outweigh the benefits. The larger doses -- well, I was on 20 mg (for something else), and it was no picnic. Lots of side effects.


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## geezuzsaves (Jun 18, 2013)

Well. it's July 29th 2013. My wife Jennifer had Iv steroids(sodium medrol 500 mgs) for a week about 3 weeks ago and no change in her condition and as a matter of fact she is actually a little worse. We also went to an endo Dr and he took more blood work which we won't know the results til Aug. 6th but he gave her 2 hormone injections about a week ago but again no change. So now we wait for the August 6th blood results! If her Neuro and Endo Drs here in town cant figure this out soon then I will probably take her to a clinic somewhere in the US for a second opinion. If anyone has any suggestions as where to take her I'd appreciate it. We live in the Knoxville area. Thank you


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## bigfoot (May 13, 2011)

hugs6

Ugh, sorry to hear this. I think HotGrandma's advice of looking through the H.E. case studies, and trying to find one of the doctors listed, is a good idea. They might not be able to help directly, but they would hopefully at least be able to point you in the right direction to a doc somewhat close to your location. A second opinion sounds like a good choice.

From everything I've read (which isn't much on H.E. aka SREAT), they treat it with steroids, immune suppressing drugs (a newer development), and sometimes add in levothyroxine. Interesting that her endo gave her hormone injections -- any idea on what those were?

http://www.orgsites.com/fl/hashimotos-encephalopathy-casestudies/_pgg9.php3


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## Andros (Aug 26, 2009)

geezuzsaves said:


> Well. it's July 29th 2013. My wife Jennifer had Iv steroids(sodium medrol 500 mgs) for a week about 3 weeks ago and no change in her condition and as a matter of fact she is actually a little worse. We also went to an endo Dr and he took more blood work which we won't know the results til Aug. 6th but he gave her 2 hormone injections about a week ago but again no change. So now we wait for the August 6th blood results! If her Neuro and Endo Drs here in town cant figure this out soon then I will probably take her to a clinic somewhere in the US for a second opinion. If anyone has any suggestions as where to take her I'd appreciate it. We live in the Knoxville area. Thank you


Makes me wonder if her diagnosis is correct. Have the doctor's ruled out Guillain-Barré syndrome, Lyme Disease, EBV?

Most definitely keep you and the wife in thoughts and prayers.

Have they ever given your wife a FREE T3 test and if so, what was the result and could you include the range?

I wish I could recommend a clinic/hospital but perhaps some others here can.


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## HotGrandma (Sep 21, 2012)

Found this on a Selenium study.

http://www.ncbi.nlm.nih.gov/pubmed/23782950


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## HotGrandma (Sep 21, 2012)

I don't have the same thing as your wife does, BUT when I walked into my Doc's office and said "I think I'm gonna die" I was close to a thyroid storm if not in one. I have no insurance and refused to go to the hospital. Doc on the spot gave me 3 steroid shots and huge prescriptions of steroids for the past 13 months. My skin is so thin anything that barely bumps me leaves a nasty skin bruise from the steroids. I gained almost 20 pounds, BUT it saved my life. Symptoms can and do cross over and the emotional swings are far worse with thyroid than with steroids, at least for me. My thought for you is to get her stabilized with the steroids and treat the disease from there.


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## geezuzsaves (Jun 18, 2013)

IV Steroids have already been given about a month ago but no relief. I think the hormone injections were progesterone and estrogen but dont quote me on that and it's been about 2 weeks now since the injections. Jennifers diagnosis was 70% Hashimotos Encephalitis back in 2002 when all this started. Today, August 5th, 2013 my wife may even be a little worse than a month ago. Thank you all again for your input!


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## Ana78 (Aug 8, 2013)

I found a dr in fl willing to do all kind of blood tests. At least i know what i dont have. I was tested for adisson, lupus, arthritis reum, ferritin, all vit B, allergy against my own hormones, parasites, etc. I was completely desperate, was feeling horribly!!!!!! I have hashimoto's but my symptoms were too many. The symptoms that scared me the most were the neurological ones since i couldn't say what i wanted. If it was raining i would say it's crying. Did you go to the market was did u go to wholesale, etc. it was very frustrating. Everything was falling from my hands, i misplaced things all the time, threw things in the garbage...I used to watch House and remembered that episode where the guy was stuck saying "I couldnt tackle the bear" when he was trying to say something else. I checked it out but he had some parasite i think. Anyways, it all went away after taking Armour (levo made all of my symptoms worse) and arriving to the right dosage. I ALWAYS check one a month, not every 3 months as other drs had suggested, my free t3 and Anti TPO, and every two months a complete metabolic panel.
I am 34 and just had my first child. After that, diagnosed with hashi's


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## Ana78 (Aug 8, 2013)

I think you should try changing the pill since the one she is taking doesnt seem to be helping her much with her hashi's.


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