Diagnosis Hashimotos Enchalopathy

[JadeVictoria]

Hi everyone,
I have received so much support from this board over the last 18 months, so I just wanted to let everyone know that I have received a diagnosis. I don't have MS I have a rare neuroendocrine autoimmune disease called Hashimotos Enchalopathy or H.E.

If you present with cognitive dysfunction it might be something for you and your doctors to look into. Luckily for me since they suspected MS I was accidentally treated correctly with steroids.

I just wanted to share in case this helps anyone else out. This is a great board. Jade

[hunterd]

hi jade, glad you got a dx. what does hashimotos do?

dave

[jumpinjiminy]

Glad you found your answers. I'm getting treated the same way with the same suspected diagnosis. What finally convinced them it was HE?

[minivanmama]

I am so glad that you have answers now. I am sure that you were shocked.

I am glad that you have been treated with steroids. Now that you know what you have you can be treated.

I wish you well and e-mail me and let me know how you are doing.

Lots of ((((hugs))))

[JadeVictoria]

Hi,
There were 4 things that led to my diagnosis. As you probably know HE is also a diagnosis of elimination. The first were my symptoms.

First I presented with quickly deteriorating congnitive symptoms, right side dominant neurological symptoms and myoclonus. I had two brain lesions. My symptoms came on very quickly and got progressively worse.

The 2nd was my dramatic response to steroid treatment. After a month of being very ill my neuro decided to try a short course of steroids and my cognitive symptoms went away within two days of receiving treatment.

The 3rd was of course I am positive for the thyroid antibodies that are associated with HE. My TSH is normal which is characteristic for HE.

The 4th was my lesion response to steroids. One of them is completely gone and the other is almost undetectable. When I moved to California a team of neurologists worked on my case and made my diagnosis.

There is one more test that's helpful with HE that I haven't had yet and that's an eeg. I'm scheduled for one, but the docs were confident and went ahead with the diagnosis.

Jade

[JadeVictoria]

One more thing quickly. I put my email address in my profile under URL's in case anyone would like to contact me if they expect H.E.

[DianeD]

I also have Hashimotos disease

I always follow that statement with 'I wish he'd keep it!)

Anyway, I found your post very interesting.

I was dx'd with MS at almost the same time I was dx'd with Hashimotos disease.

I saw a endocrinologist at the time, but we moved and I didn't see one; just my PCP<

The PCP had a doctor husband who specialed in Thyroid disease. So she did do bloodwork to keep an eye on my thyroid.

Then we moved again. My doc here also keeps an eye on my thyroid; he does bloodwork every six months, but I wonder if he's checking the right thing?

Could you expand on your post a bit. What determines the Hashimoto's Enchalopathy? I am not familiar with that. I also have never had a doctor who count's lesions.

Very interested. Diane

[JadeVictoria]

Hi Diane,
In HE the Thyroid Autoimmune Antibody Test will show high titers of antithyroid antibodies. It's my understanding that TSH does not test for these. Hope this helps. Jade

[Sequoia]

For anyone wishing to do some online research on the subject, it might be helpful to know that it's Hashimoto's Encephalopathy, not Hashimoto's Enchalopathy.

There's also a condition called Hashimoto's Thyroiditis, which is related to, but not the same thing as, Hashimoto's Encephalopathy.

[jumpinjiminy]

Thanks, Jade. I don't have lesions, but have had cognitive decline. I've been on 40mg of steroids for a month and each day I seem to wake up a little bit more than before. I'm starting to feel almost normal again finally. For a while there, it literally felt like my brain was dying. I forgot how to sort my laundry, and couldn't figure out how to put a meal together for a couple of months. Then going to the store couldn't figure out what to put in my cart. It was all very scary, and just kept getting worse.

My neuro ran all those tests and only found slight abnormalities and no lesions.

There is some disagreement on whether or not to call the disease "hashimoto's" because they (at least at Mayo - who has a great discussion online if you search on 'autoimmune encephalopathy') don't believe the anti-TPO antibody levels correlate well enough with disease activity. They believe it's a marker for another autoimmune process that may not yet have been identified.

My TPOab are elevated too, even on steroids. But I'm not on IV or high dose.

The neuro I'm seeing now says if that's what this turns out to be, he will treat it with steroids and IVIG.

Are you feeling better completely after treatment? How long was it? What are the plans for long term treatment? Were you able to get a remission or is it still in process?

Thanks for sharing your story.

[JadeVictoria]

Hashimotos encephalopathy//SREAT

I think it's funny that I spelled it wrong. That's the story of my life since I got it lol. They also refer to it as steroid responsive encephalopathy or SREAT.

Jumping your story sounds fairly similar to mine. I had a lot of cognitive dysfunction and I'm still recovering. I'm about 90% better now than I was when I flared. I still have attention span problems sometimes, short term memory issues, and spellng problems haha. I also have problems with jumping muscles and twitching.

I have no idea how they're going to treat me. They had a meeting yesterday and I haven't heard yet.

I can let you know when I find out. Jade

[DianeD]

For anyone wishing to do some online research on the subject, it might be helpful to know that it's Hashimoto's Encephalopathy, not Hashimoto's Enchalopathy.

There's also a condition called Hashimoto's Thyroiditis, which is related to, but not the same thing as, Hashimoto's Encephalopathy.

I typed Encechalopathy, but wondered at it. Just figured Jade was the one who had it and she might be right, or if her fingers are as non compliant as mine she might have just made a typo! :-)

Not like I'd ever do that...ono!

Anyway, I'm going to look it up later just to see what it's about. I've thought of going to a endocronologist here and Jades post makes me think it might be a good idea.

I do have Hashimoto's Thyroiditis.

My PCP says it's under control, but who knows??

Diane

[jumpinjiminy]

I think it's funny that I spelled it wrong. That's the story of my life since I got it lol. They also refer to it as steroid responsive encephalopathy or SREAT.

Jumping your story sounds fairly similar to mine. I had a lot of cognitive dysfunction and I'm still recovering. I'm about 90% better now than I was when I flared. I still have attention span problems sometimes, short term memory issues, and spellng problems haha. I also have problems with jumping muscles and twitching.

I have no idea how they're going to treat me. They had a meeting yesterday and I haven't heard yet.

I can let you know when I find out. Jade

Oh yeah. I get the spelling thing too, and mixed up typing. Used to fly across the keyboard, now I'm constantly backing up!

I had all that, still do, twitching, spasticity, clonus, blurred vision, ringing in the ears, every type of paresthesia you can think of, weakness, tremors, every week my fever went up and something new came up. Some of it lasted for two months, some of it lasted for two days, some of it blinked on and off for four months then went away on the steroids.

Too much happened to explain, but it was one thing after another for 8 to 10 weeks. Then my fevers went away and the neuro symptoms started to clear up in Oct and Nov. Then another flare up started after Thanksgiving and hit my vision and right leg. Still battling that one on the steroids.

I didn't even know about the thyroiditis until neuro #1 suspected Hashi's and tested for the TPOs. Now I see the endo to get my thyroid leveled out. My TSH has been off for several years off and on and nobody ever said a thing.

I guess since I never complained about the hair loss, headaches, fatigue and fog brain, it wasn't an issue since it wasn't really elevated that much.

Have you had any seizures? I think I've been having partials, but haven't asked the neuro about them yet. Just saw my new one for the first time last week. I'll ask next time I'm in.

I'll be watching for your updates.

Since I've got other autoimmune things popping up here and there, he's also testing for antimicrosomal ab. Not sure what that would indicate, but I think a different thyroid autoimmunity that makes you swing hyper/hypo. It's been more my pattern over the years.

[MyGirlsMom]

Since the symptoms of HE and MS are so similar, perhaps MS World could set up a sub group for people that may or have be dxd with H.E.

It appears to be rare and are probably not any message boards for individuals with this illness.

[JadeVictoria]

No seizures thank goodness.