# Hashi's encephalopathy treatment



## jumpinjiminy (Nov 27, 2010)

Is going well so far. The two dosepacks worked well to knock down the fever and eliminate neuro symptoms. They also had an impact on the fatigue and brain fog. A huge effect.

I've decided to skip the Mayo clinic evaluation and spinal tap for now and just to go ahead with treatment. I've been tested for four months while waiting on someone to do something about this nervous system inflammation while damage keeps accruing. I'm not waiting any longer.

They aren't exactly sure this is what I have, but the antibodies are there and it's definitely an autoimmune something that responds to steroids.

This is quite a relief, to be honest, because I thought I had MS which is far less treatable than HE or similar syndromes.

Since I'm not having a huge flare up with disabling symptoms, we're starting with a high oral dose and tapering down over the course of a month. There is still some effect from the two dosepacks. Hopefully it will be enough. Although something tells me this is going to be a long term treatment. I hope my doc is willing to keep at it until it's completely out of my system. I sure am.


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> Is going well so far. The two dosepacks worked well to knock down the fever and eliminate neuro symptoms. They also had an impact on the fatigue and brain fog. A huge effect.
> 
> I've decided to skip the Mayo clinic evaluation and spinal tap for now and just to go ahead with treatment. I've been tested for four months while waiting on someone to do something about this nervous system inflammation while damage keeps accruing. I'm not waiting any longer.
> 
> ...


I am so glad to hear that "something" is helping to make you feel better. Are they running thyroid panel frequently? Do you have recent labs and results to share w/us re TSH, FT3 and FT4?


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## lavender (Jul 13, 2010)

It is good to hear you are having some symptom relief!


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## jumpinjiminy (Nov 27, 2010)

Thanks. We haven't talked about running thyroid regularly, but I'm sure it's in the cards after discovering the TPOs and low normal FT4 results. I posted my recent labs in the lab results forum (I think). They were done about a week ago, maybe two.

This week I have an appointment with an endo to rule out adrenal issues. My cortisol was also a low normal and I have a lot of symptoms of adrenal fatigue. I don't think she will find anything, but you never know.

These conditions all seem to mimic each other a great deal. If the labs don't show anything definitive, it turns into trial and error if you have a doc with a good hunch and willingness to think outside the box.

He says the endos here won't treat borderline cases, only out of range cases. But he will.

In the meantime, glad to be working on the neuro stuff to start with. We will deal with what remains after this.

How does prednisone affect the thryoid? Any ideas? Starting with 40mg and tapering down 10mg/week until down to 10mg, then staying there for a while if all goes well.

The labs:

FT4 0.89 (0.78 to 2.19)
FT3 3.2 (2.3 to 4.2)
Cortisol 6.3 (4.0 to 22 at 4:00 pm) (drawn at noon)
Tsh 1.370 (0.465 to 4.68)
TPOab 135 (<35)


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> Thanks. We haven't talked about running thyroid regularly, but I'm sure it's in the cards after discovering the TPOs and low normal FT4 results. I posted my recent labs in the lab results forum (I think). They were done about a week ago, maybe two.
> 
> This week I have an appointment with an endo to rule out adrenal issues. My cortisol was also a low normal and I have a lot of symptoms of adrenal fatigue. I don't think she will find anything, but you never know.
> 
> ...


Use caution when using prednisone if you suffer from hypothyroidism (condition of low levels of thyroid hormone that regulate metabolism) or cirrhosis (liver damage). These conditions can increase the amount of prednisone in your blood

Read more: http://www.livestrong.com/article/59752-prednisone-side-effects/#ixzz18ZVfaPfp

Your FT4 is terribly low. Do you think you would benefit from some thyroxine replacement? I do!


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## jumpinjiminy (Nov 27, 2010)

I do too. My doc will prescribe it if I ask. But first I have to see the endo to rule out adrenal insufficiency.

Thanks for the info on the prednisone and low thyroid. I did read something like that earlier today, but would have never known. Technically, my thyroid isn't low - according to the labs anyway - still within range.

Also, I need a high dose of prednisone right now. Probably higher than prescribed. For what it's worth, it's probably a good thing if it goes higher.

Endo appt. Wed. GP appointment 2 weeks. Will know more then. But in the meantime, the prednisone is helping a great deal with the fatigue and brain fog. I needed a little kick before the holidays.


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> I do too. My doc will prescribe it if I ask. But first I have to see the endo to rule out adrenal insufficiency.
> 
> Thanks for the info on the prednisone and low thyroid. I did read something like that earlier today, but would have never known. Technically, my thyroid isn't low - according to the labs anyway - still within range.
> 
> ...


Oh, honey bunny! Technically won't cut it here. Even though in range, it is so low and one must remember that we need ample T4 to convert to T3/FT3 which is our active and most certainly life-sustaining hormone.

You are so sweet to say thank you. You can't imagine how much I appreciate those 2 words.


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## Kaylasly (Nov 14, 2009)

I was just reading your post and want to let you know that I also thought I had Hashi's encephalopathy, adrenal fatigue and whatever else I read about! I really messed up my medicine a year ago and was off work due to all the problems it caused, including my eyes. But one of my main problems was neurological. Twitching, internal shaking, joints and muscles hurt, hands and feet falling asleep, dry hair and the list goes on! Not only that but I had eye pain and unsightly bags around my eyes, also brain fog really bad! Two weeks ago I went to my primary doctor for a bladder infection (which happens frequently!) and I had him test my thyroid. My t4 was at 1.01 (0.82-1.77) and t3 was at 2.9 and my TSH was at 2.050. I told my doc I just didn't feel well, since I was at the lower end he thought maybe we should raise the dosage a little bit. I was taking .88 Synthroid and 5 mcg of Cytomel. He raised me to 100 Synthroid and stayed at 5 mcg of Cytomel. The first thing I noticed at about 5 days in was my hair changed texture, it stopped looking dry! Then all the aches and pains went away, brain fog gone! Now my eyes don't hurt and the bags are improving. I feel a million times better! I just needed a raise! I would suggest trying that before you take all the steroids! I lived with all of this for a year! Now I feel normal again. I just thought I would let you know my story, if you want you can private message me! I hope you get better soon!


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## jumpinjiminy (Nov 27, 2010)

Thank you, Kaylasly. I hope it's that simple, but for now I'm on the prednisone and doing better. There was most definitely a CNS attack. In the beginning it made me walk like a drunk and caused spasticity of muscles in my legs and one forearm which then progressed into my face, back and abdomen. Thankfully, those effects didn't last but a few days for the ataxia and a couple of months for the spasticity. But the spasticity is trying to make a comeback here and there.

I met my new endocrinologist today. She's really nice and a good listener, asks lots of questions, not judgmental. I like her a lot so far.

She's running thyroid function tests, adrenal and thyroid antibodies again and cortisol tests. We will see where to go from there.

There are reports that thyroid antibodies can go down with thyroid meds. I hope it works that way for me too. Nobody wants to take steroids if they don't have to. I sure hope she tries a little synthroid or something to get my levels up a little higher. Her biggest concern was the blood calcium spike over 11. That had her a little worried. I'm not sure why. It did come back down. She's testing that again too.

She says there isn't a lot they can do for HE, and there isn't a lot of information about it. There is no way to diagnose it 100%, so it's all a shot in the dark anyway.

Merry Christmas, all. Thanks for the responses and advice. I'll check back in when I find out more.


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## jumpinjiminy (Nov 27, 2010)

The lab results are finally starting to come in. My new endo reran all of the thyroid function tests along with some others. She found my TPOs elevated, but not as high as the first test - 75 this time. The last was 130ish. My TSH was slightly elevated this time at 3.05. She's starting me on .25 synthroid and I need to come back for labs again in six weeks.

I'm still waiting to hear on the cortisol and other ab tests.


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