# Lets talk about encephalitis--I'm only 30 years old...



## Seeking (Sep 19, 2013)

First of all let me tell you that I'm not diagnosed with Hashi's and I don't know if I have a thyroid disease, but I do have very high Anti-thyroglobulin antibodies. See bottom of post for link to blood testing.

I'm very afraid today because once again its time to face my health issues. I believe I have some kind of encephalitis and let me tell you why. In the past 6 or so months, my memory--both long term and short term, have been going to you know where, and before 6mo ago it had been on a steady decline for years. So I feel it has accelerated in the past 6mo. I can now only remember 1 or 2 things at any given time in my short term memory. Yesterday when grocery shopping I noticed this--could not remember more than 2 things at a time on the list.

Problems that lead me to believe I have some kind of brain damage or encephalitis:

1. Memory that's going to you know where

2. Balance issues/motor skills: falling, tripping, bumping into things, etc constantly

3. Higher brain functions not accessible like they used to be: recall, judgement, decision-making, deeper thinking/critical thinking, and much more that I'm too impaired right now to be able to tell you about, but all having to do with brain function and how I've been losing more and more of it and I'm only 30; you see why I'm so scared? I often feel like I'm trying to access parts of my brain and I can't because there's something blocking my access to those parts of my brain. My IQ has dropped in the past 10 years. If I went back to college today I would not be capable of what I did 10 years ago in college.

So I decided I need to do something about it and I'm seeking help. I called the Mayo clinic and was told that if I'm uninsured I need to bring $5k deposit. Really? Wow ok next option. I mean I can see spending $5k if I know what I'm getting in return, but to just plop $5k down on the counter and then I get to find out what treatment I'm getting is not reasonable. They'd probably say, "We didn't find anything, bye bye."

I need to know what to do next. Here's what I'm thinking I need:

1. MRI or other method of scanning my brain to see if there is inflammation/swelling/obvious damage

2. Spinal tap to detect auto-antibodies attacking my brain

3. A highly competent doctor who isn't going to BS me, and who will actually sit down and pay attention rather than take 10-15 mins and then write some Rx and dismiss me out the door.

Basically the question is: how do I find out if I have encephalitis, or how to do I find out what is causing the brain decline, and how can I reverse it?

Autoimmunity runs in my family; sister has Autism, Celiac, Thyroid Cancer (she had her thyroid removed less than 6mo ago, her thyroid numbers were through the roof), Schizophrenia, etc. I have Celiac, high Thyroglobulin antibodies but not high TPO (yet), and lack of brain function. Mom has Type 2 diabetes but no known autoimmunity (she hasn't had any testing done for it; I bet its there).

To see my blood tests, click here.

Any input is very much appreciated; thanks!


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## joplin1975 (Jul 21, 2011)

So you haven't been dx'ed with Hashi's...have you been put on any thyroid medication?

I can certainly appreciate your concern, but I think you might be putting the cart before the horse. Everything you mention is a pretty common thyroid symptom. Before dumping thousands in to highly invasive and expensive tests, why not see if you can find a doctor who will treat the thyroid condition first?


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## Seeking (Sep 19, 2013)

joplin1975 said:


> So you haven't been dx'ed with Hashi's...have you been put on any thyroid medication?
> 
> I can certainly appreciate your concern, but I think you might be putting the cart before the horse. Everything you mention is a pretty common thyroid symptom. Before dumping thousands in to highly invasive and expensive tests, why not see if you can find a doctor who will treat the thyroid condition first?


Because I don't have Hashi's. If you click on my link to my blood tests you will see that I don't have high TPO so I don't have Hashi's. I have high Anti-Thyroglobulin antibodies but currently that is not associated in the medical world to any thyroid disease so there is no treatment and no one knows how to bring that number down. I have read that dosing up on iodine could cause excretion of bromine which could then bring the number down but I haven't seen any actual proof of that yet so I haven't dosed up much. I went from the RDA to 1mg/day of iodine and am about to do my yearly blood testing so we'll see if the anti-thyroglobulins went down or not.


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## joplin1975 (Jul 21, 2011)

Um...respectfully, who says TgAB isn't associated with Hashi's? I don't think you ever had a thyroid ultrasound, correct? You should have one, ASAP.


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## Seeking (Sep 19, 2013)

joplin1975 said:


> Um...respectfully, who says TgAB isn't associated with Hashi's? I don't think you ever had a thyroid ultrasound, correct? You should have one, ASAP.


In that case I will need to find a doctor who is extremely likely to let me have a thyroid ultrasound. But most doctors are highly resistant unless the patient is out of the reference ranges for TSH and/or T4, which I'm not. That is what has stopped me before but I guess it's finally time for me to find a good referral and get on with it.

Also, I thought TgAB wasn't used in the diagnosis of Hashi's, I thought only TPO could be used for diagnosis.


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## joplin1975 (Jul 21, 2011)

Actually, neither should be used for a diagnosis of Hashi's. A biopsy, yes....thyroid antibodies just indicate a thyroid issue, but not the nature of that issue. TPO is certainly more closely related to Hashi's, but, again, it's not conclusive. Likewise, elevated TgAB is most closely associated with thyroid cancer. Any good doctor would order a thyroid ultrasound. In fact, your frees should have little impact on whether or not an ultrasound is appropriate. In your case, the TgAB number should be a very clear path to an ultrasound (again, assuming you have a good doctor...which can be very difficult to find!).


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## Seeking (Sep 19, 2013)

joplin1975 said:


> Actually, neither should be used for a diagnosis of Hashi's. A biopsy, yes....thyroid antibodies just indicate a thyroid issue, but not the nature of that issue. TPO is certainly more closely related to Hashi's, but, again, it's not conclusive. Likewise, elevated TgAB is most closely associated with thyroid cancer. Any good doctor would order a thyroid ultrasound. In fact, your frees should have little impact on whether or not an ultrasound is appropriate. In your case, the TgAB number should be a very clear path to an ultrasound (again, assuming you have a good doctor...which can be very difficult to find!).


Yeah that part about finding a good doctor...that is the hard part. I was just about to make some phone calls to some local Drs and then I realized they are all at clinics, not at hospitals, and therefore they probably do not have ultrasound machines. This is going to be challenging. I'm making the assumption that 99% of Drs who work in hospitals are going to strictly use the TSH to determine whether I should get an ultrasound or not, and therefore I'll have wasted my time and $200. Not going to let that happen, so the first step for me is to find a Dr who has an ultrasound machine who doesn't exclusively use TSH. And it's Friday so that's not even going to get underway until Monday.


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## creepingdeath (Apr 6, 2014)

All those symptoms are thyroid related.

Take this from a confirmed Hashi's person.

I did learn that thyroid disease and those lab tests are not an exact science.

Just because your labs are in range doesn't mean you don't have a thyroid problem.

You have one thing related other than your symptoms. It runs in your Family.

That alone should be enough to have your Doctor run a thyroid scan.

Most Doctors do not have ultra sound equipment in office.

I have to make an appointment at the hospital for image studies and walk in for veinupucture .


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## joplin1975 (Jul 21, 2011)

Agreed w/ above. It would be odd for your doctor to have an in-office u/s machine. You should be an order from your doctor to go to some kind of imagining center.

Regardless, encephalitis is EXTREMELY rare, is associated with extreme thyroid labs (i.e., a TSH of over 100), and usually the patient has symptoms like seizures or stroke/stroke-like symptoms. You sound ill...but you don't sound like that.


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## WhatHappened (Nov 12, 2015)

Dr Google is evil. For the most part any thyroid symptom Googled without the word thyroid in it will lead you to nothing but horrible websites and will leave you writing your will. These are heartbreaking websites. It's not to say it can't happen but most of them are exceptionally rare.

In my case I wondered if I had ALS. The wear pattern on my soles had worn differently and there were times I stumbled for no reason at all and I'm really quite spry. And a thousand other symptoms including brain fog. What I had was Hashimoto's and a body and brain that wasn't exactly trying to help me out. When I later found out after being diagnosed was that thyroid disease was one way of excluding ALS. Oh and I went from somebody who never cared and never took an aspirin to having serious health anxiety.

Joplin and creeping have giving you great advice. From now on when you Google a symptom throw the word thyroid in there also.

The ultrasound will not be definitive for cancer or not but it needs to be examined and it will help guide your dr. towards looking at your antibodies and symptoms differently.

We are pulling for you.

And maybe see if you can get an appt with a family members endo, ent, or gp. Someone already familiar with your family's health history.


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## jenny v (May 6, 2012)

Can you tell us what city you're close to? I have a "good doc" listed downloaded from Stop the Thyroid Madness and I could see if there are any good docs near you to try.


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