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Hashimoto's Encephalitis - Diagnosis and Treatment

Permanent Linkby amaranta on Sun May 27, 2018 5:50 pm

Hashimoto’s Encephalitis (HE) is a diagnosis that is made through exclusions of other causes. There is no one specific test to diagnose HE, but usually the tests that are performed are thyroid antibodies (Anti-Tg and Anti-TPO) blood test, MRI, EEG, and spinal tap. HE is a quite rare disease, therefore it is definitely not something that would be tested for right away. Many healthy people have elevated thyroid antibodies, these antibodies can also be an indicator of Hashimoto’s thyroiditis, which is not the same as Hashimoto’s Encephalitis. After I continued to not respond well to anti-depressants and anti-psychotics, I consulted with an endocrinologist to discuss whether I had any thyroid issues. My thyroid hormone levels were normal but elevated Anti-Tg and Anti-TPO antibody levels were discovered. At that point the endocrinologist diagnosed me with Hashimoto’s thyroiditis and stated that the thyroid antibodies were not something to worry about at the current moment as they were just an indicator that I might develop thyroid disease twenty years from now on. There is still no exact proof that it is these thyroid antibodies that caused my symptoms, but my condition did improve after intra-venous treatment with Solu-Medrol (anti-inflammatory glucocorticoid), and my antibody levels decreased as well. I will not claim causation, but there is correlation here, and my neurologist agrees that I have improved since the steroids treatment.

I am not sure whether the numbers are meaningful, it had been stated that specific values are not correlated with the severity of HE symptoms, but initially in June 2016 my Anti-Tg levels were over 1,000 and my Anti-TPO levels were above 40. This was during the period of time when I lost my job and was on Latuda and Sertraline. I was finding it physically difficult to wake-up, to move, and to talk. My speech was becoming slower and everything was also followed by intense emotional pain. It was sort of a state of grief without cause. As I mentioned in my previous posts, I did go on AIP (autoimmune protocol diet) diet after discovering that I potentially had autoimmune disease, and my symptoms did improve. I was able to go back to full-time work in November 2016 and after awhile tests showed that my Anti-Tg levels decreased to around 500, Anti-TPO levels stayed about the same. Again, this is anecdotal evidence, and I cannot claim that it is specifically the AIP diet that helped me. A gastrointerologist did advise me to try a low-FODMAP diet and AIP overlaps with low-FODMAP. Also I did have a ‘maybe’ result for celiac testing and I went gluten-free. I also stopped taking anti-psychotics and a new diagnosis of Hashimoto’s thyroiditis (at that time), instead of schizophrenia (diagnosis that I received previously), provided me with psychological benefits. Therefore it is not possible to untangle all the changes that I made during the summer and we don’t know which factor improved my condition. Some conditions improve and relapse in cycles as well, therefore changes in symptoms could be not due to the actions of the individual.

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Autoimmune Encephalitis Story (part 3)

Permanent Linkby amaranta on Wed Feb 21, 2018 3:41 am

In June 2016 I actually started to have some hope. No, I didn’t throw away my charcoal grills, but at least now there was something to research, testing to be done. Previously my psychiatrist told me that I had a choice between psychosis and antipsychotics and I don’t think that should ever be said to a patient. If the antipsychotics are not working and the psychosis is emotionally unbearable, what message are you sending your patient? Well you are giving them another reason to commit suicide – why live if the only choices you have are being non-functional and psychotic or being on olanzapine. Anytipsychotics do help some people and therefore they are a good choice for them but for me they were not working at all, so the right thing to say would be that more investigations would be done. As you see from the story, it was not the psychiatrist who ended up investigating, but my mom. So I got lucky, but it should not be this way. Access to proper treatment should not be based on luck and having someone googling your symptoms for you, this is the doctor’s job.

So in June 2016 I went off Trazadone, Latuda, Mirtazapine, Lorazepam. I only continued with Sertraline until October 2016. I started taking Cytomel (man-made version of thyroid hormone T3) and I got tested for celiac disease. The results were a ‘maybe’, inconclusive, but I still decided to try going gluten free and dairy free as some people with autoimmune disease do report improvement after eliminating those foods. Yes, some will say it is only anecdotal evidence, but when the way you feel on a daily basis makes you purchase hibachi grills, anecdotal evidence is good enough. Especially when the doctors have no suggestions or solutions for you. I was told that Hashimoto’s thyroiditis was not something to be too concerned about because it could affect the thyroid in the long run but at the moment my thyroid hormone levels were normal. I was told that I had nothing to worry about for the next twenty years. But then why were there old women, whom no one else notices, asking me to help them die? Why was I afraid of passing by Starbucks because hearing music from the speaker caused a feeling of grief? At that point I have not yet heard about autoimmune encephalitis, which is brain inflammation, so I had no answers to these questions.
Last edited by Snaga on Wed Feb 21, 2018 4:24 am, edited 1 time in total.

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Autoimmune Encephalitis Story (part 2)

Permanent Linkby amaranta on Mon Feb 19, 2018 3:57 pm

First part of the story:


Confusing summer continued

The confusing summer continued and it did not get better. I was allowed by the university to rewrite the exam that I failed and I had about two months to prepare for it. I continued working as a research assistant for a professor and I was supposed to be doing my own research since I was a graduate student but this task I found extremely difficult. I felt that a part of my mind which was responsible for creativity evaporated and I could not come up with any ideas myself, I could only follow clearly outlined instructions. I also became very indecisive and for anything that I was going to do, I required a confirmation from another person. Some part of my brain clearly started to malfunction because previously I was able to write academic papers, organize camping trips, participate in a band. Now I could not write even a paragraph about my research, I would just sit and stare at the screen, not able to extract any continuous thoughts from my mind. I was very uncertain of what I should be doing everyday and I would refer to my boyfriend for any decision – ‘what should I do in the evening?’, ‘should I continue with the graduate program?’, ‘should I call my friend to make plans?’.

My boyfriend and my parents could see that I was quite stressed about not having any ideas for research and not being able to decide whether to continue with grad school. Me and my boyfriend took some trips to national parks during the summer in order for me to de-stress, and usually I would really enjoy camping and hiking, but these times it was different. Trips became for me too emotionally overwhelming. A view of a lake from a lookout point would bring me to tears as I would think how meaningless the beauty of this was. We were just pieces of organic tissue clumped together, soon we would cease to exist and none of our experiences mattered. What was the point of having a camping experience if once you no longer exist you will have no memory of it? During the hike several times I had this dissociative experience where I would feel that the event is not happening right now but it was happened already in the past. As if you would watch an old video of your family or someone you know and maybe who was no longer alive. I could not enjoy the moment because I did not feel that I was in the current moment, I felt sadness and nostalgia for a time that had already passed.

All these psychological experiences were on top of the physical symptoms. Since I did not have courses during the summer I did not have to wake up early and there were many days where I could not get out of bed until 2 PM. I experienced extreme fatigue and muscle aches, my body felt very heavy and it was difficult to move around, I often had shortness of breath. My eyelids were swollen and I felt pressure at the top of my head, it was often difficult to look up or look straight. There were also frequent migraines and brain fog. It was as if I was getting detached from my body and my brain – I having difficulty controlling the movements of the body and processing thoughts. My consciousness was clouded and I could not get out of the fog.

I ended up leaving the graduate program as I could not see myself continuing with more courses, exams and a thesis. At the moment when I left I was not very upset about that because in my mind I had an explanation that my symptoms were sort of there as a message that I was not going the right way with my life. I guess my mind was looking for an easy solution or it was trying to make sense of the situation. It’s very difficult for a broken brain to realize its own sickness, especially if its the first time. After I already got diagnosed and connected with many other autoimmune encephalitis patients, I noticed that those who were diagnosed at an older age were more proactive about their health. Before the onset of the symptoms in my early twenties, I have probably visited a doctor only three times since I cam...

[ Continued ]
Last edited by Snaga on Wed Feb 21, 2018 4:25 am, edited 1 time in total.

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Autoimmune Encephalitis Story (part 1)

Permanent Linkby amaranta on Mon Feb 19, 2018 3:43 am

"You asked me once," said O'Brien, "what was in Room 101. I told you that you knew the answer already. Everyone knows it. The thing that is in Room 101 is the worst thing in the world."

— George Orwell, 1984.


I have been diagnosed with autoimmune encephalitis (Hashimoto’s Encephalitis) in April 2017. It has been a long way for me obtaining a proper diagnosis and I would like to share my experience.

It’s hard to pinpoint a specific moment when my symptoms started because the onset was very gradual. Perhaps this type of autoimmune encephalitis is a genetic condition from birth and symptoms worsen over time? There is a lot we still don’t know about the pathogenesis of AE.

Childhood

As far as I can recall, I had low self-esteem and anxiety issues. Also I remember very clearly a few episodes from childhood where I experienced a sudden onset of dread and a sense of claustrophobia. One event was very terrifying. I was probably five or six, I was lying in bed trying to fall asleep, when suddenly the closet near the wall started to enlarge and bend in towards me. The walls of the room were shrinking, and even though my mom and my brother were just in the next room, I suddenly felt completely isolated, becoming trapped by the gigantic closet. I jumped out of bed and ran out of the room. The presence of other people in the living room and their voices calmed me down.  This episode did not repeat and I never mentioned it, until almost twenty years later.

20 years later

I used to be a pretty active person. While doing my bachelor’s degree in economics and finance, I was also learning French and started to play the violin. I often went camping, when the weather allowed, as well as hiking and downhill skiing. I never felt very good about myself and I did experience anxiety due to that, but I did have a keen interest in life. I rarely felt bored and I had many plans such as learning Mandarin, writing a book, and becoming a better violin performer.

2012

In the end of 2012 I was in the process of doing my master’s degree in economics. Due to my constrained budget, I lived in a basement at that time, an arrangement which I was not very happy about. I started to notice a swelling under my left eye and I became concerned that I was having a reaction to mold that could be hidden under the baseboard. I did go to the university walk-in clinic but the attending doctor said that she did not see any swelling or the prominent eye bag that I was talking about. I was not satisfied with the answer and in general I was becoming less satisfied with everything. The graduate program was quite stressful for me and I was also living away from my boyfriend and my parents. Few people will tell you that grad school is easy, so increasing feelings of anxiety during this time did not seem to be a reason to see a doctor.

One evening in November I stayed alone at my boyfriend’s bachelor apartment. We were both there during the day and in the evening he left to a friend’s party, to which we were both invited. I did not join him and said that I had to study. I did have a lot of course readings to do but I did not mention that the main reason was something else.  I chose not to go to the party because I sensed that I was not wanted there. My boyfriend’s ex-girlfriend was going to be present and in my mind it became evident to me that my boyfriend would be ashamed of me in front of her and other people. I imagined how everyone would be glancing at me with a look full of pity, they would not say anything to me directly, but they felt sorry for me and at the same time would be embarrassed by my presence.

These thoughts about my inferiority became quite persistent and my mood was very low. Once my boyfriend left for the party, I stayed alone in the apartment and tried to continue reading the econometrics textbook. I tried to understand the text but I started to feel lightheaded and the concept discussed in the paragraphs was slipping away from me. The r...

[ Continued ]
Last edited by Snaga on Wed Feb 21, 2018 4:09 am, edited 1 time in total.

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