hashimoto’s thyroiditis – Notes of a Neuropsychiatry Amateur

Dealing with depression after encephalitis. After many years of trials, this is my current depression regimen, just wanted to share.

Hello everyone, I just wanted to share my current depression regimen and some situation info, in case anyone has similar health issues. I have experienced many hospitalizations since 2015, including involuntary psychiatric hospitalizations. Finally in 2017 I was diagnosed with autoimmune encephalitis (brain inflammation), as well as autoimmune thyroiditis. I was treated with intravenous corticosteroids and that led to some improvement. I continue to experience health issues, but I have made several life style changes that have helped me and that I wanted to share. Again, I was diagnosed with autoimmune disease, and my neuropsychiatrist believes that the encephalitis greatly contributed to my depression. Clearly it’s not the case for everyone, so I am not stating that this should work for all. I have been doing better since these changes, I was able to complete a graduate degree, get back to painting, and started writing and playing guitar again. These were huge improvements for me as I was not able to enjoy any hobbies when I had severe depression and was not able to pursue graduate courses.

I cut out all refined carbs and processed foods. There is sufficient evidence indicating that these foods contribute to inflammation. I am not doing keto or low carb, I am not trying to be very strict with myself, I enjoy all sorts of complex carbs such as baked plantains, potatoes, oatmeal, fruits, berries, etc.
Switched to low glycemic foods – this related to #1, as cutting out refined simple carbs in general does leave one with complex carbs that have lower glycemic index.
Foods that cause an immune reaction – this clearly does not occur for most people, but some do react to certain foods. I noticed that I feel physically and emotionally worse after eating gluten, dairy, or soy, so I had to drop these from my diet.
I go to sleep earlier and stay away from my laptop/phone screen after 9pm. I used to stay up late, but now I go to bed around 11pm. After 9pm I usually dim the lights in the room a bit and I read on my Kindle. Kindle Paperwhite does not emit a high amount of blue light. I also installed blackout curtains so that I spend the night sleeping in the dark.
Sleep is very important – so when I really can’t fall asleep, I do use a cannabis oil (NightNight CBN + CBD oil). But changing my diet, losing weight, and going to bed earlier, did reduce my insomnia, so I don’t need the oil every day.
Significantly decreasing my caffeine intake – personally for me it did lower my anxiety and the occurrence of panic attacks, I now only have green tea in the afternoon, otherwise I drink rooibos tea, water, kefir, decaf tea.
Intermittent fasting – I do fell less brain fog and more clear headed when I am not eating the whole day. I used to surf the internet at 1am eating Sweet & Salty bars. Then my mind would go into dark places and I would start reading about serial killers. Now I eat two to three meals a day between 9am and 5pm, I fast for 16-18 hours a day.
Seeing a psychologist – going through CBT and DBT did help, and this related to #5. I still experience racing thoughts, anxiety, and other issues, but I can now more easily choose to not follow my thoughts. For example – I did used to read a lot about US serial killers and then I would freak myself out and I would start to think that someone could climb through the window. Now I choose more what I read – should I keep reading about mass murders? What is the point of that for me? Will that change anything for the better?
Sunlight – I try to get some sunlight each morning, if I have no energy to come out, I still stick out of the window and get some sunlight on my face.
Exercise – I experience certain pains due to autoimmune disease, and fatigue, so I don’t do extensive exercise, but I do yoga at home. And by exercise I don’t mean that I do a whole hour after work, I do certain yoga poses occasionally throughout the day. I think that’s still better than no exercise.
Shrooms – I did several shroom trips, at home alone, after I was treated for encephalitis. I haven’t done shrooms for a while due to pregnancy and breastfeeding, but the positive antidepressant effects of the trips still remain for me.
CBT, again – accepting that some days are better than others, some are worse, but also seeing the positive – in general I am doing much much better now than in 2016. I am female, hormones fluctuate, I do feel worse during the luteal phase, but I experience a lot more enjoyable moments than before my steroids treatment and this lifestyle change.

My previous mistake when going on a dairy-free diet: too many food restrictions and not enough calcium

I want to describe my mistakes with my previous attempt at going dairy-free. A bit of background – I started experiencing severe abdominal cramps in my 20s, then also I started to have panic attacks, fatigue, and swollen eyelids. I had problems waking up in the morning. I ended up being referred to a psychiatrist, but the medications did not help. Finally an endocrinologist checked my antibodies and found that I had very high levels of thyroid antibodies, so my immune system was attacking and damaging my thyroid. I was put on thyroid medication. I also was referred to a neurologist who then diagnosed me with autoimmune encephalitis (brain inflammation), and I was treated with intravenous steroids (for immunosuppression). At the same time I started reading online a lot about autoimmune diseases and I came across articles about the AIP diet. I was feeling to unwell, so I decided that I had to change my lifestyle, and I started following the AIP diet strictly – no dairy, no gluten, no soy, no grains, no legumes, no nuts, no chocolate, no alcohol. There were a lot of restrictions! You can google this diet, if you are curious.

After the corticosteroid treatment and the diet change, I did start feeling better, I l also lost 20kg, but I still experienced a lot of symptoms such as irritability, leg spasms, feeling of numbness in my fingers, and insomnia. I ended up deciding that there was no scientific evidence for my dietary restrictions, and at some point I went back to eating dairy and gluten, as well as the rest of the foods. I ended up gaining 30kg, and starting to again experiencing paranoia, panic attacks, nightmares, and fatigue.

I recently decided to look into my diet again and instead of going into the extremes – such as the very strict AIP diet, I started with excluding dairy. I also realized that when I was dairy-free the first time, I did not consume any foods with calcium, and that could have been the cause of my muscle cramps and numbness in my hands. This time I looked into non-dairy sources of calcium and calculated how much of those foods I would need to be eating. I have now been dairy free since February, I also went gluten-free and soy-free, as I noticed through multiple observations, that those foods were also causing symptoms for me. I now no longer have any pains in the lower abdomen, I have more energy and was able to attend yoga classes. I have no symptoms of low calcium this time, as I eat canned sardines, canned salmon with bones, and powdered egg shells. I am feeling much better, and I have lost around 22 pounds since February.

Hymenolepis diminuta observations and paper

As described in my previous posts, I have started HDC helminth therapy on June 4th. It has now been over a month. So far I have taken HDC three times – 10 on June 4th, 10 on June 9th, and 20 on June 25th. I have also updated my NA by adding three more on July 6th. It has now been over two weeks since my last HDC dose, helminth therapy wiki suggests dosing every two weeks and adult dosing is in range 30-60 HDC bi-weekly. I am waiting for my next order of 20, the delivery has been slow, and it’s expected to arrive on Friday. After that I plan to increase the dose to 30 as is advised, 20 may be not enough of a therapeutic dose for an adult.

One important observation is that during my period, which happened soon after the third dose of HDC, I did not have to take any pain relievers. I see this as not just a coincidence because last such occurrence happened almost a year ago in July 2018, after I started NA therapy. After that one time unfortunately pain levels during periods went back to usual unbearable and as usual I would take at least two Naproxen gels, sometimes also an ibuprofen. Several times I had to leave work early or work from home. Therefore I was quite surprised that when my period occurred in the end of June the pain began as usual but did not increase to unbearable levels. I went to work as usual, I always keep Naproxen in the drawer in the office and at home, but the pain never rose to the level where I would need a pain killer. I would say that just for this benefit HDC is already worth continuing as not being crippled by pain made me feel more free. Even though it’s not my fault, I often feel guilty leaving home early or asking to work from home every month. I am also not pleased with having to take Naproxen as for me it causes acid reflux and it makes me think that I am undoing the benefits of my efforts to heal the gut.

Another observation was recently increased heat tolerance. In beginning of July temperatures rose to over 30 degrees Celsius and there is no central AC where I live. In order to cool down the house, I usually have to install two window air conditioner units. These units were taken down for the winter, so there were several days of temperatures around 30 degrees inside. I noticed that my sleep was not as disrupted as it previously would during heat. Also in general I was not as incapacitated by the temperature, I did feel lethargic, but did not have as severe indecisiveness nor mood swings exacerbation that often occur for me during summer heat.

The new lab test results are also encouraging. Free T4 and T3 stayed at the same levels, within normal range. TSH went down to 2.0, which is below the previous value of 2.58. This is a positive result, since some research indicates that the optimal cut- off value of TSH is 2.5 MIU/L. Anti-TPO antibodies have also decreased.

TSH cut off point based on depression in hypothyroid patients

test_jul2019

On a side note, I found that someone wrote their undergrad honors thesis on Hymenolepis diminuta. “Impacts of Hymenolepis diminuta (benign helminth worm) colonization on chronic pain and the central nervous system in Sprague Dawley rats“. If I would go back in time, I would prefer to also study neuropsychology. Unfortunately in my undergrad I was calculating bond and option prices. Glad to hear whenever someone is doing research on treatments for autoimmune disorders, specifically the connection between neuropsychiatric problems and inflammation. “The results from this project partially support the tenets of the hygiene hypothesis. Though behavioral results following CCI surgeries were inconclusive, molecular investigation of cytokine levels in the hippocampus showed promotion of an anti-inflammatory cytokine milieu due to the upregulation of IL-10 and downregulation of its receptor. These promising results guide future research toward investigation of cytokine levels in other brain regions, such as the amygdala.“

Impacts of Hymenolepis diminuta (benign helminth worm) colonization on chronic pain and the central nervous system in Sprague Dawley rats

Depression and TSH levels

I continue to track my thyroid hormone levels and thyroid antibody levels. As my endocrinologist predicted, after a thyroid inflammation event (as indicated by ultrasound test results), and a state of hyperthyroidism, my thyroid hormone levels went the opposite way and now I am hypothyroid. I will say that for me personally the hyperthyroid state did not feel as bad as the current hypothyroid state, though I am hopeful that hypothyroidism can be treated with levothyroxine, which was recently prescribed to me. My antibody levels continue to be high and my endocrinologist stated that with Hashimoto’s autoimmune disease in general antibody levels stay chronically elevated. I might be receiving IVIG treatment soon, in April, and hopefully that will reduce the inflammation of the thyroid.

test_mar2019

In terms of emotions, during hyperthyroidism, I did feel jittery and very hungry, but I also experienced a roller coaster of more positive emotions such as more interest in men, infatuation, desire for adventure. I can’t say that my depression went away, but I do remember having moments of making plans to travel to Guatemala to attend a Spanish course, thinking of having an affair, wanting to perform in a band with my violin. Recently with hypothyroidism, as I described in a previous post, what I had been feeling is complete disinterest and grief. As if your life is somehow passing by, the world keeps going without you. There is a feeling of slowness in your movements and speech, a sense of painful emotional weight, inability to fully engage in an activity. Well if you have experienced hypothyroidism, you might know what I’m talking about. It’s feeling lonely and yet having no energy to call someone to make plans. Thinking that in theory I do enjoy playing violin, but today doing that would be just too difficult. Exercising definitely was becoming impossible, my legs have been feeling very heavy, and my whole body in general.

Today I started levothyroxine 0.025mg and I am hopeful that this will lower my TSH and therefore relieve all the symptoms that I am experiencing, at least I am very hopeful that levothyroxine in combination with IVIG will really help. I found an interesting study in which the authors seek a TSH threshold for depression. Two thirds of the study participants were female, as expected. There were 174 hypothyroid patients who were receiving levothyroxine treatment and were considered euthyroid. “Individuals who had developed euthyroid state under treatment with levothyroxine with TSH levels of 0.5–5 MIU/L with no need for dosage change were included in the study. After comprehensive history taking, laboratory tests including TSH, T4 and T3 were performed. Beck depression questionnaire was completed for all patients by trained interviewers. TSH cut-off values based on depression was determined by Roc Curve analysis.” Basically, as I understand, the researchers wanted to find out whether there is correlation between TSH levels and depression for patients who were diagnosed with hypothyroidism and are receiving levothyroxine.

Results were the following: “According to Roc curve analysis, the optimal cut- off value of TSH was 2.5 MIU/L with 89.66% sensitivity. The optimal TSH cut- off based on severe depression was 4 MIU/L. The present study suggests that a clinically helpful TSH cut-off value for hypothyroidism should be based on associated symptoms, not just in population studies. Based on the assessment of depression, our study concludes that a TSH cutofff value of 2.5 MIU/L is optimal.” I think what they are trying to say here is that based on large population studies there was a range for normal TSH levels determined, for example on my lab tests that range is stated as 0.32 – 4.00. Their study shows though that even though my individual TSH could be within this range, it doesn’t mean that I won’t be having any hypothyroidism symptoms, such as depression. Maybe for me personally TSH of 3.80 would be too high and my mood would be influenced and I would be better off at a level of levothyroxine that would bring my TSH below 2.5. Therefore it’s important to consider the symptoms of a specific patient and not just the determined ‘normal’ range.

TSH cut off point based on depression in hypothyroid patients

Also different countries and labs don’t state the same ‘normal’ ranges. In the study the TSH range is indicated as 0.5 – 5 MIU/L, while my lab states 0.32 – 4. So if I went to a doctor in another country, he could have said that my thyroid hormone levels are normal, but based on my lab’s range, my endocrinologist said that I might be becoming hypothyroid, since TSH is out of range, and therefore prescribed me levothyroxine. Also he did take into account the symptoms that I was experiencing, which is what the authors suggest – don’t just look at the TSH, how does the patient feel?

Doing something while depression is on

On Sunday I woke up not very late and made pancakes, brewed a thermos with green tea and drove on a highway to a park to build a snow woman. Yes, it was specifically a very shapy lady, not a snowman. Today after I got home from work I felt that I couldn’t move. I couldn’t move because of overwhelming emotional pain – it was a sense of grief, a feeling that my personal world has collapsed, that there is nothing to look forward to. I am not going to say that on Sunday I was extremely happy, but it was clearly a more normal and stable day. What has occurred to make today different? I’m sure the answer lies in biochemistry, but at this point we don’t have the tools or knowledge to know what exactly should be measured and when. My last period started on February 15th. (I suggest to record start dates in order to understand whether the cycle affects your mood – at least in the case that you usually feel worse in the first few days before/during your period – you can remind yourself that this is not permanent and it will pass as it did before).

Today it is March 14th, could my serotonin levels be dropping? WebMD suggests that “as many as 90% of women experience unpleasant symptoms before their periods“, it has now been almost a month since my period, therefore today is supposed to be close to the “before period” time.

Estrogen and Women’s Emotions

My thyroid antibodies also continue to be high, Anti-TPO at 250 and Anti-Tg at > 4000. TSH is abnormally high as well. My CT scan also indicated “partially imaged polypoid mucosal thickening in the right maxillary sinus”. What does that mean, does that have anything to do with depression? It seems to mean chronic sinusitis. I don’t know whether this ever has any effect on your mood.

lifelabs_15032019

The information above leads to some guesses about why I started to feel more severe emotions, but I can’t say that I actually know. I believe I have already made the changes to my lifestyle that I could – cutting out gluten and cow dairy because of celiac disease, avoiding processed foods, eating a lot of whole grains, fruits, and vegetables. I drink a lot of green and black tea, never drink or smoke, I go to sleep a bit before 12am and sleep for 8 hours. I walk to the subway instead of taking the streetcar, on a grey day I use my daylight lamp in the morning. I got an unlimited pass to a yoga studio and go there during lunch. No caffeine after 6pm. I call my mom and my grandmother. I try to avoid scrolling through Facebook. Therefore I would say – I’ve really done it all, what I could.

So what if you feel you’ve been as healthy as you can, you see your psychiatrist regularly, but the depression still sets in? Currently I am waiting for the IVIG procedure which is supposed to be done in April. You might be waiting for your next appointment to talk about switching medications, or you just started an antidepressant and the psychiatrist said that the positive results may take effect only after four to six weeks. I think the only strategy in such a situation is to think of activities to pass the time. Doing something even though feeling depressed. Even if your brain is dissuading you from it, it’s telling you to sit still, to not move, that any action you take will make it worse.

In DBT therapy there is an idea of opposite action and I believe this is a useful technique. “In DBT, the opposite action skill is a deliberate attempt to act OPPOSITE of your emotion urge. If your emotions are doing more harm than good, try acting opposite.” My thoughts are telling me that I am in too much emotional pain to do anything, but doing nothing will prolong the sense of time and I will just suffer more while waiting. For example last Thursday while sitting at work, I felt that I feel too depressed and lethargic to do anything expect stay seated during lunch and that trying to do any activity would make me feel worse. In this case my emotions and thoughts were only harming me because continuing sitting, after already three hours of sitting, would definitely not make me better off. I would be wrapped in my thoughts, prolonged sitting is not good for blood flow and chronic pain, time would also go very slowly. I had to use opposite action and I forced myself to go downstairs, change, and attend a yoga class. The 45 minute class passed quicker than 45 minutes of sitting would be and because the classroom was hot and I had to keep focusing on switching poses, my negative thoughts were less persistent. I am not saying that I went to yoga and felt delighted and blissful for the 45 minutes, I am saying that I was better off by going there instead of following my emotions and doing nothing.

Another example where following my emotions would make me worse off is often when I start feeling lonely I get wrapped in thoughts that I don’t have any close people and not many people to spend time with. Next, I start to think that I am the only one with no plans for the evening/weekend, and therefore it is pointless to ask anyone whether they want to meet. Clearly in this case acting as my thoughts and emotions tell me to would only harm me as I would end up not reaching out to anyone and of course then I will have no plans with certainty. Here opposite action would be texting/calling someone and proposing to make plans. Preferably be specific with an activity, place, and time. Refer to Sheldon’s friendship algorithm for instructions.

Sheldon’s Friendship Algorithm

Suggestions for passing time with depression are listed below. What works for me are simple activities, not trying to follow some life changing goals or saving the world. Depression is a real illness, and if all I was able to do during a bad day is coming out to convenience store to buy plantains, I will say – good for me.

See an old friend, talk about your feelings, or talk about nothing in particular – remember a dumb high-school story, laugh about it
Talk on the phone to someone you think is a good person, call them even if your brain is telling you that you are better off not speaking to anyone
Cook/bake something that you know how to make and enjoy eating, I make crepes because the recipe is simple and this activity passes time as I have to fry each crepe separately
Walk to a store nearby to buy something small – tea, eggs, apples, etc.
Jump with a skipping rope at home, or on a porch, or outside. Aerobic exercise is healthy
Get the lyrics to a song that you know and sign the full song, even if initially you really don’t feel like it. It will help pass the time and singing will not hurt you
Walk around the block while listening to a podcast
Watch CollegeHumor or Big Bang Theory

Green tea vs. infliximab and tracking thyroid antibodies

I continue to track my thyroid antibodies and I will post my results here in case this information will be useful for anyone. Trust me, I know how fluctuating thyroid hormones suck and what it means for you in terms of your mood, energy, sleep. Today is a work day and since my work place is quite formal, I should be there by 9am. Nine to five, the usual. Well I couldn’t fall asleep until 1am and woke up at 6am. I felt cold shivers and my palms were sweaty. I lay in bed for a while but it was no use, I could not fall back asleep. I did get to work slightly after 9, not very late, sat down in my cubicle, turned on my screens and stared at the code. What was I supposed to be doing today? I had forgotten. My hands continued to sweat and I had chills. Emotionally I felt as if a train had run over me. I couldn’t remember on what task I stopped at on Friday. I sensed such fatigue that I was finding it difficult to sit up straight.

Logically I knew the cause, it all happened as my endocrinologist said it would. After a period of hyperthyroidism, my TSH went to almost non-existent level and now instead of being too high, my thyroid hormones were quickly dropping. Lab test on February 1st showed that free T4 and total T3 were near their lower threshold and TSH was also low. Since TSH continues to be low, and it is the thyroid-stimulating hormone, it was not stimulating the thyroid enough to produce T3 and T4. Therefore it’s likely that today hormone levels were even lower and I went into hypothyroid state.

test_feb2019

So this is what’s going on with my thyroid. I think the hypothyroidism symptoms are definitely starts as I have been getting chills, freezing even when my thermostat is at 24 degrees, not having the energy to talk to people even though I did not want to stay home on a Friday night. In theory, according to my endocrinologist, after an acute hyperthyroidism again, there will be not enough thyroid hormones stores in the thyroid gland, and therefore levels will fall. After sometime function should restore to normal, but hypothyroid state could last 8 months. I will be waiting for this normalization and in the meantime I will keep trying to reduce inflammation, because what else is there left to do.

Recently I came across a paper on green tea and exercise intervention for arthritis patients. “One-hundred and twenty subjects who had a mean age of (60.7 ± 2.53 years) and had been diagnosed with rheumatoid arthritis at least ten years previously were randomly included in this study. Patients were treated with infliximab, green tea, or a supervised exercise program for six months. Disease activity markers as well as antioxidant activity of green tea extracts were estimated before supplementation using in vitro assays. [Results] Rheumatoid arthritis patients treated with green tea for 6 months alone or in combination with infliximab or an exercise program showed significant improvement in disease activity parameters, including C-reactive protein, and erythrocyte sedimentation rate, swollen and tender joints counts, and modified Stanford Health Assessment Questionnaire score, along with an increase in serum levels of bone resorption markers, i.e., deoxypyridinoline, amino-terminal telopeptide of type 1 collagen, and bone alkaline phosphatase, at 6 months of after initial treatment. The European League Against Rheumatism and American College of Rheumatology scores revealed more clinical improvement in the disease activity of rheumatoid arthritis patients treated with green tea along with exercise compared with rheumatoid arthritis patients treated with infliximab or exercise combinations.”

Green tea and exercise interventions as nondrug remedies in geriatric patients with rheumatoid arthritis

I know this is just one study and we should take the results with a grain of salt, but I see no harm in including green tea and exercise in your day. I want to note that I am not looking for only ‘natural’ treatments neither am I trying to prove that they are better. I am only looking for something that I can implement. When I was referred for IV corticosteroids treatment, I was happy to receive it and did see improvements. Since then I have not been prescribed any treatment even though I did ask for it. It’s possible that something like infliximab would work for me, but I have no access to it. I have Hashimoto’s thyroiditis, celiac disease, and autoimmune encephalopathy, but inflixiamab is a medication that is prescribed for rheumatoid arthritis.

Infliximab is a monoclonal antibody that suppresses some parts of the immune system. Infliximab is a lab made molecule that binds to a specific cytokine TNF-α (chemical messenger), which is one of the causes of autoimmune reaction. TNF-α is tumor necrosis factor aplha, a cell signaling protein involved in system inflammation. Wiki states that Dysregulation of TNF production has been implicated in a variety of human diseases including Alzheimer’s disease, cancer, major depression, psoriasis and inflammatory bowel disease (IBD). Though controversial, studies of depression and IBD are currently being linked to TNF levels.

Infliximab has to be given as IV and cannot be taken orally as it would be destroyed by the digestive system. In the US the cost is about $19,000 per month and is mainly prescribed to arthritis patients who have not responded to other therapy. No one is going to prescribe it to me here in Canada.

Therefore, given that I have not been prescribed any meds at this point, and my psych and neuro keep debating whether to place me on IVIG or not, for now I have to do things on my own. Also trying green tea and exercise of course doesn’t cancel out any other treatment that I might get. I continue with helminthic therapy and hopefully I will get an IVIG trial (intravenous immunoglobulin therapy).

CAMH ER Waiting Room

The room is in the building at College and Spadina. The room doesn’t have any windows, but it does have a clock, so you can know what time of day it is. What you can’t know is when you will be let out (but to be fair, involuntarily hospitalization can be a maximum of 72 hours). There are armchairs along the perimeter of the area and in the middle. There are about six of us at the moment. Some will be released soon and new ones will arrive. None of us want to be waiting here, twisting on the pale green chairs. Also most don’t agree that they should be here. A young black woman is banging on the locked door of the staff room, a nurse comes out. The woman is nearly dressed with a designer purse and fur boots. She starts pacing back and forth. “If I knew what this place is like, – she yells at the nurse, – I would have never come here. Look at me, I don’t need to be here. I don’t cut myself and shit.” The nurse talks to her calmly, she tells her what she tells everyone – you have to wait to speak with the psychiatrist. The woman continues to yell that she is not like the rest of us. She complained to her family doctor about stress at work and the doctor referred her to this address, told her that she could get a note for stress leave. She just wants a note, she assures that she doesn’t cut herself.

As of that is what we all do. If only it was that simple – you either cut yourself and are insane, or you don’t, and are not. I’ve never cut myself and yet I voluntarily checked myself into the CAMH ER. I also didn’t think that I needed to be in there, but there was no other way. I wanted to be set free from my inflamed brain, from the malfunctioning neuronal synapses. I wanted to be free to get lost in writings of other people’s ideas, to play Bach’s Gavotte, to be attracted and be attractive. I wanted to be released from the dark well inside my own mind. I wanted to suppress the hell, to get the intravenous immunoglobulin treatment. But how to convince them, how to make them understand that is what I needed?

After sometime the black woman was released. I was still waiting. There was renewed yelling, coming from a different patient. Similar to the woman who just left, she was yelling at the nurse that she didn’t need to be here. She was also getting extremely agitated, I think if she had something to throw, she would. The whole room now was aware that she was old enough to have ten children and that she didn’t want this visit on her record. Her sister couldn’t take care of her own kids and who would then be doing it if not her? But with a CAMH visit on the papers, maybe she wouldn’t be allowed to take the children in. The nurse tried to explain that visiting CAMH was not same as police record, but the woman already went into rage, reasoning does not work at that point.

So why do we all scream in fear – I shouldn’t be here, I am not like the rest of them? We must have evolved to have this fear of being declared insane. Insane means being banned from the tribe, starving alone in the savannah. It’s hard to let go of that basic fear of being abandoned by our tribe. Even in the isolated room at CAMH, where only the doctors and about five other strangers could hear you, we still don’t want to admit that something could be wrong. We could admit cancer, meningitis, infertility, but not that we are not mentally well. Most diseases are just affecting our body, but it is our mind that makes us who we are. And if there is something wrong with that, then what are we? Of course this is not what I think, this is an assumption of what goes on through people’s minds in this state of fear. There is no separation from mind and body, both are a combination of cells, proteins, amino acids. Signalling to each other, reproducing. And any part of the whole mechanism can malfunction.

I would say – learn to accept. You didn’t choose this body, you just sort of woke up in it. I would have chosen another model, if I could, but no choices were given. Well here I am, at CAMH ER, because some signals are malfunctioning, and it’s not my fault. This is the situation though, and I have to accept.

Tracking Anti-TPO and Anti-Tg antibodies

I have been tracking my thyroid antibody levels and I want to share my results, in case this information will be of use to someone. I have been diagnosed with Hashimoto’s encephalopathy in April 2017 and I was treated with intra-venous steroids (IV Solu-Medrol) in December 2017. In November 2017, before the steroids treatment, my thyroid hormone levels were normal, but my Anti-Tg and Anti-TPO antibodies were elevated. I was experiencing many symptoms such as fear, a sense of dread, severe anxiety, feeling of worthlessness. After the immunosuppressant treatment with steroids I had improvements in different areas of being, such as a desire to read fiction again, new interest in men, increased self-confidence, desire to play violin again. As you can see from the table below, my antibody levels decreased after the treatment, in May 2018 they were lower than in November 2017.

test_jan2019

I was improving in 2018 – I started this blog, took a violin lesson, read sci-fi. In the fall I completed mandatory adoption training and started the homestudy process with a social worker for adoption of children. This is something that I want to do because I wanted to have a family for a while, but I don’t feel that passing on my genes is the right way, as likely my children would inherit the same autoimmune disorders.

In November 2018 I started feeling worse. It’s difficult to pinpoint a specific cause of this as there were several events. I have been gluten-free now since 2016. Unfortunately one day in November I ate a whole bowl of lentil soup with barley because the take-out place stated that the soup only contains lentils and rice. Such large amount of gluten after not eating it at all for several years could have caused an immune reaction. I also got the flu twice, and the flu can also lead to the immune system being overactive even after the virus is gone. I also decided to try different probiotic supplements which had supporting evidence in regards to positive results for mood improvement. Maybe it did not go well for me and these bacterial strains were not accepted by my immune system.

In end of November I started to frequently wake up around 5am covered in sweat. At work my palms were sweating and I was getting chills. My pulse was regularly over 90 and my temperature was around 37.3 Celcius even though I did not have a flu nor a cold. My neck and face were burning, I felt waves of heat and shivers going through my body. After work by 6 pm I was lethargic and couldn’t get myself to exercise as I was in the fall. It was very clear to me that my thyroid hormones should be tested, so I right away went to the lab. December results show that at that point my TSH was already very low because my thyroid hormones were too high. Thyroid antibodies are also elevated. Ultrasound confirmed inflammation of the thyroid. I was referred to Women’s College Hospital and they repeated blood tests again. It can be seen that December 19th results indicate even higher thyroid hormone levels.

At the moment when all this occurred, I had a regular schedule – sleeping 12am to 8am, working 9 to 5, was doing yoga before I became lethargic. I was not on any medications but I was taking several probiotic supplements – saccharomyces boulardii, and two probiotics for mood. I decided to stop all supplements and also came across an article about anti-Saccharomyces cerevisiae antibodies. I did not have testing for these antibodies, but I decided to try going yeast-free and see whether symptoms improve. I stopped drinking my kefir and eating my sourdough bread. Also avoiding alcohol and vinegar. It’s interesting to see that in January my thyroid hormones were at their normal levels. It’s hard to say whether there was an issue with the supplements that I was taking, or yeast in food, or a random event of thyroid inflammation. I will be testing again at the end of January. There is not much evidence that yeast consumption could cause an autoimmune flare, but I will still keep going yeast free for sometime to see whether there will be improvements.

Anti-Saccharomyces cerevisiae antibodies (ASCA) are associated with body fat mass and systemic inflammation, but not with dietary yeast consumption: a cross-sectional study

“The findings indicate that ASCA IgG-positivity may be linked to the generalized inflammation commonly seen with increased adiposity, but not to dietary yeast intake. Other potential causes for the raised ASCA IgG concentrations, such as genetic predisposition, deviations in the gut microbiota and cross-reactivity of ASCA with other antigens, were not explored.”

Autoimmune Encephalitis and Genes

I was involuntarily hospitalized for the first time in the psych ward in October 2015, in June 2016 I was diagnosed with Hashimoto’s thyroiditis, and then in April 2017 I was diagnosed with autoimmune encephalitis (specifically Hashimoto’s encephalitis). I was diagnosed also with coeliac disease, which is a permanent autoimmune disorder. That is a lot of diagnoses, all autoimmune related, and they all came in a short period of time (it’s not surprising though, because often people with an autoimmune disease tend to have more than one – this fact points to the genetic cause of a faulty immune system).

Since then I have done a lot of research on my condition, but in 2015/2016 I was probably still in denial. I remember being certain that my depression was due to only external circumstances such as my job, not having kids, small apartment, etc. I kept thinking – I know it’s the bachelor apartment that is making me feel claustrophobic and trapped, I have never lived in such a small space, this is not how people should live, this is causing my depressive state. I was living in a small bachelor apartment together with my boyfriend and it was not enough space for two people, you start to irritate each other, and that could have been contributing to stress. But I also know that I was not accepting that something was also biologically wrong with me, that I needed to investigate medical causes. At that point I was already seeing a correlation between eating wheat and brain fog, but then I would go again to buy a chicken wrap and when my thoughts would become less clear, I still kept repeating – it cannot be the wrap, this seems very unlikely, it must be something else – probably I am allergic to mold in the apartment. It’s also very difficult to analyze the situation when your brain is getting worse daily and you don’t realize it.

The correlation between eating wheat and brain fog, based on my observations, was very strong though, and I did finally start eating gluten-free. Then I received my test results for antibodies associated with coeliac disease and the values were right at the threshold. To me this was a clear indication of disease, since even though I had been not eating gluten for a while, the antibodies were still present and the value was right at the point of making a positive diagnosis.

What also helped me understand and accept why I was hit with a number of autoimmune disorders. Several years ago I sent my saliva to 23andme and got back results telling me that I was mostly Eastern European (obvious to me) and Balkan (was a surprise). Also that I had increased risk of developing age-related macular degeneration. I thought this was irrelevant to my symptoms and I did not open 23andme again for a while. I logged in a few months ago and the website had been updated, there was a new result – Celiac Disease.

23andme_1

From 23andme – the variant tested is a change from a C to a T in the DNA sequence of the HLA-DQA1 gene. The rs2187668 marker is a tag SNP for the HLA-DQ2.5 haplotype.

From Wiki: DQ2.5 and the linked DR3 are associated with probably the greatest frequency of autoimmune occurrence relative to any other haplotypes. The haplotype is positively associated with coeliac disease, dermatitis herpetiformis, juvenile diabetes, Lambert-Eaton myasthenic syndrome (LEMS), Sjögren’s syndrome, and autoimmune hepatitis (although significant proportion of the risk is secondary to coeliac disease). DR3 and/or DQ2.5 are linked to the following diseases: Moreen’s ulceration, “bout onset” multiple sclerosis, Grave’s disease and systemic lupus erythematosus.

I can’t say that I felt great when I read this, but I was able to say to myself – “now I understand”. I was not unlucky to have an onset of autoimmune encephalitis, a very rare disease, I am unlucky to carry this genetic mutation, but given this mutation, coeliac disease and encephalitis are not so unlikely. How to use this information? I printed out my test results and handed them to my family doctor and my neuropsychiatrist. There is a difference between a one in a lifetime occurrence of brain inflammation after some virus and being genetically predisposed to multiple autoimmune diseases. Unfortunately it is the second case for me and I want to make sure that doctors are aware of this.

Another genetic mutation listed in my 23andme results is Gene: CFH. The variant tested is a change from a T to a C in the DNA sequence of the CFH gene. It results in a version of the complement factor H protein that may not be able to regulate the immune system as well. I have read about this mutation and did not find that much information, but it does mention that it also affects immune system regulation. Perhaps it is the combination of the two mutations – in the HLA and CFH genes that for me lead to development of several autoimmune diseases. Research and time will tell us more.