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.