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May 2, 2011

Hashimotos: Life as a Zombie

Two attempted suicides. One arrest for uttering threats of suicide. A week long sabbatical at the St. Micheal's Hospital Psychiatric Ward. One discarded prescription for Prozac. Eight years of crippling anxiety attacks. One clinical diagnosis of bipolar disorder. 4, 380 hours of sleep per year. 8, 760 hours of immobilizing exhaustion. Unknown hours of missed work. Unknown number of memories unremembered. Unknown number of words, definitions and spellings, lost and forgotten. Unknown number of social functions unattended. Two failed relationships. Several failed friendships. Over 80 hours of Emergency room wait time per year. Unknown number of UTI's, kidney infection's and anaphylactic episodes. Unknown number of hours spent on the toilet. 300 dollars of antibiotics per year. Thousands of dollars of acupuncture, colonic treatments, vitamins and acne skin treatments. An unexaggerated million needle pricks. 20 gallons of blood drawn. One ultrasound. Unknown number of hours of absolute misery.

This was my life. Most days this continues to be my life, however, now I can say with absolute confidence that I am NOT crazy, I am NOT lazy, I am NOT complacent, I DO NOT have a mood disorder, I am NOT bipolar, I am NOT antisocial and I am NOT clinically depressed. I AM, however, one of the millions of people suffering from an autoimmune disease called Hashimoto's Thyroiditis. Quite simply, my body is attacking itself, in specifically it is attacking and causing gradual destruction to my thyroid gland. The disease has such an expansive range of consequences on the mind and body it often gets camouflaged as many other physical and mental disorders. More than half of the people suffering from Hashimoto's are either undiagnosed or misdiagnosed. My diagnosis took 8 years. I saw countless psychiatrists and MD's. When hypothyroidism was suspected I was refused a referral to an Endocrinologist by two different doctors. I was prescribed countless medications and vitamins to treat constipation, depression, anxiety, memory loss, iron deficiencies, fatigue and sleep deprivation. I have developed alcoholic habits to subdue my symptoms. I have withdrawn from my friends, from my loves and my life. The disease has robbed me of time, memories, happiness and simple pleasures. It has taken my spirit and left an empty shell.

Perhaps the most difficult and challenging component to the disease is trying to convince the rest of the world it exists. Unless you are a fellow sufferer, Hashimotos is impossible to understand and very difficult to clarify.

For the most part my physical symptoms are undetectable to the public. For whatever reason I have been unaffected by one of the major physical symptoms of Hashimoto's; weight gain. However, Hashimoto's affects each sufferer individually. Physically I am afflicted by bowel issues, menstrual issues, extreme sensitivity to cold followed by hot flashes, frequent illness including kidney infections and throat infections, hoarse voice, numbness and tingling in fingers, difficulty swallowing, enlarged thyroid, low body temperature, coarse skin, acne, dry hair, brittle nails, muscle cramps, heart pain and extreme EXTREME fatigue. I can often sleep 12 hours or more and will wake feeling completely ragged. Some days I lack enough energy to bath myself, dress myself or even feed myself. However and having said that, I'd much rather contend with the aforementioned than the malady of my mind.

One of the affects of Hashimoto's is parallel to that of aging. As you age, memory, concentration and the ability to process new information becomes challenging. Hashimoto's has made my mind forget. My long term and short term memory sometimes operates as poorly as an elderly with dementia. If I am asked to perform a task at work, 9 times out of 10, within seconds and steps on route to execute the task, I will forget what I was meant to be doing. I have forgotten the names of close friends and relatives. I have massive trenches of blankness when trying to recollect my past memories. Due to these bouts of forgetfulness I have disappointed and frustrated many friends, employers, co-workers, partners etc. I have been perceived as inconsiderate, uncaring and irresponsible. I have also shown symptoms of slowing cognitive processing. My mind frequently wanders without any clarity. I am unable to vocalize entire thoughts in an articulate and fluid fashion. I get stumped on words in mid sentence. I have forgotten meanings and spellings of words. Often it is difficult for me to understand or retain new information. I often feel dense and unintelligent. I also suffer from periods of extreme sadness and depression. I often withdraw from social activities, I am deficient of passion and enthusiasm. It is often impossible to get happy, regardless of the pleasures in my life. I avoid friendships and most conversations. Unfortunately I don't have a blinking light on my forehead signally 'Hashimotos' and many of these symptoms can be easily judge as character inadequacies. Some may believe and judge me to be haughty, snobbish and/or peculiar. Some that have encountered me in certain moments may think I am slow or dimwitted. Others may find me moody and irritable.

As an artist and vocalist I can't imagine a more terrible set of circumstances. Hashimoto's has stunted my creativity. It has made me indifferent as a performer. It has affected the quality and control of my voice. It has agitated my focus and moods in rehearsals and creative sessions. My once fiery passion for music, imagination, creativity and originality has been smothered and snuffed out. HOWEVER, there is a small piece of the old me left within, kicking and screaming, and she intends to fight hard to kick this thing in the ASS. As part of that campaign I felt it was very important for me to ventilate my feelings and thoughts regarding my condition to the public and to fans. This is partially an exercise to help me articulate and organize my own thoughts about Hashimotos, however, I also want to reach out not only to fellow sufferers but also to those who may be undiagnosed. If any of the aforementioned symptoms sound familiar, I strongly encourage you to request that your doctor do a blood panel of your TSH levels, as well as your Antithyroid antibodies. PLEASE. Untreated Hashimoto's can cause heart attack, coma, dementia, Alzheimer's, clinical depression and a number of associated autoimmune disorders.

Restoring thyroid function by taking thyroid replacement does not necessarily make symptoms go away. In fact more times than not, Hashimoto's sufferers continue to experience symptoms after medication is prescribed. Hashimoto's is incurable and little is known about the rhymes and reasons of the disease. The disease can park you in a repetitive cycle of depression and fatigue which strongly prevents you from taking the necessary steps to help yourself and relieve your symptoms. However and though at times it feels like a life sentence, I genuinely believe that with a little push from within, the cycle can be broken and sound body/mind CAN be revived. I believe that by experimenting with proper diet, nutrition, supplements, practicing relaxation techniques and regular exercise in COLLABORATION with regular blood panels and dosage adjustments, my symptoms can be relieved. I am desperately hopeful. I am currently seeking many avenues of help from my MD, my Naturopath, my Endocrinologist, my Acupuncturist, as well as educating myself by speaking to fellow sufferers and studying applicable literature. I intend to track my progress and keep you posted on my findings. Though I realize what works for me may not work for others, however, perhaps it may and it's worth sharing. I hope that by imparting my experiences, trials, failures and successes in achieving physical and mental restoration from Hashimoto's I will help not only myself but many others who suffer worthlessly and worst, silently without compassion.

I PROMISE I will get back to this subject in later blogs. In the mean time, if you are a Hashimoto's sufferer or believe you MAY be, please reach out to me. Sometimes a little comfort from an understanding supporter is enough to push our minds forward even when our bodies would rather wilt into the dirt.

19 comments:

Claudia said...

This is the first time I have ever used a bovine thyroid but it is fantastic and I won't go back to the other one. I was using products that required anywhere from 4 to 8 pills a day and they made me dizzy most of the time.

Lisa said...

Thank you for this post! I greatly appreciate your honesty and transparency!

I was dx'd 4 years ago (Hashimoto's and Adrenal Weakness), just before my 40th birthday.

I hate how awful I feel sometimes, when I appear to be a very health person otherwise.

It helps to know I'm not alone.

Blessings for your Journey!

Namaste'

Paizley said...

OMG...this sounds like my life the past 5 years! All of it and more. The misdiagnosis of Bipolar!...Anxiety...even PTSD! I probably do now have PTSD after suffering at the hands of inept doctors. I keep thinking of the sessions at the Psychs office...sitting there in so much physical pain, dizziness, numbness, sick beyond words...feeling like I should be dead, the doc looking at me from across the room in his chair, me actually buying it...spewing his psycho babble and all the while my Thyroid Gland was under assault which as you said leads to many other bodily malfunctions!! I had to quit my job, lost my friends, my house and my life as I knew it. I was just diagnosed this past May 2011. Five years too late to save my life and well being. I still feel horrible. I am sooo angry that out of all the docs I saw not one thought to check for Antibodies. As my TSH was always within range.

I thank you for such a well written description of this horrible disease. It gets no attention even though it's so devastating. I think of all the undiagnosed people out there and feel for them. Most are told its fibromyalgia and depression and dismissed. Oh geez...I could go on and on forever I'm so angry and let down by the medical community.

I wish you a speedy return to normal!

cocoalatte said...
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Hashimoto's Warrior said...

I loved how you so succinctly described what a person can experience with Hashimoto's. It can be hell for sure. I've been dealing with a diagnosis of anxiety/depression for over TWENTY years!! It wasn't until much later when I started having more symptoms that I was diagnosed with a malfunctioning thyroid. I too have lost friends, gone through failed relationships, lost my home and job due to this relentless illness and it saddens me that doctors are so inept when it comes to dealing with this autoimmune disorder. There are some really good support groups on Facebook that offer excellent suggestions, two of them being Hashimoto's 411 and Stop the Thyroid Madness...check them out, good luck, and we're all warriors.

Hashimoto's Warrior said...
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Dolly Jackson said...

I strongly believe that hypothyroidism can be neglected but it is easy to treat with iodine supplements thyroid . Strongly recommended.

Never look back said...

The story of my entire life. Ignored by endocrinology in 1991. Resulting osteoporosis and broken hip during pregnancy then thyroid cancer. Thanks for sharing and putting it all together in such perfect chaos. It's good to know after so many years ALONE that we truly are not alone.

hashizombi said...

I cried after reading your post. I have never known anyone else going through life with this disease. It really is like being a zombie sometimes. My husband at first didn't understand, said I should was just lazy. My coworkers joke that I should share "it"with them when I m having an episode of memory loss or mania. The joke being that "it" is some form of mind altering drug. Someday I will probably lose my job due to Hashimotos Disease. But for now I fight, and am blessed to have found your post, red light runner. Thank you, it lifts my spirit to know there are others like me.

Helen Norton said...

This was an incredibly helpful and honest account of what it really feels like to have Hashi. I am a professional artist, and went undiagnosed for 8 years. I thought I was going mad. I am sad to say that unless you push and push the doctors, they do not test for Antibodies, and I am quite clear that this is what happened to my mother (given Hashi is often hereditary), and now she has Alzheimers, going from an amazing woman to a shell. I am almost sick to the stomach of now ordering the tests to see if antibodies are present in her blood. If so - I just dont know how I will deal with my rage re doctors and ignorance. Anyway, the point of my post is to warn against a post here about taking IODINE. If you have Hashimotos, do NOT take IODINE, without great caution. In Stop the Thyroid Madness there is a whole section devoted to this. My doc put me on this, and it was like pouring petrol on the fire. Iodine is OK for normal thyroid deciciencies but with Hashi, its often A HUGE NO!! So be warned. I had the worst attack I had ever had and become very very ill. Much research has been done on it. So be warned.
So - iodine is OK for low thyroid but NOT for autoimmune disease Hashimotos.
Thanks so much again to you for helping me as a 51 year old artist to really feel like we who rely on our clarity of mind to do our work, have to hold hands now and again.
Best Wishes always
Helen

Ashlie Dalton said...

I just ran across this blog. I was diagnosed with hashimotos disease three months ago and after being tested for food intollerances I am only able to eat vegetables, chicken, fish, small amounts of beef and fruit, some nuts and beans. That's it. I'm working with a team of endocrinologists and they are confused because I'm not responding to their treatment like their other patients. I am extremely extremely anemic and feel like garbage most days. I can't even pin point or adequately describe where the discomfort is but I wake up everyday feeling like I have been hit by a semi truck. I am on thyroid medication (3 yrs now), and on a very strict diet but not seeing results I would like. Also taking tons of supplements and using therapeutic oils. What else can I do? I'm only 28 and have two little boys. I'm honestly scared I'm going to die soon... I'm too young to feel this terrible and don't know what else I can possibly do. I wish there was a forum or something where we could get a group of us to support one another and share tips. It's frustrating that medical professionals know next to nothing about this disease.

OMandygreatlybeloved said...

Hashimotos zombie is what I am too. I have had such an terrifying road to this diagnosis. I not only have been diagnosed with Hashimoto's auto immune disease but Meniere's ear auto immune disease as well. Unfortunately, my sleepless nights,panic attacks so bad I would faint and extreme suicidal depression were diagnosed by a young MD to be depression and so she put me on Lexapro and sleeping pills. I went from bad to worse and turned into a monster. Even though she checked my thyroid levels. I then went back to her after a year and 25lbs heavier and went through a ton of bloodwork to the point that I thought I was feeding vampires hiding in the clinic. I don't have good insurance...high deductible. So this doctor had me go through vaginal ultrasound to find out why I was so anemic. That cost over $1,000 and then not to mention the $7,000 + bill from the MRI Xtay where they shot me up with iodine to find out why one of my kidney's was larger than the other. She finally referred me to a no personality endo MD. So after this male doctor told me I had Hashimoto's and gave me a prescription for Levythoroxine, most of my hair thinned out 50% and I smelled so horrible. I then switched to a naturopath doctor and she has helped switch me to a natural Thyroid Medication called Armour. I finally have lost some weight on this although I did have hair loss too. she put me on other supplements for Adrenal fatigue and explained that it wasn't my thyroid but my Adrenal glands were exhausted making my immune system go haywire and attack my Thyroid. I sit here typing with ringing in my ears and my thyroid aching. I found putting on Past Tense essential oil by Doterra helps soothe my thyroid when it aches. I rub in on my neck. I also have had bouts of guilt out of nowhere. I start thinking of my past mistakes and it is so overwhelming that it makes me cry. Must be anxiety. I also have been so confused with what in the world I'm supposed to eat. I've heard cut gluten, cut dairy, cut grain, cut eggs. cut sugar. So now I see food as not fun anymore but just like gas goes in the car..boring. I also don't feel like socializing either. I won't mention my person life because stress is through the roof with all my kids and toxic marriage. Some days I don't want to get out of bed but I have to. I am thankful to have found the answer to why I have been feeling like this for so many years. But I don't feel very encouraged by family and nobody seems to understand my health challenges. Reading your blog has helped me. Thanks.

Bobbie Barker said...

My name is Bobbie and I was diagnosed with hashimotos in 2003. my latest complication is ananphylaxsis for no reason. I get up every day and try to move forward and keep control of my life. I was first told that it was just underactive thyroid that produces antibodies against the thyroid gland. I had no idea what I was in for. now 10 years later and I fight the battle of this disease every day and it is tiring. thanks for your post.

tudric said...

At first when my GP told me that I had Hashimoto's I was relieved - finally a diagnosis and treatment.
But no, my GP told me that we just have to wait until my TSH levels show that it is time to treat me. This was nearly two years ago.
After developing a lump on my neck recently, I was referred to the Endocrinology Dpt at the local hospital. My lump was viewed by ultrasound and found to be consistent with Thyroiditis.
Treatment? No, the young Endocrinologist said she would like me to have some more tests as she wasn't sure it was Hashimotos. Even though, my Anti-TPO was 87.8 and Anti-Tg was 828.5 both high. I was told to come back in two months time!!!
In the meantime, I am feeling rotten, but still not sure why?
I am so grateful to you for putting up this blog and allowing me to have this little moan to you all. I don't tell anyone else, even those really close to me how uncomfortable I feel or how tired. How can I expect anyone else to understand until I have a diagnosis. I now know of course that if I do have Hashimoto's it is an ongoing battle.

Darryl Judd said...
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Bridget Lyons said...

I too am a Hashimoto's zombie. I'm riddled with guilt on a daily basis as I stumble out of bed to be the mother my children deserve. I feel the constant judgement of those who have no idea how difficult this is. I hope someone, somewhere has an answer to stop the excessive symptoms that continue even when treated successfully with synthroid. I'm tired of being tired. I feel like I'm losing my mind as my family can only laugh at my memory lapses. I'm 39, how much worse is this going to get?

Dream Catcher said...
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Dream Catcher said...

I'm wondering if im bipolar or it is hashimotos which is diagnosed. I messed up my career, made no real friends, have cut off people around me, have poor memory and cannot remember my passwords daily, i feel lazy tired suicidal every day. Lazy to even write this. I don't feel like doing anything and haven't opened my post since 2010 and in huge debts and financial mess due to avoidance and anxiety. Nhs has stopped prescribing me t3 a year ago and since then im going downhill day by day. I finally devided I can't take this pains, aches, water retention, heart racing, fog in my head anymore. I am getting hold of nembutal barbiturate and taking my life this year after i have sorted some of my financial mess as I don't want my uncaring family to handle anything to do with me. Not even my dead body. I have totally messed my life wasting on inconsiderate narscisists and living in hope to one day find true love and live happily ever after. After all it doesn't look like there are any hopes left now. Im too old and single have no real friends and often experience bullying at work. I take responsibility for this though although it is unprovoked. I left many jobs as i created a bad impression due to punctuality caused by my disease. I don't understand time and don't quite understand why i was born and no reason to burden earth anymore with my weight.

I am happy I didn't bring any children as i want to end my connection with earth forever.i am considered attractive with reasonable shape, intellect and social and professional skills but i am deceiving everyone around looking pretty and smart whilst inside i just want to end it.

Hope i can take a lethal dose of nembutal my only wish left.

Hashihelper said...

Please check out Adrenal Ven and Adaptogen from Premiere Labs. Also take Nucleo Immune and Glutothione. In Addition, take some vitamin D in liquid form from Apex Energetics and some probiotics called Liver ND which is a liquid form. These steps will calm Hashimotos. Good luck to you!