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Hashimoto's Disease: My Life As a Zombie

I've lived with Hashimoto's for many years. I hope that sharing my experiences might help others in similar situations feel less alone.

hashimotos-life-as-a-zombie

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

This article is a peek into my experience living with Hashimoto’s.

Life With Hashimoto's

Two attempted suicides. One arrest for uttering threats of suicide. A week-long sabbatical at the St. Michael's Hospital Psychiatric Ward. 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. An unknown number of forgotten memories. An unknown number of social functions unattended. Several failed friendships and relationships.

Over 80 hours of emergency room wait time per year. An unknown number of UTIs, kidney infections, and anaphylactic episodes. An unknown number of hours spent on the toilet. $300 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. An unknown number of hours of absolute misery.

Who I Am—and What I Am Not

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 do not have a mood disorder
  • I am not bipolar
  • I am not antisocial
  • I am not clinically depressed

I am, however, one of the millions of people suffering from an autoimmune disease called Hashimoto's thyroiditis.

How Can I Make People Understand My Hashimoto's?

Quite simply, my body is attacking itself. Specifically, my immune system is creating antibodies that are damaging my thyroid, preventing the gland from properly releasing the hormones my body needs for healthy functioning.

In Search of an Accurate Diagnosis

The disease has such an expansive range of consequences on the mind and body that 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 eight years. I saw countless psychiatrists and doctors. 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 from my life. The disease has robbed me of time, memories, happiness, and simple pleasures. It has taken my spirit and left an empty shell.

How the Disease Affects My Body

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. This is because Hashimoto's affects each sufferer differently.

That does not mean, however, that I have not endured a long list of other debilitating symptoms:

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Common Hashimoto’s Symptoms of the Body

extreme fatigue

difficulty swallowing

lack of energy

enlarged thyroid

hoarse voice

frequent illness (including kidney and throat infections)

bowel issues

acne

extreme sensitivity to cold (followed by hot flashes)

menstrual issues

coarse skin

numbness and tingling in the fingers

heart pain

dry hair

low body temperature

muscle cramps

brittle nails

I've experienced all of the above bodily symptoms, often several at the same time. They can be terribly draining.

I can often sleep 12 hours or more and wake up feeling completely ragged. Some days, I lack the energy to bathe myself, dress myself, or even feed myself.

Having said that, however, I'd much rather contend with the aforementioned than with the malady of my mind.

Memory Loss, Slowed-Down Cognitive Processing, and Depression

One of the effects of Hashimoto's is parallel to that of aging. The disease has made both my long- and short-term memory unreliable. It becomes difficult to remember, concentrate on, and process new information.

If I am asked to perform a task at work, nine times out of 10, within seconds and steps en 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 slowed-down 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 mid-sentence. I have forgotten the meanings and spellings of words. It can be difficult for me to understand or retain new information. I frequently feel dense and unintelligent.

I also suffer from periods of extreme sadness and depression. I withdraw from social activities. I lack 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 indicating "Hashimoto's." Many of these symptoms can be easily judged as character inadequacies by someone ignorant of my condition. 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.

Not all of the effects of Hashimoto's are relegated to just the body. Other symptoms include short- and long-term memory loss, impaired cognitive functioning, depression, lack of passion, and stunted creativity.

Not all of the effects of Hashimoto's are relegated to just the body. Other symptoms include short- and long-term memory loss, impaired cognitive functioning, depression, lack of passion, and stunted creativity.

The Inner Fight

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.

But 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 vent my feelings and thoughts regarding my condition to the public and fans. This is partially an exercise to help me articulate and organize my own thoughts about Hashimoto's. I also want to reach out not only to fellow sufferers but also to those who may be undiagnosed.

What Are the Treatments for Thyroid Disorders?

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.

Can Medication Restore Proper Thyroid Function?

Unfortunately, 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.

Is the Disease Curable?

Hashimoto's is incurable, and little is known about the rhymes and reasons for the disease. The disease can park you in a repetitive cycle of depression and fatigue, preventing you from taking the necessary steps to help yourself and relieve your symptoms.

Can Diet and Nutrition Improve the Condition?

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 and mind can be revived. I believe that by experimenting with proper diet and nutrition, taking the right supplements, practicing relaxation techniques, and getting regular exercise—in collaboration with regular blood panels and dosage adjustments—my symptoms can be relieved. I am desperately hopeful.

Does Alternative Medicine Work?

I am currently seeking many avenues of help from my doctor, my naturopath, my endocrinologist, and 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, perhaps it might. Either way, 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 also many others who suffer needlessly, particularly those who suffer in the worst way: silently and without compassion from others or themselves.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

Rudra Ashis Mishra on July 12, 2020:

Good work

Helen Manongyao from Philippines on February 11, 2020:

My younger brother also has an autoimmune disease called Lupus and I can truly understand your situation. I've seen my brother's struggle including how my parents suffer especially when we were told that his illness is irreversible. I feel sad for your situation but always enjoy life as much as you can and while you still can. My brother cannot do that anymore because his muscles gave up already and he can no longer walk. Please enjoy life while you can.

Marina on December 11, 2019:

It is super scary and i feel very missunderstood i dont know how to explain the symptoms or whats wromg. I feel alone and like no one. Understans and it makea life hard to live. On top of it all hoshimotoes is so rare and not alot of litature and education is out there about it. I am wanting to know was any1 diagnosed with it it as a preteens and did anyone ever get undiagnosed like i did or "outgrew" it. Also is it possible my body hid it and was just in a state of remishion or?? Also no doc will put me on an anti seizure med even tho i really need sumthing. Is there any medications yall have found helpful with the symotoms. I really dont know what to do because all my labs and test allways come back normal they are only ever off if ur lucky enuff to xatch it when its bad. But is hoshimotoes encephalopathy differebt from a thyroid dissorder and is it epilepsy ? Like if i have HE does that mean the seizures are most likely from that? I just need help from someone who knows the ins and outs and i just want to feel better!! I currently am on no meds for any of that. I was on kepra b4 for it and a bunch of others i do not recall its been years since i was last treated for it.. Im a special patient i am rare, so its hard to find doctors or specialist that understand. I also have multiple health problems at play.. Also why do they have to wait to take my thyroid out. Cabt they just cut it out and give me the pills i wuld take for it. Im so over all of this and all the problems and just forgetting my life....

Marinaa on December 11, 2019:

Hey guys, i was finally diagnosed with HE after a month of aweful symptoms and no one was able to figure out what was wrong untill a month or so later the mystery was solved. I was a happy kid growin up in my kid years and was well behaved, had lots of friends, happy and healthy loving life. Untill one day for no reason i let out a scream and fell and had a big grandmal seizure. I was in 7th grade. I dont remember it, but i do remember that morning eating cereal then nothing. Next thing you know i slightly remember being carried by an emt guy and he said it was gonna be okay. Its very foggy. I woke up i guess you could say a few weeks later, i was having hundreds of seizures a day. They flew me downstate in Michigan because DR were at a loss. I dont remember much of the few months i was hospitalized. I guess also my brain or sumthing was swelling and i wasnt in a coma but i didnt have amneshia (however its spelt) but i litrally was awake and talking and my memory and who i thought i was and everything was so off. I didnt know my family or understand what was going on and i am like 12 years old in the hospital yelling at everyone saying i had 2 kids and all i wanted was my kids and it was some crazy stuff. Man it was so hard on me but also my parents. When i actually remember waking up in my own head i was downstate 4 hours from home and it was 2 month later then the last day i remember living. I remember waking up being so terrified after every1 explained what happen. I was in a lot of pain and they told me i had been thru so many test and even a spinal tap, which they didnt treat right and i ended up not being able to stand or sit up str8 or str8n my back. I was so scared and just wanted to go home. I assured everyone i was fine and feeling great and just wanted to go home. So on my word and everything they discharged me and i remember i was honestly feeling terrible and we had to go into a shop to get sumthing and i remember hearing noises and seeing virds up by the ceiling of the store and i say, "oh look mom at the birds" and there was nothing there at all so my mom who is a RN she knew right then and there that i was not okay and stuff was still wrong. After getting home and having no energy, tingly hands and feet, and all the other miserable symptoms i went back to the hospital and they had me addmitted in a room for almost 3 weeks, i was on high high dose steroids and whatever else they did and medication and test they gave me. The high dose steroids made m swell up and gain so much weight so fast all at once, after the high dose steroids were done i finally lost all that weight super fast in a few days and because of all the rapid weight gain and weight loss i have so many strechmarks as reminders of the toll it took on my body. I remember sumthing also happen where they thought i became like a diabetic from it all having to watch what i eat and having to learn to check sugars and give myself insulin,... Mind u i am in 7th grade going through all this. I hardly remember my life to this day. It seems like with age it gets worse. I have a horrible long term memory and growing up is all a blurr thats kind of scary. Well it all leadTo behavior problems depression ptsd anxiety and them pfescribin meds pre teen taking so many, i was a zombie. The whole case of my (HE ) really makes no sence and i cant find a DR who truley knows the ins and outs of this disorder/disease or whatever. My parents were protective of me and also i was just a kid going through all this that i didnt even really have any education on hoshemotoes. My parents and Drs all took care of it and conversed. Well only after a couple years of being diagnosed with Hashimoto's encephalopathy thyroiditis my pediatric neurologist couldn't be my neurologist anymore because I was coming into adulthood but what everyone basically told me is I outgrew the disorder / disease. That I no longer had Hashimoto's and they discontinued my medicine and my treatment and didn't need to see me anymore as a patient. That all seems so odd. So after i was un diagnosed or cured or whatever happen i still continued to have a lot of crazy symptoms and feel like garbage. I was diagnosed with bipolar and borderline personality disorder and fed a bunch of pills to make it better. But my hair was falling out and i w was always so hot and would have moments of intense hot flashes and sweating like crazy. On top of all of this i aloso was born with a congenital heart problem called Epstein's anomaly. I was born with it and had my first open heart surgery at the age of 4 years old. My heart and everything seemed to be fine with the HE except sumtimes my heart rate would go up really high. Also having fatigue, blood pressure issues, globs of my hair coming out. Well after they said " i didnt have it anymore" everything else that was still wrong all got pointed in different directions and diagnosis. Also a few suicide attemps and being inpatient at 16 years old for my mental health. I got addicted to drugs and struggled with that, and you know no one believes a drug addict. Well eventually one day out of no were when i was feeling shitty for a few days my neck got all swollen up, it was my thyroid.... Well my mom knew another doctore who was an ENT doc. But specialized in thyroids after he seen and tested me he told me my thyroid was "weird" lol i guess levels of blood work were speratic with catching when my thyroid levels were bad because apparently ny thyroid was trying to fix or repair itself. He told me eventually my thyroid is going to burn out and i will have to be on another pill my whole life and they will have to take my thyroid out. But no one would do anything about it untill it burns all the way out and doesnt work. I understood that but in the mean time i was feeling like shit randomly all the time depending on how my thyroid was at that specific time and even when it was low or whatever i guess it was/is hard to catch on blood work bcuz my thyroid is still trying to 'repair" itself on its own. I was and am still fed up with all the aweful symptoms. Since i dabbled in druga no one trusted a thing i said and then when i would have a seizure they always assume it was drug related. Yes i did have a few seizures that i know were from drugs, being a young dumb teenager and not knowing or understanding my health problems fully i didnt relize how much i was destroying and affecting my health how it did. Well after not having HE anymore but knowing i have a thyroid problem i moved on and my heart issue got worse as it was going to and i was in need of another open heart surgery where they were gonna try and go in and tamper with my tricuspid valve to see if they could fix it to work proper, which they did but it didnt hold through and my body couldnt pump my heart enough so they put at the age of 21 i got a pacemaker witch is constantly monitoring and pacing my heart. Technivally i am in heart failure but the plan is that they will figure out medacine more in the future or i will have to every so often get cut open again and they put an artificial or pigs valve in for me. They say once they do i will "be the healthiest i will ever be " "in my primime health" well anyways i was still having random seizures and alot for no reason even tho no one took me seriously. A few times i pased out or seized when i was driving as well. Usually they coulsnt explain it or said it was drug related in some way. Well all the other symptoms i still have on a regulat basis like my memory, my muscles twitching or spazeming. Or the tinglyness and numbness in my hands and feet, my emotional crap, my body temp and got flashes where i litrally pour sweat. Shaking and not feeling right or seeing right and headaches and hearing things,. Not voices just random weird noises. But my body temprature really makes me uncomftorable and its not normal for me at 24 years of age to be feeling this horrible of run/down wore out where it actually effects my life. I continue to try and do brain puzzles and memory stuff because i feel at times im loosing my mind or parts / experiances / memorys in my life. And its

frikish sales on December 05, 2019:

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Tammy on May 11, 2018:

Minus the depression, you described my life! My journey has taken me to all kinds of strange, interesting, informative and wrong places. But I trudge on...thank you for speaking the words we want to scream. But no one seems to be listening, especially those closest to us. My headstone is going to say, “I told you I was sick!”

Max on August 05, 2017:

Hello friends and also-suffererers, i´m austrian so please forgive me my grammar or my unability to find the exact expression sometimes.

I was diagnosed with hashimoto in 2015. The first two years went on and i had no symptoms , but in 2016 i suffered a lot of issues, i was diagnosed with depression and handful other diagnoses. In may this year i gained waight nas my Depression seemed to worsen, though i was on medication that had helped a little bit before. I also had lots of other symptoms and labs showed my TSH was about 4,3, but two of my doctors refused to get me Treatment because they told me i could "use the weight gain anyway" and "no doctor in the world will tell you anything different, it is said that Treatment Begins at TAH about 7....)and all other symptoms were said to be non physical....due to my diagnosis i had in the psychiatric section.

So i seemed to have just one diagnosis., there couldn´t be any further...

Fighting to get all my energy together to get another appointement, I finally got to an Endocrinogolist that prescribed me Thyroxine. If I had given up and did what my GP wanted me to, i would have lost 3 more month, unable to leave the house or sometimes even find a reason to spend energy on taking a shower...It´s a shame doctors still hold on the old lab values and are that unable to imagine there is something existing they may not know exactely, or even listen to their patient , imagening they could be right in any way or putting trust in their patient´s Body feeling...

Rosedandaro on April 18, 2017:

Girl,

You just describe part of my last eight years with Hashimoto. I got the weight gain, and two years on a very restrictive diet (no gluten, no sugar, no processed foods) I lost just fie pounds. But as you said: I am desperately hopeful. And sometimes sound that I know more about Hashimoto than the doctors I have visited in the last five years looking for answers. I educated myself reading, searching and try new supplements, doing diet and yoga. It helps. But I still feel I am just a shadow of the woman I used to be

Zaneta Wirtz on February 07, 2017:

My hubby has bad case of Hashimotos! However...his MD who is most excellent at what she does...took a "reverse T3" test that no MD does ever! His reverse T3 was off the charts! She added Cytomel with lowered Synthroid. She also did not go the normal prescribing route but prescribed doses according to his symptoms! He lost 40 pounds...was clear-headed..stopped craving sweets..was actually happy more than not and we got along much better. He could sleep! Yay! He did have a slight elevated heart rate that scared her but had no effect on him otherwise. His heart is strong! But ahe boo booed and took him down on the Cytomel and increased the synthroid and put him right back where he was! Ugh! Now she is trying to balance it again!

Ombretta on January 15, 2017:

Your life is mine, and when I said I was at a step of suicide nobody understood or believed me, except for my husbans, who saw me like a ghost.

I studied, changed my life style, my food. I changed therapy, I use to take integrations with vitamins annd minerals, and finally I can say I went out of that dark tunnel.

Maura Clu Gallagher on January 12, 2017:

I can relate to every word you said. I will be seventy years old in May 2017 and it has taken that long for me to come to terms with my body and how it works. I would like to have all of the time wasted back but I know that will never happen. From the time of my birth, a mysterious lump on the side of my neck set the tone for a journey of pain, despair, heartache, and destruction. However, no more! I do not rely on the medical profession for my destiny. I take full responsibility for my own journey and I can only achieve good health by arming myself with the most valuable tools . . . education. My story is long and difficult but I will tell it . . . not for me but to help others who are suffering. Not until societies around the world address the causes will there ever be a cure which I believe lies in the "food" we eat, the water we drink, and the air we breathe.

Michael on March 15, 2016:

How are you doing now? Any updates? I relate to everything you say here. As a matter of fact I send this people when I'm trying to describe my situation, because I couldn't say it any better.

Jennifer on September 28, 2015:

I am you. We are very much the same. I am a vocalist too. My creative outlet is destroyed. I feel like I am lost. I have managed the best I can on thyroxine for 34 years of my 48 year life so far. This had affected my learning and everything from a youngling. My study options were limited as I was deemed last with exam marks due to unable to retAin memory.

It sucks and people think or thought I was lazy ... I have lost freinds and family cos they think I am stupid and unambitios . I'm not.

What can I say as you have said all there is to say on this letter.

Thankyou for coming out with it.

You are a winner for this .

Shauna on September 28, 2015:

Help. Help,

Karen on September 27, 2015:

I to have this horrible stuff going on

Ellen on September 27, 2015:

Look at the Facebook page FTPO. It's really helpful with great advice for everyone with a thyroid problem x

Kristina Valcheva on June 18, 2015:

Jeez! Sounds like me! How do you deal with the memory loss?

Sherry on June 03, 2015:

i am hypothyroid..it is a really hard diease to deal with..only someone who has it understands...

BrandiL on May 27, 2015:

lane sebring md

Can you email me please. I need help

brandiblaz@icloud.com

shelly on May 24, 2015:

I have been diagnosed with Hashimotos for 7 years, after the birth of my second child. Along with depression ans fatigue a huge struggle of mine is exercise induced anaphylaxis. I have a hard time not breaking out in hives even with mild exercise. I have been in the ER 7 times, but I want to do fun things with my kids as they are getting bigger without a trip to the ER or worse on the way home. Has anyone had this problem with Hashimotos? Has something helped you?

lane sebring md on May 24, 2015:

I can help.

zz on May 24, 2015:

Does anyone know if schizophrenia is related to Hashimoto's? Thyroid issues run in the family and one of us has been diagnosed with schizophrenia. I keep thinking it's connected.

mary jeffries on May 24, 2015:

Diagnosed 20 years ago

Now 59. Great career finished. Once tried tried a couple of lesser bit professional jobs....lack of working memory made these a tremendous struggle and now simply a carer. Struggling to hold onto to my modest property property by renting it out while I live in as a carer. Lots of times suicide contemplated. Now realise family history of hypothyroid including my long deceased mum who sad to say emotionally abused me. No children of my own, isome ignorant punitive family members who judge me to be weird. Luckily still have a few Gr8 friends left. Doctors NEED to understand the life they condem us to when this is not peoperly treated.

Alison on May 23, 2015:

Dear Scarlett,

Thank you for putting this experience out there - it parallels my own, and no doubt will speak to many people who are suffering in the same way. I am also a musician, but this stopped when I gained 35kg and couldn't walk or think. It's been a 2 year journey, and I'm a lot better than I was and have lost 20 of the 30, but weight bothers me less now :)

I also have these 'missing' parts of my memory, and for a while was consumed by thoughts of what I had lost (money, relationships, life plans, fit and functional body, energy).

Recently, my perspective has shifted: my journey has created who I now am, my suffering has engendered enormous compassion for others, I am no longer judgemental and harsh.

I cannot focus on the loss and move forward. I have to accept this me, lovingly, fully, and move forward with what I have. I really like this accepting, more nuanced, stronger me. It is a gift of this disease that I have come to be in this place where I now am.

Good luck with your own journey and thank you for sharing this

Crystal on May 17, 2015:

Beautifully written. I have had Hashis almost all of my 39 years on this earth. I have found in the last year that going paleo and taking LDN has finally started to give me my life, passion, and brain back. Good luck to you♡

jade on April 05, 2015:

I am 15 years old and diagnosed with hashimoto's. It was first suspected at the age of maybe 5 or so. I suffer from most of this and perhaps this is the real cause of symptoms that have been blamed for my ADHD and depression from my mother's death when I was young. thanks for sharing your story, it may help me and the doctors to actually change the right meds or find effective solutions.

Evan on December 22, 2014:

This may be of help.

Caffeine seems to chronically increase levels of the transcription factor, CREB: "Sleep deprivation prevents stimulation-induced increases of levels of P-CREB and BDNF: protection by caffeine."

http://www.researchgate.net/publication/49852793_S...