I've lived with Hashimoto's for many years. I hope that sharing my experiences might help others in similar situations feel less alone.
Perhaps the most difficult and challenging component to 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. Unknown number of memories unremembered. Unknown number of social functions unattended. Several failed friendships and relationships.
Over 80 hours of emergency room wait time per year. Unknown number of UTIs, kidney infections, and anaphylactic episodes. 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. 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:
Read More From Patientslounge
Common Hashimoto’s Symptoms of the Body
lack of energy
frequent illness (including kidney and throat infections)
extreme sensitivity to cold (followed by hot flashes)
numbness and tingling in the fingers
low body temperature
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, 9 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 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.
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 to 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 of 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 for those who suffer in the worst way: silently and without compassion from others or from 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.
Rudra Ashis Mishra on July 12, 2020:
Helena Lakwatsera 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:
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:
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
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:
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."
CREB doesn't get along with the thyroid: "The thyroid hormone receptor antagonizes CREB-mediated transcription"
CREB is often involved in withdrawal/addiction: "Regulation of Cocaine Reward by CREB"
And can play a role in anhedonia: "Activation of CREB in the nucleus accumbens shell produces anhedonia and resistance to extinction of fear in rats"
l-THP, from the herb Corydalis yanhusuo, can chronically inhibit the phosphorylation of CREB: "Levo-tetrahydropalmatine attenuates oxycodone-induced conditioned place preference in rats."
Most likely by upregulating D2 receptors: "Study on effects of Corydalis yanhusuo and L-THP on dopamine of reward circuitry in conditioned place preference rats and comparison"
For me, the best strategy has been quitting caffeine, adopting a high-sugar, high-protein diet and supplementing with corydalis.
Riboflavin is also a very important nutrient for thyroid health: "Low thyroxine levels in female psychiatric inpatients with riboflavin deficiency: implications for folate-dependent methylation."
SeenEnuff on December 20, 2014:
Someone commented that T3 alone doesn't work. However, not everyone can convert T4 toT3.i was being treated with huge doses of T4 , with no improvement, until my husband came across that.(we're both MDs) it saved my life. As it turns out, all 3 of my sisters had the same thing
Jeannie Kline on October 28, 2014:
Mandy, your neice might do better on a gluten-free diet/paleo type of diet. I have found with myself that it is trial and error. Raw cabbage, cauliflower, broccoli, and soy can aggravate thyroid disorder. Yet fermented (soy sauce) or cooked cruciferous vegetables are usually tolerated. I hope that helps. Hashimoto's 411 Facebook page is a wealth of great information on diet.
Jeannie Kline on October 28, 2014:
David Dressler, excellent post. It essential to have the Free T's checked along with the TSH and a thyroid antibody blood test. Reverse T3 will let you know if the available hormone is being blocked. If you can possibly afford it an integrative medicine doctor is the way to go. A 4 times a day cortisol/hormone test is also useful to determine if being hypothyroid has compromised your adrenals, pregnenelone, and DHEA as these hormones will suffer greatly if they are out of balance. Integrative Medicine offered this to me and I had been trying for years to get these tests ordered by conventional medicine with no results. I would ask for the testing and either it wouldn't be ordered when I went in for the blood draw or they would order the cortisol by 8 am blood or urine test. Natural dessicated thyroid supplementing is a good option, but very hard to get a conventional medicine doctor to prescribe it. Five doctors later I am finally being optimized.
Mandy on October 26, 2014:
My niece who is only 7yrs old has just been diagnosed. Is there certain foods she should only eat! My sister is so worried xxx
David Dressler, BA, RMT on October 22, 2014:
You suggested those suffering from such symptoms as you describe have their TSH and thyroid antibodies tested. Please note that TSH alone is not sufficient to diagnose hypothyroid or Hashimoto's auto-immune hypothyroid. It is also necessary to test free T4 and free T3 and possibly reverse T3, but starting with those basic three. A lot of doctors simply test TSH and diagnose high or low thyroid from that alone. Unfortunately, for many reasons, TSH is not always diagnostic of low (or high) thyroid in and of itself. You mention how long it can take to diagnose hypothyroid or Hashimoto's. One of the reasons is that only TSH has been used. Another reason is that the scale of "normal" is too wide: a lot of lab-normal thyroid results are actually sub-normal in terms of the patient's actual condition. When this happens, doctors often treat the many symptoms, the kinds of things you mentioned. This never works because the cause of those symptoms--thyroid failure or auto-immune disease, even pituitary dysfunction or even leaky gut--is being ignored.
miranda on October 22, 2014:
Thank you for those words. I was diagnosed in June. But I've been on meds for bipolar since 2008. Your symptoms are similar to mine except i had hives for 6 months consecutively. Any words of wisdom or even an ear to listen would be great. I feel like I'm in a nightmare.
Teresa on October 22, 2014:
Thanks for this article and for all the posts following. .. I had 2/3 of my thyroid removed in June of 2006 due to huge nodules and was diagnosed with Hypo and Hoshimotos at that time but NO CANCER!
No meds for the first year the endo said then ariund December I went in and said some things wrong. Do began my years of anti depressants/ anxiety meds. Cholesterol meds. Sinus issues snd severe fatigue, brain fog and everything that's been listed by others here.
IN September of this year i finally tried the Whole30 program = basically gluten free, no added sugars, dairy or wheat or grain products and no legumes.
I lost 10 lbs in about 2 weeks the bloating was gone and my energy was great. Sleeping good and the fatigue was gone.
I wrnt off my antidepressants and cholesterol meds and feel great.
Well I need to go back on the Whole 30 again as I've tried to add certain foods back and I'm right back to bring fatigued and lots of brain fog..
I've switched doctors in hopes of getting someone to listen instead of telling me it's in my head. I had a PA for the last 7 years and will now have a PhD for my daughter and I.
My daughter is 15.5 and weights sbout 10lbs more than I do. I've had her thyroud tested and was told its okay.
But shes heavy for a 5ft 7in teenager. She loves herself but I can tell shes frustrated. She doesn't eat crappy foods but she alsp hates exetcise. Shes active in school walks everywhere and is a cheerleader. Her hips and butt should not be like they are. Im slowly making progress with her to go gluten free but we are carb addicts and its hard.
My oldest daughter who is 28 also needs to go gluten free.
Pretty sure she has celiac and thyroid issues but she won't listen to me bc her doc says her thyroid numbers are in normal range. I've given her all the tests that should be done to give to her doc but no luck..
Thanks again. .
Robin on October 22, 2014:
Thank you for this article! I also have Hashimotos. I had surgery 6 years ago to remove my thyroid and both lymph nodes. I had radiation treatment and was cleared of the cancer. I am finally back down to a yearly check up. I take 300 mcg of levothyroxine daily. I was hopeful that the medicine would take all that you list in your article away but it doesn't. It is a daily struggle.
future bright on September 12, 2014:
It helps so much to be able to say this to people who get it. For years I have suffered wondering what in the world was happening to me. It started with exhaustion, gradual intolerance of foods that never bothered me before, confusion so bad that I would forget simple words and forget the way to places I had driven a million times. My heart would lurch, and skip beats, I had sleep apnea, dry eyes and mouth, sky high blood pressure, vertigo, balance issues, otis media and tinnitus. I became thin and my hair fell out around my hairline. I lost my appetite. My chin and cheeks would swell up and my eyes bugged out, and I didn't have to worry about shaving because my leg hair stopped growing. I had faithfully exercised every weekday since my teens, but I was so tired I couldn't keep it up. I had a boyfriend at that time, and he was ashamed to be seen with me. He told me that I needed to go to a doctor because I looked so bad. However, I had seen many doctors who told me the same thing- there was basically nothing wrong with me. In the past I struggled with depression and I hate to say this, but I think that once you have something like that on your chart, doctors no longer see you as a credible person. I was insulted, yelled at and patronized.
Over time I started to swell up with fluid. It got so bad that I couldn't
button my coat around my middle. Of course you get the subtle hint about diet and exercise, but I was barely eating anything. It was doubly weird because no matter what, my waist has always been small. It felt like there was something in my throat choking me and it was hard to swallow. It got to the point that I was so exhausted that I could barely function. I had periods of apathy followed by intense anxiety. My hair stopped growing and the soles of my feet ached and burned. My bones hurt. My soft, feminine voice became gravelly and deep.
I started to notice that people were reacting very negatively to me. I went to a family event and my uncle told me that I was still attractive in soothing, pitying tones. Strangers would look me in the face and laugh or stare. A woman in the store called me Sir and looked at me with contempt. This kind of hostility that I was shown makes me wonder if people thought I was transsexual. (I'm not.) I was outside and my next door neighbor's child stared at me and said, "She's ugly." My looks had changed so much that I hardly recognized myself. It's bad enough when you feel bad physically, but when you are subjected to such emotional abuse it's hard to endure. This is why I rarely go anywhere.
Because doctors wouldn't take my concerns seriously, I've had to treat myself just to survive. First, I only eat organic or GMO free foods, and I'm gluten free. Secondly, I noticed that when I took any vitamin with iodine or ate foods with high iodine, I had a bad reaction. Then I read a blog that said that iodine makes Hahimotos worse. That made sense to me so I stopped taking iodine and felt better. I thought about desiccated thyroid but you can only get it through a doctor and I'm done with them. Then I researched herbal supplements and came to Bacopa. My daughter had some so I tried it.
Imagine my shock when minutes after taking it, my neck shrunk and for the first time in forever it looked normal. When I spoke, my voice wasn't deep and gravelly anymore. That's when I really realized how big my neck had gotten. I'm grateful to God that I finally have the answer. I'm not surprised because my family has a history of autoimmune conditions and I have struggled most of my life with allergies and digestive issues.
I pray that things will get better for all of you. I know it's hard.
plagued by Hashi on September 05, 2014:
I have read many forums about people's experiences with Hashi's, or the " slow killing plague with no cure" as I tend to refer to it. And I can relate to every horrible physical and mental annihilation this genetically predisposed illness hits us with relentlessly and most assuredly without hope. I have been battling this disease for so long I have no idea who I am anymore. If I were to lean toward a spiritual phrase that encompasses this, I would say that the slow degradation of of all body parts, organs, systems and mind is like having one's soul devoured piece by piece. My light has left me. I am not a religious person just to clarify, but I do see the world with great imagination which only makes this illness in me all the worse. There is nothing more horrible than losing the ability to feel joy or happiness. Indeed the endless migraines, joint pains, nausea, fevers on and off, cold extremities, numb arms, frozen neck and shoulders, inability to breathe fully, chronic allergies putting me in hospital, itchy eyes, blood in urine, skin problems, hives, crazy mood swings, disabling crankiness, horrific tempers, uncontrollable crying, endless anxiety and of course the sleep of death day in and day out are no picnic either. I have been prescribed no less than 15 different antidepressants and anti anxiety meds over the last 20 years. I lost my job over 6 years ago. I have zero income...not even disability as my Doctor does not recognize either me or this disease. I have been refused specialists too many times to count. Had over 10 ultrasounds, 3 CAT scans and one MRI. This year I began a new symptom, blacking out. I never black out. I am not a fainter...ever. It is the scariest sensation to feel for the first time especially while driving the car. I think terrifying may capture that better. I have had more blood taken than what lies in a slaughter house. I have tried every Thyroid med available to me...I even had one specifically made for me. My Dr. keeps saying that I have built up antibodies to all the meds. What he doesn't understand is that the antibodies present in my blood work are actually proof of Hashimotos. He does not understand this. I have been researching my illness for years. I keep copies of all my tests and blood work. I have seen at least 6 different naturopaths. Lots of money, very little help. I went gluten free, dairy free, sugar free, processed food free. No sulfites. No additives of any kind. No soy. I make green smoothies with vegan gluten free protein powder. But here I am, still very very sick. I have known about vitamin and mineral supplements long before they became trendy. I know what increases thyroid med uptake and what interferes with it. I have been taking probiotics for years. I have cleansed...many times as I suffer endless candida. I also have h pylori infection. I have attempted many treatments for that...conventional antibiotics as well as alternative medicines. The h pylori is agony in my stomach and causes severe gastritis as well as inability to fully absorb nutrients and meds. My intestines were damaged from years of food allergies and then years of undiagnosed hypothyroidism. I have diverticulosis as a result. I do not see myself getting better. I don't have good days. Haven't for many years. No one understands this. I do not fear death, only this suffering. The only problem is, my daughter who I raised alone in poverty has been exhibiting all my symptoms and ones I have never had. A genetic curse in our family. My father passed this to me and both his parents to him. If I could spare my daughter this agony I would take her illness with me. But I cannot and that is more heartbreaking than all the sorrows I have suffered in my lifetime. They say by 2050 the greatest illness will be autoimmune disease. It will surpass cancer and aids. And yet the least amount of money and research is issued to research autoimmune disease. They are fools. It's a 10 to 1 ratio against women for autoimmune diseases. Just imagine one third of all the females suffering one or more autoimmune diseases in all the world. I don't see a future in that. So much senseless pain. My empathy is endless for all those who suffer this disease and all the sister diseases that quite often accompany it like lupus, chronic fatigue syndrome, fibromyalgia, Reynaud's syndrome, RA, MS, sjorgrens, graves, celiac disease....endless.
Mignon on September 01, 2014:
I cried my eyes out. Why are there no hospitals for us? Maybe these kind of forums are! Thanks to all of you, above all Scarlett (how are you now?)
My husband and I went to hell and slowly back after 20 years of mental, financial and, certainly for me 'social' stress...
I can relate to many of your problems, especially being told by endocrinologists that everything is ok and anti-depressants & co are the best solution. I had trouble with IBS, sleep, tachycardia, UTIs, fatigue, allergies/eczema, numerous infections like helicobacter, pleuricy, you name it. The antibiotic bombardment started early in childhood as my parents did not know any better back then and in the 70s my father smoked when we kids were present.
Only recently a holistic doctor in New Zealand put me on the right track. For the first time I found out that the antibodies are over 1300 (they don't show antibodies higher than 1300 in New Zealand's labtests) and that there are many deficiencies like B 12, iron (due to heavy periods) vitamin D etc. and that a hight level of cortisol was present which made it even harder to sleep. So I was prescribed Selenium, Zinc, natural hormones, a gluten- free diet and got iron-infusions. To lower the cortisol a supplement called PS was prescribed and helped very fast. I haven't taken the hormones yet as I'm very scared of any new meds as I don't want to end up in emergency as a few times beforehand (e.g bad reaction to food and recently a simple cortisone injection! Be careful with these!) I struggle to stay completely gluten- or sugar free but what choice does one have. It is still expensive but hopefully will change with more demand and knowledge. But what has helped me is acupuncture. I suddenly started to sleep better. Also I bought some special vitamin drinks from the pharmacy which gave me some energy back and took tart cherry juice which has a lot of melatonine.
The ultrasound showed some small nodules but no action is required. What I would like to know is if anybody knows how to lower the antibodies (APO) apart from taking selenium and being gluten- free? We don't all have the energy, money or time to study this day in and out....on top of our misery!
My mum had her thyroid removed, my sister has Morbus Addison (the adrenal gland stopped producing cortisol - life threatening) and my little niece seems to have the same fate waiting for her --- but probably in her lifetime there will be even more research or a pill which has all the individual nutrients which adapt to the (then even more toxic) environment?...It is certainly passed down through the mother- line plus all the increased toxins and stresses of today and the end result: life as a zombie!
Thanks again to all for sharing their story. It gives so much hope despite all the setbacks and humiliations one had to suffer! One day all doctors will work together and will say "Imagine, 200 years ago they prescribed anti- depressants, ate gluten and so on. The list is endless......
Mol on August 18, 2014:
Coincidentally a couple of weeks after Mina posted her comment, I happened upon this site as well. And my first thought after reading the this site was same as Mina's: HEAVY METAL POISONING.
I have fought all of these same symptoms my entire life, and finally did hair sample test for heavy metals -- showed Aluminum and Mercury in toxic levels. All these symptoms finally relieved through chelating heavy metals. Literature on heavy metals poses that the thyroid conditions are actually symptoms (thyroid reacting to heavy metals) -- rather than thyroid being the "cause". All the best.
Mina on July 29, 2014:
No, you have Hashimoto's in conjunction with mercury poisoning. I assume you have silver dental fillings? Look up Andrew Hall Cutler, PhD. Princeton-educated chemist. Read his book Amalgam Illness.
FellowSojourner on July 26, 2014:
I'm also suffering from Hashimoto's Thyroiditis, and I have to say that this mirrors almost exactly the way my symptoms have been expressed. I'm glad that it's not in my head; I'm glad that someone else is backing up what I'm feeling.
I'm also a musician, currently at conservatory, and this disease has completely robbed me of my passion. Passion was the one thing I thought I never lacked, until I woke up one day (quite literally) and said to myself: "Who cares?" I felt it snap like a twig underfoot--the desire to pursue and excel at my instrument vanished into thin air, and I've been lost ever since.
I'm struggling to fix this and get rid of these symptoms before my career is absolutely ruined, and it's encouraging to see someone "fly the coop" and get out of the vicious circle of fatigue and depression I constantly find myself embroiled in.
Thank you for posting this--I know this post is a bit old, but I really hope you read it and understand how much it means to me that you confirmed how I've been feeling for more than half of my life now. Especially as a musician--our passion is our lifesblood, and without it, we're nothing. It's the one ingredient that you *must* have to pursue this career, and missing it is like missing a spouse or a limb. Knowing it can be combated and hopefully overcome gives me a lot of faith in what I'm doing. Thanks.
Michelle on June 23, 2014:
I was diagnosed 3 years ago. Thank goodness the doctor I was seeing had thought to order the antibody test, otherwise we would be going around in circles. My thyroid is still working fine, amazing after all this time, because she told me eventually it would give up the battle. At the beginning I did try the medication(natural and synthetic) for Hypothyroidism, problem was my thyroid was perfectly fine so the medicine ended up making symptoms feel worse not better. So after a couple of months I told her I wasn't going to take it, I would try another avenue. 3 months later still having the issues, but my symptoms were not as severe as when I started.
1. My biggest issue had been taking 4 naps despite that I was getting 12 hours of sleep at night. I have 2 boys that at the time were 6 and 8, this had to be changed. I started looking the herbal/supplement method. I found one because not only was I having Narcolepsy problems or at least it felt like that, I was having weight issues. I found a supplement that was for people with Hypothyroidism called Thyro-slim. This supplement did not work for my weight, however, I noticed that it did help me from taking 4 naps a day. So I've been taking that for about 3 years now.
2. Also, I stopped gluten when I found out I had the disorder. I have a friend that is a hormone specialist, that was the first thing she told me, NO GLUTEN. I was like what, you might as well tell me no more happiness. In the past, I could pass everything else up, but bread was my love of food. So I did a little test, stopped it for one week, tried one piece of Gluten the following week and my stomach looked like I had just swallowed 2 loaves of bread or was at least 6 months pregnant. I couldn't believe that eating Gluten could do that to my stomach. I also needed to take a nap right away. So I then knew NO MORE GLUTEN.
3. Naps under control, Swollen belly issues finally settled, what about the other 7 issues I had. Well, research after research, ugh, enough to make you wonder "Seriously, did I miss up big time in life or what. WHY ME?" Last year(2 year mark) I decided to detox. That's right. I figured it's got to do something, right? So I detoxed, for a whole week. Yeah, that's right, first time detoxing and going for a week. Everyone's thinking this girl is bat crazy. When I detoxed, I stopped all the vitamins and at the time I was only taking 2 medications for my severe allergies(to dust mites and pollen, can't get away from that stuff, it's everywhere)- Zyrtec D and Flovent(nasally). After the 3rd day of detoxing I had to use the Zyrtec D, I was sneezing like a bad rash, it wasn't going away. So researched about the Flovent which I was taking because of the mucous issues I had. Found out through research on the web, that people get a lot of mucous from duh, duh, duh- SULFITES. What? And most people that have upper respiratory problems like sinus, asthma, headaches/migraines are stemmed from SULFITES. I wanted to go back and smack my damn allergists up the head. In case you didn't know guess what kind of food is considered a sulfite- Wine, Chocolate, Diary, Gluten, Soy, Corn, Nuts, and the list goes on. So I probably didn't need to be taking that Nasal Steroid Flovent for 20 years. Great. After the detox, my body, started reacting when I ate certain Sulfite food. I soon learned that most diary caused me to have severe mucous problems and that SOY products caused me to have both mucous and itchy upper body problems(my head would itch like I had lice and my upper back felt inflamed). So if anything the detox and stopping the medication made me more aware of my bodies true food problems.
4. NO CAFFEINE. Now let me tell you before Hashimoto's, I wasn't drinking much caffeine. I usually had my one cup of Green Tea in the morning. That's it. And every afternoon, I'd crash. So after I got the Thyro-Slim tablets and things were going good. I still noticed I was a little more tired in the afternoon then the rest of the day. Not nap tired, but more sluggish. Aha, well when you think about it caffeine is a stimulant, even decaf, still has some caffeine, and everyone one knows what goes up must come down. That's right. Make sense now. So NO CAFFEINE, unless you take it four hours before you go to bed, to help you sleep. Also, I know B12 is good for energy, but every time I took it, I'd get that sleepy, crash feeling later. And I'm thinking it's because it has the same issue as the Caffeine, what goes up must come down. Your body is under enough stress, you want to give it a jolt/shock when you know it's just going to say okay were done.
5. Probiotics. I take probiotics everyday, everything that I've read about Hashimoto's has said that it's important to take them every day. Your body can't fight off all the bad stuff and sometimes you need a little help. So I take them everyday.
6. I'm not sure if they help, but I do take a Calcium supplement w/D3(because of the diary issue) and a high dosage Vitamin C. I've been taking L-Theanine(to try and boost my creativity that used to rock, but now is non-existent(occasionally I'll get a short burst, but it's fleeting and short-lived, not helpful)) and 5HTP(to help get me sound sleep, instead of restless sleep which I sometimes get, especially when I have a lot of anxiety, doesn't seem to help with that either). I've only been taking the L-theanine and 5 HTP for about 3 weeks now, so I'm willing to give it a couple of months, before taking it off my plan.
7. I actually got a good report with my last blood test in December, yes I still do the 6 month blood test to check my levels. They actually told me my anti-bodies were normal and I didn't have Hashimoto's. But we all know that this lovely auto-immune disorder stays dormant in your body and one day might be better then the other. So I feel I still have it, if not for any other reason then the acne(I've started using peppermint essential oil on my face for the acne and it seems to be helping it a little, not entirely, but not so many clusters on my chin), lack of libido, dry skin, memory issues, sensitivity to cold(I still have a cold belly and butt to the touch, one of the signs apparently, or at least I was told) my feet are always cold, fatigue in the sense of not feeling like doing anything strenuous(like exercise), depression(comes and goes, but I've had that for a while now even as a child). I'll know soon enough, when I get tested again. In the meantime, I'm just going to keep on swimming and hope that one day if I'm not cured at least I'll be swimming in the right direction with the other fishes.
Lynn on June 11, 2014:
I wish that I had more time to describe my run in with Hashi's but I am at work. In a nutshell, I was diagnosed about 2 1/2 years ago. I'm sure that it was brought on by stress. I went through the dry skin, heart palputations, headaches, allergies, acne, itchy ears, bleeding gums, extreme exhaustion, etc. which are all symptoms of Hashimotos. I felt terrible! My general doctor right away sent me to a doctor that wanted to put me on synthroid. I told him that I had scheduled an appt w/a homeopathic doctor and if that didn't work out, I would be back. Well within 3 months of taking supplements that were prescribed by John, I felt that I was on the road to recovery. I was amazed at how good that I could feel. His statement was that there was nothing wrong with my thyroid, it was that my immune systme that needed to be balanced so that it would quit bullying my thyroid. Wow, this sounded wonderful to me and it worked and it's a natural supplement that doesn't have multiple side effects. Just in case you'd like to read up on it it's call x-viromin. Good luck to you all and hopefully this information can help someone. Natural is the best way to go, and why paralyze an organ that did no wong? Needless to say, I never went back!
blondee028 on May 24, 2014:
I was diagnosed in 2004 but I probably had it for 20 years before I was diagnosed. I am now 71, I have taken synthyroid and cytomel anywhere from 88mcg to 112mcg and cytomel 5mcg up to 3 times a day. If I got chest pain I would reduce meds. My doctor let me take meds according to how I felt. The last few months my hair was breaking off at the scalp so I reduced my meds to 88 mcg that's it no cytomel. I noticed after I reduced my synthroid to 88 my hair started growing and stopped breaking. Its been 2 months but now I have shortness of breath a lot. Its a vicious cycle and I hate it. As for memory I blamed it on the lipitor. I stopped that and my cholesterol is 250 ..You are not alone
Paxton Britt on April 30, 2014:
I would like to add a few things. One is that I take levothyroxine not synthroid...so i plan on trying the other thyroid replacements.
My doctor at UAMS recommended supplementing selenium which I have now started.
I see that people are rechecking these posts from the comments and I would like to invite ANYONE to email me regarding my post, lifestyle changes, diet progress, symptom relief, or really anything else for that matter.
My email is: email@example.com
I think it is super important that we help raise awareness of this serious problem during our journey to health. I am thankful to have been diagnosed only one year in while others have suffered their whole lives, yall have got to be the strongest people on this Earth.
Finally I have a few other symptoms I didn't mention in my post that include: migraines, extreme anger issues( I used to be the mellowist person everrrrrr and now I scream and punch walls for no reason, FUN), extreme sleepiness I usually sleep a good 20 hours to feel *normal*... I go on sleep benders for about three days(not good when you have college classes), I've had a complete shift in personality, and problems with anemia and levels for Iron , B-12, D-3, and calcium.
Paxton Britt on April 30, 2014:
I thought I would leave a comment here since my mom sent me this link. I have never heard a better description of what I have been going through for the past year. I was diagnosed with Hashimoto's three days ago. I've been taking synthroid for six months with no results, been on six different depression meds, and was hospitalized for six days in a behavioral unit after threatening to kill myself during a serious anxiety attack. I just turned 20. I am a sophomore in college and had oh so many plans for my life. Everything just seems pointless now. I've failed two classes, dropped a few and nearly dropped out completely of college and my Scholars' program. I too am a singer songwriter and not even music, my favorite thing in the world, brings me joy. I've abused alcohol out of hopelessness and have to take diet pills to feel somewhat normal, not even myself. I've had a complete personality change. I used to be loud, smiling, laughing and joking all the time, now people are lucky just to get my attention from staring at a wall. I think the hardest thing for me, other than trying to write a 12 page 4000 level science research paper, was having to watch my family suffer with me. My mom has not stopped researching, calling doctors, and asking favors for 9 months. We are so thankful to finally get this diagnosis, although it doesn't solve my issues only gives it a name. I am determined to get my life and happiness back, screw the energy, screw my intelligence, even screw my vocal abilities... If I could just have that happiness back I would do anything. I've been paleo and gluten free for 3 days now and plan to keep it that way in an effort to help my body straighten itself back out. My doctor has given me the go ahead to start vyvanse to help me with cognitive issues and complete college with a half decent degree. I will not give in to this. Unfortunately I'm not a computer and I can't just reprogram my body, but I can help it fix itself. The body is capable of amazing things, I've seen it myself after my gastric bypass in 2011 and a loss of 150 pounds. I pray everyday for my health and well being as well as my family's and everyone else suffering through this with me. Thank you for your post and I hope that you have made progress on your journey to health.
-Paxton, 20 year old college girl in Louisiana with a ton left to accomplish.
Sonostacy on April 01, 2014:
Hi , I am from Florida and have lived with hashimotos symptoms most of my life . I had infertility issues and even saw a endo infertility physician to conceive . I had all the obvious labs even the antibodies and continued to have my daughter whom is now 8yrs old . I have continued to have all of my symptoms but have not been able to continuously afford insurance ( sadly I am an OB/ gyn sonographer ) who doesn't keep up with her health , my daughter comes first . She was born pretty heathy but thorough out the years All the symptoms started to appear and again she was pushed away as I was . They tried to put her on ADD meds anxiety meds and I said NO ! ( I am currently on vyvanse and Xanax because no one will treat my or admit to my Hashimotos ) well when Veronica was just 7 she collapsed and the did a lab panel at the hospital and I told the ER doctor that I was sure she has Thyroid issues and finally he said I'll do labs while you are here. Her TSH was 29 antibodies were as they said the highest they has ever seen and they ran them all twice to be sure as they thought with labs like that how could she be so alert.
It has been 1 year and my heart is breaking and at a loss on what to do next ? 7 medication does changes and I hardly recognize my baby sometimes she is just out of control . She is such a good girl , gifted , amazing artist , her school has even put her I accelerated classes but she is becoming more foggy brained tired moody emotional etc . I fell like I am losing her :( my husband are having a real hard time we can not find anyone who can help us . She is only 8years old , I fear for her future . I have even tried again to get into see someone myself as it is said to be hereditary but no luck . What will happen to my daughter as she goes through puberty , synthroid doesn't seem to be helping or if it does it's a short time them we get a new dose . Her last TSH was 26 and she gets labs every 6 weeks . I am just at a loss any advise who'd be really appreciated . Thank you Sonostacy@gmail.com
rachel on March 19, 2014:
thank you thank you for this. my illness has followed a very similar path! some of the symptoms were there when i was young but i know for sure i had very overt symptoms around age 15. was not diagnosed until age 25. my mother has an autoimmune thyroid condition and was diagnosed when i was very young so i had no memory or knowledge of what the symptoms actually were. all i remembered were her intense raging mood swings which terrified me, and made me scared of "catching" thyroid disease myself.
i literally told every doctor i saw up until i was finally diagnosed about my family history as well as my raynaud's syndrome which i vaguely knew was also auto-immune and could be linked. i literally didn't realize my other symptoms were symptoms until recently and so rarely mentioned them. i thought they were like you said, character defects, or just me "being sensitive" or "introverted" like my family and friends frequently described me. doctors always commented, oh yeah, when you get older you'll want to keep an eye on that. NEVER once was i tested. doctors always refered to me as "young and healthy" and never tested for anything when i felt anything but. the times i went to a doctor for what were hypothyroid symptoms, they usually couldn't figure it out, and i gave up looking for answers.
i felt horrible about myself most of the time on top of physically ill and constantly frustrated not sure why life was so much harder for me than everyone else. i knew i was very smart, and yet struggled to do math in my head. maddening! i was frequently punished for my symptoms (moody, math grades dropping, oversleeping, lazy, etc) by my parents which made me feel absolutely helpless and like a total failure at life.
longstanding and severe emotionally and mental effects on me. i went through the psychiatric maze, and of course, despite me mentioning my family history of thyroid problems, NO ONE ever suggested i get that tested. i was ignorant of any connection. i know now that around half of all people who complete suicide have thyroid antibodies in their bloodstream. there is mountains of research on the prevelance of psychiatric symptoms in thyroid patients.
i have been on the road to recovery for 3 years now, and still have only had one "normal" blood test after continual adjustments to my medicine and trying different medicines. im doing a lot better but still have some problems.
the absolute hardest part for me is the sense of betrayal by my family and the medical community for not diagnosing me and helping me. in high school, teachers, coaches and my friends' parents even confronted my mom and dad at times because of my behavior, and obvious change in personality. they never did anything. i haven't figured out a way to let go of the anger, and my symptoms and bad blood test results constantly re-open the wound.
Bella on March 06, 2014:
I'm from Brazil and I also have Hashimoto's disease (forgive my english in this text). I was diagnosted when I was 18 years old. Since then, I have to take Syntroid 88mg and, although my TSH levels are within "normal" range, I still fell the same symptoms. I share some of your problems described like EXTREME fatigue, forgetfulness, muscle weakness, sometimes I cry for no reason, insomnia, my hair is a mess, high colesterol level, difficulty to lost weight, I have many skin problems and sore throat. After years taking medicine, I still fell all of these and It's hard to take. I am in the engineering university and it's so difficult to do anything. People around me who know of my disease think that I must be faking or something. In front of people who don't know I have this disease, I try to pretend everything is Ok. Everytime it's more difficult to pretend. I wish that the scientific community pays more attention to this disease. Meanwhile people like us has to suffer and left without answers. I found this blog because I'm in the middle of a crisis and I was looking for people who share the same problems. I was looking for hope or at least some way to help myself. Everyday is a battle and knowing I'm not the only one helps. I hope the treatment helps you, because for me it seems that I'm eating candy everyday in the morning.
Jenny on February 26, 2014:
This article is me! Thank you.
I was diagnosed with hypothyroidism 10 years ago but now my doctor is wondering if it is Hashimoto's. Everything you describe in this article I have lived. My doctors in the past have given me little to no support or explanation about this ("just take your thyroid meds, your levels are all normal") since I am also diagnosed with borderline personality disorder (was first assumed to be bipolar), depression, anxiety, fibromyalgia plus pcos and what they see is a crazy, hysteric woman who just needs attention! Sound familiar to anyone?
I am only now starting to look for links between diet and thyroid function and am taking baby steps towards to find what suits me best and how to function with this disease.
Good luck on your journey to health and happiness and best of luck to you :)
Chelle on February 24, 2014:
I am one of the people where autoimmune disease (spondylorarthopothy) came before my Hashimoto's. Unfortunately, I will never truly knkw which came first because I was not tested for autoimmunity against my thyroid until within the last year. I hear you, I get you, I'm sorry.
queenie on February 24, 2014:
The gene mutation MTHFR, being triggered I believe is what causes many autoimmune diseases.
Learn about it. It's not the gluten, its the shite they are putting in it. We can't digest the enrichment vitamins they put in all gluten products. I have been on this journey for over 17 years. You have been be your own advocate and detective all in one. Keep up the fight warriors. That's what you all are!!!! Blessings
Terese LaPree on February 23, 2014:
Scarlett, Your writing is amazing me. most of it is anyway. I would like permission to use part of this post inserting my own info, but also saying at the bottom that you wrote most of the letter if you will. plus a button back to your hub page. I can certainly send you a copy of what I did to amend your writing. I have been trying to come up with something to have in my purse to hand people when I run into them that want to know what is going on, and why haven't I been back among the living. Right now I can't concentrate long enough to write anything intelligible. Hugs to you and Blessings.
Nerma on February 21, 2014:
I was diagnosed with Hashimoto when I was pregnant with my first child back in 2009. Thank you for writing such an amazing story. Not once did anyone from my family and close friends asked how are you? They actually laugh and find this name exotic so I am left with being alone, stumbling in the dark. I also go through the days of depression, terrible mood swings and I am cold even in the middle of the summer. Thank you for your braveness and I will share this on my FB account and make sure that from today I make people aware around me that this can happen to any of us!!! Thought to carry, do not judge!!!!!
Kimberly on February 21, 2014:
It is so nice to know that none of us are alone. Together we can break down the walls that surround us and work to make the medical community aware of how devastating Hashimoto's really is. Thanks, it is a great piece.
l.yne cooner on February 21, 2014:
will rewrite because through all of other testimonies I've realized I'm not crazy or ALONE! Look for future post! Thank you all for your braveness to come forward and share! I know not all our symptoms are not exact but close enough for moral support and that means the world, when you think your by yourself! Thank you!
Karen Nelson on February 21, 2014:
Your story seems to be to some degree a little of all of ours. I was diagnosed in 2005. It has certainly been an uphill battle. The memory, forgetfulness and the seemingly uncontrollable weight gain. I work out really hard to keep it under control. I now also have bilateral vestibular hypofunction which has made it hard to keep up with my workout routine, since now I have no balance. This was not associated with my Hashimotos this came from a fall. I guess now I will have to completely give up the white stuff in my diet. For those of you that can exercise normally I strongly recommend running , that truly was the best way I found to work it off and keep it off. When I do get to a point that I can run without fear of falling I will be back at it. Just fight for the right doctors that will listen to you. We know our own bodies best! Good luck everyone!
Janet on February 21, 2014:
Thank you for this. Just...thank you. I hope your recovery can continue and you find some happiness. That goes for all of us Hashis. At least we have each other.
Kristen on February 21, 2014:
Depressed and drinking thinking of my life....
Christin Berger on February 21, 2014:
YES!!! It took me over 20 years to get diagnosed and over 10 to get adequately treated. I now have an excellent endo and feel like I have my life back for the most part. :)
Mindy on February 21, 2014:
The part about your music made me tear up. I was a performer too. Singing is what made me happy. I have no desire to pursue it and it makes me sad...I hate this disease!
Terrilynn on February 21, 2014:
You have summed up everything I have wanted to say. Thank you ..
Tammy on February 21, 2014:
I know how you feel. I have suffered with it since 2001 and I probally had it much longer than before the doctor stated that was what it was. I've been called crazy, fat and lazy. Sometimes it feels like you don't even have the energy to take a breath.
Michelle on February 13, 2014:
Diatomaceous Earth - Food Grade. Please research it .. then I highly advise trying it! Start slow(its a detox so drink lots of water thru the day to flush out the toxins, parasites), 1 tsp a day, working your way up to 2 tbls 2x a day. I was introduced to it 2 months ago but wish it was years ago!! I paid $20 for 1kg/2 lbs. Dont pay much more than that as it will be a rip off. Then reap the benefits!!
Amy on February 08, 2014:
Cont.. else and that's very limited. I dont even like to be around others anymore. I dont know who I am anymore. The only upside was about 3 months ago I started a paleo diet. I have since lost 20 lbs, lost all edema in my legs, muscles cramps have decreased alot, and I definitely have more energy. but it has not helped with my mind at all. My memory loss , anxiety and anger are the same if not worse. But please, anyone reading this please consider the paleo diet. Its tough to start but the improvement you will see with your hashi symptoms make it worth it. If you have questions or need some pointers email me at firstname.lastname@example.org. and if anyone has suggestions on improving the mental problems please email me. Sorry for the long, broken post. My computer sti nks
Amy on February 08, 2014:
Cont.. else and that's very limited. I dont even like to be around others anymore. I dont know who I am anymore. The only upside was about 3 months ago I started a paleo diet. I have since lost 20 lbs, lost all edema in my legs, muscles cramps have decreased alot, and I definitely have more energy. but it has not helped with my mind at all. My memory loss , anxiety and anger are the same if not worse. But please, anyone reading this please consider the paleo diet. Its tough to start but the improvement you will see with your hashi symptoms make it worth it. If you have questions or need some pointers email me at email@example.com. and if anyone has suggestions on improving the mental problems please email me. Sorry for the long, broken post. My computer sti nks
Amy on February 08, 2014:
Cont.. else and thats very limited. I dont even like to be around others anymore. I dont know who I am anymore. The only upside was about 3 months ago I started a paleo diet. I have since lost 20 lbs, lost all edema in my legs, muscles cramps have decreased alot, and I definately have more energy. but it has not helped with my mind at all. My memory loss , anxiety and anger are the same if not worse. But please, anyone reading this please consider the paleo diet. Its tough to start but the improvement you will see with your hashi symptoms make it worth it. If you have questions or need some pointers email me at firstname.lastname@example.org. and if anyone has suggestions on improving the mental problems please email me. Sorry for the long, broken post. My computer sti nks
Amy on February 08, 2014:
Cont.., headaches, etc.. I also had damage to parathyroids from surgery so I have low Calcium symptoms. I often think I would prefer death to living with Hashi's. What happened to the girl who had all that energy, who was up for anything, who was always eager to help others either as a mother, as a nurse or as a friend. I have enough energy for my family now and nothing
Amy on February 08, 2014:
Its good to know I'm not alone. My thyroid issues started when I was 13. A year after taking meds I was told hypothyroidism went away. 34 years later, after years of thyroid symptoms but negative test results, I have total thyroidectomy for papillary cancer. I felt relief knowing that I was not crazy and may be able to feel good again. Then I was diagnosed with hashi's after surgery. For six months after surgery I suffered with every symptom of hash's. Including extereme fatigue, charlie horse like muscle cramps
Christy on January 14, 2014:
I read this several times a week, I swear you have to be one of the only people to whom I can relate. I'm also a singer- a rock musician, too- my entire life was creativity, expression, and music. Then I started to change with symptoms I didn't even acknowledge at first, they were so subtle. Years later and all of the physical symptoms stop me from being able to play at the level I'm trained for, in fact, many people wonder what happened because it seems I've gotten "worse" at my instrument and singing, not just rusty out-of-practice... and the mental side of this disease has made me such an exhausted, dense, depressed zombie that I can't even participate in music willingly anymore because it breaks my heart rather than provides sanctuary. People don't get it. Sometimes I think that if I had any other disease, even if it was gnarly like cancer or something, I might have the audacity to prefer it... at least that way I could have my personality back. At least that way people would understand that I was seriously sick and I would be given some slack, not assumed to be a lazy hypochondriac. This damn disease has crippled my finances and my ability to hold a regular job (been on the verge of being fired for my "slow" results so often that I quit two jobs before they could make the blow), so I'm struggling to even afford the testing for this stuff. I sincerely hope things have changed for you, and thank you for writing out the words I wish I could express on my own. You're not alone :(
Renee on January 12, 2014:
Sorry, In my comment above I meant that Melatonin can help - not Cortisol - OH Dear! There is the Hashi's Brain working again!
Eliza on January 11, 2014:
This describes my current life so well.
About four months ago I tried to kill myself. I would get angry for no reason,I was always cold, I was always tired even though I slept 12-14 hours a day, I was extremely depressed even though I live a good life, I kept gaining weight even though I was eating less and less, and my grades were awful(I'm 15). I had no idea what was wrong with me.
The night I went to the emergency room the doctors drew my blood. While I was in the psych ward I was told my TSH levels were high and it was retested. My levels were normal the second time and the situation was ignored. When I was released from the hospital I did my own research about hypothyroidism and Hashimoto's.
Three months passed and I was stilling feeling awful so I convinced my mom to take me to a endo to get tested again. This time my TSH was high again so I started synthroid earlier this week. Thank you so much for sharing your story I was feeling so alone.
email@example.com on January 11, 2014:
I feel ya! My Hashimoto's, I believe (through research, and my experience) was caused by gluten exposure over my lifetime. Two and a half years ago, I quit gluten and got my life back. Thyroid treatment alone, did not work. I lost my six figure career, my home, my husband and my child (who opted to go live with her Dad, instead of living with the crazed, walking dead), and much, much more. I was on no less than 10 different meds for all my symptoms, including a large amount for mental health issues. Now I take only my thyroid med, because alas, the damage is done. I recently was accidentally exposed to gluten. My body started to push out a response, in the form of antibodies, and now my thyroid is under attack again. My symptoms have returned. I know it will be short lived, but it certainly a huge reminder of the Gluten/thyroid connection. Migraine, mental confusion, poor decision making skills, memory loss, ataxia, anxiety, paranoia, racing thoughts and more are right back on my doorstep like they never left. It really is a lot like being drunk, without the buzz. Everything my cerebellum is in control of is in disarray. So my quick message to anyone reading is this: Gluten free is not a buzz term, it is not a craze, or a fad. It is a LIFE SAVING/CHANGING, move you can make, to save yourself. I HAVE MY LIFE BACK!!! Besides this minor set back with the exposure, I am back working in the same great career, I live in a lovely place with my Husband (the same one) and my daughter is back in my life. Best wishes to you all. YOU CAN SAVE YOU!!!!
Renee on January 09, 2014:
I was diagnosed appox. 7 years ago in my late 20's. I know now that I have had this disease since I was at least 13. Thyroid disease runs in my family. My cousin was the youngest person in Australia to have her thyroid removed. I am hearing you with all of the above posts!!!
Here are some things that may help you all - as experienced and proven to do some good - by me (a long term sufferer)
-Preservatives of any kind
-Chemicals in the home
-Chemicals on your body - This is a big one. Hashi's hates toxins. Creams, lotions, potions etc - Get the book THE CHEMICAL MAZE and use it like your bible. Your health will thank you for it.
-Late nights (just a big, fat no no!) :)
-Natural Thyroid extract - Synthetic is pathetic!!!
-Wild Rose/Crab Apple Bach flower remedies (2 drops of each in water per day to help with anxiety, stress etc)
-Cortisol can help, as can DHEA
-Get an absolute MIN of 8hrs sleep a day
-Believe all endo's are good for you! If they are not helping you and not taking you seriously - keep changing until you find one that listens and understands. In my experience, the best doctors are the ones that have Hashi's!!! They get it - simple as that!
-Overload yourself with tasks. The shopping gives me anxiety attacks when I am having a bad day. The smallest things can set you off, but just allow it to happen and try to go with the flow. If you worry about it, you will just become worse (I am still trying to master this myself!)
REMEMBER - symptoms can come and go. I have good days and bad days. (Seemingly for no reason) BUT Life can get better. Be in control of your own health and do not settle for second best! You know your body (and your mind) better than anyone else.
Mary on December 29, 2013:
great description. This is me....
Karen on December 28, 2013:
I too have Hashimoto's and took Synthroid and Armor Thyroid for several years. I lost my insurance several years ago and couldn't afford the meds but wasn't to upset because they were not working so well anyway. I started using doTERRA's Lifelong Vitality Kit supplements and using peppermint and lemongrass essential oils. I use other essential oils to help with anxiety and while it was a gradual change taking about a month for all my symptoms to away they are gone and I feel like I did as a teenager.
I get blood work done every 6mo at a local clinic and my numbers are better than they have been since before I was diagnosed. A plus is when I get sick I also use essential oils (50-70x stronger than herbs) and am always better in hours rather than the days it takes my friends.
If anyone is interested in knowing more please feel free to message me via my FB page. www.facebook.com/kldoterra
Jade on December 27, 2013:
That was my life but not any more. It takes time after getting good treatment, but better days do come.
leadora on December 27, 2013:
I wouldn't wish this disease on my enemy!
Jennifer on December 27, 2013:
God Bless you for sharing and moving forward. I suffer the same disease, but now being over 40, it gets harder and harder to not just give up. I hope you reaching out helps someone some where.
beth milinski on December 27, 2013:
I was dignosed in 1997 after my first child in 1996.....during my second and third pregnancies my tsh was normal. After our 3 rd child I was diagnosed w/ Hashimotos and put on synthroid in 2004. I have NEVER been symptom free but the drs keep telling me my levels are normal so it must be something else......I have put on sooooo muchweight and no matter what I do I am lucky to lose a few pounds. No one in my life understands or tries to. I have no one who can relate to this at all.
Your post is so true and I want to thank you for being so open and honest!
Ana Marques on December 27, 2013:
Hi, i'm from Portugal and got here through Thyroid Sexy. I saw myself in your words. It's so hard to deal with this disease... My Endocrinologist doesn't care about me and says that my levels aren't that abnormal and ignores my sympthoms...
Thank you for writing.
SamanthaC on December 27, 2013:
Wow! This is pretty familiar to me. My anxiety nearly cost me everything. And none of the meds the doctors prescribed were helping. My Endo said my thyroid levels were "fine" but I still had a lot of weight gain, anxiety, exhaustion, etc. She agreed to add cytomel and it helped with the exhaustion (its by no means great now, but its better). Then I gave up gluten and that has made the only difference in my anxiety. So now with a cocktail of medications (Zoloft, Synthroid, Cytomel, Ativan as needed, Prilosec, Zyrtec, Victoza-I also have metabolic syndrome and polycystic ovaries) I can manage the day to day. I can function. Some days are better than others and I take those days and use them to the fullest when they come! Its always nice to hear from another hashi's sufferer to know that you are not alone and its not all in your head! Thanks for sharing!
Wendi on December 27, 2013:
I was diagnosed with this disease in 2001. My family and friends believe that since I take medication I should
Be totally fine. Reading this made me feel like I'm not alone. Thank you
Jenifer on December 16, 2013:
Now i know im not crazy why cant doctors see this
Kathy on December 05, 2013:
Scarlett, Thank you for this post. I was diagnosed earlier this years with Hashi's but I was also diagnosed at the same time with Graves. At first, I didn't realize ALL of the impacts of these diseases. I just thought that I had to go to the doctor, get blood work done and take a little pill daily.
But then - other things started really happening. I couldn't keep up with housework anymore, my temper became worse, I lacked in patience. I couldn't focus. My TSH levels have gone from an initial 40 something to over a 150 then down to a 3.28 and now back to a 28. I was initially put on Levo - but I dropped 18 lbs in one month (bad for me, I am underweight as it is) and was subsequently put on Synthroid. I'm now up to a dosage of 125 on the Synthroid - and yet my TSH is climbing again? (I also take 50,000iu of Vitamin D weekely).
I've also self medicated with the alcohol in order to combat the anxiety and my nerves. When I do that - I make things even worse.
This past weekend - I blew up at my fiance's family. It has likely caused up to break up and a wedding that was scheduled for 45 days from now is being cancelled. Funny thing is - I don't even know why I lost my temper. I just DID. And then when I read, I see where person after person who has these diseases has done things like lose their temper, suffer from crazy anxiety, have a complete lack of interest in day to day activities...its so sad.
Thanks for writing this. It means a lot to those of us who are also suffering.
Maps94 on November 17, 2013:
Scarlett, thank you so much for this post. I am having a really rough time with this disease. I can deal with most of the symptoms, which are identical to yours, but the one I struggle with the most is the "not feeling" symptom. Give me all the other parts to this disease but please give me back my joy and happiness. I am NOT depressed just without feeling. I hate this part and if anyone, anywhere out there can help me with this part of this horrible disease I would be forever grateful. The things that normally brought pleasure and humble tears to my eyes has been robbed from me. Whoever reads this and understands where I'm at here please get back to me. I do not want to live without those feelings. I've been through a lot in my life including the death of a son but at least I was able to feel those feelings and try to recover somewhat from it. This is completely different. Please help. Desperate. My email is: Mps94@cs.com
AngelWingsforLife on November 16, 2013:
You are NOT alone.
Stevland Ambrose on November 15, 2013:
Yikes! Can I ever relate to this Scarlett's experience suffering from undiagnosed Hashimoto's Thyroiditis.
I, too, suffered from depression, anxiety, alcoholism, and unexplainable fatigue.
In my case, after seeing a barrage of health care professionals, I finally consulted with one who seems to actually understand thyroid issues. He recommended that I try going gluten-free, and that advice was the best thing that ever happened to me. I feel like myself again!
To anyone who can relate to Scarlett's story: you owe it to yourself to try going COMPLETELY GLUTEN-FREE!
I used to think that gluten-free sounded like a horrible fate. But now, when people ask me if it's hard, my answer is a resounding "NO!" Compared to feeling like a zombie, gluten-free has made my life easy, enjoyable and fun!
I am SO thankful that I feel like myself again. :)
Shanna-Marie on November 15, 2013:
^ I'm Shanna, please look me up. It's easier to deal with knowing I'm not alone.
Shanna on November 15, 2013:
You've hit the nail on the head. Every word, every symptom, even the bipolar diagnosis.
Shortly after my first daughter born in 1999, I saw a doctor for all of fifteen minutes, who informed me that I was bipolar and sent me of with prescriptions. For three years I took the medication and kept getting worse. Meds were switched and increased until I could barely remember left from right. By 2002, I wasn't keeping up with the house, I was sleeping all the time. I was pregnantwith mysecond daughter. My children were removed and I was drug tested, though I'd never done illegal drugs. I spent the next year working to get them back, trying to convince a broken system that I wasn't too crazy to have my own children.
A court ordered psych evaluation proved I don't have bipolar, but medical doctors had only diagnosed me with fibromyalgia. I knew there was more.
In 2003, I'd spent one-third of my pregnancy in a homeless shelter, plus another two months after my second daughter was born. I had to prove my parenting skills, and my mental stability before my other children would be returned. I was able to bring them home by the end of 2003.
In another year, I had a relapse. No answers from doctors, but I had migraines, irritable bowl syndrome, tinnitus, low blood pressure, hiatal hernia, shortness of breath, panic attacks, dizzy spells, and the list went on.
By 2006 I was having urinary tract infections several times a year, sometimes urinating the color of coffee, sometimes bright red blood. Still no answers.
The weight gain began around 2007, but it fluctuated wildly. I was still relatively thin until 2009. I gained thirty pounds in a month. My bra size increased three sizes and I was given a mammogram because of my fibrous tissue. I lost another job because of another round of tests, sometimes three or fours days a week. I had tilt table tests for the dizzy spells, and was told I have orthostatic hypotension. Still no answers and the doctor got frustrated. He told me it must be fibromyalgia. He acknowledged, but downplayed my enlarged thyroid, just as every doctor since I was seventeen had done.
In 2010 I began to have fevers of unknown origin, the severe exhaustion was back, and horrible inflammation that makes my body feel like it's on fire. More weight gain. Blood pressure spiking. Louder tinnitus. Vision deterioration. Memory loss. Confusion.
Finally I was referred to an endocrinologist, who diagnosed me with Hashimoto's, full blown hypothyroid, and very low Cortisol. This time I was prescribed Synthroid. I began to get my life back.
A year later, more exhaustion, and i hadn't lost any weight. My synthroid was increased, but the inflammation was worse. Stress seems to spike the symptoms, and with an anxiety disorder it's a vicious cycle.
Another endo in 2012. It took months to convince her to give me Armour, but the switch helped. My conversion of T3/T4 is off. If this doesn't work, it's back to synthroid with another med to boost the conversion.
I have sole legal custody of my kids. I work. I write. I run a mentoring program at the homeless shelter. I'm pushing myself to do more, and to advocate for myself, but the stigma is still there.
People want simple answers and it's easier to pass it off as mental illness than to try to understand invisible illnesses and why bodies attack themselves.
This is hell.
Dee on November 14, 2013:
You're so amazing! Having the courage saying all of those. I was also diagnosed with Hashimoto a couple of years back, but I can't tell you when, I don't remember it well, for me it was as if it was only last year. I've discarded all medication, against doctor advice, they made me feeling much much worse. Mood changing, weak immune system, blank memories, suicide attempts... Now I try to live with it day by day. My body keep screaming at me, but I refused taking anymore medication. Noone believed me when I told them I'm not feeling well, not even my family; they all told me it's simply in your head, you only want attention... Now I simply suffer in silent, I refused telling anybody whenever it's too unbearable. They can say whatever they want, I know what my body is screaming at me.
jenny on November 12, 2013:
This is not fibromyalgia - there's no pain, whereas fibromyalgia is diagnosed via exclusion of all other causes of diffuse systemic pain.
I'm going to be a medical doctor. I am in training. The memory loss is frustrating, the words are lost in my mouth, people don't understand what is causing you to act the way you do and they don't care, they just assume you're crazy and ignore you. I'm on both sides of this conversation as a patient and a future doctor. This is a real metabolic/rheumatoid disorder. Endocrinologists will think you have diabetes because that's what they see and the last person you'd get referred to is the first person you should've went to - the Rheumatologist - who had treated tons of people with hypothyroidism that doesn't respond to conventional treatment. I had an enlightening conversation with one who has almost 4 decades of experience treating this disease who taught as a guest lecturer. In 10 minutes she made me get up the nerve to keep challenging my doctors until they give me the tests I need and the proper treatment I need. Levothyroxine is the generic that works well with 70%+ of the patient population with hypothyroidism. Hashimoto's does not respond to it well, you need the brand-name Synthroid because of their consistent activity levels or Armor Thyroid because you can't convert T3. Most doctors hesitate to prescribe high levels of Levothyroxine b/c of side-effects. My doctor told me Amour thyroid is a low-dose non-drug placebo in most cases because of how little action you get. He doesn't get that even that little bit of T3 may make a difference. At least this time I'm getting the antibody testing done instead of just getting told my TSH is "normal range" but too high for my age again. I've never had anxiety as bad as lately before and now I know why. I don't know why doctors resist testing for Hashimoto's, maybe it might have something to do with lack of data and insurance payments. But you just have to keep trying, keep hoping, one day that moment will come. Doctors are people too, they make mistakes, you just have to keep telling them you know something's wrong with you and they need to find out what. If they can't do that, they're not helping you and you don't need them. The hard part is, getting someone to believe you have something they couldn't diagnose in 5 minutes with a rapid lab test.
Sarah on November 06, 2013:
After trawling through the Internet for months I have found your article and it is like reading a book about myself! The memory loss mid sentence, forgetting the names of objects or people, incredibly exhausting fatigue...THANK YOU FROM THE BOTTOM OF MY ACHING HEART. Three months on Thyroxine and I feel about 1% better. Looking at diet as a next step.
Jaxson on October 30, 2013:
This sounds so much like Fibromyalgia. Is there a specific test for it? An in depth test?
Ally on October 27, 2013:
Thank you for sharing your story - I could relate in many ways to it. I am a fellow autoimmune thyroid disease sufferer (diagnosed with Graves' in 2010, then went into remission for a short period after treatment, and then with Hashi's last year.) I was relatively asymptomatic for a while as my thyroid levels tend to fluctuate but are usually still in the "normal" range (minus some trouble losing weight and being bloated at times) but more recently have been battling extreme anxiety/hypochondria which I do believe is at least in part related to my Hashi's. Therapy has been helping somewhat, but I am attempting to research ways to lower my autoimmune response including seeing a functional dr. to discuss supplements (I recently learned I'm vitamin D deficient) and diet changes that may help (cutting out gluten may be a route I try, despite my love for pasta and beer.) This disease is difficult in so many ways, but the toughest for me is that I feel no one really understands/can relate, and people assume I'm fine and everything is "in my head" because I don't look sick. While I don't want anyone to go through this, being we are, it is nice to know there are people out there who get it. I hope that you're able to better manage your symptoms - it sounds like you are on the right path!
Michelle on October 27, 2013:
Reading this was like reading a description of my life for the last 20 years. Thank you so much for sharing this.
Paula Bennett on October 27, 2013:
I am a fellow zombie, well, former zombie. I was horribly sick, prayed to die, etc....because I felt u had no other choice, I went on the Marshall Protocol. Started by the autoimmunity research foundation, this protocol treats the cause of autoimmune illness and does not just seek to palliate it. This is new research, but is gaining momentum within the medical community.
Lynn Barsich Farr from Gainesville, Georgia on October 27, 2013:
I saw your link (From Thyroid Sexy) on Facebook. *sigh*...reading about what others go through makes me want to shout from the top of a mountain...I'm NOT THE ONLY ONE!!! My anxiety and brain fog is so bad right now. I'm a teacher--so I look like a bumbling idiot when I try to teach a lesson--and forget the vocabulary or process. I have to work 2x as hard to make sure I don't forget anything. I have 2 children in their teens. Sometimes I think they look at their mother like a feeble crazy woman. Somedays, I can't tolerate noise or cry at the drop of a hat. I wish they understood--but they are just kids. I thank you for starting this post...reading how it touches others is enlightening and I don't feel as alone. Thank you.
Jessica on October 27, 2013:
My Husband is going through the SAME THING! He talks about suicide alot and things about doing drugs just to take the pain away. He has been out of work for 5 months now and cant do everyday things. His anxiety has taken over him. He also has severe panic attacks out of nowhere. His Dr says this cant be coming from the Hashimotos that it has to be coming from somewhere else. His depression is so bad. He was on Levothyroxin but just switched to Armour thyroid about a week ago but I want him to try Nature Thyroid. If anyone wants to talk please do. My Husband needs help and hes not getting it fast enough. You can either message me on facebook or email me at Moonshine084@aol.com PLeas esomeone HELP!
Laura Lang1 on October 27, 2013:
Wow, I too am a musician and have also had troubles with my voice. My once creative side is now harder and harder to find. I was diagnosed with Hashimotos in 2004. I find a level that I can live with and then the tiniest life event or stress can throw me off. I am recognizing that my once flawless memory is filling up with holes. It is quite scary! Thank you for touching on the details of this disease. It speaks to many of us.