A heartfelt letter from the Founder of Thyroid Nation about living with Hashimoto’s Disease, inspired by Donna Lynne-Larson, and her wonderful Hashimoto’s Film!
If you aren’t being heard, speak your truth by sharing this article with friends, family members and most importantly, your healthcare professional!
Mr. Hashimoto wants to have a fling with me… and my thyroid.
But I will not surrender my body or soul to him. Oh, he wants me to, be sure of that. He even pretends to BE me, but I won’t let him. He may act like me and try to take over my body at times, but it’s not because I want him to or allow him to. I have no control over here… I cannot help it!
Mr. Hashimoto is tricky like that.
I cannot help it that I am ill. Not to mention, Hashimoto’s Disease is an “invisible” illness, one that most people cannot see. It is an autoimmune disease, a chronic illness that I do not want and didn’t ask for. Evidently, it really wants me.
It has attacked my thyroid gland and caused me to develop hypothyroidism. Or was it the other way around? This thing, this Mr. Hashimoto, has me so confused. I battle constant brain fog and fatigue. There are times when I don’t make much sense and, sometimes, I cannot find the words I want to use. That was actually one of the first “red flags” that Mr. Hashimoto wanted to control me, to own me, or at the very least, to have an affair with me.
For me, it was like a slap in the face. Sudden, immediate and painful.
I get it. I’m kinda cute. 🙂 And fun, or at least, I used to be. I used to have an abundance of energy and was a night owl. Or was that my circadian rhythm trying to tell me something? I didn’t even know what that was when I was younger.
Now, it’s difficult to do even the most mundane tasks. I remember the days that I could just be normal. Although, I had no idea my normal was not really normal. I’d take that old ‘normal’ back in a heartbeat. I’m not entirely sure I know what normal is nowadays.
How long has this specter, this stalker, been invading my body and trying to take over my brain? My entire adult life? So, perhaps I never really had a normal.
This has been going on for years. Years… and I did not know. How could I not have known? I feel a bit embarrassed by that, but, also extremely validated, in a way.
Over the last few years, I often wondered why I couldn’t find the words I wanted to use and why I was so tired all the time. Did I have this since my teen years? I believe I had hypothyroidism in my youth and was never diagnosed.
Hashimoto’s Disease has been after me for years, evidently. It is not nice and has a long list of symptoms that it tries, and often succeeds at saddling me with…
Where was this information 30 years ago? Hidden in an Encyclopedia? Does anyone even remember what those are?
I couldn’t see this secret attack or even hear it. How is that even fair? Isn’t an affair, a 2-way street? It is. I thought. Sometimes you just don’t realize it is happening to you. Is that possible, to have an affair and not know? Undoubtedly, because here I am, living proof.
I have been stalked, attacked, and my personal being compromised.
Where did that severe pain came from? One moment, I am doing fine and then BAM, my good mood is gone and I am suddenly, terribly achy all over. Entirely out of the left field. And then, I feel like I’m in left field. Somewhere in the wild where no one understands me.
Hashimoto’s is so much more advanced and experienced than I. My sleeping patterns were off. It seemed not normal, unnatural. But then, it was my normal, so. I got used to it.
Wow! Those are powerful words….’I GOT USED TO IT!’
I got used to a lot of things, obviously. I do remember asking questions. First, to my parents. But, how could they have known? Then I asked countless doctors about my symptoms, should they have known? Then I asked specialists, therapists, and psychologists. All of them smart, educated professionals, right? I didn’t question their abilities. OR, their answers. I took them as facts and so, I suffered on.
I was having an unwanted, unwelcome, and all-consuming affair.
I remember, barely, since my memory isn’t what it used to be, wondering why my legs itched, profusely. So much so, that I would give myself grey scars on my lower legs. ‘Dry skin’, I was told. Use lotion. So I did, but it didn’t help. I accepted that as normal. I still have itchy legs. I’m working on healing. I haven’t found my normal, but I will.
Why were my teeth being filed down, in the middle of the night? Sometimes, it would cause me to have headaches in the morning. TMJ. Oh, that explains it. Or does it. Did I ever wonder WHY? Or, did I just accept it as normal? My normal.
Now, I realize that ‘my’ symptoms, weren’t and aren’t, supposed to be anyone’s normal.
My feet and hands and tip of my nose, and even my hiney, were ALWAYS cold. Didn’t matter what the temperature was. I definitely remember asking about that. (I was the one who always carried socks in my purse) Poor circulation was the answer. Oh, OK. OK? Not OK! To this very day, at this very moment, I have cold hands, freezing feet, a chilly nose, and a frosty derriere. At least I now know why!
What about my never-ending headaches? I’m a true professional at having awful headaches and still being able to function. Ask any of my friends or family members. Could magnesium supplements have helped me?
What about my extreme fatigue getting worse? Being overly tired and needing a nap, became part of my new routine. Then, out of the blue, I would struggle with insomnia.
Why was I anxious and sometimes depressed? That didn’t seem to jive with my happy self. Or was I really happy? I think I was. I thought I was.
When did my symptoms truly become worse? Why was I suddenly bloated every day of the month? Why are my eyelids swollen? Well they have always been a tad puffy. Puffier than most. Maybe I was given long, pretty and curly eyelashes as a consolation prize? Hmmm…..that Mr. Hashimoto.
Now, everyone I see with puffy eyelids, I KNOW they, too, have some sort of thyroid issue. Where was this information before? Surely, it was out there. And, come to find out, it was, many, many years ago. Before pharmaceuticals took over the medical profession.
I was never the kind of girl that could grow long, lovely fingernails, either. My friends could. Not me. Only now, after taking Pure Encapsulations Nutrient 950 with Vitamin K, do they grow. I’m so proud of them, too.
Dry, brittle hair! Losing hair! Just me, part of me. Part of my flaws. Part of my ‘normal’ … or, so I believed.
And WHY OH WHY, was it more difficult for me to lose weight? Dieting was part of my daily vocabulary for so many years, even though I was a cheerleader and a dancer. In good shape. Skinny for most of my life. But, there were times. Times when I wasn’t, when this secret affair would sneak up on me. My friends and ESPECIALLY my family, would wonder about my weight? Why is THAT the thing everyone was concerned about? (that is for another blog post).
They would offer to ‘buy’ me if I would ‘just lose weight’. A trip to New York, even. (That one did happen, I was 17 and my mom and I took an amazing trip to New York City. I was still at a skinny point, I imagine.)
Shopping and buying clothes, back then, sounded amazing. But, why? Why was it so important to them, for me to be thin? I’m still working that one out. I just wanted to be accepted. Shoot, I had ‘accepted’ many things in my life. My not-so NORMAL normal, for one.
Just another thing that I chalked up to as being ‘unfair’ or ‘unique’ to me.
How many of these autoimmune diseases do I have, besides the one I share with Mr. Hashimoto? And, that DEFINITELY sounds crazy. I must be a hypochondriac. Or, so I was oftentimes told.
Why and when did I start wanting to stay at home? In bed? Only being motivated to do something, if and only if, it was something I TRULY wanted to do. Otherwise. I just didn’t. I guess I was lazy. Yes, lazy, that is a word I remember hearing frequently.
Now I know, that I had an invisible illness and secret affair going on. Explain that one nowadays, without getting ‘crazy’ looks.
Planning things and looking forward to things, were sketchy. One moment I was ‘gung-ho’ and the next, I wasn’t. Well, just part of being me. My normal. I’ll add that to the list of growing flaws.
I didn’t want this affair. I was chosen. Why me? Oh yeah, I’m kinda cute and fun. Well sometimes, not so much anymore, maybe.
Am I fun? Maybe I’m not. Is my mind playing tricks on me? I must be crazy. I feel crazy. My brain is all over the place. Up and down. Yes, I was/am definitely crazy. I mean, my great grandmother died in a mental institution. It probably runs in the family, right?
Actually, Hypothyroidism does run in my family I learned, many years too late. Was Mr. Hashimoto having an affair with my family members as well? Did they know? Did the doctors know? Did they question? Did they run tests? And if so, the right ones? Apparently NOT, for my great grandmother. To this day, as I type, my family members don’t even know about the correlation. Hypothyroidism, Hashimoto’s, Thyroid issues are connected to mental health. In most of the cases. Makes you wonder about Robin Williams. Hmmm…
And, from what I’ve learned, a little too late, I now believe that ALL psychologists, psychiatrists, and therapists should be ‘required’ to do vitamin, mineral and thyroid testing BEFORE they prescribe.
If I told my family about this connection, they would probably think I was listening and believing in all that newfangled naturopathic, hocus pocus. “Go to a REAL doctor!” My mom and dad BOTH just told me that, last month. They know I write a blog. They must not read it. I’m not even sure if they’ve ever listened to my radio show, Thyroid Nation RADIO. Hopefully.
I’m starting to put a few pieces together and I’m betting that my great grandmother was not insane. Her thyroid probably was. It was bonkers. Her thyroid was demanding to be seen. It was doing flips and yelling and screaming at times, I bet. But it was invisible. No one saw or heard her thyroid. They saw her outside appearance only. No one thought to check her insides, I’m guessing. THAT to me, is crazy. To not do a thorough diagnostic on the body, especially in mental health situations. What do I know? I’m just the great-granddaughter. There are no public records, so, maybe they did. I sincerely doubt it. It seems so unfair to me that her legacy is such that her daughters and granddaughters don’t want to talk about her existence, because of her issues. It was an unwanted, unavoidable, secret affair that they don’t want to uncover, maybe. None of them, the doctors or the institutions. Is one of the reasons because the big drug companies just want to give more pills and make more money?
That HAS to be it.
Otherwise, the new ATA Guidelines wouldn’t want to crucify any doctor or specialist that doesn’t prescribe first, Synthroid and 2nd, a trip to the psychologist, psychiatrist, or local therapist. Not offering any other options. I just shake my head. It seems like we’ve come so far as a society and then something like this happens. Disappointing to say the least.
My lymph nodes were always swollen. And painful. Sometimes, my neck area was in so much pain, that I couldn’t sleep on one side of my head. Or the other. It happened so frequently. It was just my body fighting something off, and the doctors agreed.
Well, that may be true. Was probably true. But, WHY? I did ask that. I started to wise up. I started to wonder. To question. To ask. I wanted to know why! The answer was, “It is just YOUR body’s way of handling a virus or bacteria or illness.” What illness? Sometimes, I didn’t feel like I had one. Was I already having an affair with Hashimoto? I think back and wonder. I was told I should feel lucky, that my body, my immune system was working. That, at least it was functioning and doing its job. Was it? Did it need help? Was it begging for support? Were my nutrients being absorbed properly? Did I need supplementation? Was my immune system in cahoots with Mr. Hashimoto?
What else don’t I know about Mr. Hashimoto and his desires?
The doctors should have asked me, “Did you have any accidents, trauma?” “Yes, I was suffocating and had to be turned 3 times in the womb, to untangle the umbilical cord. And I fell out of a 2-story window when I was 3.” And, “Did you have any viruses or bacterial infections? And did you ever really, fully recover from them?” (I know I didn’t!) They didn’t ask those questions, although I offered them up on several occasions. “I also had Spinal Meningitis, when I was 5. Did that play a role in any of this?” The doctors said profusely, “No!” Eventually, I stopped mentioning all of it. Were they really not trained to ask some of these questions?
You can read about one of my ‘purposeful’ accidents, here. I was turning 40 and wanted to bring it in with a bang, boy did I ever. Oops. I think that was one of my final triggers to feeling as horrible as I do today. AND, not being able to just go through life, living through what I thought was normal.
It doesn’t matter the cause, because Mr. Hashimoto likes me.
Does he like you, too? Is he evil? Does he play tricks on you? Does he think he is funny? Is he trying to confuse you like he does me—and my doctors? Does he want them to misdiagnose, un-diagnose, re-diagnose, or just prescribe the wrong kinds of medication for years and years? Until you are miserable. Does he have a long wish list, kind of like for Santa, of symptoms he wishes to apply to you? If so, they are on the ‘naughty’ list.
Do you have serious hormonal issues? Or do you even know?
I never knew. I didn’t know anything about any of my hormones, much less ask about them. I must have had problems with them since my teen years, based on what I know now. How was I to know back then, that maybe my DHEA, progesterone, estrogen, testosterone or thyroid hormones were out of whack, much less that I had a thyroid problem? Especially when their TSH normal range, isn’t normal for me. Or for anyone else?
What about high cholesterol, miscarriages, bad teeth, gall bladder, blood pressure, [high or low?] blood sugar, or heart issues, among others? Do you suffer from any of those? If so, he could be having an affair with you, as well.
I was the only one that was constipated every day, out of all my friends in high school. So, I didn’t talk about it. Who wants to talk about that anyway? Not I. They went about with their daily “routine” and I suffered. I also had IBS. One of the only people out of all of my friends who did. Why was I so lucky? I still suffer, but now I am aware. I have learned and am taking the necessary steps to reverse this uncomfortable symptom.
Cracked heels? “Well, if you don’t have them now, you will, since you are so much like me,” my mother often told me. And I did, right after my first pregnancy.
“Some of these things, you just get from your mom, honey!” she said. EXACTLY. Don’t you see mom, I get these lovely symptoms from you. And you from your mom. Part of it is hereditary. But WHY, mom? Aren’t you concerned with the why? Because if I do have hypothyroidism, maybe there is something you or I, or both of us can DO about it. Something we should be doing about it. Getting blood work, getting a diagnosis, getting on medication, if need be or just supplementing with vitamins, minerals and the things our bodies are deficient in.
Ding! Ding! Ding! Winner. You’ve nailed it. But no. She never questioned. We weren’t taught to. How can I blame HER or me?
Family, loved ones, co-workers, neighbors, acquaintances, and students probably listen to us and just get tired of it. They are tired of hearing that we don’t feel good, that we are ill, that we don’t want to do anything, that we have no energy, even though we had a bit of it, just a few hours ago. I bet they are thinking, “He/she must be crazy. She looks, seems, and acts fine. She was just dancing with her son at his graduation dinner last night and having a ball.” She must be a hypochondriac.
None of them knowing, except for my poor husband and 2 kids, what it took to get me to that dinner. They have no way of knowing that I suffered, with a smile on my face and an Advil in my belly. And all sorts of lifestyle changes and sacrifices.
Of course, I left early. But, that’s just because I didn’t want to stay, right? No.
Not to mention that when I got home, I was more than exhausted. I will suffer for a few days, and my body will pay for that outing. No one will know. I will see them on Tuesday or Wednesday and I will smile and they will inadvertently think, yep, she is definitely NOT as sick as she says she is.
I don’t like having this secret affair with Mr. Hashimoto. It is no fun and very painful and hurtful in many ways.
Does Hashimoto’s ‘Holiday’ wish list include giving you or I gift cards for massages, therapy sessions, Reiki sessions, a TENs unit, a slew of fabulous essential oils, acupuncture and chiropractor visits because he knows and understand just how debilitating his effects on us are? I hope so, because I need all of that, just to make it through the day. BTW, I can’t afford all of those wonderful tools. So, there’s that.
Does he think he can get away with this? That I or we, won’t catch on? Does he also know that we aren’t being taking seriously by our loved ones? Is he just sitting back, enjoying his cigar, dinner jacket on, puffing away and laughing at us?
Have you heard any of these? A few of my favorites:
- “If you just lost some weight, you’d feel much better and the symptoms would vanish!” (that simple, eh?)
- “You’re just having an off day, it will be better tomorrow.” (can’t wait!)
- “You just need to exercise. Go outside. Do some other forms of exercise.” (like what exactly, I cannot teach Zumba anymore!)
- “Think happy thoughts and be more positive.” (what?)
- “You’re not as young as you used to be, so things are just harder now.” (tell me about it!)
- “You just need to rest and get a good nights sleep.” (are they for real?)
- “Why aren’t your medications working? You need to get a new doctor.” (easier said than done!)
- “I’ve been on Synthroid for 30 years and it works for me.” (hmmm, not from my point of view!)
- “Surely it is easy to find a doctor. Here, I’ve got a name and number for you.” (really?)
- “But you don’t LOOK sick.” (my personal favorite)
What’s your reply to some of these? You say: that this specialist in his field, the one being recommending, probably can’t help. That you’ve tried, several different ones. They don’t listen to you.
Then, they probably roll their eyes at you.
And, as always their response is an underwhelming, “C’mon. You just aren’t trying hard enough. That is baloney. He/she went to school to study the endocrine system. He definitely knows more about your thyroid than what you have learned on the internet or from Facebook groups!” They’ll even add in “Functional Medicine Doctors, Homeopaths, Naturopaths, and Osteopaths aren’t real doctors.” (This is what MY family believes, anyways. But they are old school, who can blame them?)
Were you needlessly put on an anti-depressant, like I was?
Almost 10 years ago, I was put on Zoloft. I fought it for over a year. I didn’t want to be medicated… I wanted to be understood. But, it seemed like my only option at the time.
Maybe all I really needed was some good blood work, a full thyroid panel, some vitamin and mineral deficiency testing and a good diagnosis?!
Obviously, he washed his mouth with toothpaste containing fluoride, one too many times. Either that or the drinking water contained fluoride and he had had enough of it.
I don’t think he has figured out about endocrine-disrupting chemicals, like plastic leaching products, just yet. He probably can’t read or doesn’t understand big words or acronyms like BPA’s, Bromide and Chlorine.
He may not be book smart, but he is intelligent. He knows how to get to you and your emotions. Mr. Hashimoto sucks everything out of you, everything you need to power on. He can make it so your cortisol is so far off (low) that your favorite activities become a thing of the past. For me, it was teaching Zumba. Thank goodness he can’t take away my yoga!
Instead, he introduces you to a litany of deadly diseases. He is not to be trusted. Every BODY is completely different. What works for some people may not work for you. Sometimes, you have to self-advocate.
I am not Hashimoto’s disease. He does not have a grasp on me. I am not willingly having an affair with Mr. Hashimoto. Yes, he wants me and invades my daily life, although most people have no idea about him. And I like to keep it that way.
Maybe that’s why it feels like an affair. It is not a secret… really, it’s just invisible, because I don’t want any part of it. Who would want a mysterious, chronic illness? Certainly not me! I am going to unravel, untangle, unwind, unbind and move on from Mr. Hashimoto.
It is time to end this cycle. I am strong and I can do this. No matter what people say, I have never-ending support from my husband and my 2 kids and a friend that lives close by. That is all I need. Along with information and my humility, I am breaking it off.
I know there are millions out there who are suffering, just like me. And I have connected with many of them. I am spreading the message. I am raising awareness. I am passing along the information I am gathering, so that generations to come won’t be blindsided, like I was.
The entire medical establishment needs to be on the same page. I will shout it from the rooftops! Who’s with me?
I will do whatever it takes. It will take time. It will be hard work. But, I am still learning and growing and changing every day. I was put on this planet for a reason, just like everyone else. I intend to make sure I am noted, counted, and heard. I will have my place and I will feel better. I am determined. Together we fight. United we heal. #SurvingAutoimmuneDiseaseTogether
I am not having an affair with Mr. Hashimoto anymore. This secret fling is OVER.
*Thank you Donna Lynne-Larson for all of your encouragement, commitment and friendship, the energy you send out to all of us sufferers, in the movie and always, is refreshing, calming and inspiring.*
About the Author
Danna Bowman is the founder of Thyroid Nation. She developed Hashimoto’s after years of unknowingly suffering from hypothyroidism, hormonal imbalances, and adrenal fatigue. Hypothyroidism runs in her family but it was never discussed, unfortunately. Her husband, 2 kids and her, picked up and moved, sight unseen, from Texas to Costa Rica in 2008. She was accurately diagnosed, however, they only offer Levothyroxine or Thyroidectomy as a solution for the disease. After a year of suffering, she turned to the internet. She found a doctor in Arizona that would consult with her and send Natural Desiccated Thyroid to her. After learning and realizing the misinformation and lack of information in Costa Rica and worldwide, she founded the website to help educate others. In 2015, she launched Thyroid Nation RADIO, a weekly thyroid and health, LIVE radio show with her co-host, Tiffany Mladinich. Follow Thyroid Nation on Facebook, Twitter, Pinterest, Youtube, Instagram, and Periscope.
This article is offered under Creative Commons license. It’s okay to republish it anywhere as long as attribution bio is included and all links remain intact.
Danna, great article. Take out Hashimoto, insert Epstein Barr, my story almost to the letter. When I was first diagnosed in 2007, I found a friend’s wife to talk to. Here is what she told me. Your life as you knew it is gone. Get ready to loose most of your friends. Get ready to fight for your life with doctors. Get ready for them to Rx a zillion anti depressants. Get ready to hear “you don’t look sick”, “you are ALWAYS sick”, and my all time favorite “call me when you feel better, I will take you out for cocktails”. Really! Invisible disease my be the hardest. People throw fundraiser for people that have diseases that are well known, and I am glad they do, but I wish that there would be more compassion for those of us that ride out the hidden ones. Wishing all who read this the best of the best. Nora
I can’t believe it but I have a problem too… thyroid and for years… It has messed up my life. Not Happy.
Danna, this is very well written. Unfortunately, I relate. Thanks for writing so openly and honestly about what it’s like to suffer with Hashi’s. *hugs*
Note to Nora above: Epstein Barr Virus can be a trigger for Hashimoto’s. I’m not sure where I read this, but I am pretty sure Izabella Wentz, author of “Hashimoto’s Thyroiditis: Lifestyles Interventions for Finding and Treating the Root Cause ” suggests that Espstein Barr Virus can Cause Hashimoto’s. If you haven’t been checked properly/thoroughly for the antibodies, I highly recommend getting tested (also, you can have Hashi’s for years without the antibodies!) Be well everyone! xo
Thanks, Rachel! I’m so glad you commented and thrilled it resonated with you. I hope you are doing well. Keep us updated.
What a great letter! Thank you for taking the time to express your struggle. Reading your letter allowed me to see that I’m not crazy, lazy or just anti-social. You talked about things with which I struggle but hadn’t connected with Hashi’s. Thank you for help me feel less abnormal.
You are so welcome. I have suffered for many years and did think I was crazy. Or at least VERY different from everyone else. It is so nice to know we are not alone. That is one of the reasons I started my website. We also have Thyroid Thrivers stories for that purpose. They aren’t so much about Thriving, but just thyroid journey’s that we can all relate to. Check them out if you get a chance and thanks for commenting. https://thyroidnation.com/thyroid-thrivers/ ~Danna 🙂
This is me thanks
It’s ME, too, Tiffany. 🙁
Hope it helps. Share with friends, family and co-workers, if you have to.
Thank you so much for the kind comment. I’m thrilled it was of some comfort to you. So many, like you, are suffering needlessly and that is one reason I started this website. Take good care and let us know how it goes.
This is really silly, I mean the metaphor with Mr. Hashimoto, the fling, etc. Hashimoto was the scientist who first discovered and described the decease and did a lot for the awareness and treatment of it. It is really bad taste to play with his name, blaming him for your misery of being ill with this syndrome.
I appreciate how candid you are about everything you’re dealing with. How do you get the doctors to listen? I have had my thyroid tested a few times over the last few years as I’ve been suffering from everything you’ve described and almost all 72 hypothyroid symptoms. I have had biopsies I have been told by doctor after doctor that I am fine, but I don’t feel fine. I don’t know how to get them to listen. How did you find one to listen to get a diagnosis?
My mom actually forwarded me your article with the line, “maybe something to think about”. She’s the only one that believes me something is wrong.
Any advice would be extremely appreciated.
Thanks, I love the metaphor with Mr Hashimoto, my spouse does use the same metaphor when he talks about my autoimmune diseases 🙂
Hope you feel much better…
I hope Mr Hashimoto let’s me go back to work and enjoy my kids 🙂
Thanks for all the info. My ultrasound said I had Hashimoto disease. I’ve been feeling bad for years but my Thyroid test are in the normal range. So no changes to meds. Doctor said all my symptoms have nothing to do with disease. Tired,painful joints, weakness, tired ,fatigue. Sometimes I can barely walk. Not fun.I take meds for arthritis, depression, synthroid,cholesterol etc. I need to find a doctor who can help me now.