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Thyrageous
Dear Thyroid,
I have no idea what the hell your problem is, but you are ruining my life. Six months ago, I was sitting in a movie theatre with friends, enjoying my healthy life and minding my own business, when suddenly out of nowhere, I felt like I was having, either a terrible panic attack or the onset of a bad flu, or something.
At first, it felt like my tongue was growing in my mouth, the area under my tongue went dry. My heart started racing. I began sweating and shaking with a nauseous sensation in my stomach. Panic attack? At that time, I was under the least amount of stress. Flu? I never got sick. An allergic reaction? Ha, I don’t have allergies.
And, for the past six months, to this very day, I have not had one good, healthy, happy day since then. Not one. I’m only 20.
I’m young, female, and although tiny (5’0″ and 100 lbs), I’ve hardly been sick with more than a cold in my life. I have had the strangest symptoms that come and go, and last however long they please. I had symptoms in the beginning that I don’t really get now, and I have symptoms now that I never got in the beginning.
My upper back and shoulders ache all the time, sometimes cracking just from taking a deep breath. I have bad cramps in my legs at night, not that I’m sleeping. I don’t remember what it’s like to have a good night’s sleep. I lie awake, in pain, unable to sleep, despite exhaustion. Every day.
I have a twisting, burning feeling in my stomach (CT scans and the endoscopy revealed that my stomach looks fine). Even though, I’ve never vomited, I feel nauseous constantly. I get a feeling like the skin on my neck and sometimes my scalp is tingling. My neck feels warm, and I feel like my throat is being pinched extremely hard from inside my body. Sometimes I feel like something extremely heavy is pushing against my neck/chest area, or that it’s been punched really hard. I feel out of breath easily when I do a lot of talking or when I sing. Sometimes I feel so dizzy, I think I’m going to pass out, like there is a heavy weight inside my head. I have headaches, and head pressure; pressure from my chest up to my neck that tightens along the sides and along my jaw, into my ears. It feels like there is poison inside my body.
I get bad cramping in my chest, most often my heart feels like it is clenching really hard, sometimes it pounds and races. I flip out, constantly in fear, constantly wrought with anxiety. Constantly shaking like a leaf, even when I’m not. I feel a tightness and overproduction of saliva under my tongue that drives me crazy. I feel like I am dying every day. I’m not exaggerating.
What did the doctors first say when I told them of all these crazy symptoms? Obviously, they said “I just had anxietyâ€. I was handed a bottle of Klonopin, which did nothing.
I was then handed a bottle of Alprazolam, which I now take occasionally, grudgingly, only when I feel like I’m about to die in a frenzy. After a week, anti-depressants left me in so much pain and with such a burning stomach that I was unable to get out of bed, let alone go to school or work; I called it quits with the anxiety diagnosis. I’ve been to the ER twice and had nurses roll their eyes at my symptoms. I had a thyroid panel done and a thyroid ultrasound, both come back normal. I don’t have signs of a goiter.
I went to an endocrinologist who diagnosed me with Hashimoto’s and said, “There is no treatment for this. You have to wait until you become hypothyroid to even need medicine, which could happen in a year or when you’re 80.”
So, I went back to dying every day again, feeling there was nothing I could do for myself.
I lost friends, I went through a terrible time with my boyfriend, who I can’t believe has stayed by my side so wonderfully and unwavering in his commitment through it all.
I became a hermit, afraid of everything. I stopped going out. I stayed in bed all evening every day, afraid to so much as move. When I workout or try doing yoga, I feel sick and dizzy. I have about four other endocrinologist appointments that, of course, I’m not getting into for another few weeks. I did see someone in integrative medicine and acupuncture. He sat with me for hours.
He basically said “Go gluten free” and even seemed a little puzzled that my symptoms were Hashi symptoms. Frustrated, I left again.
Gluten free? I tried going gluten free for a few weeks more than once. I tested negative for Celiac’s disease and still don’t really understand the issue.
I recently got into a last minute appointment with an endo. I was hoping I’d tell him my story, and he’d say “Yes! Hashimoto’s is your issue, but we can help you. Here, take some Synthroid and you’ll be better in no time!”
But, that’s not the way it worked. He listened to my symptoms and looked through my blood work. He said that he’d never seen anyone with Hashimoto’s have the type of symptoms that I had. Although, he did say I definitely have Hashi’s. My blood work shows that it’s not very severe, and he thinks there must be some other autoimmune disease that hasn’t been caught yet. He hesitantly gave me Synthroid, though. I took one the next day, and had heart pain and palpitations so badly throughout the day, that I stopped taking it.
The next day I saw my holistic doctor and acupuncturist, who said that he thinks it’s Grave’s disease, but the only way to know for sure is to have a biopsy.
Thanks to you, thyroid, I have been through hell and not-even-close to back again. It’s been over six-months, and I have no treatment or anything to go on. Eventually, I have to make a decision to go holistic or try actual Western medicine and I have NO IDEA what the right direction to take is. I wish I could understand everything better, but I’m not a doctor. I’m 20-years-old. I want to look forward to the future, but instead, I worry about dying constantly. I used to be an optimist, now I’m never happy. Thanks for nothing. I hate you.
-Jen,
(Bio) Jenny Baran is a 20-year-old lady in college working towards becoming a speech-language pathologist. While she’s not fighting crazy symptoms or hiding in her room watching corny romantic comedies at 2 AM, she feels happiest when she’s doing yoga, sewing, and spending time with family and friends. Visit Jenny’s Blog Time Unwinds to learn more about her.
Tags: Dear Thyroid Letters, hashimoto's patient letters, letters written by thyroid patients, support for thyroid patients, thyroid autoimmune support, thyroid community, Thyroid disease support, thyroid literary healing, thyroid literary support, Thyroid patient letters, thyroid support
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29 Responses to “Thyrageous”
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Jen, thanks for your post. I was 14 when I was diagnosed with hypothyroidism, and it was also a tough thing to have to go through when I was so young. I’m sorry you have such a big burden to carry, and I hope your doctor(s) get to the bottom of things soon.
Jen,
Oh this terrible thing we call thyroid! I hope you find an answer soon! I too was given a bottle of antidepressants and told to go get a hobby. This disease is so terrible and I don’t wish it on anyone. I will say this – I agree with your one doc on going gluten free. In the first part of your letter you mention your weight. With Hasi’s comes terrible weight gain and habits that are hard to get rid off due to addiction to sugar. If you can get ahead of that-do. I wish I would of done that myself. I wish I would of tried to stay ahead instead of letting it get in front of me. But I let my thyroid win and now I seem to be paying for it.
Stay strong I know you can!
Sorry so long – I wish you well. 🙂
Oh Jenny,
I read your words and wish I could help in some way. I was also a speech-language pathology student aand had symptoms around your age. I wish I could help make you feel more alive and take the pain away. I wish I had answers for you.
Please keep fighting for answers. Get copies of every report and blood tests results from every doctor you see. Try to get results from the past as well. Keep multiple copies, scan them and keep them electronically. I say this because this is where I feel like I dropped the ball. In my 20s, I got mixed test results and opinions. In my 30s, I continue to. I feel like if I would have been more proactive in my 20s, including having a single record from that time, I’d be closer to knowing what is wrong now. I can tell you that in spite of my thryoid and other problems, I have a great life including a career and family that bring me joy.
Please know that no matter how alone you are feeling, there are other people who connect with your story and support you.
Dearest Jen, You poor sweet baby! This is too much for you to handle on your own. I am old enough to be your Mom, or even your Gramma. I can tell you this, when I am in the worst shape with my thyroid both physically and emotionally, I get the most compassion, understanding and support from the groups I belong to on-line. They have been there – or are there now – and they know exactly what you are going through and many know ways to help! Remember, there is an answer somewhere. Things will get better. You are a survivor. Stay strong, keep asking questions, accept support wherever you can get it. We love you, support you and understand.
Jean
So sorry to read about this pong game between Eastern and Western medicine. A nurse I respect once told me that many endocrinologists are idiots. I had thyroid cancer growing in me for fifteen years before someone considered doing a biopsy. I was treated for another cancer at 17, radiation at the back of my neck that caused the thyroid cancer. At 21 to 25, I had what I thought were panic attacks and IBS, but nothing helped. Ultimately, I see that these were periods of hyperthyroid. At 27, I went hypo with a vengeance, but had no idea what was happening because none of my doctors would check my neck. Knowing my cancer history and everything, no doctor took my concerns seriously. It is only now after a total thyroidectomy (and lymph node removal) and one course of RAI that I understand the symptoms that were wrecking my life. The radiation oncologist for my first cancer didn’t even tell me about the risk!
I completely understand your anger and frustration. I really hope that you can find an endo with a complete brain. And question them constantly. I have become mega-bitch with just about every doctor now. It is worth the extra energy to get the help you need. And don’t be afraid to list your symptoms to anyone who thinks thyroid problems are easy. Either that, or kick their ass.
Jen, I am so sorry that you have to go through this. I wouldn’t wish this disease on my worse enemy.
Hashi’s is an autoimmune disorder. If you have Hashi’s, this means your TPO antibodies are elevated and are attacking your thyroid. I read somewhere that 3 to 6 months on a gluten-free diet can greatly lower the antibodies and even halt the destruction. Please don’t wait until your thyroid is destroyed before going gluten-free!
Most people associate gluten with Celiac disease, which is another autoimmune disorder, and they don’t realize that autoimmune diseases are related. Once your immune system is overly fired up by gluten, you are at risk for multiple autoimmune disorders, not just Celiac. I wish I had known about the gluten-autoimmune connection years ago before my thyroid was destroyed.
Other things I avoid – crucifereous raw veggies (broccoli, cauliflower), artificial sweeteners, most soy products, and I limit tea due to the high-fluoride content. Fermented soy like tofu is OK, but avoid soy milk and anything that has “isolated soy protein” on the label.
You don’t have to choose! Find an integrative doc. They integrate mainstream and holistic medicine, which is the most effective, in my opinion. I see one in Annapolis, MD.
Here’s his website:
http://annapolisintegrativemedicine.com/
I found him through this:
http://www.endfatigue.com/practitioner-list/
Hopefully, you can find someone who is within reach.
And btw, even if you choose main stream medicine, you can also incorporate alternative attempts into your life through diet modification (gluten free is a good start), nutrients and herbs. Just communicate with both your doctors so you can avoid contraindications.
Jen,
Thank you for your beautiful letter. I can’t believe you have gotten so many mixed signals. (Wait a second, I can believe it.) I had the same symptoms, but my antibodies were sky high, so my doctor took me seriously. Your symptoms are classic Hashi’s. Gluten free has been found to help, but you must stick to it for months, and I know that is difficult. Been there, done that… still doing it.
Do as others suggested & get all your past & present test results. Continue to fight for yourself.
HUGS!
Heather
Jen,
First, what a beautifully written letter to your thyroid. I can actually FEEL your pain and confusion coming through the words.
I am so sorry that you are going through all of this at such a young age. I was diagnosed with Hashi’s about 4-5 years ago (I am 46). But, I can look back on my life and see that periods of panic attacks and weight loss were most likely times when I was hyper….I wish I would’ve done more to find out what was going on then. Maybe, just maybe, I could’ve been more on-the-ball when it came to my thyroid.
Yes, I agree with most….go gluten free. It is something that I am just now doing. For years, I did a low-carb diet. Ate proteins and veggies. So, I was gluten free. BUT–the hypo in me kicked in! I gained and gained weight no matter what I did. So, I gave in to the sugar cravings! Well, no more…I’m going to regain control! So—please—take control NOW! Before it’s such a struggle.
Just try it and see what happens.
I wish you good health, happiness and FUN!! You’re too young to be so debilitated by this shit. Keep being your own advocate and know that we are all here for you!!!!!!!
Hey Jen,
I know this is very discouraging and scary for you. I was about 20 when my Thyroid went bad. I was in my junior year of college. I began feeling like someone had their hands around my throat, squeezing and began having heart palps. I went to the doctor. He told me I was stressed at school and gave me some time release Valium (which I didn’t take). The squeezing eventually subsided but not the PVC’s (heart palps). Fast forward to the year I turned 43. I was scheduled for a physical at The Cooper Clinic in Dallas. They did an echocardiogram because of my heart palps. The cardiologist began patting my leg and said we needed to stick around and talk about this, “I’m not talking heart attack, I’m talking weakness and enlargement”. Now I work out regularly. I lift heavy weights and run regularly. He told me I had idiopathic dilated cardiomyopathy. Basically, heart failure. The only test out of normal range was my TSH which was at 11.0 I came home and saw my cardiologist. He put me on an Ace Inhibitor and I began taking Synthroid. Within 30 days my ejection fraction was back to normal. I say all of that to let you know that even though my thyroid went bad around 20 years of age. Nobody even tested for it until I was 40 or treated it until my heart muscle cells went into hibernation. As you know long term, untreated, hypothyroidism can lead to heart failure. Even though I had symptoms throughout those years i.e. anxiety, etc. It was always chalked up to stress from school. I am a dentist so I was in school for 10 years. I just wonder how much better I could have done in school if I could have gone to dental school without brain fog and anxiety. I know exactly what you are going through Jen. Its definately not easy, but don’t give up. You will get through this period and emerge on the other side feeling normal. It will happen.
So sorry you are going through this, Jenny. Having a disease at such a young age is very difficult. I have hashimotos and am hypo. I am 27. This loveliness came after the birth of my 2 1/2yr. old daughter. Sorry to say hashis is a roller coaster. Educate your self as much as you can! It helps to know what you are dealing with and what your options are! I really hope that you find a good doctor weather you go nd or endo. Keep your head up and don’t lose your optimism!
Jen,
Hey lady, love your letter. You sound hyper, i am hyper also, as of april 2009. So i am totally new to this but i did some research before i ever went to a dr. ( while i was waiting for the appt.)
When they they confirmed hyperT, and said that i could take this and that and this, i politely declined their offer and went to an endo. She was the same as the dr. Here are some pills come back in 4 months is what she told me. So, i dropped the perscription off at the pharmacy and came home and did more research on the meds. Still unsure i went back and picked up the perscription and to this day they still sit on the counter.
I personally feel better going herbal/ natural but we will see what my numbers say. (i get my numbers checked on 9/4/09)
Anyways, here is my theory, I would rather only recover 1 time instead of 2 or 3. 1 time from the hyperT. Not from the hyperT, AND side effects from pills.
YOU will make the right decision for YOU! Do your research and think about your options, choices, and consequenses. You will be fine.
P.S. the tingling thing, on your head, isnt that annoying?! I had that too on my head and my shoulder, it felt like i had bugs or something. Ugh awful! But i went to the chiropractor and he fixed that with 1 adjustment.
oh yeah i am 30
Hey,
I was 15 when dianosed and now i’m 17. I have hashi’ and i hope the best for you, the best you can do is stay strong, though all of the ignorant doctors and tacky nurses. Stay brave.
oh jen. i am SOOOOO sorry. i can’t even express it. i am sending you as much love and support as i can possibly squeeze onto this page. i so get it. i too have hashi’s and went thru a rapid and miserable decline. i was fortunate tho (???!!!) that when blood was run, my tsh was over 40, and i got immediate meds and some relief. this in between state must be hellish.
please hang in and keep fighting. you WILL figure this out. we will be behind you as well.
Hi Jen,
Unlike you I was diagnosed a long time ago. But like you – somewhere in the last 6 – 8 months my symtoms worsened out of the blue. The very same symptoms as you have described in fact – although from your description, I don’t think mine are as severe. Doctors don’t seem to take it seriously (or don’t beleive me) so I find it hard to expect others to believe me.
Thank you for your letter. I am going to print it out and show it the people I need most to understand – to show them that what I am saying is not restricted to my imagination – others with this disease feel it too.
Kind regards,
Jody.
Hey, Jen—not much more to add medically as others have given some good advice—so i’ll just give you another shoulder to lean on (figuratively speaking)…so many of us continue to fight the thyroid fight and it doesn’t matter how old we are, or what gender; we’ve all been miserable and understand the torment of this disease…i’d like to be positive and tell you that it will get better-and it will from time to time-but we are always on guard for another symptom to arise…so, cry when you need to and yell and curse and scream. Rest when you can. And know that you have many thyroid “friends” here who are supporting you from afar.
The worst part (I know, this sounds crazy) is that you don’t have a real diagnosis. I was sure that I was going to lose my children and my marriage. I was sure I was going to die. I am so sorry. I wish I could hold your hand and make it all better.
I lay awake at night and slept not a wink for weeks. I didn’t know if I’d ever see the other side again.
I have Graves disease. I was diagnosed in 2002 after being told that I was crazy. I was told I had severe post partum depression. I was told I had sundown syndrome. I was told I needed to take Paxil. I saw a psychiatrist for a year once a week. My family thought I was having female trouble. Some of them thought I was acting. I was shunned.
I came out of it. After treatment and remission and now I am in treatment again.