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How To Kick Your Thyroid’s Ass: Let’s Talk Dirty Little Thycrets

Post Published: 16 August 2009
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Category: How To Kick Your Thyroid's Ass
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Hello there folks! Hey, I have a great idea — let’s take a little diversion from why every possible food you could think of is bad for you and talk instead about the reason for this column: why is Liz crazy? Trust me, there’s a good moral at the end of this story and something I’m hoping you can all relate to, and maybe, just maybe, this will open up a bit of honest dialogue.   Please indulge me for a moment.   It’s really important.

If you’ve read any other installments of this column or have spoken to me in any other thyrocious circumstance, you will know that yes, I’m a total and complete health nut.   You also know I have extreme expectations for my food, my body, and my disease.   I err on the side of perfectionism in these arenas, even if I can’t always (or ever) achieve it.   I exhaustively research and read up on all things thyroid related.   Then I share all this shit with you dear readers, in hopes you’ll get something out of it.

Now, why, you may ask yourself, is Liz so compulsively cooky/insanely intense when it comes to these sorts of things?,   The answer is very simple: I do not do this for fun.   Yes, I would like to loosen the fuck up and have an Oreo and cupcake with you from time to time.   I dream about cake and ice cream, and peanut butter and jelly sandwiches — simple things really; yeah, like a scoop of peanut butter right from the jar (crunchy of course).   I also fantasize about extra/super/white-trash-sized Diet Coke, or iced coffee with cream and sugar.   Oooohh, or sweet tea.   I used to be a huge sweet tea fan — for about ten years; I wouldn’t want to tell you how much of the stuff I would go through in one day.   Sometimes Mexican and Italian foods also call to me.   Pizza, pasta, anything covered in tomatoes or aged cheese served up with a grain (wheat, corn, rice).   When I lived in Brooklyn for a year, our weekly Friday night ritual was dinner at this two-blocks-away hole-in-the-wall/one-time-we-saw-a-mouse taqueria, aptly named La Taqueria.   I was so in love with this deep fried creation dubbed the “Tito’s Taco” that I even had a picture taken with one on my last few hours in the city, before moving back to Florida.   My mom also happens to be a really great cook and sometimes whips up heirloom family recipes while I’m stopping by for a few hours, like it’s nothing.   These are the kind of foods with names like “Porcupine Meatballs” and “Shoofly Pie” — things handed down from Pennsylvania Dutch Country women who cooked all day and lived to their 90’s without a complaint in the world.

Oh, and the rest of the answer to the aforementioned question is, I have freakishly immediate and extreme symptoms that cause me discomfort and make me feel bad about myself!!!!!!!!!!! Now, please understand where I’m coming from with that statement.   Never — NEVER — ever will I compare severity of symptoms/diseases with other people.   How I feel about that is, it’s a load of bullshit to think you are worse off than someone else; we all experience different specifics that hit us just as hard.   Get it?,   What you’re going through is just as important and rough as what I’m going through.   I’m not telling you that your problems are less than mine.   I’m just saying that, in my case, my body is freakishly sensitive and therefore I have to cater to its every whim.   I’m basically my immune system’s bitch.   Hence the crazy.   Hence this column.

“Hence the crazy” also because I keep accepting responsibility.   I accept responsibility for the weird things my body does that are out of my control.   My body starts acting up and instead of pointing out the fact that, wow, my body is doing shit that I can’t stop, I let it be a reflection of me — myself, my person — and it is a serious blow to my self-worth and self-esteem.   The really paradoxical part of illness is that I genuinely like being me (you know, the person who is just a person with interests and ideas and things to say; the person who isn’t also a medical mystery), but when I am also forced to vouch for and accommodate this disease, I get embarrassed and upset.   I would like to think other thyroidish and chronically ill people can relate.   Because we differentiate between the person and the illness, you’d think we wouldn’t feel the need to cover up for it and make excuses for it.   You’d think we’d want to expose the bastard for all it’s worth and drive a clear point that we are not sick; our bodies are sick. We have not chosen this; our bodies chose it everyday.   But no; instead there is shame and secrecy.   And quite frankly, I’m at my breaking point.

Maybe I’m at this apex of honesty simply due to the fact that in the two years and a few days that I have carried the weight of this heavy diagnosis, I’ve only ever spoken to two people in my circle of friends and family about the real problems.   Aside from the many doctors and websites — both mainstream and alternative — I’ve consulted in efforts to eradicate the fucking problem (trust me, nothing has helped), these two people have been my only outlet.   That’s because, for me, my “real thyroid problems” no longer have to do with things like “weight gain, fatigue, brittle hair or, “weight loss, anxiety, insomnia”.  And I’ve therefore started having shit fits over the fact that these websites I read and pull from keep insulting me.   Are weight gain/loss and sleep disturbances real thyroid disease symptoms?   Yes.   Are they life-stealing and severe?  Yes.    Do they cause us discomfort and make us worry and stress over how other people perceive us?  Of course!!   Do they make us miss how our lives used to be?,   Yes, yes, and yes.   However, I’m sort of looking for the yuck factor here people.   Certain symptoms have been deemed “acceptable” to talk about and discuss because they’re not too graphic and because they don’t make other people feel uncomfortable.   I have to believe that if thyroid patients were to open up about the unknown/taboo/dirty little secret side effects of this disease, we’d have alot more in common than memory loss and achy joints.   There is so much shame in this disease, and it is so hard to verbalize.

So here’s the thing: as much as I’d love to get honest and into the nitty gritty, I’m scared too.   As great as verbalizing the terrible secret symptoms we keep from each other as patients is and could be for catharsis and healing and community, I can’t even bring myself to do it because they are just too awful and I am too worried how it will be received.   Therefore, I am begging you with everything that is in me and from the bottom of my cold black soul to please speak up about your problems that we don’t talk about.   I am sick of feeling like a freak of nature with my weird ass symptoms no doctor has ever heard of and can’t help me with and that no other patients seem to address.   I know there have to be others out there too.   So, I’m opening up the comment box and crossing my fingers that someone — ANYONE!! — will write a few words.   Even if you don’t feel comfortable naming the symptom (as I’m not ready to yet) please at least consider speaking to the general idea of your body doing awkward and gross things that you feel responsible for and bad about.   Please. I want to hear from you so badly.   Not only is this about making Liz feel better, but I am hoping this will bring real awareness to this disease.   Thyroid diseases are so much more than the five bullet list of symptoms on a website.   What are the real problems associated with your disease?,   Can we please get honest with each other?

Until Next Week,

Love Always,

Liz,

Have a question, comment, story, love letter, or rant/rave to send me?: Liz@DearThyroid.com

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86 Responses to “How To Kick Your Thyroid’s Ass: Let’s Talk Dirty Little Thycrets”

  1. Madison says:

    Liz I really think all of my symtoms are strange, for example what 17 year old can’t stay up past 9:30 and takes naps everyday that are as long as a nights sleep.

  2. Christina says:

    I am not embarrassed of any of my symptoms.Why should I be? I am sick.Really sick. I didn, ´t ask for it.
    So I, ´m sharing my worst symptoms with you.
    I, ´m sweating.Day and night.As soon as I take a few steps it starts.And it, ´s really bad.I, ´m literally soaking wet especially when it, ´s warm outside.
    And at night I sometimes wake up because my sheets are wet and I have to change them.
    Keeping those symptoms to myself doesn, ´t help.
    Other people need to know what we are going through.How can we expect others to understand our feelings and behaviour when we keep symptoms from them?
    We need to tell everyone around us how we really feel and what our problem is to make them realise that our thyroid diseases are severe and have a huge impact on our lives.

  3. anita says:

    ok, yeah, cause i totally get the feeling like a freak part. i had so much weird stuff going on with my body that one day my husband came to me and said the magic words:
    “this isn’t your fault, i think you should go see a doctor, something is wrong and it’s not your fault.”

    what wasn’t my fault?

    -indigestion so bad that i went thru a thing of tums and gaviscon every week
    -massive edema that made my eyes look like i was always sleep deprived and my face was like a big white moon, round and puffy.
    -fatigue sooooo bad it was like always being sleep deprived. but spending half the night awake.
    -4 menstrual periods a year, that were like a 9 day flood and left me so weak i could barely function
    -pms so bad i lost almost 10 days before said period
    -i’m not gonna even go into the depression and anxiety
    -brain fog of epic proportions
    -constant yeast and urinary tract infections
    -even paper cuts took weeks to heal and scarred
    -and the ever popular weight retention issue…

    finally, i began to lactate. i have no children. i have never given birth. i went to the doctor.
    it wasn’t my fault.

  4. amy says:

    Good article Liz! You are not crazy! With Hashimotos there is just weird unexplainable stuff that we like to keep to ourselves because it is weird and embarrassing. I sweat a lot as well. Since I use natural deodorant I just have to deal w/being a little ripe or wash my armpits mid day and reapply. My legs hurt a lot lately. For no reason. I have cravings for sweets like a bitch…eating healthy is hard sometimes. I eat well and I still feel hungry and crave foods. Can’t seem to lose weight. I do not have a lot of stamina…I think am I horrible mom? I don’t have the energy to take my girl outside to play! I have to kick myself out the door for a walk…I(use to) love walking. When I feel good it is so foreign to me and I wonder how long is this gonna last? and wait to feel like shit again because it is just the norm. Then there is the topic of pooping. When you know how your body was before thyroid problems and compare it to how it is now…Sometimes it is normal sometimes constipation sometimes very loose sometimes butt itches…embarassing? YES! All in one day I can feel really good(a high) really low and down in the dumps, tired, depressed, irritable….and cycles of this all in one day. Never knowing what to expect….And this is just the icing on the cake:)

  5. dearthyroid says:

    Liz, I am SO PROUD OF YOU.

    You’re right. We need to talk about the ugly symptoms that we don’t discuss with each other and with our doctors. Every time we don’t, we give thyroid disease more power and quietly and continuously strip ourselves of worth.

    GREAT — BEAUTIFUL — HONEST — I CRIED.

  6. Jenny says:

    I’ve had such painful/random symptoms for the past nine months, which in that time I discovered my Hashi’s. And I’ve gone through about about thirty doctors, quit my job and am now deferring a semester from college. I’ve had so many tests and bloodwork done with healthy results (aside from thyroid) and wound up in ER a few times.

    -of course my neck hurts. a lot. so much that it feels like someone’s punched it or is choking me, tight pressure rising up, under my jaw and radiating in my ears and causing ear aches. when it’s in extreme pain, it feels so stiff and painful and when i touch it, it’s very tender and sore.
    -I get tight, compressed pressure inside my head, squeezing against the back of my nose and mouth that I feel like I am either falling over and most definitely about to pass out and fall to the floor. This happens at the wrong times always, like when I’m getting my hair cut or driving.
    -sometimes I feel breathless or like I’m not getting enough air- my chest and back being crushed into each other like I’m in a vice.
    -speaking of vice, sometimes it feels like my heart’s in one too, cramping so tightly that my left arm and left side of my neck go numb- and still my ekg’s are perfect.
    -it feels like electricity in my mouth, I feel dizzy, unfocused, definitely anxiety, and the area under my tongue gets real tight and I’ll hypersalivate so much it’s uncomfortable.
    -there’s also the nausea and all-over bad “feeling” in my body I can’t really describe to a doctor except it’s like I have some kind of poisonous virus.

    What you’ve written has really made me think more outside the box of what symptoms you “should” experience with thyroid disease and related problems. Every doc and endo I’ve seen has stared at me and said that none of my symptoms or the extreme pain I’m in match up at all with Hashi’s, so I’ve been on a wild goose chase this entire year trying to find answers and constantly hoping that I am not dying. I’ve gotten to the point that there must be some rare autoimmune disease or strange virus in my body, and am working on getting myself into the mayo clinic. Are my symptoms all indicative of my Hashi’s? I have no idea anymore, but what you’ve written gives me hope that I might be able to get answers. All I know is my nerves are shot and I officially feel crazy.

  7. lizschau says:

    OMG Christina, you are BRILLIANT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    i wish i woulda thought of that. and first of all, who do people think they are, invalidating your disease??? oy it kills me.

    wait, i have to know what they said when you gave this to them and after they read it. please tell me!

  8. Ky says:

    I was just diagnosed with Hashimoto’s, which my mom and her sister have, and an aunt on my dad’s side is hypo. My TSH was normal, but I insisted on additional testing because I *knew* things weren’t right. I am currently looking for second (third, fourth) opinions, because the endo I went to refuses to discuss any further treatment because my TSH is normal.

    The weight gain has bummed me out, because I gave up soda completely (sob) and am going to the gym at least three times a week (which is three more times a week than I have ever done!) and have managed only to gain more weight. And the hair loss squicks me out. The fatigue has been insane. I can drink coffee, Red Bull and a gallon of water and I will be practically asleep by noon.

    But the things I have going on that people don’t mention (but that coincide with my traditional Hashi’s symptoms) are: easily scarred (from cuts, from picking at my skin, from everything), acne on my face, my chest and my knees (wtf? MY KNEES? It’s summer; I want to wear skirts) and horrifying constipation. Not like, “It hurts to poop” constipation; I mean, enema level constipation. I know that’s a symptom of Hashi’s, but no one talks about it much. It’s no fun either. But how do you talk about that with people? “Man, I haven’t pooped in four days…”

    My fiance actually came to me a month before my mom told me to go to the doctor and get tested and said, “I think you should get your thyroid tested. I was reading about it online, and I know your mom has it, and I think you should get it checked out.” At first, I think he thought people used thyroid stuff as an excuse, and then he saw how hard I was working at the gym and how nothing was changing, and he took it upon himself to research it. Bless him. 🙂

  9. Eyece says:

    Liz, thanks so much for publishing this. All of the comments have been so useful. All I can say is “ditto” to Anita. Well, I guess not all….

    I was diagnosed originally back at the end of 2006. Until I started taking levothyroxine, in even the tiniest dosage, I didn’t realize how bad I’d been feeling.
    * First day of bleeding for my period would just completely wipe me out; completely exhausted.
    * Bleeding would last for 7-9 days, when before 4 had been usual.
    * Monthly, or even bimonthly, yeast infections.
    * Feeling so incredibly dehydrated all the time, but if I drank any water at all, I’d feel “water drunk” and awful.
    * Hair falling out, and incredibly dry skin
    * Putting on weight, which isn’t that weird, but the fact that it was only in the area between my ribs and my hips, and I’ve never put weight on there in my life.

    During the “adjustment” phase to increasing amounts of levothyroxine —
    * constantly cold nose and palate – “ice cream headache” all the time, to the point of wondering if it would be socially acceptable to just walk around all the time with a scarf wrapped around my face.
    * incapable of being warm
    * gums bleeding, and incredibly sensitive teeth – I had to use sensodyne and warm water only

    My frustration has been with both of my doctors. My gynecologist only sees the cysts and the yeast infections and the bacterial vaginosis. He immediately thinks surgery and hormone replacement, or going on the pill to stop my ovulation so I won’t have the symptoms. My GP only works with the magical TSH number, and flat out told me that she’s treating “the number”.

    The fact that since Jan I’ve been feeling hypothyroid again, moderately, and on test, yes TSH had gone up slightly. In June it was “in normal range” whatever that means. But since November I’ve had bronchitis that lasted 4 months, pink eye three times, 4 colds, a lingering sinus/upper nose infection, continual bacterial vaginosis (why yes, I have just finished my 3rd course of antibiotics in 2 months), 2 ovarian cysts pop, continual yeast infections (I should buy stock in diflucan), horrible PMS, irrational anger, incredibly weird depression, a strange craving for ice water (which last happened when I was pregnant) and now my hair is falling out/breaking again.

    I’ve got an appointment with an endocrinologist in another month, since my doctors don’t seem to think that all the progesterone and thyroid out of whack symptoms seem to be at all related. But I know they are. I’ve not been officially diagnosed with Hashi’s or any other type, because my GP’s feeling on it is “this is just something that sometimes happens to women in their mid-thirties”. I have to go through her for the official referral, since she has all my records, but I’m shopping for another GP.

    The only professional who has helped thus far, not just treated symptoms, has been my acupuncturist, and even she is at a loss when her treatments work for a while and I feel better, and they they throw me completely off the edge into unreasonable depression, anger, and unpredictablility.

  10. lizschau says:

    amy, i can learn alot from you. i DO worry what people will think… not of ME, but of the way my BODY makes me seem. i worry about it too much. i need to find the ability to just accept my body despite what it is doing to me and despite how i think people will feel. still really hard for me. good for you for being able to 🙂

  11. lizschau says:

    ***AGAIN, IN CASE YOU DIDN’T HEAR…. I’M GIVING A WARM WELCOME AND SPECIAL SHOUT-OUT TO THE AMAZING GENTLEMEN WHO SUPPORT AND ACCEPT THESE THYLICIOUS LADIES. I AM IN AWE OF YOU GUYS.***

  12. Erin says:

    I was so excited to see these responses. I thought, I should write about;what was the question again? My brain gets so foggy that I forget and it can be really embarrassing, like losing my keys or forgetting the name of my best friend. People do not understand that this is a side effect, because as far as they know, thyroid problems are the name fat people use as an excuse to feel good about themselves.

    At times, I accept my body for what it is, but the truth is it doesn’t feel like mine anymore. I have no control the way I once did. Going to the gym and keeping a low calorie diet aren’t really helping me anymore because the exercise makes me tired and the small amounts of food leave me hungry.

    But the real embarrassment is when I have to refuse food at an early morning work meeting so my meds can kick in. And even though I haven’t eaten yet, I need to make a run for the bathroom and hope no one else is inside. Or I look like I haven’t slept in days. At my age, people look at me and wonder if I might be in the early stages of pregnancy-with the weight gain and nausea, I might have thought the same thing pre-thyroid issues.

    Thanks everyone for sharing your stories-it gave me the courage to open up about mine (for the first time).

  13. Rebekah says:

    Okay …

    I am 17. I sweat a lot. I constantly need to pee. My memory has turned into mush. I lose weight around my waist and gain it easily on my hips and in that general area. I sleep during the day and am an owl at nighttime…
    my heart beats way too fast way too often. my muscles ache, which is crap in regards to sport.
    i get anxious too … dunno if that is to do with my thyroid, but i guess i’d like to blame it on it.
    Also, I went through this stage where I would always get sick after i exercised. I would vomit, or faint, or both.

    Thyroids suck.

    End
    of
    rant.

    xo

  14. lizschau says:

    Pam, have you found anything to help with the thirst and peeing? pretty much, my schedule and life revolve around it. it’s so sick, but it’s so true. i am constantly thirsty. so i constantly drink and then i constantly pee. except nothing is ever satiated. the cycle just keeps on…

    i would seriously love to know if anyone has found anything to be helpful. i don’t eat alot of salt and i eat no sugar (both of which can be dehydrating).

  15. Natasha says:

    It’s the exhaustion that’s killing me. I can actually live with every other symptom (on most days) but the exhaustion is so hard. I’ve always been really active and very high energy so it’s hard to suddenly feel like I am going to die if I don’t put my head down or lie down. I could be having a great day and the exahustion comes on with no warning, making me feel punch drunk and goofy. I think my boyfriend thinks it’s funny/endearing. I haven’t told him it’s my thyroid that has sucked my energy out of me.

  16. Pam says:

    Too bad the email link doesn’t go to the correct comment. 😛

  17. Vikki says:

    Well hell, 10 years diagnosed with Hashi’s and today I am once again struggling with this hideous invasion of my body. Everyone is rightfully sick of hearing me complain.
    One whole year free up and until July ’08, was served foreclosure paperwork which I fought twice through August ’09 successfully, my reward is a blow-out of swollen glands, sweats, chills and major palpitations and fatigue. I am holding my head up to type this.
    Read about 25 comments but not too much on palpitations. They scare the hell out of me.
    Would appreciate feedback on them from a fellow sufferer….Thanks…

  18. Curious Carol says:

    What about sex?

    My endo certainly had no interest in my sexual problem, in fact, was quite unaware that it was possible.

    This is because while I was hyper with Graves’ disease, I had a wildly increased sex drive.

    That doc made me feel like a freak and offered no advice. She told me that no, she didn’t have other patients with that symptoms and that, in fact, most people complained of the opposite problem of low sex drive.

    Until I read Dr. Ridha Arem’s book “The Thyroid Solution,” I thought I had suddenly become a monstrous sex-fiend. My poor husband enjoyed the change in personality for a couple of weeks, but became tired of the CONSTANT demand. I was mighty tired of being so single-minded and severely unsatisfied.

    Finally, I got my anti-thyroid meds increased and felt like a normal human being again. Whew! I can only look back at that time as a strange, curious trip and wonder if anyone else ever felt the same way.

  19. Kim a. says:

    I’ve had a lot of issues for the past decade. One year having my period last longer than it should with one laying 17 days. At that time, I was being told surgery was needed because the walls of my uterus were over an inch thick. No insurance so I never got surgery but I stopped using tampons and years later I saw a reproductive specialist and was told my uterus was fine.
    The past year has been busy with doctors. Last year, I was sent to the hospital because my heart wasn’t working properly. If I didn’t go, I most likely would be here. I had so much fluid build up my heart was pumping at 29%. I was being told I have congestive heart failure. I was put on a low sodium diet and fluid restriction to reduce the edema. Still at this time no hashimoto’s diagnosis yet. This would come a few months later. Between the hospital stay and the Kashmiri’s

  20. Kim a. says:

    I’ve had a lot of issues for the past decade. One year having my period last longer than it should with one laying 17 days. At that time, I was being told surgery was needed because the walls of my uterus were over an inch thick. No insurance so I never got surgery but I stopped using tampons and years later I saw a reproductive specialist and was told my uterus was fine.
    The past year has been busy with doctors. Last year, I was sent to the hospital because my heart wasn’t working properly. If I didn’t go, I most likely would be here. I had so much fluid build up my heart was pumping at 29%. I was being told I have congestive heart failure. I was put on a low sodium diet and fluid restriction to reduce the edema. Still at this time no hashimoto’s diagnosis yet. This would come a few months later. Between the hospital stay and the hashimoto’s, I saw a Dr for sleep apnea. Once I got a cpap machine my life changed for the better. I wasn’t so tired anymore where i’d fall asleep at the drop off a hat or brain fog. I remember counting by 2s would be hard and now no more hesitation.
    I stopped seeing a gp and switched to a Dr in integrative medicine. Instead of a 15 minute visit, I’m there for an hour out more being asked loads of questions. She is currently helping me fix my digestion issues (gas, bloating, diarrhea, constipation, etc.) She is also helping me with my thyroid too. It seems I have low stomach acid which lately has been the source of my heartburn and other stomach troubles. She told me to take glutamine to help heal the lining and since then I’ve had no to little heartburn. She also ran an allergy test and I found a ton of food intolerances so I’m slowly adding them back to my diet one at a time to find d which ones I have the most problems while on the specific carbohydrate diet (this too helped a lot.) I’ve spent September to the middle of November in digestive hell and several trips to the ER to get no where but the recommendation of prilosec and the suggestion of gallbladder removal.
    In the past year, I’ve gone from being swollen at 231 lbs to currently 159 lbs and little bit of edema on occasion, I find its usually if I had something with too much table salt which is nutritionally devoid use Himalayan sea salt, especially try making a salt sole to have in the morning. This has helped with my high blood pressure.
    I’m feeling a lot better now. Loads more energy, more alert and due to the weight loss I’m starting to ween myself of the cpap machine.
    Definitely find a Dr who specializes in integrative medicine.
    For those with sleep issues, foggy brain, headaches, see a neurologist/sleep specialist. Some might have undiagnosed sleep apnea. After getting that diagnosed, it made a world of a difference.
    Amy problems with digestion, currently, I’m having my stool checked for bacterial overgrowth. Being a former carboholic, yeast and wheat and sugar help feed bacteria and candida in the small intestine and can cause a whole bunch of problems in the gut. Your integrative medicine Dr will run tests for this, as well as check for low stomach acid. Most likely a dietary change will happen but believe after 30 days you will feel better.

    I apologize if this looks like a similar post a few minutes prior to this one I accidentally posted before I finished.

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