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A Break-up Letter

Post Published: 14 September 2010
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Category: Dear Thyroid Letters
This post currently has 14 responses. Leave a comment


Dear Thyroid,

We need to talk.   This isn’t going to be easy for you but I’m way past giving a shit about making things easy for you.  To put it bluntly, we’re breaking up.

I know we were childhood sweethearts and that we’ve been thru a lifetime of ups and downs together.  You act like that’s supposed to make me feel obligated to continue trying to make things work out between us but you and I both know that’s bullshit.  Let’s talk about that childhood romance for a minute:  I was only 8 when you became such a central part of my life.  When other kids were out playing, I was laying in my room too tired to even read a book.  I took my Euthyroid every day but you still sucked all the energy out of me and left me lethargic and sick.  Worst of all, you made me fat.  Do you know what it’s like to be the fat kid?  Those are emotional scars and self-esteem issues that I’ll carry for the rest of my life thanks to you, you selfish toad.   Was that the way you wanted it?  Somewhere in your twisted logic did you decide that if I became the object of ridicule among my peers I’d give up making friends and make you the center of my life?  It’s not like I had much energy for a social life in the first place, but giving me a lifetime of struggling with emotional demons over my weight and self confidence was just fucking mean.  I accept responsibility for my own actions but I think we can be pretty safe in saying that the long years of anorexia and some of the reasons behind that really bad first marriage when I was 17 were at least partly your fault.

Those years of my childhood were just the first part of my life that you took away from me.   We’ve had our ups and downs for 49 years but none of it was good.  You learned to be subtle but you still dominated most of my life.  Even worse, you contributed to the rebellious actions of other parts of my body, like the way my auto-immune system became a psychotic over-achiever.  And you can deny it but I know that you were there when I started going thru menopause at 27.   Do you see any children in my life?  Of course not, you miserable excuse for a gland.   You made damned sure that my whole endocrine system was so fucked up that there was probably never a chance at that for me.  One miscarriage was all I got before my ovaries filled up with cysts.   You can’t look me in the eye and tell me you weren’t a part of that.  I’m not blind to the fact that it was the very same time that you were starting to fill up with your own cysts and nodules.  It’s no coincidence that my internist gave me the nickname “Lumpy” right about that time.   I’ve never had a doctor admit to it, but I know that whenever my body has major issues, you’re right in the middle of it all, taking the lead.

Anyway, there we were, barely pushing 30 years old when I saw my first ultrasound picture of you.  Up until then you’d been a mysterious shape hidden deep in my throat but suddenly you had form and substance and I could see what you looked like.

I gotta tell you the truth, you were really fucking ugly.  Where was the butterfly that I was told to expect?  Instead of a sweet little butterfly like everyone else had, I got Mothra.  Yep, there’s another blow to the ole self-esteem because now I could see that I was as misshapen on the inside as I was on the outside.  And, as usual, the blood tests showed that you weren’t doing your job.

That was when they put me on Synthroid and I went home hoping that this time I might be able to keep my weight down and hoping for a little more energy.  It was about three weeks later when I started to notice that you’d gone from being a slug to being as hyperactive as a hummingbird on meth.   I ended up in the emergency room one morning because my heart rate was climbing higher and higher and there were spells of palpitations and arrhythmia that made me hold my breath, waiting to see if my heart would start beating again.  It felt like a Phil Collins drum solo going on in there.  I had a fever and my grip on reality was a bit fuzzy to say the least.   After they had me stabilized I was told that I’d had a thyroid storm, something I’d heard about but never thought I’d experience because you’d made it a point to never be anything more than a lazy ass leech.  And my doctor was freaking out because you’d violated some endocrine protocol by going from 0 to 120mph in less than a month.  They told me that wasn’t medically possible, but there you were glowing with pride at your accomplishment.  I heard your evil chuckle even when my doctor called in the best endocrinologist he knew to take my case.  You whispered, “Bring it on” and that sent cold chills down my back.

That was such a special time for the two of us as we spent time together in labs and waiting rooms.  Who could ever forget those moments when I lay half naked in front of total strangers on a cold table with KY jelly dripping into my hair while they took all those ultrasound pictures of you?  Oh, and then there was the time that we did the radioactive iodine dye test.  That will always stand out in my memory as one of the most intense moments of our relationship.  I walked into the lab and the tech said she’d go get the little pill that I needed to take.  I watched with a dawning awareness that something wasn’t quite right while she put on a lead apron, goggles and lead-lined gloves.   She went into another room and came back holding a chunk of lead crystal the size and shape of a giant coffee can.   She carefully lifted out the core and then tipped a small capsule out into a paper cup.  Using a pair of tongs, she handed me the cup and told me to swallow it.

I stuffed my hands behind my back and told her, “Nuh uh.  You first.”

<sigh>  You’d think that lab techs would have more of a sense of humor than that because her negative response did nothing to reassure me about my safety.  However, alarming or not, the reality remained that I had to swallow the radioactive pill because my doctor said we needed it to learn more about you.  Gawd, it was always about you.

So I swallowed the pill and went home to see if I glowed under my blacklight and then went to bed wondering if I’d wake up the next morning with the ability to climb walls and throw spider webs on bad guys.  No such luck.  But the results were good for a change and the doctor told me that none of the nodules were autonomous.

Wait.  Back up there a minute.  Autonomous???  I realized with horror and not a small bit of irony that while I couldn’t get pregnant, you could!  They were telling me that the little nuggets you were snuggling so carefully inside of you could actually turn into little thyroid life forms on their own!  Oh dear gawd, now I had to live with the fear of developing my own “Little Shop of Horrors” inside my throat.  I think that’s when I started referring to you as Audrey 2.

That new endo really kicked your ass though.  That’s when I first heard about thyrotoxicosis, multiple nodule thyroid goiter, and Grave’s Disease which was more than a little scary but he had your number.  It was in the shape of a new drug called Tapazole and it got your sorry ass right under control!  The nodules stopped growing and you didn’t have the nerve to develop any new ones.  My numbers were normal and I was content with taking this wonder pill every day to keep you from running amuck.

Several years passed.  To be precise, there were 14 years of doing pretty good and not worrying about you.  The endo retired and my internist said that as long as I was doing well on the Tapazole and the nodules weren’t growing, he’d keep refilling it with the occasional blood test to make sure that all was well.   We had a maintenance plan.  Then my internist retired and all hell broke loose.

I’m pretty sure that you were working some voodoo because when I started looking for a new doctor to keep hooking me up with Tapazole, life turned into pure hell.   The first endo I went to was a Harvard graduate, but he certainly didn’t live up to my expectations.  I guess that someone has to be at the bottom of the class right?  He was a walking asshole.  The first thing he did was jerk me off the Tapazole because “no one should ever be on it that long”.  I was a little startled by that but still defiant because after all, it had been doing a damned fine job of keeping you under control for 14 years.  I didn’t know and didn’t care if it was right or wrong because the only thing that mattered to me was that it worked.  He didn’t seem to understand the word “maintenance” and insisted that I should have been taken off Tapazole the first year my numbers went normal.  He also told me that there’s no such thing as a thyroid storm.  I snorted in disgust and fired his sorry ass.

It took several months to get into see another endo.  That one was a little more open minded but he said he couldn’t put me back on Tapazole as long as my numbers were normal and he couldn’t find any medical precedence to continue using it to control the nodules.   In the meantime, all hell had broken loose with my body and maybe it was just coincidence but in my mind you were responsible for it.  It was like the warranty had run out on my health and suddenly everything broke all at once.  My hands were the worst of it but there was also a horrible pain at the base of my throat where my collarbone was jamming into you like a spear and “fatigue” and “brain fog” didn’t even begin to describe how I was feeling.  Oh, and let’s not forget the weight coming back with a vengeance.  Oh yes, I recognized your signs but this time it was like you had seen the Exorcist and were determined to give a performance to rival Linda Blair.

At least Endo #2 tried.  He did an ultrasound and discovered that your nodules were growing again and you’d developed a few more.  We were up to 15 at that time although only 7 of them were over 2 cm.  (Apparently if nodules are under 2cm they’re too small to consider which doesn’t make sense to me.  After all, if I have 8 nodules that are all 1 cm, that still adds up to an additional 8 cm.  How much space do they think I have in there????  Endo-math is as confusing as algebra to me.)    At my insistence, a biopsy was preformed and the results came back negative.  However, I received the results from the endo via a midnight phone call and he was slurring his words like he was drunk.  That got him fired.

There I was with no meds to control you and an ever escalating list of physical problems.   Carpal tunnel had developed seemingly overnight (the relationship between CTS and Graves was not lost on me).  I’d also been diagnosed with fibromyalgia, chronic myofascia pain syndrome, (great, more cysts and in my muscles this time), degenerative disc disease, and arthritis.   I watched my hands develop huge nodules on the knuckles and become twisted and distorted.   No one will admit that you did it, but since it happened within two months of my going off the Tapazole, I think we know who’s responsible for my once beautiful hands turning into gnarled claws.   Once again, you and my auto-immune system were running amuck.

Almost three years.  Three years you sorry bastard!!  That’s how long I went from doctor to doctor to doctor and no one would help me!  There were a total of 13 doctors in all and those doctor visits were some of the most frustrating and mentally debilitating experiences I’ve ever had.   Everyone wanted to put me on anti-depressants before they’d do anything else.  What part of “If you’ll fix what’s wrong with me and make me well I won’t be depressed” did these idiots not understand?  What part of “depression is a symptom and not a cause” didn’t make sense to them?  Over and over and over again I heard the dreaded words, “Your blood tests show your thyroid to be in the normal range so there’s nothing wrong with it”.  Were they all blind or just incompetent as a group?  How could they miss the fact that you were growing bigger and bigger and were actually overflowing my neck?  Were they all deaf to the words, “I’m having trouble breathing”?  Oxygen saturation tests kept showing my levels in the low 80% range but no one would make the association.  One helpful doctor put me on oxygen so I could be tethered to a machine at home and carry around an overweight tin can whenever I left the house, but he refused to admit that it might possibly be you obstructing my throat.  Not one doctor was even slightly impressed with my parlor trick of turning my head to the left or right and passing out due to lack of blood flow.   You were like the giant elephant in the room that no one would acknowledge.

Three years.  There were times when I almost gave up because I was just so damned tired.   Just the thought of going to yet another new doctor one more time made me put my head under the pillow and wish I had enough energy to cry.  I was so sick of repeating the same story over and over to every new doctor I saw.  And my whole life had fallen apart.  I’d gone from working full time to working part time to not working at all.  My weight had ballooned up by over 100 pounds and the figure I’d fought so hard to maintain since I was a teenager disappeared.  You know how I used to love walking everywhere and would often walk 4 or 5 miles a day?  That wasn’t even an option anymore because just a few minutes on the treadmill would wipe me out for a week.

You bastard.  You left me NOTHING.  My career was gone.  My social life dwindled to the little bit of time I could be on the computer and that was ever-decreasing because of my hands.  My health was degrading to the point where basic life supporting functions were in jeopardy.  The one passion left to me was my art and even that was suffering.  I was canceling orders and barely able to do enough in my studio just to keep my spirit alive.  And there you were, squatting like a malevolent Jabba The Hutt in my throat, ruling over all of it.

Then came the day last fall when I had yet another ultrasound and heard the tech whisper, “Uh oh”.  That’s not a sound you want to hear from an ultrasound tech.  I cajoled and wheedled her into telling me what she saw that alarmed her and she showed me a little snowstorm going on in the biggest of your nodules.  She explained, “These are microcalcifications and when we see them, especially in that configuration, there’s about an 80% chance that they’re cancerous”.

There it was.   The C word was finally out there.  I think that the normal reaction to that is shock, dismay and fear.  But thanks to you, my little malignant darling, I did a fist pump and joyfully yelled, “Yessss!  Now they’ll finally agree to take it out!!”

I happily went thru another biopsy and nodded calmly when the ultrasound tech and the doctor doing the biopsy told me that I should be prepared for a diagnosis of cancer.   When I sat in the exam room waiting for the doctor to come in and give me the results, I was mentally prepared and willing to go thru surgery, six weeks of being euthroid, and then radiation just to get rid of you.  In my mind it would all be worth it to have you gone.  Does that tell you just how much I’d grown to hate you?

Then the doctor came in and said the one word that made my heart plummet to the bottom of my shoes:

“Benign.”

No surgery, no thyroidectomy, no freedom from you.  Just another roller coaster ride of raised hopes ending with a crashing fall into despair.   No one understood just how devastated I was and I certainly couldn’t tell anyone because, well, let’s face it……being devastated about hearing that you *don’t* have cancer isn’t exactly normal behavior.

It was back to square one, begging and pleading for someone to rid me of this insufferable gland.   I would have settled for some holy water and a renegade priest at that point.  In fact, I was actually considering doing it myself and had gone so far as to search for “Thyroidectomies for Dummies” on amazon.com.    One quack internist actually referred me to an even quackier surgeon who said he’d do the thyroidectomy and scheduled the date…….only to have him tell the insurance company that it was elective surgery.   I wasn’t sure how many more of those roller coaster rides I could take.

And then came doctor #13.  I’ve always said that 13 is my lucky number and this time it really was.   This wonderful, wonderful man came into the room, put his fingers on either side of my throat and said “Swallow”.   My reply was the same as always, a strangled “Urrggk”.  He nodded and said, “That’s good enough for me.  Let’s get you scheduled.”

I swear to gawd, the heavens opened up and a golden ray of light shone down on this man.  I heard harps playing and saw a halo around his head.   I was so overwhelmed that I couldn’t speak and yet a part of me held back in fear that it would be yet another disappointment.  After all, I’d reached the point of scheduling the surgery before, only to have my hopes shattered so I was keeping a tight rein on my emotions.  I finally croaked out, “Is tomorrow good for you?  Coz I’m free tomorrow.  Or this afternoon.  What do you have planned for this afternoon?”

He chuckled and pulled out his calendar and we set a date just three weeks away.  I was so nervous that I called my insurance company half a dozen times to make sure that they had approved it and was ready to fight to the death if they gave me any trouble.

I don’t think I truly believed it was going to happen until the morning I arrived at the hospital, smiling from ear to ear.  Everyone on the staff from the admin lady in the admitting office to the pre-op nurses had never seen anyone so eager to get their throat cut.  But there I was……sitting cross legged on a bed in a backless gown with a blue lunch-lady cap over my hair, eagerly meeting each member of the surgical team as they came in to do the things they needed to do.  I’m pretty sure that other patients in pre-op were wondering why there was a party going on behind my curtains.

It’s been two weeks dear Thyroid and I’m already feeling better about life without you.  I can look down at my feet and still breathe!  I can hold my arms up over my head and not strangle myself!  Oh, and so much more!  I feel as if I had been lifted out of the depths of hell and am walking in sunshine again.  I know that there will be some struggles ahead as we work to adjust the levels of Synthroid but even that seems like a walk in the park compared to what you’ve already put me thru.  Your final size was 14 x 6.5 x 4.5 which means that I can call you a monster and really mean it.  You were lodged under my sternum and they had to bend me backwards like a taco to wrestle you out of there, but by gawd they did it.

Oh, and about that cancer.  The pathology report showed that the nodules were all benign which really surprised me.  What didn’t surprise me was the small lesion of papillary cancer they found hidden deep inside you.  The quacks could have biopsied you until hell froze over and never have found it until it was too late.  And yet, I knew that it was there and thanks to my tough-bitch-attitude, you and your little malignant friend are gone in plenty of time for me to still be diagnosed as cancer-free without radiation.  My instincts had told me a long time ago that you’d be the death of me if I had given up that fight.  As malevolent as you are, I’m even more stubborn.

And that dear Thyroid, brings us to the reason for my little chat with you today.  It’s not like I had to tell you that we’re breaking up because you probably figured that out when you saw the scalpel coming at you.  No, the reason I wanted to talk to you is to make sure you understand what a vengeful, vindictive, and kick-ass bitch I really am.   You totally underestimated what I was capable of doing to you.

You see, Lucky Doctor #13 is the head of endocrinology surgery at the University of Colorado.   And he knows another wonderful endocrinologist named Brian Haugen who is heading up a research study about thyroid cancer, specifically the cellular and molecular structure of thyroid nodules and tumors.  Before we scheduled the surgery, my wonderful surgeon asked me if I would consider participating in that study by donating some blood, some DNA, and you.

Honey, if I thought it would help, I’d have promised to get up off that surgical table as soon as they cut you out, gift wrapped you, and delivered you on a silver platter to the research department!   They told me that wasn’t required because they had people to do it for me, but if they had asked, I’d have happily done it.

As I write this, your sorry ass is being carved up into little slices suitable for microscopic slides.  Parts of you are in a freezer so they can look at you later if they want to.  And every time I think of you being carved, sliced, poked with needles, doused in chemicals and everything else that they will do to torture you into giving up your secrets……it makes me smile.  Not only did I beat you, but I’ve handed you over to people who will use you to fight against other rogue thyroid glands.  The irony of that is delicious.

Yes, you put me thru hell but in the end I’m bigger and badder than you are.   In fact, I am glorious in my victory!  I look in the mirror and see a sparkle in my eyes that hasn’t been there for years.  There’s a bit of a bounce in my step and I’m smiling a lot these days.  I have a scar on my throat that I wear as a badge of courage because I fought and baby, I kicked your ass.

Eat shit Thyroid.  This is the final ending for us.  There are no candles, no sad good byes, and the only break up song is me humming “Hit the Road Jack” under my breath as I walk off into a brilliant and promising sunrise.

Kiss my ass,

Deb

Bio: My name is Deb, I’m 49 years old and I’m an artisan.  I’ve battled thyroid disease since I was 8 years old.  I’m a third generation thyroid sufferer, the genetics passed down from my mother and my maternal grandmother.  My thyroid diseases have included hypothyroidism, thyrotoxicosis, multiple nodule thyroid goiter, Grave’s Disease, and papillary cancer.  Apparently my thyroid was dedicated to diversity.  Happily I can use past tense when referring to my thyroid because I became the proud owner of a thyroidectomy just two weeks ago.  My struggle with thyroid disease has been long and sometimes torturous.  I’ve lost a lot of things to thyroid disease but never my sense of humor.  Because of that, I’m a survivor and I’m ready to share my story.

Catch up with Deb at her Blog, Website or Facebook page.

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14 Responses to “A Break-up Letter”

  1. Lori says:

    Deb – thank you for sharing your story. I’m so sorry your thyroid caused you such grief and for so long, not to mention all the dumb ass doctors you had to deal with. But you are an amazing fighter and you have truly kicked ass and WON!!! I am so happy for you that you can now start anew again. And so glad you can go back to enjoying your art, which I just looked at and it’s amazing and beautiful. Thanks for the link!

    Stay strong. All the best, thysista!
    ♥Lori

  2. MollyH78 says:

    Deb,
    I have love for you, your struggle and your triumph! Talk about someone who is a super woman. Well done and bravo!!!
    : ) Molly

  3. jillautumn says:

    Deb-

    Thanks so much for sharing your story. You have definitely been through some shit. I had to chuckle when I read about your thoughts during the Radioactive iodine testing. I experienced those same things. I felt like I just became the star of some sci-fi flick.

    Thanks again for sharing

    -Jill

  4. Esther says:

    Deb,
    I’ve known you through Greenleaf’s forum for several years now, and I know how much you’ve suffered (even before reading this letter).
    I’m so glad it’s all behind you, and that things are looking up for you!

  5. Wendie says:

    Hi, what a remarkable story. I admire your courage, your humour and tenacity to rid yourself of the cause of all your suffering and am so pleased for you that you won your war. I hope the world is ready for the new Deb!

  6. Lolly says:

    Deb, you certainly did kick thyroid ass into touch. here’s to good health without it.

    Lolly

  7. Heidi says:

    I am so glad that I read this. I understood your suffering but not the capacity or endurance.
    You deserve something great for all that you have been through. I hope what you get is your life back to some sort of normal.
    Hugs to you my friend,
    Heidi

  8. Deb says:

    Thank you all so much for your kind words and for taking the time to read such a long letter. I started out thinking that I was going to write just a paragraph or two and before I knew it, all those words came spilling out thru the keyboard. It made me feel so much better! I hadn’t realized how big a bundle 40 years of bitterness can be…or how good it can feel to get it out in the open like that. Our thyroid diseases aren’t just invisible to other people–in a lot of ways we keep parts of it secret even from ourselves.

    My incision is almost healed up now and I’m ready to start moving forward to tackle other things. I’ve scheduled appointments with my pulmonologist, my rheumatologist, and my spinal specialist so I can work with each one of them on new plans of attack for my other issues now that the thyroid is gone. I know that they’re all going to be delighted to move forward instead of constantly working around that elephant in my throat. It’s amazing how that one little (or not so little) gland was creating such big problems in treatments for each of those doctors. I feel like throwing a party for all my *good* doctors so we can celebrate!

    {happy sigh} It’s really nice to be able to share this with people who understand. I’m so glad that Dear Thyroid is here.

    Deb

  9. Lolly says:

    Deb I am so glad you did share it with us no matter how long it is I read every word and related to so much other than the fact I wish I still had my gland, nodules and all.

    I hope that all your other health issues now can move forward and your quality of life improve drastically so you can enjoy the next 40 years or more.

    Thanks for sharing you with us you must have the record so far for endurance and patience.

    Lolly

  10. Anna says:

    Congrat Deb! 🙂 You’re an inspirational woman. Thank you for sharing your story with us. I hope we can all find the right help from the right doc!
    Anna

  11. Zari says:

    Deb thanks for an inspiring story of never giving up, at least not completely. I related to it some; I hated the scan with the RAI and felt like I was in some sort of a coffin, and was alarmed when the tech told me not to open the bottle with the I131 in it till he had left the room. He stood in the doorway watching to make sure I actually swallowed it. 9-11 has given people all sorts of terrible ideas I guess.

    Your thyroid sounds like it was trying to be some sort of superhero to the other insane thyroid glands. Mine was better behaved until it’s last few months of life. And my very first endo, after a lot of tests, more or less said lets kill it before it grows.

    I guess you’re real good at knowing when things are a bit off. Be sure to let your doctor know if you think you need to adjust the synthroid. I didn’t, and the results were not what I’d have wanted.

    Thanks loads. You write beautifully

    Zari

  12. Fantastic site! As a 30 year old guy with severe Graves’ Disease I’ve been kind of apprehensive about seeking out other people with similar experiences. Thrilled I found your site. I’m going to pour over it in the days to come.

    All the best and take care!

  13. Chrissy says:

    Awesome letter. I have graves and it totally sucks. Your the only one I have read that has mentioned the arms above the head strangling thing and CTS with graves. Thanks for the reasurrance that I’m not crazy! My endo thinks I am!

  14. Deb says:

    Chrissy, I wish I had a dollar for every time a doctor told me that something didn’t “fit” into typical thyroid symptoms simply because they didn’t know as much about the disease as I did. I’ve seen way too many doctors who were faking it because they couldn’t put my disease into a neat little template. I was up to doctor #12 before they even figured out that my thyroid was substernum! The gland itself was actually two inches lower in my throat then it was supposed to be. You’d think that someone would have noticed something like that but it didn’t fit into their little textbook definition and therefore they totally ignored it.

    I learned to throw a bullshit flag at doctors who would tell me “Oh no, that can’t be” or try to give me a vague or misleading answer just to get me out of their office. The biggest problem was doctors who insisted that my only problem was depression. One doctor actually raised his voice and argued with me when I told him that depression is a symptom of long term illness, not a cause. (I know depression causes a lot of physical problems but I’m pretty sure that it doesn’t cause thyroid disease) He’s also the doctor who told me that he was 100% positive I didn’t have cancer and said I should just forget about my thyroid and get on with life. Not only was he a bad doctor, but he was a bad person too.

    If your endo is leading you to believe that he thinks you’re crazy, then you need to get in his face about it. If he doesn’t change his attitude, fire him and move on. There’s no point in wasting time with a doctor who isn’t going to get you anywhere.

    I learned about the connection between Graves and CTS from my hand surgeon. He said there are several auto-immune diseases that can cause or aggravate CTS and Graves is at the top of the list.

    Can you tell I’m a little passionate on the subject of doctors who tell thyroid patients that their symptoms aren’t real or related to thyroid disease? LOL! I’m not discrediting all doctors, but we live in these bodies and we know when something is wrong. I firmly believe that the best diagnostic tool a doctor has is listening to his patient and believing what we tell them. A good doctor will research until he finds the answer. It’s the bad ones who dismiss something as silly or crazy just to avoid admitting they don’t know the answer. I don’t expect every doctor to have every answer……..but they should be able to admit that they don’t know it and promise to work at it until they do.

    I’ll get off my soap box now. {sheepish grin} I get a little carried away about this but all too often thyroid symptoms are completely dismissed as “all in your head” and we’re the ones who suffer because of it. We deserve better than that.

    Deb

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