Dear Thyroid

Dear Thyroid;

How are you? That's kind of rhetorical. However, I do appreciate your time. So, there's that; my approach. Respectful right?

Lemme tell ya, doll, it ain't easy. At the minute, you have me so freaked out, I don't know if I'm on spin or rinse.

Let's recap, shall we? I've released some of my anger towards you, not a lot mind you, but enough for now. Until I can control you, instead of you controlling me, I think we're in for a roller coasteree relationship.

At present, you won't stay balanced and nobody can tell me why. Your Graves' ophthalmology isn't getting better. 4-years of swollen eyelids and questionable vision that can't be controlled with corrective lenses, compounded by conflicting opinions, compounded by susceptibility to retina damage and my own fear of, heaven forbid, the "S" word (surgery), if, if, if I can't get you under control has left me, well, reeling.

I'm scared of you. I don't know how to create a symbiotic relationship between us.

As a last ditch effort, I did quite a bit of research and found a reputable endocrinology unit in a prominent hospital quite close to me. I emailed the head of endocrinology and medicine. I didn't think he'd email me back, really I didn't. But, he did. We had a lovely email exchange and 30-minutes later his secretary called me to schedule an appointment. I'm seeing him in November.

Let me be clear. I am not hopeful. I am open. Getting us into his office will be an overwhelming challenge in itself. I am equal parts confident that I will not settle for hmm'ng and haw'ng and that I will walk-in armed with my records and a list of questions that I expect to be answered. By the same right, I know I'll be terrified of yet another opinion that yields questionable results.

This brings me to another issue. My records. Accumulating them from all of my various doctors is proving to be a lot more challenging than I expected. The most important doctor I need my records from isn't releasing everything. I know I can call the AMA. I know I can get a lawyer to get my records for me- I'm astutely aware of my options. What worries me, truth be told, is that he fucked up and that's why he's not releasing them. See, I think I know where he fucked up. I just don't know to the degree.

So, dear thyroid, I guess we'll just wait and see what happens, won't we? God willing, someone will be able to get you under control. Otherwise, I am nominating you for cunt of the year.

Loving/Hating you,

Katie

Labels: Dear Thyroid Hate Letter, endocrinologists, thyroid hell

Why not?

We need to have shirts available, to those of us who deal with the thyroid.

What will it read?

Labels: make some money for reasearch, thyroid disease

I have hypothyroidism. I was diagnosed in 2006. But let's turn the calender back to 1999. Up until that point, I had been a normal, healthy, if obese, 17 year old girl who had hopes and dreams of working in the field of music, either as a performer, songwriter or as a teacher. I had normally been a happy, bubbly girl who enjoyed playing her guitar or trumpet, writing poems and short stories and dancing whenever I could. I was usually on the honor roll and honestly enjoyed all of my classes (well, except for Renaissance Lit.... sorry, Mr. H!)

Then I turned 18. Little by little, I became disinterested in most of my courses. I chalked that up to "Senior-itis" as I was going to graduate the following spring. It was hard to stay warm. I put on even more weight. I blamed that on my sweet tooth and my near lack of self control where candy was concerned. HOWEVER, I hadn't been eating any differently than I had been for the past 8 years. My skin turned paler, which was somewhat of a surprise, seeing as my grandmother was a Native American and I had inherited a lighter version of her coloration. I chalked that up to my preferring indoor activities after I had hurt my knee, which discouraged me from continuing on in the softball league. My skin became so very, very dry. I had no answers for that problem and went on to make Libriderm my "friend," but it never seemed to do more than to stop the itching, I was still painfully dried out on my skin. I resorted to wearing long dresses, skirts and pants to hide my legs because I was so embarrassed! I didn't know why I was so tired and sad more days than not. I also started feeling "foggy brained."

Somehow, I thought I would start feeling better after I graduated. I was wrong. On what should have been a day where I felt accomplished and happy, I was a numb shell of a person. I was cold, tired, itchy because of my dry skin, exhausted and depressed. My mom has a photo of me in my cap and gown receiving my diploma from the superintendent, I looked like a person with no emotion, a shell. It makes me sad to look at that photo, I wish Mom wouldn't keep it in a frame. In any event, I was still as stubborn and bull-headed as I am now and applied to the state university intent on getting a degree in music education. I was accepted and made the 5 hour drive across the state to begin college. I managed to muddle through my first 2 years of school and began to enjoy my courses. However, all my other symptoms just got worse.

I reached my breaking point when I realized that something was wrong with me during my first semester as a junior. I realized that I ran back to my dorm after every class and cried until I was too exhausted to do anything but lay there on my bunk. If I was lucky, I would have enough energy to wash myself up (so no one would think there was anything wrong) and get to my evening class. I went from being tardy once in a while to skipping classes because all I would do is cry myself stupid and try to numb myself. I couldn't pull myself up by the proverbial bootstraps, despite frequent attempts at it. I didn't want to get kicked out of school, so I dragged myself to the student health service and made appointments with the doctor and the counselor. The sessions with the counselor were not helpful, to be blunt. As for the doctor? All he did was take my vital signs, asked me how long I had been feeling as I did, then gave me a prescription for Paxil. That. Was. It. No tests, no asking about previous medical issues, if any. The Paxil did jack and shit for me.... aside from making me lose 10 pounds in one month because I constantly puked up anything I ate or drank (besides water). I went back to the doctor and he literally just gave me some samples for Lexapro and told me to take that instead. If anything, I became even more depressed. By that time, my grades had plummeted so low that I had been suspended and kicked out of that school. I still hate that doctor to this day. He could have gotten me the medicine I needed years earlier and I could have possibly not have been kicked out of music school if he had done ONE SIMPLE DAMNED BLOOD TEST!!

I spent the next couple of years feeling hopeless and defective. I was even more out of shape, out of energy and my memory was questionable. I began keeping a journal at that point just so I could have a record of what was going on. I didn't trust my own mind to remember it. That old book is full now, and more than a few pages are tear-soaked. I don't go back and read it, it's too painful. Eventually, I was dragged to the local low-income health clinic by my mother because she was tired of me spending most of the day in bed and spending my waking hours in a numb state. It was then that I met an angel who went by the name of "Kathryn." She was a nurse practitioner. She noticed that I had taken antidepressants before and asked if I'd be willing to consider taking them again. I told her in a polite way, "when hell freezes over" and she RESPECTED my wishes. Next, she began looking for other causes for my problems. She ran -shock of shocks!- tests and exams! She did everything that the doctor at the college SHOULD have! She arranged for a TSH blood test, and found that my levels were quite low. I was Hypothyroid. She told me that there was treatment for my condition. I was nearly in tears when I heard that. I didn't have to always feel like I was stuck in the non-smoking section of hell! I began taking Synthroid that week. Within 2 months, my brain fog was virtually gone, I had energy, and I was seeing the tail end of my depression!

A while after that, decided that I wanted to do something with my life again. Playing guitar and trumpet still bring back my sadness, so I didn't return to music school as I'd hoped. Instead, I applied to the local college. Despite my poor grades, they accepted me under the condition that I retook the classes I'd failed (that they teach at that campus). I worked my ass off and made the honor roll my very first semester there. Then I applied to the nursing program. I decided I wanted to help save lives like Kathryn had saved mine. I might not be alive today if it she hadn't helped me. As I type this, I am now a student nurse at my school. No one knows about the hell I've been through aside from God, my family and my advisor. I've been too scared until now to let anyone else know that I deal with this illness.

Sign me as,
Thankful to Be Alive in Big Sky Country

Labels: dear thyroid letter, hypothyroidism, teens and hypothyroidism

Hard to believe it's been two years.

Two years since I drove myself to the hospital. Two years since I was alone and scared, sitting and waiting for them to take me back beyond the swinging doors. Two years since I was transferred to the operating table, the staff chatting with me since they knew me from other operations. Two years since I was there then gone into that empty place you go when you have surgery... alone except for one soul I felt with me, keeping me from being scared.

Frightened is having an unknown, and someone there to hold your hand. Scared is doing it alone.

Two years since I felt that presence with me, until I came completely awake, so aware they were there, I asked the nurse when they had left, even though I knew the physical body was many, many miles away. Two years since I woke up, unable to talk, tubes and needles in my arms and hands, nurses adjusting levels and drips and giving me water. Two years since I felt the pad on my neck.

Two years since my doctor who was so wonderful said I had a malignant tumour. A big one. Two smaller ones. That he'd taken out my thyroid, along with it's evil twin.... that my lymph nodes were clean, that it hadn't entered my blood stream.

Two years. I went on to six weeks of waiting, one hour of treatment, a week of isolation and then my blessed meds. As I move on, more stuff shows up that is touched by the thyroid...high blood pressure, I can't retain calcium anymore (they took my parathyroid..oops!) an inability to control my body temperature, eventually heart issues... the thyroid is the little gland that can. But, you know, it's not cancer. It's not a relapse. I'm good with that.

It's Breast Cancer Awareness month... something we all need to check for, including men. I have one of the orphan cancers.. no ribbons, no races, no real funding. It strikes three times as many women as men, usually in their 20's. The older you are, the tougher it can be. Watch out for the symptoms... rapid weight loss or gain, hair loss, swollen ankles, a lump (my only symptom) being so tired.... Be proactive should you have any of these... it's a sneaky cancer, with TSH levels showing normal when you are actually ill. All of my blood results were clean the day of my operation, and I had Stage Two cancer.

I'd love to think cancer can be eradicated... Sometimes, I think they do have the cure, but, the drugs are so expensive, so many people have it, why cure something that generates so much money?

Buy cancer health insurance... I wish I had it. It's cheap, and you'll need it should you reach that dark place.

Cancer is second to love in the realm of scary words in any language. Be aware, be proactive. If you know someone with cancer, let them talk about it... listen. Bring food... bring yourself. It's not catching, it's just scary... and, when we are in recovery, when we are in treatment, when we are tired and struggling to simply get out of bed--food and company, even short term company, is appreciated. Show up! People tend to shy away... to convince themselves it's better to leave that friend or family member alone, let them rest.

Trust me, we'll tell you when you need to go. Cancer makes you very outspoken, no time for bullshit. Show up, help out... do a load of laundry, or change the bedding. Be there for us. When alone, the imagination runs wild... I used to swear I could hear the malignant cells trying to lure the good cells over to their side.. wearing cheap blue taffeta dresses and garish makeup... "Come on, big boy! Come to the dark side!"

Your body has betrayed you. It's turned on itself, eating itself. Why me? you think... what did I do to get this? (My cousins and I ran behind the DDT trucks... I've a feeling that's our source) There is anger and frustration at the waiting for treatment, irritation at paperwork and tests and the way you are suddenly weak, hair falling out...so, so, sleepy. Breathing becomes a task.

Medicines and time in bed, and the fight to win the battle, the war. Do not be afraid, your love and friendship and concern are needed to shore up the sometimes overwhelmed loved one.

I know many with cancer right now... two of them had no signs, and suddenly, they are in serious shape. I have a friend whose mother is now in the battle. It's interesting that both women I worked with when I was employed by The Man also have cancer... The Godmother is back to work, and cancer free. The other found out she has 4th stage breast cancer... no signs, clear mammogram. My cousin, MV, has the same cancer I do, and her sister is being checked next week. It shows how prevalent cancer is these days.

Check, have tests done when you are at that age or if it runs in your family. Be conscious of your body, listen to it... then, be firm with the medical profession. You know your body, they don't.

Two years. It changed my life in a ton of ways, gave me new friends, let me weed out emotional vampires.

Remission is a happy, happy place... trust me.

Dear Thyroid,

I’m not even sure you are still alive, but I feel that I must try to speak to you. It’s been 17 long years, and it’s crazy to keep this grudge going. We were so close for so long; remember? I never even questioned our friendship. We had a perfect, symbiotic relationship. I gave you good nutrition and iodized salt, and you gave me the perfect amount of thyroid hormone I needed. I felt good. I was healthy and energetic. And then, everything went haywire. You came under the bad influence of Dr. Graves. You started pumping out so much thyroxin that I got sick. I don’t think you intended for that to happen. You just got carried away. It must have been exciting, seeing just how much you could produce. But you almost killed me. I was so revved up with nervous, non-productive energy that I thought I was going crazy. I ate like a fiend, but lost 10 pounds in two months. It was like driving a car, with one foot on the gas and the other on the brake. So I went to the doctor, and he blamed you for all my problems. He said that the only foolproof way of getting better was to kick your ass with radiation. Okay, I suppose I should have consulted you, but I was so sick I wasn’t thinking straight. And I thought that the doctor would be able to apply just the right amount of radiation that would slow you down, but not kill you! So, I stuck my head into a lead-lined cage and drank the evil brew, while the administrator of the poison cowered outside the room. I can just imagine how horrible it was for you to be attacked by that radioactive iodine, which subsequently broke you down, until you could hardly push out any hormone at all. But I suffered too, old friend. I had thought that I would start to feel better after the treatment, but I got worse. Dr. High-and-Mighty hadn’t told me that was to be expected. It was only when my employer was ready to fire me because I wasn’t performing my duties well enough (“You said you’d straighten up after you got the radiation treatment. What’s your excuse now?) that I went back to the doctor for help. He told me it was to be expected that I would get worse before I got better, because as the radiation was battering my thyroid, the poor gland was squirting out hormones like a demented fire hose. So he wrote a note to the evil boss, entreating him to be patient with me. You, of course, couldn’t see the expression on the SOB’s face as he read the note, but he looked disappointed that he couldn’t fire me, without looking like the heartless bastard he was. So I stayed on the job, miserable but determined, while you got pulverized. Little did I know that you were so beaten down that after a couple of months you had nothing left to give, and I went from having too much thyroid hormone to too little. I felt like a zombie after a rough night in the graveyard; I had no energy, no strength and no hope of ever feeling better. But the wonderful world of medicine stepped in again and introduced me to Levothyroxine, a little purple pill that replaced most of the hormone that you were no longer able to give me. It’s not as good as the genuine article, but it gets me through the days and years, and I’d be dead without it. I keep hoping that you will be resurrected someday and we can resume our old, close friendship. Can you hear me? Are you there? If so, is there any chance of reconciliation? Give me a sign, little buddy.

Sincerely,
Madam Z

About Author MadamZ: "I can be your online grandma if you're under 20, your online mom if you're between 20 and 40, and your online sister if you're over 40. You can be *my* online mom or dad if you're over 80. OR, we can all just continue to shoot blurbs into the ether and see if anyone responds. The chances of a response are probably slightly better than sending a message in a bottle out to sea."

Labels: dear thyroid letter, written by Madam Z

Labels: drugmonkey, drugs, pharmacist perspective, thyroid disease, treatment thyroid

Hello Fellow Thyroidians;

Our Editor, FriedaBee has redesigned the MySpace Dear Thyroid page and it is off. the. hook. GORGEOUS. Check it out....

Forthcoming Interview today or tomorrow with our resident expert, DrugMonkey!

Labels: MySpace Dear Thyroid