I am Hashimoto's Disease

Gena Lee Nolin posted the following letter on her Thyroid Sexy Facebook page.  I find comfort and support in the words, and it reminds me that there are many other people, who are suffering from some of the same debilitating and annoying symptoms that I deal with on a daily basis .  The letter can also offer an explanation about the illness when you are unable to find the best way to articulate to your family and friends  what it means to have the disease.

Hi.  My name is Hashimoto's.  I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid. I am now velcroed to you for life.
Others around you can't see me or hear me, but YOUR body feels me.
I can attack you anywhere and any way I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I'm here to stay.
I hear you're going to see a doctor to try and get rid of me. That makes me laugh.  Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.
Can't get pregnant, or have had a miscarriage?
That's probably me too.
Teeth and gum problems? TMJ? I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how sick you really feel.  In all probability you will get a referral from these 'understanding'  (clueless) doctors, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I am.
Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
They'll  also say things like,  "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Hashimoto's Disease.

Also, I went to LabCorp yesterday and they had some blood work drawn to check some vitamin and mineral levels that are often involved with Hashimoto's, such as Vitamin D,  B12, Ferritin (a protein that stores and releases iron), Iron, and Folic Acid.  I am also being check for the Thyroid Stimulating Hormone Receptor Antibody (TRab), which is found in Grave's disease.  My mom had Grave's disease and it is possible to have it simultaneously with Hashimoto's disease. I suggest getting tested for both Hashimoto's and Grave's, rather than starting treatment and finding out down the line that you have Grave's disease. I am also awaiting results for a blood test called the Adrenal Antibody Test, which checks for autoadrenal antibodies.  I do not suspect that this test will be positive because it is not so common in Hashimoto's sufferers (about 7% according to one lab's website), but I got it done just to rule out Addison's disease, but a positive result can still indicate adrenal insufficiency, which is another issue with Hashimoto's.

 So, we are hoping the results will come back before my first doctor's appointment, which is scheduled for Thursday.  We hope to get down to business with proper treatment right off of the bat. Wish us luck! I'll post after the 'big' day.



9 comments:

  1. An endocrinologist told me there is no such thing as adrenal insufficiency...

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  2. I believe that you meant to comment that an endo told you that adrenal fatigue is not a real condition. Adrenal Insufficiency is a precursor to Addison's disease, which is what I was tested for. The immune system can build antibodies against the adrenal glands and attack it, just like it does in the thyroid. The adrenals can be affected in a thyroid disease and they play an essential role in thyroid health. This condition is not disputed in the medical world.
    As for adrenal fatigue, I'm of course, not surprised that the endo would tell you that it is not a real condition. They tend to not read studies outside of what their drug reps. give them. Thousands of people have signed a petition to demand better treatment from endo's for thyroid conditions(http://www.change.org/petitions/endocrinologists-patients-with-thyroid-dysfunction-demand-better-care). Adrenal Fatigue is indeed controversial, but published studies have proven that it is a real condition. Ironically enough, the Endocrine Society actually recommended that endo's test for adrenal health through the salivary glands, and yet many of them fail to do so. If I were you, I would also conduct research outside of what the endo. tells you when it comes to thyroid and adrenal health. I had to learn that the hard way. Adrenal fatigue is a modern condition due to the stress that's imposed on our bodies, especially in women. You can order saliva testing online too. They also checked my female hormones via saliva. :)
    Here's a good article that sums up the controversy- http://articles.chicagotribune.com/2010-08-21/health/ct-met-adrenal-fatigue-20100821_1_adrenal-failure-adrenal-glands-unexplained-fatigue

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  4. I to0 have Hashimotos. I was diagnosed in 2009 and it totally changed my life. I am tired all the time, have extra weight I cannot get rid of (used to be tiny) and forget what i am saying in conversations! I also have extreme Vit D deficiency and am being tested for Antibodies that are keeping VIt D from being properly absorbed. I feel your pain and am SO glad to find your blog!

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  5. let's start with I don't type .:-} I'm 37 male and went undiagnosed for 10 plus years... I cried reading this I cried so hard.
    My heart goes out to every single person who has to deal with this. I truly believe that no illness should go over looked.
    Hashimoto's is a gateway illness it truly needs more publicity. To all you doctors reading this that work under an AKA practice, listen to your patience spare no expense stop reading WebMD and start thinking outside the box 'cause every patient is different. My illness, was undiagnosed for over ten years, I was told I had anxiety LOL you bet I did. What I go through would give anybody anxiety, and when I walked out your door with no answers, I have about four million's other feelings. Finally after 19 trips to the ER by Medic One, heart rate 190, at this point I was 140 pounds. On the 19th trip, I freaked out, screaming, demanding I was dying. They put me in the mental ward but guess what finally happened? They took my thyroid labs! A few hours later, I was emitted to the MEDICAL ward. I C U. since then I have a label for what I have but I feel as I suffer so much, I will hang on for my girls. Much love Chris

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  6. (Please know, I am NOT rebuking the author, but only this evil disease) Dear Hashimoto's: You have announced yourself and I am here to denounce you in the Name of Jesus! I introduce you to my Lord, Jesus, Who is the Christ and the only begotten Son of God, though you already know His Name! In response to your comment, "Others around you can't see me or hear me", you are sadly mistaken. You are not hidden from His eye! Daniel 2:22 "He [The Lord] reveals deep and hidden things; He knows what lies in darkness, and light dwells with Him." The light that dwells within my Lord shines into his children and His light has revealed you in your hiding place. He has uncovered your identity and your evil plans. He even caused you to announce your name and your plans! In response to your comment, "I am now velcroed to you for life", (yet another lie) I say to you, "LEAVE NOW in the Name of Jesus and never return"! Jesus has sent you and many like you out of people's lives while He was on the earth and in His Name, your type will continued to be driven out of many victims to come. Matthew 8:16 "When evening had come, they brought to Him many who were demon-possessed. And He cast out the spirits with a word, and healed all the sick". You have made a long list of threats against your VICTIMS - now I will give a brief description of Who the Lord is and what His plans are for His CHILDREN: Jeremiah 31:3 "The Lord appeared to us in the past, saying: “I have loved you with an everlasting love; I have drawn you with unfailing kindness." Exodus 15:26 "He said, 'If you listen carefully to the Lord your God and do what is right in His eyes, if you pay attention to His commands and keep all His decrees, I will not bring on you any of the diseases I brought on the Egyptians, for I am the Lord, who heals you'.” Jeremiah 29:11-13 "'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on Me and come and pray to Me, and I will listen to you. You will seek Me and find Me when you seek Me with all your heart.'" Isaiah 53:5 "But He was pierced for our transgressions, He was crushed for our iniquities; the punishment that brought us peace was on Him, and by His wounds we are healed." John 10:10 "The thief comes only to steal and kill and destroy; I [Jesus] have come that they may have life, and have it to the full." Romans 10:13 "for, 'Everyone who calls on the name of the Lord will be saved.'” Thank You Lord Jesus for saving me! I pray that everyone who reads this will choose You and Your beautiful promises over the evil promises of this "disease". I thank You for our deliverance from Hashimoto's and every other sickness that may be "hiding" in the darkness. I bless You Father for Your tender, loving kindness! Thank You for giving Your Son, Jesus to save and heal us. In Jesus precious and Holy Name, Amen.

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  7. I too cried as I read this story...I paralleled so many of the symptoms. I have a doctor who tells me I am not disabled I just have a lot of chronic conditions including but not limited to diabetes, fibromyalgia, chronic depression, vit D deficiency which was picked up by my pain management psychiatrist...Thank You Dr. Aria. I too get in the middle of a conversation and forget totally what I am talking about I am told it's ok (pity) it is just your Fibro Fog acting up. The sad part is as you listed symptoms that may or may not be Hahimoto's I began to wonder which would be better one diagnosis that fits all my symptoms or several chronic illnesses with individual labels. I will be praying for you and for all who suffer with unseen chronic conditions. Bless you for sharing

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  8. This was forwarded to me by a friend. As I sat at my desk reading it, all I could do was cry. I was diagnosed with fibro in 2001 and have been going down hill ever since. I have recently had my thyroid bloodwork done and was told "I have a GREAT thyroid like that of a child". They get tired of seeing me, I've been on so many medications and none seem to work. Physical therapy for the pain which doesn't help. Kids think that I'm slowly dying because I can't function daily. I have such a hard time getting up and getting to work. But in the military, you don't really have a choice. While I'm glad to see that I'm not alone, I do not wish what we go through on anyone. May you have one bright blessed day at a time. Kimberly

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  9. Wow. A wave of emotions went through me as I read this. I have suffered with hypothyroidism and depression for 9 years with no positive changes. I was to my last breaking point, not one drop of energy left, hardly able to talk without crying, so sad, so angry, so sick and tired of being SICK AND TIRED and no one believing me!!! Finally, I took my mother with me to the doctors. (I'm 42 btw). She was able to convince them that my symptoms are real. Finally, they tested my thyroid antibodies. It was so high, the lab couldn't measure it, greater than 1000 is all they could report. So off to the endocrinologist. That's when they said I had Hashimoto's Thyroiditis. Because of the worsening "brain fog" & sleepiness, they are also sending me to a neurologist to determine if it's Hashimoto Encephalopathy. But although I feel better just knowing I wasn't just plain crazy, I feel a little hopeless after reading the many articles about this disease. Kind of sad knowing there is nothing to make it better. I don't have the energy to exercise, my depression is so debilitating, I certainly don't feel like dieting and exercise. It's very depressing to think that this is just how it will be. I don't know how I can keep dealing with it. I'm so so so tired of it all. Maybe it will help just knowing that there are others who do understand. Thanks yall!

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