I am Hashimoto's Disease.

Until our daughter was diagnosed with Hashimoto’s, I’d never heard of it. Her hair dresser was one of the first to suggest something was wrong; her employer (a doctor) noticed something was changing and suggested an endocrinologist.  Thyroid function tests didn’t show an abnormality.  It’s invisible (for awhile), always on the attack, and often misdiagnosed.  Even with no thyroid (also had thyroid cancer which is not always the case), she still has Hashimoto’s Disease. This is an excellent explanation.

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. If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world.

I'm so sneaky--I don't always show up in your blood work.

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 with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too.

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.

Shortness of breath or "air hunger?" Yep, probably me.

Liver enzymes elevated? Yep, probably me.

Teeth and gum problems? TMJ?

Hives? Yep, probably me.

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 ill and exhausted 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 can be.

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.

They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of of thyroid hormone medication for YOU.

Not what works for someone else.

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.

https://www.facebook.com/notes/thyroid-sexy/i-am-hashimotos-disease-a-letter-for-patients-family-and-friends/353693224649639

Holding my breath

This morning we're taking our house guests to the Patio Restaurants for pancakes. They love those, and it's this food critic's opinion that the Patio has the best on the peninsula. So this morning after my walk I poured my chubby legs in some linen short pants (don't know if they are Capri's) of a gorgeous aqua color and left the waist unbuttoned. They didn't fit at all in June, because I'd washed them (tag said dry clean only). However, how dumb would I have to be to pay $4 at the thrift shop, then $6 to dry clean them? I'd never buy this at a retail shop--the pants have little beads around the cuffs with a shear fabric insert. But for $4, they looked like they said, "fun in the sun."

I thought it would be easy to lose my Ireland and Italy gained weight this summer--maybe 1/2 lb a week sounded reasonable. However, even without a fast food restaurant within miles, and Abigail's Tea Room closed, I managed to find my way to the crackers and cheese and peanut butter in my own kitchen, as well as second helpings.

However, I have been walking every day, some days even 4 or 5 miles. My friend Lynne is now up to 10 miles a day--I think it's the competition from her favorite Republican slug. So although I haven't lost anything, the clothes are looser. My daughter, who was told about 6 months ago that she would need yet another medication to control her fast approaching diabetes, said NO, I'll do anything, even exercise. This is my sweet baby who smiled up from the crib the 4 hours she was awake, and then slept the rest of the time. (If you have an exceptionally "good" child who never minds going down for a nap, and sleeps 12 hours at night, Hashimoto's might be in her future.) And boy,has she exercised, dropping 4 sizes, now getting into size 10 slacks. So it can be done. Also, all her lab numbers are now normal. That's the good news--she's beautiful at any size, it's her health that's important.

Friday Family Photo

This photo is from November 1992 and we had gathered to celebrate birthdays. This was probably the first family event to which our future son-in-law was invited, as they had only been dating about two months. We really liked him and were hoping for the best. Down in the lower left I see a photograph album, so I'd probably shown our Lakeside album (saving the adorable baby photos for later in the relationship), because his parents who lived in Cleveland had also vacationed there, stopping around the time we began going there. We seem to be dressed for church, and the future SIL was also a Lutheran. We were afraid to let her know how much we liked and approved of this guy!

Our daughter had her first short hair cut in years--and it would grow out before the wedding to about shoulder length. I had one of those curly wash and wear and scrunch perms, but I had straightened it for that day--must have had some extra time. I'm holding reading glasses in my left hand--I didn't yet wear them all the time. I remember practicing walking with trifocals the next summer, but still took them off for the wedding photos (September 1993).

The furniture was all replaced before the wedding--I think we gave it to someone, but I don't remember who. There was a pull-out queen size mattress inside that couch--truly the most uncomfortable bed in the world, and I apologize to any relative reading this who may have spent a night or two on it. The blue chair on the right was purchased in 1963 and the couch around 1979, so they had done their time. The painting in the upper right is an old truck on a farm between Mt. Morris and Oregon, Illinois. My husband had stopped to photograph a barn, and when he got closer he realized there was a truck that had so blended with the weeds and trees, we hadn't seen it from the road. I think it is hanging at our son's house--at least I haven't seen it for awhile.

What you don't see here, and we had no way of knowing what was ahead, is our daughter's health was potentially fragile. We couldn't see that her thyroid was slowing down because she had Hashimoto's Disease, a form of hypothyroidism that usually appears in 50-somethings, not in women so young. Also, in her neck a goiter was growing downward which would eventually become so large it would impair her breathing and swallowing. The inflammation of the thyroid from Hashimoto's (an auto-immune disease) also causes constriction. Within a few years her weight would balloon, her thick curly hair would become brittle and thin, her personality would start changing and she would always be exhausted, sleeping for 18 hours if no one disturbed her. The weight gain hid the growing bulge in her neck. And, she was in the early stages of thyroid cancer. All lab tests put her within the "normal" range for thyroid function. Fortunately, both her employer (a doctor) and her hair dresser noticed, and she consulted an endocrinologist. But even then, the cancer wasn't found until the surgery to remove the goiter. So you might say it was a blessing in disguise. At the time, there wasn't conclusive evidence that the cancer and the Hashimoto's were related, but newer research seems to be pointing that way. (Repplinger, Daniel et. al. "Is Hashimoto's Thyroiditis a Risk Factor for Papillary Thyroid Cancer?" Journal of Surgical Research, Volume 150, Issue 1, Pages 49-52 (November 2008)).