Saturday, April 18, 2015

Living with Hashimoto's Sucks!

This past week has just been a bitch mentally.  My Hashimoto’s is kicking my rear and Princess Bear (PB) has been in rare form.  I had an appointment with my endocrinologist this week which is a good thing since I have been feeling so crappy.  The bad thing is that in general he is a very by the numbers kind of Dr.  From many things I’ve read about thyroid issues it seems as though treating straight by the numbers is not always the best idea.  Treating by symptoms seems to make more sense.  My Dr. isn’t big on that school of thought.  I’d had symptoms of Hashi’s for years.  I’m not exaggerating either.  Haven’t talked to my former BFF in over 6 years and she swore something was wrong with my thyroid and had been saying it for several years.  Actually when I went to the Physicians Assistant for something else about a year ago she said that she was going to test my thyroid.   I actually told her not to bother that it had been done many times and my numbers are always in the normal range.  She said that she was going to dig a little deeper.  One of the tests she ran was for thyroid antibodies.  My numbers were off the charts.  As in several thousand times what would be considered normal.  That finally was enough to send me to the Endocrinologist.  I went with the one my sister had seen for her post partum thyroiditis.  As I mentioned he’s a good Dr just very by the numbers.  That was almost 2 years ago.  He started me on Synthroid a T4 hormone.  While it did get the racing heart issue to stop there was very little gain.  I kept on telling him that I am still exhausted like can’t function at times exhausted and still experiencing a lot of joint pain.  Every 3 months I would mention the same thing.  Finally he decided to add a T3 hormone into the mix.  I’ve only been on it for a couple of days.  I’m also not falling asleep and napping at the drop of a hat.  I’m feeling very hopeful!  Living with any autoimmune disease sucks but having life pass you by because you’re too damn tired sucks even more!  So here I am keeping my fingers crossed that this really does work! 

Below is something that is in the archives of a Hashimoto's group I'm part of online.  If you know someone that just generally feels very run down and blood work isn't showing anything encourage them to have a test done to check their thyroid antibodies.  Getting well takes time (as you can see I still have good days and bad but I'm way better than I was before my diagnosis.). 

I am Hashimoto's Disease ~ A letter for patients, family and friends

This got a huge response from TS members, so I decided to make it a "Note" ~
I thought it would be helpful to have it available for patients, but also for family and friends to read to understand the gravity of how this illness can and does, impact the lives of Hashimoto's/hypothyroid patients.
Wellness is possible and IS the goal! It often takes a lot of time, a lot of patience and a good Dr. (who you may have to do some searching for) to guide you.
So please don't feel defeated by this, make it empower you to learn everything you can about this disease, find the right doctor, ASK family and friends for help, and fight for your health! 

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.

1 comment:

Kerry Lerew said...

I have Hashimoto's. It's a small number count, but I feel the effects of it all the same. I've re-arranged my diet to cut out gluten and a lot of sugar. I eat mostly organic things, and I use essential oils daily. All that said, when I first heard that I had this disease, strangely, I had such a peace in my heart. I wasn't afraid because I know that God has me in His big hands:) He's bigger and stronger than all our diseases and problems! And I'm so thankful for that. While I was reading that poem about Hashimoto's just now, it was so full or fear and unrest, and in I kept hearing a voice in my heart from God saying, "but I Am the Great Healer!" So, no matter if I am to be healed on this earth, or to be made whole in heaven, I know that God has my life in His hands:) I hope you'll take comfort in that as well! God bless!! <3