I am Graves’ Disease

A letter I received recently, below, and because it’s so true, I thought I should share with you. I may help family or friends to understand what you are going though. So, it starts like that:

Hi. My name is Graves’ Disease…

1441175_612130972166955_8955644_nI’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hyperthyroid.

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.

I can make you hyper, not just your thyroid. Then make you drop like a stone: people will probably start to think you’ve manic depression, doctors certainly will.

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 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 take your, you won’t be able to remember what you wanted to say two minutes ago. I can even make you forget words, names and events.

I can make you loose weight no matter how much you eat.

I can make your thyroid gland swell so much it hurts to eat, while making you so hungry you have to eat all day long.

I can make your eyes swell too-so that they pop out of the socket.

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.

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.

Even when they do know it’s me, you’ll spend years trying the right medications, you may have the parts I attack removed or killed to get rid of me. That wont work-I’ll still be here, and I’ll still attack you.

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 Graves’ Disease.

(unknown author)

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9 responses to this post.

  1. I am currently on medication and my levels are in the “normal” range. I still feel like I am battling so many symptoms. However, my doctor says well you’re in the normal range. So what I am just going crazy? Do I really need anxiety medication? To make things more fun I am experiencing an increase in sweat…under my arms…SERIOUSLY! Adult acne…sweating, panic attacks, nervousness, ice pick migraines, insane sex drive, constantly asking myself am I seeing things clearly? Am I over reacting? I don’t understand how, or why I feel like this if my levels are “normal”?

    Reply

    • Posted by sbankova on December 3, 2014 at 2:24 pm

      Actually, you are not the only case with “normal” results and still have symptoms…And no, you’re not overreacting, you feel the way you feel and that’s it. May be your doctor should check the thyroid antibodies as well, they may be out of range which would mean you’re not euthyroid yet. The other option is to work directly on the symptoms (herbs, supplements etc.) or may be consult a counselor, because I personally believe that Graves’ disease is a body- mind disorder, i.e it’s a psychosomatic disorder. If you’re interested, check my latest book “Mental, emotional and psychological aspects of thyroid disorders”. http://gravesdiseasecure.com/emotions
      I hope it will help!
      Svetla

      Reply

  2. Posted by Linda Laster on June 11, 2015 at 4:08 am

    I have reached remission with my Grave’s disease about 3 months ago. I am no longer taking any antithyroid medications.
    Symptoms are still a problem. I go back to the doctor next month.
    As a preventative measure, I’m going in for a check up with my primary just to make sure there is nothing else going on.
    Stress and anxiety are still a really big issue. Work especially is stressful. Xanax helps me to wind down after work and lets me get a good night’s sleep.
    I changed a few things over the last year, I don’t know if it really helped me go into remission, but I want to share them with you.
    I do believe that I am in remission by the grace of God, regardless.
    I avoid red food coloring. I eat fresh fruits and veggies more. I quit using deodorant because I read it can lead to breast cancer. I lost my sister to that. A quick shower in the mornings keep me fresh.
    I cut down and have now almost completely stopped drinking anything with Aspartame. I have learned that I love squash and that has been a big part of my diet over the last year.
    I avoid eating out and choose to eat at home when possible.
    I avoid over processed foods. Lunchmeats, sausage, boxed dinners, frozen dinners. The less processed the better.
    However, one thing I’ve included more now than in the past is chocolate. It’s an instant fix for me when I’m stressed out. It will calm me down in 20 minutes
    I count my blessings everyday.
    It did take just over a year before my blood work came out good. My thyroid specialist is one of the best in his field. He had told me once that due to the size of my goiter, e didn’t believe remission was possible. I was one doctor’s visit away from agreeing to surgery to have the gland removed. He was as surprised and pleased with my blood work as I am.
    I know there is always the possibility it may return, so for now I will just celebrate, monitor and be aware of what I eat and what chemicals I am exposed too.
    Now it’s my lifestyle and it’s no problem to avoid things I feel are not good for me. Sure, I will have a red velvet cupcake on occasion or a diet soda but those are treats and I keep them to a minimum. I hope this helps someone. My best advice ….trust God and make the changes you know you need to make for yourself.

    Reply

    • Posted by sbankova on June 11, 2015 at 7:40 am

      Thank you for sharing your journey with all of us! I am very, very happy to hear that you’re in remission!
      I hope this information will help other people as well!
      Stay healthy!
      Svetla

      Reply

  3. Posted by Linda Laster on June 12, 2015 at 9:46 pm

    Update….I went in for a visit with my primary’s nurse practitioner because the fluttering heart and skipped beats symptoms have gotten worse since my specialist took me off of the Methimazole when I went into remission. I had my labs done just last week and all of my levels are great. The NP believes my symptoms are a result of coming off of the meds. I am currently on a 24 hour heart monitor. She wants to rule out any heart
    problems before we work on trying to manage the symptoms. I should know something by the end of next week. I feel ok for the most part except for the heart flutters. It’s scary…I agree with the NP at this point, I have had this symptom since the Grave’s started and lived with it for several years before I found out about the Grave’s and began treatment. So now it’s been about 20 years of dealing with this disease.. I would urge everyone to not jump into surgery or the radioactive iodine treatment right away. Like I said before, I was ready to agree with having the surgery when I found out I was in remission. Yes, the symptoms are back, and I am sure that once all of my test results are in, I will be able to manage these as well, most likely with medication. Thanks for letting me share…..we are all in this together.

    Reply

  4. Posted by Jacquline Cogswell on June 13, 2015 at 2:58 am

    May God Be With You Always

    Reply

  5. Posted by chris on October 20, 2015 at 3:34 pm

    Every blog I’ve read over the past 3 years is the same.. Seems that once your afflicted, you’re afflicted.. I traced mine back to early childhood and am now 48, so figure I have inflicted irreversible damage in my body. Finally got to an Osteopath and get blood results for food / celiac in a few more days. I have absolutely NO trust in western medicine at all!!!!! The mental aspects have been devastating for me. I went to a top endocrinologist and was offended and insulted at his blatant ignorance!!! I empathize for all who suffer from this, as you have no friends, family or even spiritual support from those closest to you.. the word “nightmare” is the best description for my life..

    Reply

  6. Posted by leanna on January 10, 2017 at 10:09 am

    This really rung true for me. The way Graves disease has taken over my life in the last 6 weeks is unbelievable.
    I was diagnosed with Graves disease 7 years ago. It went into remission after 1 year of PTU treatment. I was allergic to carbimazole. I had despised the rollercoaster of using these medications and constant dosage adjustments, swinging to and from hypothyroid and hyper thyroid during that time.
    This time after noticing similar symptoms as last time I was diagnosed again. It has come out of remission and as your story said it is sticking to me.
    I was put on PTU again along with propranolol. Like last time. My extremely high T4 and T3 levels started to stop however I immediately felt sick after starting the PTU with high temps and no other symptoms. After going back and forth to the doctor demanding that I have extra blood tests I was sent to hospital where I was diagnosed with medicine induced agranulocytosis which left me very I’ll in hospital for 10 days. I had to receive gcsf injections to stimulate my bone marrow into making neutrophils. After discharge I we bot Medicare for 3 weeks in Thu time I have seen how my thyroid is attacking almost every part of my body and messing with my mind.
    They are now trying to bring my levels down using lithium which is supposed to produce a side effect that will lower my levels to a safe range that will allow me to have a total thyroidectomy. Cannot have RAI as have an 8 month old baby. My options are now limited medically as the lithium may not work and my levels are at a dangerous level and thyroid storm is apparently a real threat.
    I would like to treat naturally but time is not on my side.
    So Mr Graves disease you sure are good at your job

    Reply

  7. Posted by Lisa Brewer on March 14, 2017 at 5:57 pm

    You forgot Hand tremors
    Eratic heart beats
    Night sweets
    Blured vision
    Sore eye sockets

    Yes you did mention
    Hair loss
    Dry skin
    Tied
    Forgetfullness
    Leg aches / mussel aches
    Ive had it for 3 yrs and 5 yrs was just thyroid issues… so 1 magic pill of carbizamole work better than 3 a day i was on .. now more blood tests to find out whats feeding the auto amune disease .. so ova this so called graves disease..

    Reply

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