This sums it up for me. I had to share

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"A letter to you from Graves’ Disease" 

Hi. My name is Graves, and I'm an invisible autoimmune chronic disease that attacks your thyroid gland. 

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 anyhow 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! 

Oh, yeah, 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 loose 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.) Maybe you 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 thyroid meds 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 doctor how debilitating I am and how sick you really feel. In all probability you will get a referral from the 'understanding' (clueless) doctor, 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.

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 when 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 thyroid pill" 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.

I've been trying to keep this next part quiet, but since you're reading this you already know.

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.

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9 Replies

  • Posted

    Hi Michelle.  I 'only' have an underactive thyroid and not the terrible disease that is trying to control your life, but I empathise with you and can relate to many of the symptoms. My heart goes out to you, and all other sufferers, and I'm sure everyone on this forum knows how difficult it is to make 'normal' people understand how helpless and frustrated (not to mention downright ill) these illnesses can make you feel.  Even if you can't always get the answers you need here, at least you know that this is a place where you can offload and get the sympathy and understanding that we all need from time to time - and to know that you aren't alone.  Don't let this devil of a disease defeat you.  
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  • Posted

    Michelle

    This made me smile, it made me cry.

    I was diagnosed hypothyroid 12 years ago which has been "managed" by levothyroxine. Early this year after a blood test my GP told me I was taking too much levo and my dose was reduced. Ever since I have felt dreadful and have most of the symptoms you describe. I recently had blood tests all of which were "normal or satisfactory" I honestly don't know what to do next. My GP thinks its my "low mood" (what he really thinks is I'm a hypochondriac) Am I hypo, hyper or just crazy?

    I really feel for you and can relate to the frustration.

    Best wishes

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    • Posted

      Have you seen your endocrinologist and tested your levels? If you felt better on the meds before the decrease I would assume they shouldn't have changed the dosage.. I know that you can go from hyper to hypo when your thyroid stabilizes. Please don't hesitate seeking a second opinion.
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    • Posted

      Hi Michelle

      I have not seen an endocrinologist, only tests by GP. I don't think my levo should have been reduced but as levels are now "normal" my GP not keen on increasing it. I'm intending to go back to the doctor.

      Thanks for your advice.

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    • Posted

      Hi Libby, I am in a similar situation to you. If I take the recommended dose I feel more ill than I did before with lots of symptoms, if I say I needmore they do not agree, but I have also found that if I take more by adding a natural thyroid to it  on my own it does not raelly help. I  am beginning to think I made a mistake in taking any medicatin. I was just on the border when I started and have got worse and worse since.
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  • Posted

    Hi Michelle, I loved how you summed up all the problems associated with Graves Disease. I know all the symptoms all too well myself, but it will never defeat me either. It is just a pity those that should know what this terrible disease can do seem to keep their heads burried in the sand! Hopefully one day, but until then I plan to keep laughing, keep loving and keep kicking. Take care xx
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  • Posted

    Hello Michelle:

    My name is Shelly and I am a nurse and I have Hashimoto's thyroid autoimmune disease, and I know exactly how it feels to have an autoimmune disease. I have had this since I was 27 and am now 54.

    Thanks for the letter, it sums up many years of feeling for me.

    Shelly

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