Graves Disease

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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 velcro...ed 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.

(author unknown)

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  • Posted

    Wow, thank you for this. People always ask me what Graves is and this says it all.... I've felt all those things. I've always had difficulty explaining it. Now I can just give them this letter. Also I had swollen feet but my doctor said that was nothing to do with the disease.
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    • Posted

      I've been dealing with this disease for almost 2 years and its hard trying to get people to understand the seriousness of this disease.I felt this letter explained it all. As you can see swollen feet is a symptom of the disease. Take Care...
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  • Posted

    Have you got tested to Vitd and Magnesium deffiency?  Found out about those diffieciencies here and got tested for it. Now im taking VitD + multivitamins(no iodine) as per endo added to my methimazole. this is my 2nd year at stable dose and crossing mt fingers I just reached from 136lbs in Jan 2016 to now 129at April 2016. 
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  • Posted

    Michelle

    This is brilliant.

    It hits the right note -if you see what I mean. 

    It sums up the way this horrendous condition makes me feel.

    It also answers so many questions. Questions such as why do I feel tired and want to sleep 24/7 yet suffer from insomnia? It is all there. Very accurate. Very poignant.

    Thank you.

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  • Posted

    Thank you so much for this. I have onlly just been diagnosed and already almost all of this registers so true.
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  • Posted

    Hi Michelle, thank you for posting this........very poignant and seeing in print how I actually feel and how I have tried to explain how I feel to GP's, Endo's, friends and family made me weep.  I was diagnosed with Graves three years ago and had/have all of the symptoms mentioned plus more AND I am still not on the right dose of thyroid medication AND I have been referred for "therapy" with a psychiatrist because of my anxiety>breathlessness>panic !  I AM a shell of my former self, a much smaller more fragile shell.  Graves has changed me and my life, turned it upside down.  I no longer know or recognise myself, how can I expect anyone else to understand.........that is.......anyone else but a fellow Graves sufferer - as stated above !

    Best wishes to all Graves sufferers

    Christine

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  • Posted

    Thanks for sharing this Michelle, I have seen it somewhere before and thought it was spot on. Our disorder is thoroughly misunderstood and underestimated by those who do not have any experience of it. Thank goodness we know, understand and support each other through this site.
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  • Posted

    well done michelle60449 This is so true I  have had high blood pressuresince Graves took over thirty years ago Doctors either dont listen or cant understand Graves dosent like blood pressure medication my blood pressure this week 210/110 first given Amiodine 5mg took it in the evening up all night with cramp in my left leg thought something was going to burst 2nd night couldnt breathe until I vomited muscus BP 196/120 all pain no gain medication changed toFolikXL5mg 3 days now BP 160/104 slightly lower. Over the years the list of BP medication is endless all with awful side effects urine retension, weight gain, rashes on my arms, breathing problems (now waiting for an appointment Asthma Clinic) Lercanidipine caused sleep problems, Ramipril eye problems.Lisprinal skin rash.  Back at the surgery on Friday I am sure they will increase the dose. Every now and again I stop taking BP mecdication BP drops to 157/95 and I feel so much better can do the housework and tend my garden. Duretics have often been added which has ment I cant leave the house if I take them in the morning,taken  at night no sleep have had to get up as many as ten times so dont bother going to bed. I am sure if I lost some weight I have gone from 8stone to twelve stone cant remenber which BP med did this although I think it may have been propanol prescribed after radiation treatment. Thyroxine is OK though. regards Jacky  
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    • Posted

      Hi Alberta

      Sorry to hear about all of this. I am taking valsartan 80 mgms daily for control of my blood pressure. i am unsure if that one is suitable for you or not or whether you have tried it in the past.

      Obviously this will have to be prescribed by your dr.

      I know when my GP first commenced blood pressure tablets she told me that she may have to keep changing the type/make of blood pressure tablet according to my individual response.

       

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    • Posted

      Hi Cindy havent heard of this one although they very often come under a different name my Dr tried to fool me by trying the same drug under a different name to see if I had the same effect. As our surgery is under pressure I now only see the nurse. I got Graves in my forties and I am now 72 I cant understand why after all this time the correct  medication hasnt been found.

        

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    • Posted

      So sorry your going thorugh all of this. I hope they find the right medication for you so that you can start feeling better soon. I know it sucks but hang in there.
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