Found this on a persons FB page A letter for pa... - Thyroid UK

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Found this on a persons FB page A letter for patients, family and friends - I am Hashimoto's Disease

loulabel profile image
13 Replies

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 everybody 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.

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loulabel
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13 Replies
joprince profile image
joprince

I love this it about says it all. Thanks so much for shareing it.

Lenny profile image
Lenny

All so true.....think I should copy this & leave it lying around at my work & doctors surgery :-) x

Southlondon profile image
Southlondon

wow - strong stuff....

evey profile image
evey

Hello, Loulabel. Thank You for posting this, I think it covers such a lot of what we suffer in our every day lives. How frustrating it all is and how hurtful people can be, even those (espically those) closest to us. I am so tired of it all, due blood test results Monday, but don't hold out any hope of any kind of help, even though I have a new surgery and gp. Guess I'll just have to continue being a hypochondriac, best get out there for some fresh air and exercise and I'll be fine ! (my last gp's diagnosis and treatment plan!). Don't you just envy their intelligence and commonsense.... NOT !

Evey.x

loulabel profile image
loulabel in reply toevey

Hi Evey,

Hope everything gets sorted for you soon. It is so wrong that we all have to suffer so much before we get the right diagnosis and treatment.

best wishes,

Loulabel

Dillysmum profile image
Dillysmum

Excellent post...clear and true...WOW....Is it alright to copy and post?....After I have been for my fresh air walk, of course!

loulabel profile image
loulabel in reply toDillysmum

Of course you can, I copied it from a person on FB that in the same boat as us all.

Thanks for that ! That's telling the way it is.x

Wonder how my Dr might react to that....

Angel54 profile image
Angel54

This rings so true for me,

Some GPs and friends and family havent a clue, Only the unfortunate ones who get this disease understand. xx

angel2006 profile image
angel2006

I have felt like this for so many years, backwards and forwards to see a doctor who will give me more pain killers ,more anti-depressants.i only found out a couple of years ago I am hypothyroid.,heres a box of pills take them for the rest of your life.now I have to see a dietician because of the amount of weight I have put on,i have to go to physio for the pain im in .oh yeah and I see a shrink once a month.i have never been told what problems the thyroid causes,or how I would feel but reading your post I felt like crying because that is how I feel..thank-you so much

Hiphypo profile image
Hiphypo

Wonderful - thank you so much xx

sarahstevenson profile image
sarahstevenson

Thank you so much loulabel !

I have been trying to compose a letter to send to my mother's GP. Sadly Mum died in 2011 following discharge from hospital although suffering perforation of her bowel during a polyp removal. She was moved from "urgent" on the out of hours list at 7:00am to end of morning visit by the GP surgery to her care home. She was dead when they got to her 7 hours later - my sister and I think it was due to her being oh "just Hannah again". The GP said she "knew our Mum well and cared for her" - didn't even know she had had head injuries as a child , shock treatment since her late teens - and diagnoses of poly myalgia rheumatica lots of drugs anti d's all through her life and even iodine treatment as a teenager! The list is endless. She was told her 100mcg of thyroxine was "fine". The coroner wouldn't even call the GP or out of hours to the inquest! We wore ourselves out trying to get him to change his mind.

Much to our alarm the GP is now working in palliative care - we think she needs educating. This letter will be a helpful summary - thanks for posting ! X

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