My Name is Hashimoto's

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RoseTears143
RoseTears143 Posts: 1,121 Member
I have seen this in a few places on the internet, but want it to be here where we can all read it as many times as we need to. Feel comfort in the fact that you are NOT alone and it' NOT all in your head!!!

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.
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 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 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.
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 Hashimoto's Disease.
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Replies

  • vanessarose121
    vanessarose121 Posts: 14 Member
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    Wow, I have had this for over two years and never really did any reasch on it. But this expains my mood swings and anxity I just started having issue with. Love the name of the group and hope more join. Wow, still just blown away by how much I don't know about my own disease I walk around with.
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    Wow, I have had this for over two years and never really did any reasch on it. But this expains my mood swings and anxity I just started having issue with. Love the name of the group and hope more join. Wow, still just blown away by how much I don't know about my own disease I walk around with.

    It's a very complex condition that affects every inch of your body. Welcome to the group <3 I look forward to getting to know you!
  • Grumpsandwich
    Grumpsandwich Posts: 368 Member
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    I've had Hashimoto's 22 years now ( w pcos) Im not a medical professional but I have been around the block hehe. Feel free to pester :D
  • MarthaAnn8186
    MarthaAnn8186 Posts: 84 Member
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    Thank you for inviting me. It is nice to read about the hashimotos again, remind me what is going on with me.
    I have known I have hashimotos,for about 6 years. The doctor said she thinks I inherited it. I always have been very forgetful, things, I knew I should have NOT forgotten!! So I write down everything.
    And sometimes my joints hurt .
    I like the name Butterfly Chasers also.
    Martha
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    Welcome ladies :).

    Grumpsandwhich (I love the name! lol) It's great to have a seasoned vet aboard, I'm sure your experiences and knowledge will be very helpful to some of the folks that are just learning about Hashi's.

    MarthaAnn you are very welcome. Many people inherit it as they say it can run in families. Personally I can't figure out if it runs in mine or if it spawned off from my AI intolerance to gluten and casein, but my younger brother is hypo and has psoriasis - so AI seems to be a common denominator. Some people can even get Hashi's (or other AIs) strictly from a very stressful event or from being really sick. It's definitely a mystery!
  • djserani
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    I think mine is some kind of combination? I definitely have AI problems that run in the family because two of my three kids have AI stuff. I am not sure because I wasn't diagnosed for a long time.

    Hello all!
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    AI disease loves company! It's not uncommon for someone that has one to develop another. An already fragile immune system is very vulnerable to attack from all angles.
  • TOPSmarca
    TOPSmarca Posts: 187 Member
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    The stress connection is SO true... my first symptoms occurred during my husband's first deployment to Iraq (7 years ago). I then suffered a stroke to the inner ear (thyroid related) during his second deployment!!! I have been told I was "Just sad", needed antidepressants, needed to just get more exercise, whatever!!! I am at a really good place right now with a great doc, good levels of both T3 and T4, am getting healthier and losing weight FINALLY!!!! I enjoy this time for what it is... a reprieve!!!
  • AlyssaDarby13
    AlyssaDarby13 Posts: 158 Member
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    Whoever originally wrote that truly put everything into words that I try to say every single day. I was diagnosed two and a half years ago, but we're pretty sure I've had it for 9 years or so. The catalyst seems to be when I had mono. I've also been left with CFS from that, so my exhaustion is two-fold. My grandmother has thyroid problems, too...So I was already in the "risk group". I'm excited that you made this group, RoseTears. I'm hoping that getting to know people with the same issues will be refreshing and maybe I'll learn some new tips to cope while I'm here. :-)
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    Whoever originally wrote that truly put everything into words that I try to say every single day. I was diagnosed two and a half years ago, but we're pretty sure I've had it for 9 years or so. The catalyst seems to be when I had mono. I've also been left with CFS from that, so my exhaustion is two-fold. My grandmother has thyroid problems, too...So I was already in the "risk group". I'm excited that you made this group, RoseTears. I'm hoping that getting to know people with the same issues will be refreshing and maybe I'll learn some new tips to cope while I'm here. :-)

    I love reading that "letter" as well, it puts so much into perspective.

    Welcome! I'm excited I started it too, I am so happy to network with people on MFP trying to get healthy and lose weight but struggle due to thyroid disease and people like to say "it's just an excuse" when we know it isn't.
  • katscoots
    katscoots Posts: 255 Member
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    Hi everyone - thank you RoseTears for inviting me in. I'm hypo with Hashimotos for 20 years now. I was diagnosed at age 19 shortly after a severe case of Mono in college during which I was hospitalized for about a week - which I truly believe triggered the whole thing.

    I needed this thread and found it just by luck because I LOVE butterflies.

    I've been back and forth to the doctor several times over the past several weeks with exhaustion and insomnia - he said it was anxiety and stress - which in part I believe to be true. My TSH and T3, T4 are in the "normal range" and honestly I've been on the same dosage of levothyroxin for many years. I had forgotten all of the things this stupid disease can do. Except that I am ALWAYS cold - unless I'm really hot...I am positive you can all relate. I have a heater in my office that is set at 80 and it blows directly at me all day every day even when it's 100 degrees outside.

    I have had success in losing weight and I can share what has worked for me...knowing that not all solutions work for everyone. I look forward to connecting with you all.
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    Hi everyone - thank you RoseTears for inviting me in. I'm hypo with Hashimotos for 20 years now. I was diagnosed at age 19 shortly after a severe case of Mono in college during which I was hospitalized for about a week - which I truly believe triggered the whole thing.

    I needed this thread and found it just by luck because I LOVE butterflies.

    I've been back and forth to the doctor several times over the past several weeks with exhaustion and insomnia - he said it was anxiety and stress - which in part I believe to be true. My TSH and T3, T4 are in the "normal range" and honestly I've been on the same dosage of levothyroxin for many years. I had forgotten all of the things this stupid disease can do. Except that I am ALWAYS cold - unless I'm really hot...I am positive you can all relate. I have a heater in my office that is set at 80 and it blows directly at me all day every day even when it's 100 degrees outside.

    I have had success in losing weight and I can share what has worked for me...knowing that not all solutions work for everyone. I look forward to connecting with you all.

    I love butterflies too :) For those with hashi's it's recommended to have your T3 and T4 in the upper 1/3 of the range and TSH between 1-2. I actually feel best when my numbers force TSH below 1 but not many dr's will allow that as they freak out. Maybe look at your labs and see where your numbers fall, maybe you can talk to your Dr on a slight increase to help resolve some symptoms. Maybe even adding in an extra pill on one day a week. Like for me, I take one 97.5mg Westhroid-P pill a day, but take 2 on Sundays and by Sunday I REALLY need that extra one! lol

    ETA - or maybe try a new medication or a combo. Perhaps add in a small dose of T3 like Cytomel, or try natural dessicated thryoid meds or compounded meds. I never started feeling better until after 8 months of being on Armour and felt even better when I switched to Westhroid-P which has very few ingredients in it so it's pretty pure. I am convinced my body wasn't using the synthetic stuff at all even though my labs looked OK - the cells in my body weren't using the hormone very effectively.
  • katscoots
    katscoots Posts: 255 Member
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    Hi everyone - thank you RoseTears for inviting me in. I'm hypo with Hashimotos for 20 years now. I was diagnosed at age 19 shortly after a severe case of Mono in college during which I was hospitalized for about a week - which I truly believe triggered the whole thing.

    I needed this thread and found it just by luck because I LOVE butterflies.

    I've been back and forth to the doctor several times over the past several weeks with exhaustion and insomnia - he said it was anxiety and stress - which in part I believe to be true. My TSH and T3, T4 are in the "normal range" and honestly I've been on the same dosage of levothyroxin for many years. I had forgotten all of the things this stupid disease can do. Except that I am ALWAYS cold - unless I'm really hot...I am positive you can all relate. I have a heater in my office that is set at 80 and it blows directly at me all day every day even when it's 100 degrees outside.

    I have had success in losing weight and I can share what has worked for me...knowing that not all solutions work for everyone. I look forward to connecting with you all.

    I love butterflies too :) For those with hashi's it's recommended to have your T3 and T4 in the upper 1/3 of the range and TSH between 1-2. I actually feel best when my numbers force TSH below 1 but not many dr's will allow that as they freak out. Maybe look at your labs and see where your numbers fall, maybe you can talk to your Dr on a slight increase to help resolve some symptoms. Maybe even adding in an extra pill on one day a week. Like for me, I take one 97.5mg Westhroid-P pill a day, but take 2 on Sundays and by Sunday I REALLY need that extra one! lol

    ETA - or maybe try a new medication or a combo. Perhaps add in a small dose of T3 like Cytomel, or try natural dessicated thryoid meds or compounded meds. I never started feeling better until after 8 months of being on Armour and felt even better when I switched to Westhroid-P which has very few ingredients in it so it's pretty pure. I am convinced my body wasn't using the synthetic stuff at all even though my labs looked OK - the cells in my body weren't using the hormone very effectively.

    THANK YOU for that info. I've researched Armour in the past and read a lot about natural vs. synthetic... never heard of Westhroid before - just have to get the ole doc on board.
  • djserani
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    I *knew* there had to be other options for medication besides Synthroid (or Levo). I tried to tell my doc that there was, but she wouldn't listen. (Of course, she's one of those that only listens to blood test. I got down between 1 and 2 on my TSH and she reduced my Levo, just when I was starting to feel better. >.>)

    Thanks for the info. I'm going to print a bunch of this stuff out and take it in when I see her again. It's ridiculous. :/
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    I *knew* there had to be other options for medication besides Synthroid (or Levo). I tried to tell my doc that there was, but she wouldn't listen. (Of course, she's one of those that only listens to blood test. I got down between 1 and 2 on my TSH and she reduced my Levo, just when I was starting to feel better. >.>)

    Thanks for the info. I'm going to print a bunch of this stuff out and take it in when I see her again. It's ridiculous. :/

    Definitely do that! I've had many verbal spats and back and forth in emails with my endo over the years on medications and dosages and such. I think she got to a point where she gives me a tiny bit of slack on my leash finally lmao.
  • michelleivelez
    michelleivelez Posts: 4 Member
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    Well this is very interesting to read I have had Hashimoto's for the past 16 years. I have felt a lot of what the disease does to your body. I'm amazed that I was able to recognize the symptoms that were described. I didn't know anybody with this disease. I felt uncomfortable about having it., This really helped me.
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    Well this is very interesting to read I have had Hashimoto's for the past 16 years. I have felt a lot of what the disease does to your body. I'm amazed that I was able to recognize the symptoms that were described. I didn't know anybody with this disease. I felt uncomfortable about having it., This really helped me.

    I'm glad you found us then, you are definitely NOT alone. <3
  • TOPSmarca
    TOPSmarca Posts: 187 Member
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    I figured out on my own where the labs needed to be for me to function best and low and behold it is right where someone with Hashimo' s should be!!!! I am symptomatic when I fall into the mid point of the"normal range"!!! Now I know that it is not just me!!!
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    I figured out on my own where the labs needed to be for me to function best and low and behold it is right where someone with Hashimo' s should be!!!! I am symptomatic when I fall into the mid point of the"normal range"!!! Now I know that it is not just me!!!

    I am right there with you! I need my T4 and T3 to be on the high end and my TSH to be rather low for me to feel well.
  • MartyGru
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    Have you heard of Hypothyroidism Revolution? According to Tom Brimeyer, it works for every single one of his clients, including those with Hashimoto’s Thyroiditis. Have a look at http://hypothyroidismevolution.com/ for more info. Hope it Helps...