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What Does Autoimmune Awareness Mean To Me HD In Oregon

Post Published: 16 March 2010
Author:
Category: National Autoimmune Diseases Awareness Month March 2010
This post currently has 16 responses. Leave a comment

I had thyroid cancer, and I am not sure if this counts as an autoimmune disease (autoimmune = the body attacks itself). How and why my cancer developed I don’t know. I had no thyroid issues before the cancer. – Fact is that I don’t have a thyroid gland anymore and that I need thyroid hormone replacement medication every day for the rest of my life.

Thyroid hormone replacement medication (I take levrothyroxine) is a very fickle compound. First it is measured in micrograms that are an extremely small amount. A little bit too much of the good stuff and you become “hyperthyroid” and have some of the symptoms of a patients with Graves’ disease (an autoimmune illness), a little too little and you are “hypothyroid” and you experience the symptoms of a Hashimoto’s patient (another thyroid related autoimmune condition).   And believe me, neither symptom are pleasant to endure (and oddly some, like fatigue, are exactly the same). – The other unusual property of the medication is that, different from a headache pill which kicks in after about 30 minutes, the dose takes often six to even 10 weeks (according to one of my endocrinologists) until you as a patient feel some effect on your symptoms.   So, it takes a very long time to tweek and adjust in order to find a good balance, that works.

So, why do I think that awareness towards thyroid autoimmune diseases is so very important? – Well let me break it down into groups:

  • Doctors

M.Ds. that are not endocrinologist (those are doctors specializing in the endocrine system which the thyroid is a part of) often “pooh-pooh” thyroid treatment as “oh, you just take a little pill every morning”.

Also doctors need to become aware that thyroid diseases indeed change the metabolic system of a patient and can indeed cause weigh gains or losses. Please, no more:,   “oh, you’re just fat and depressed,   my dear”.

It is also very important to find a compassionate endocrinologist who listens and treats your symptoms, and not some thyroid engineering nerd who only sees numbers and (ill-defined) ranges. Doctors need to be made aware of that need.

  • Patients

I think patients need to be made more aware as to what exactly is coming at them.   They need to know that some cannot tolerate the synthetic hormone replacement medication, and that some doctors are reluctant to prescribe natural thyroid hormones (e.g. Armour).

Patients also need to be aware that it is really difficult to explain a thyroid autoimmune illness to ones family and friends.

Finally patients need to psychologically understand that this disease is chronic “forever” until you die.

  • Family

Family members and friends of thyroid sufferers need to become aware that —,  no, the person is indeed really very very tired and not slacking off or “shirking their duties”.

  • The Public

Lastly, the public at large need to be made more aware of what kind of an illness thyroid autoimmune disease is. Too often one gets a “huh, what the heck is that?”   Response.

Also awareness, hopefully, will improve interest and funding into the causes of thyroid diseases. Why do they happen?,   How can we prevent the body from attacking our own glands? Why is thyroid cancer on the rise?

In summary I hope that more people will learn to understand to live with the disease, or to live with a loved one that suffers from the disease. – Also I hope that doctors will know more about the symptoms and how to treat, and equally important, when to refer a patient to the right specialist.

HD in Oregon

If you haven’t read Dee’s letter “Thanks To My Mad Hyper Skills, I’m Hairless and More“, about her diagnosis and mistreatment, please do, as well as the wonderful conversation about memory issues, finding the right doctor, symptoms and much more.

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16 Responses to “What Does Autoimmune Awareness Mean To Me HD In Oregon

  1. Hypogirl says:

    Great letter HD. I agree with all of your comments. I would agree that you have an autoimmune disorder because even though your thyroid is gone you are still experiencing all that we do. Which came first? LOL!

    Your last sentence says it all. 🙂

  2. Dear Thyroid says:

    Totally agreed, Hypogirlie! I love what HD wrote and I love his posture on awareness, it’s outstanding.

    xo

  3. Lolly says:

    I agree great letter HD you hit the nail on the head with everything you wrote I couldn’t have put it better myself.

    It’s not just about thyroid autoimmune but thyroid disease in general including thyroid cancer patients they have the same symptoms as someone who’s hypo hyper had RAI surgery.
    It’s getting that fine balance of medication and it’s about time Doctors and endocriminologists realised and that not one size fits all just as not one medication can work for one person.

    Also there are so many AI diseases that Thryoid is just one of so many and more funding needs to go into what triggers it in the fiorst place we know that stress environment and life style are factors but that’s a broad spectrum there are other chemical changes in the body which are beyond are control for if we could control them we wouldn;t be fighting an army in our bodies. I have 3 AI diseases well 4 if you include GO and each one is different but none the less not understood so I have never got a real good explanation as to why it happened in the first place if I knew that maybe I could do something about it. this is where research is needed to funded a good friend has just been DX with MS another AI disease.

    Great post.

    Lolly

  4. Lolly – Beautiful points.

    I didn’t know you had 3 AI’s. I don’t consider Go to be a separate autoimmune disease because its a result of GD 99.9 3/4 percent of the time. Why do you consider them to be separate, if you don’t mind me asking.

    Agreed re: funding and research. How’s about a cure?! Everybody say “yay”.

    xo
    K

  5. Lolly says:

    Katie,

    The reason it is a separate disease although it goes hand in hand with Graves disease GO can be found without having GD too, so it’s also treated as a separate disease getting your thyroid levels in a good place helps but in the end GO has to run it’s course. So yes it is a separate disease because you can have it without having Thyroid Autoimmunity disease or Graves.

    If I had counted GO it would be 4 but I see it for me as going hand in hand with Graves disease.
    does that make sense.

    Say “YAY” to a cure.

  6. HD inOregon says:

    Dear Katie and Dear Lolly,

    I hope we are friends on this website, which would allow me to voice some criticism. Please keep in mind that readers of this blog do not always know all the vernacular.

    So talking about 3 AI’s, or GO versus GD, makes it difficult for people (like me) to follow and understand what is going on. I know, it easily slips in.
    😉

    Thanks for your understanding,
    HD in Oregon

  7. Elaine says:

    YAY

    Great letter

  8. HD inOregon says:

    Oh, of course I say “Yay”… and even double “Yay”!!!
    😉
    HD

  9. Lolly, I love you.

    here’s what I know… Please correct me if I’m wrong. Please know that I am aware that there many exceptions to the rule; you can’t have GO without an autoimmune thyroid disorder. Primarily that disorder is GD, though hypothyroid patients have had GO. That is uncommon. Sadly, autoimmune hypothyroid patients have their own eye diseases to contend with, so to speak.

    In order to have your GO under control, you do need your thyroid balanced, and as you said, your it has to run its natural course.

    Yay for a cure, sistah.

    School me.

    Love,
    katie

  10. HD:

    You are 100% correct and I am so glad you pointed that out. You rock.

    GD = Graves disease
    GO = Graves Opthalmopathy, also called TED (Thyroid Eye Disease), but TED doesn’t always refer to GO.

    Thanks for pointing that out. Cutting acronyms down for clarity.

    Grazie, baby.

    Love,
    Katie

  11. Elaine – Yay is right. I loved HD’s post so much, too.

  12. Ha. Lovin the HD. Our resident comic.

  13. Lolly says:

    HD Of course we are friends you can criticize ostracize demoralise epitomize and I won;t bat an eye lid cus they don’t move well.
    Cus=_short for Because
    AI = AutoImmune
    Endocrimologist = Jack ass well it speaks for itself.

    And say a big Yay because HD short for HDinOregon. Thank Heavens it doesn’t begin with a “V”

    The only reason I abbrev see I even did that, is cus half the time I can’t remember how to spell the damn words.:-)

    Lolly who’s name is even abbreviated

  14. Lolly says:

    Katie,

    Will enlighten you when I get back. Love you too thysis.
    I bought you some flowers.

    Lolly

  15. Elaine says:

    Lolly , you hit the nail on the head about abbreviating because you forgot to spell the word. I do it all the time.

    Elaine OX

  16. Kelly says:

    In most cases the exotic diets such as vegan or raw food lead to variety of disorders including the thyroid disorder:)

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