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    Old 08-02-2017, 08:21 AM   #1
    lynnwb
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    New, Thyroiditis, autoimmune question

    Hello,

    I am awaiting lab test results that should be up today, but thought I would go ahead an get a jump on some questions I have.

    In 2013 I was sent to an endocrinologist regarding a nodule on my thyroid, biopsy was done. I was told to go back every year for a check up. Either I don't remember, or I didn't think it was significant, but I never thought the biopsy results were of any concern. Kept putting off my follow up appointments. This year I decided to go back. Had my appointment yesterday.

    The doctor told me my biopsy 13 years ago showed Thyroiditis. Yesterday he did another ultrasound and said my thyroid is still enlarged. I'm not sure if he said he didn't notice any significant nodules, or that the nodule didn't change, or if there were no nodules. He talked so quiet!

    Anyway, on my chart online it says, Thyroiditis, autoimmune. He again told me to come back in a year for a follow up. He did blood work which I will get the results of later today. The tests he ran are TSH, Free T4, and TPO (as far as I can make sense of them).

    My regular doctor has periodically done thyroid levels and they have always come back good, but I do not know the specific tests.

    I believe my father has hypothyroid (ism??) I have emailed him to find out more.

    My question is: what is Thyroiditis, autoimmune?
    Can it really be diagnosed without abnormal blood work and with a biopsy?
    What do I need to watch out for?
    Do I need meds if my labs come back normal?
    Why do I have to go back for yearly ultrasounds?

    I could have asked my doctor yesterday, but my brain apparently wasn't working during the appointment.

     
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    Old 08-02-2017, 09:23 AM   #2
    midwest1
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    Re: New, Thyroiditis, autoimmune question

    Autoimmune thyroiditis is also known as Hashimoto's thyroiditis or disease, named after the doctor who discovered it. It's a progressive condition. In the earliest stages, there will be no symptoms and thyroid hormone levels will be well within range. But as the TPO (and/or sometimes, Tg) antibodies multiply and do their dirty work, the gland tissue begins to die off, hormone levels dip, TSH may or may not rise, and symptoms appear. It's the inadequate hormone levels that cause symptoms, not the TPO or TSH (which is a pituitary hormone, not a thyroid one). Hashimoto's disease almost always progresses to total, irreversible gland failure. The missing thyroid hormone has to be replaced with that from a daily pill.

    Blood tests for Hashi's have an error rate that makes them less than totally reliable. The only 100% definitive way to diagnose it is through tissue biopsy, the kind you had on your nodule. But biopsy is probably never done solely for Hashi's diagnosis without suspicious nodules present.

    Bottom line is... If you have multiple signs/symptoms of hypothyroidism, you should begin treatment now. It won't improve without supplemental hormone. Even people without obvious symptoms have been able to prevent the formation of new nodules by starting thyroid hormone treatment. Something to consider, too.

    The book Thyroid for Dummies by Dr. Alan Rubin will help you to easily understand most of what there is to know about thyroid function and dysfunction. I also recommend our "Thyroid Symptoms List and... " sticky thread.
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    Old 08-02-2017, 09:35 AM   #3
    lynnwb
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    Re: New, Thyroiditis, autoimmune question

    Thank you. I will check those resources out today.

    If I remember correctly, at the time of the biopsy, they said they were doing it because of something about the borders, or boundaries of the nodule. I cannot remember specifically. I think all I paid attention to after it was done is that it was not cancer.

    Thank you so much for your info.

    If my endocrinologist doesn't recommend medication I should probably look for another one?

     
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    Old 08-02-2017, 09:55 AM   #4
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    Re: New, Thyroiditis, autoimmune question

    The all important question is... Do you have symptoms of hypothyroidism?
    There are dozens possible. No one has every one of them, but most of those who need hormone will have 10 or more. The sticky thread I mentioned has a list, but even that isn't all-inclusive.

    To be clearer... The nodule isn't a sign of Hashi's. Lots of people without thyroid dysfunction have nodules. But Hashi's does encourage nodule formation for some people. The biopsy simply incidentally noted the cellular changes that the antibody damage from the Hashi's has caused.

    Treatment should begin if a patient feels unwell. If you do, and the doctor won't treat, definitely move on.
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    Old 08-02-2017, 10:22 AM   #5
    lynnwb
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    Re: New, Thyroiditis, autoimmune question

    I do have many of the symptoms. But, I also have a connective tissue disorder, Chiari Malformation, and Asthma. So who knows what is causing my symptoms. I got all the "winner" genes of the family. LOL.

    Thanks for all your help!

    I have these symptoms:
    Fatigue
    Lethargy
    Dry skin
    Choking sensation/difficulty swallowing
    Fineness of hair
    Slow speech (at times)
    Constipation
    Slow thinking
    Poor memory
    Poor concentration
    Shortness of breath (But I do have asthma)
    Swelling
    Hoarseness
    Swelling of ankles
    Painful menstruation
    Brittle or thin nails - with ridges
    Low motivation
    Low sex drive
    Dizziness
    Extreme night sweats
    Sensation of cold
    Weakness
    Vague body aches & pains
    Pounding heart beat
    Muscle pain
    Joint pain
    Non-restful sleep
    Poor vision
    Difficulty losing weight

     
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    Old 08-02-2017, 11:50 AM   #6
    lynnwb
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    Talking Re: New, Thyroiditis, autoimmune question

    Well, I've been doing a lot of research on this today.

    I guess I'm going to try and go Gluten-free and diary free.


    I have read a lot about it helping with connective tissue disorders. Now it seems it helps with this as well.

    I love cheese....

    I love bread...

    My family is going to hate me. HAHA!

     
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    Old 08-04-2017, 06:34 AM   #7
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    Re: New, Thyroiditis, autoimmune question

    I called and they said my labs came back within range. I haven't been able to see them yet to know what the exact numbers were.

     
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    Old 08-04-2017, 02:09 PM   #8
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    Re: New, Thyroiditis, autoimmune question

    I recommend you get a printout of those lab results. You can post them here for more input. Include the lab's reference range for each test, not just the result.

    Doctors notoriously run the wrong tests. Sometimes, even if they run the right ones, they're bad at interpretation.

    I wouldn't say all your symptoms are necessarily from your thyroid, but there are too many to say that none are.

    Will be waiting to hear from you again.
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    Old 08-07-2017, 11:40 AM   #9
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    Re: New, Thyroiditis, autoimmune question

    I have called 3 times asking for test results to be published onto my online chart. Today, still no results online, so I emailed the doctor and specifically asked again that they be put online. He just replied with this:

    TSH 2.560 FT4 1.1 TPO <28 (negative)

    I don't think these numbers are out of whack, but then again, I don't have the ranges to look at. I'm guessing that TPO negative means there were no antibodies?


    I wish he would have explained why I have a biopsy that shows Autoimmune Thyroiditis, but all my test results keep coming back normal. And I would like him to tell me what I should do, what I should expect, etc. Do I even need to worry about this at all?

    I think I'm going to switch doctors.

     
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    Old 08-08-2017, 07:07 AM   #10
    midwest1
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    Re: New, Thyroiditis, autoimmune question

    Few people who get a low thyroid diagnosis have results "out of whack". They're mostly still within range. But there really is no "normal" when it comes to lab levels. Each person has their own "normal". For example, that free T4 of 1.1 is most likely lower than what yours was when you felt well. It's below lab median [using the method that the majority of the big labs employs]. That causes symptoms for most people. Also, the average TSH for healthy people is around 1.0. Yours isn't "normal" for most of the population.

    The MD who diagnosed me - after my primary MD wouldn't - said that she treats when TPO antibodies are positive and there are symptoms. She says there's no benefit to waiting, because the gland is already on its way to failure and there's no sense in making the patient suffer until it does. That could take years, and it could cause permanent health damage in the meantime.

    Luckily, not all doctors are blind lab result worshippers. Like the majority of endos, yours doesn't seem to be one of those. Endos are the least likely to use clinical judgement over arbitrary lab ranges. Ditch the endo and find a more open-minded GP, internist, or naturopath and use your power of persuasion to make them see the light. It can be done with persistence.
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