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  • Years of issues, 'enlarged multinodular thyroid'

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    Old 04-21-2009, 08:59 AM   #1
    chespkbymom's Avatar
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    chespkbymom HB User
    Years of issues, 'enlarged multinodular thyroid'

    Hi everyone! For several years, I have been going to doctors for what seemed to be unrelated issues. Now I'm not so sure.

    First off, I was born with one kidney and later found out that I have a unicornuate uterus.

    In high school, started have severe scalp problems(dry, itchy, crusting), and mouth ulcers. Also had anorexia/bulimia.

    1998 - had first child

    In 1999 Had vertigo, when to a doctor, eventually went away.

    2000 - had second child

    In 2002, I went to my PCD for dizziness, low energy, not being able to lose weight, pins and needles in feet and hands, extremely cold hands and feet, night blindness, and so on. He looked at me like I was crazy, but he sent me for some blood tests. From those, he said I was hypoglycemic. He said my thyroid was in the normal range and sent me for nerve testing for my feet (there was no nerve damage) He put me on some weight loss med (I can't remember which one), which didn't do anything except speed up my heart rate. Didn't lose a pound. Stopped taking it. He left the state.

    In 2005, went to a new PCD for pain under ribs. She put me on Bextra(which is a Sulfa drug - and I am allergic to Sulfa). Ended up with Stevens Johnson's Syndrome, which can be fatal. She denied any wrongdoing and made me feel like a leper. Now I am extremely sensitive to all meds, including over the counter ones.

    Found a new PCD! Had several problems such as exercise induced asthma, pain in chest(EKG was normal), tested for gall bladder (normal functioning), and treated for depression over the next several years.

    In 2007, tried going off gluten and I felt much better. Still didn't lose weight. Developed nickel allergy.

    So, now 2009: went to GYN for annual checkup and increasingly heavier periods with severe cramps. Mentioned that I had gluten sensitivity. All hormone tests and ultrasound came out normal. She said I should see a GI to test for celiac sprue. I had been eating gluten since I had moved in 2008(and felt horrible), so I made the appointment. He said gluten is really hard on the GI tract, but my symptoms could also be thyroid. He felt my thyroid and said it felt enlarged. He tested me for celiac and my TSH level. Sent me for an u/s of thyroid.

    So here are the results: Multinodular goiter(the nurse called them cysts)
    TSH: 1.6
    negative on celiac panel

    His office is making an appointment with an endo dr., but I am a little nervous about this. Still have chest pain, no weight loss (and if I stop exercising, I gain immediately), puffiness in face/hands, moodiness, tired all the time(even though I sleep 9 - 10 hours/night, cold hands/feet, extremely dry itchy scalp, mouth ulcers. Should I be worried and how should I prepare for this dr. visit?

    If it is not hypo, what else could it be?

    Last edited by chespkbymom; 04-21-2009 at 09:05 AM. Reason: added to it

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    Old 04-21-2009, 11:25 AM   #2
    chespkbymom's Avatar
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    chespkbymom HB User
    Re: Years of issues, 'enlarged multinodular thyroid'

    Okay, got my report from the radiologist today:

    Right lobe: 6.3cmx2.4cm AP and 2.2cm transverse diameter
    cyst in lower pole 4x3mm, 2 cysts in mid pole 6x7mm and 3x3mm
    consistant with colloid cysts

    Left lobe: 'normal' size: 4.9cm x 1.9cm AP and 2.5 cm transverse diameter
    cyst in lower pole 5x4mm, 3 cysts in lower to mid pole 4x3mm, 3x3mm, and
    3x3mm, cyst in mid pole 4x3mm and tiny cyst in upper pole 3x4mm

    IMPRESSION:"The right lobe is slightly enlarged in size. The left lobe is normal size. Multiple colloid benign cysts

    I thought they couldn't determine benign without an FNA and read somewhere that a 4.9cm lobe is considered above normal. Please advise...

    Old 04-21-2009, 12:03 PM   #3
    Join Date: Feb 2009
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    herekittykitty HB User
    Re: Years of issues, 'enlarged multinodular thyroid'

    So he only tested TSH and celiac panel? That is definately not enough testing. A lot of the symptoms you are having could be autoimmune related. Stevens Johnson Syndrome is an autoimmune response set off by a medication (my son also had this when he was 9). Allergies are autoimmune related and you seem to have a lot of them.

    As far as the doctor making you feel like a leper after you came down with SJS, it's because she was afraid you would file a lawsuit for giving you a medication that you are allergic to! You not only had a reaction, you had a potentially life altering, life threatening reaction.

    He should have tested your T3, T4, thyroid antibodies, ANA level, vit. D, B12, CBC, Ferritin, just to name a few I can think of.

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