Big THYROID nodule But labs normal??? WHAT NOW??

Discussion in 'Fibromyalgia Main Forum' started by Hope4Sofia, Jan 17, 2007.

  1. Hope4Sofia

    Hope4Sofia New Member

    I've had my thryoid checked twice. Both times the TSH, T4, T3, and antibodies were normal. But I'm not!!

    I have a painful nodule on my neck which I'm getting an US on tomorrow. I'm inclined to believe I have Hashimotos Thyroiditis. Anyone experienced with this?

    I have EVERY symptom. I'm a mess and completely fatigued.

    I have documented DX of:

    PCOS
    MVP
    Dysautonomia (POTS and OH)
    RLS
    Cluster Headaches
    TMJ
    Terrible muscle cramps (Charlie horse)

    Then of course the long list of symptoms.

    What do I do?? I want to try low dose Thyroid med but docs don't want to do anything until my labs show thryoid prob.

    Help!!! I can't live like this. There must be help for me.

    Sofi
  2. applecrisp

    applecrisp New Member

    My best friend went to her doctor for years thinking she had a thyroid problem..and he said she was fine, her tests come back normal. She has goiters in both thyroid glands. But her thyroid tests are normal?? what the h*ll? If something is growing. ya think something is wrong with that??!!

    She did get a biopsy and it benign. They are just WAITING for them to grow to a certain size and then do surgery to get rid of it. Why wait??

    Finally she went to see a GP that specializes in thyroid and does natural therapy as well. She was put on thyroid meds and the goiters are shrinking and she is reeling better. Finally.

    But get this, her regular doctor of 20 years, refuses to see her after she whent to this other Doc.

    There is something really wrong with these doctors and thier so called test for thyroid.

    Please find another Doc that is willing to help.

  3. Hope4Sofia

    Hope4Sofia New Member

    Thank you for your replies. I'm very discouraged right now.

    Some of the reasons I think thyroid is involved are:

    Thinning hair
    Recent wt gain
    Nodule on neck
    pigmentations on skin
    hair on face (ick!)
    Very dry skin and eyes
    Extreme fatigue
    Strong family history of thyroid probs
    Dizzy and nauseous most of the time

    There's more but those are some worth considering.

    I have a family to care for. I can hardly function. I need help!!!
  4. Lynna62

    Lynna62 New Member

    I'm in a bad flare right now so I cant go into the detail that I would like to....(I will try to come back to this and elaborate when I can).

    I have gone thru this, please ask your Dr for a referral to an Endocrinologist. If you have a nodule/goiter you need to be treated. There is such a thing as being subclinically hypothyroid although GP's probably don't agree. You really do need to see a specialist.

    (((hugs)))
    Lynna
  5. Hope4Sofia

    Hope4Sofia New Member

    Of course they didn't tell me anything yet but at least that part's done.

    I also went to my Psych today for a med check and she said she thinks I have a thyroid problem and referred me to an endo.

    I told her that my thyroid labs came back normal but she still thought something was wrong. She thinks my thyroid is causing my polycystic ovarian syndrome.

    So I got an appt with an endo for next week. I hope they can help me. This nodule is quite uncomfortable. It hurts when I talk and makes it difficult to swallow.

    Does anyone else have info or experience to share with me?

    Sofi
  6. Cromwell

    Cromwell New Member

    I have Hashimotos for many years and sometimes the nodules(I now have three) are very painful. I had a recent needle biopsy which confirmed the Hashimotos yet again.

    I agree that the normal levels are not really normal by new records. Even our vet is using narrower ranges and seeing great improvement in cats and dogs by using these new levels and treating with thyroxine. I too have weight gain, dry skin, especially round the mouth and the dry hair etc. plus not feeling that good.

    Hopefully, you will get the needle biopsy and sort it out. THe US is the first step. My doc here thinks also do a baseline needle biopsy, which is almost painless if the nodule looks as if it is growing rapidly.

    Love Annie Cromwell
  7. elliespad

    elliespad Member

    I've had Thyroid problems since , right after my daughter was born in 1983. At first was VERY HEYPERTHYROID, then Euthroid BUT,,, grew a goiter, until it reached the size of an orange and couldn't breathe, or speak, turned tingly and numb when lying down. Had SEVERE respiratory infection that wouldn't clear. Dr's kept telling me I had Asthma. Would be in and out of E.R. telling them I could hardly breathe, felt like a shelf in my throat. They would give me nebulizer treatments, saying I had bronchitis and asthma. I KNEW I had NEITHER. Kept telling them I didn't.

    Finally, a doctor who listened to me and knew to order the right tests. I had STRIDOR. My trachea was compressed and was practically whistling when breathing. Had a HUGE retrosternal goiter (mine grew BELOW the collarbone). Had Right Thyroidectomy. Now mind you, this goiter developed over many years, all the while being told my LEVELS WERE NORMAL. I had MANY Scans, Uptakes, Fine Needle Biopsies. My official Dx. is Autonomous Multi Nodular Goiter. Oh, when/if Stridor is suspected, the proper test a special form of Spirometry called a Flow Volume Loop.

    AND I was being told I had asthma and bronchitis. I KNEW I didn't. Surgery was in 1991 or 92. Had Right Thyroidectomy. On Synthroid for few years, then Accupuncturist switched me to Armour. Did that until I took my self off all Thyroid meds 3 or 4 years ago. Restarted them again about 1 year ago, using Compounded T3/T4 and now just T3.

    Moral of the story - Tests dont mean much. Docs don't know everything. And often less than we do. Go with your instincts.

    My best guess is if the doc knew to order the RIGHT tests, you should be given either a T3 only (Compounded OR Cytomel), or T3/T4 combnation such as Armour or Thyrolar (or Compounded). But sadly, they usually stubbornly order a T4 only (such as Synthroid).



    [This Message was Edited on 01/18/2007]
  8. Sandyz

    Sandyz New Member

    I have nodules on my thyroid too. I also have a lot of cysts. My doctor is just watching that they don`t get bigger. You did a needle biopsy but couldn`t get a very good sample. I have too wandered if I have the Hashimotos, he says no but I don`t know if he knows what he`s talking about.

    Good luck and I hope things get better for you.
    Sandy
  9. caroleye

    caroleye New Member

    For years, Dr.'s read a "normal" on all my thyroid tests; finally got referred to a specialist due to my symptoms.

    Although "borderline", I was dx w/Hashimoto's & started on Armor Thyroid. Been on it ever since. Many tests are not sensitive for those of us who are "canaries", and know more.

    HEALING LIGHT***************carole