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  • Hashimotos but normal TSH Levels w/Pain?

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    Old 07-11-2011, 05:46 AM   #1
    xxDeadinredxx's Avatar
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    Hashimotos but normal TSH Levels w/Pain?

    Good Morning to all,
    I am new to this board and would appreciate any and all insight regarding this matter.
    About one month ago I developed a lump in my throat sensation that was so persistent it literally drove me mad--I could not swallow properly it almost felt like a golf-ball was lodged in my throat but was alleviated when I ate or drank something..I went to bed and would awaken it was there..24/7 for three weeks. I assumed it was a formality of acid reflex or something going on with my thyroid. I went to an ENT that specializes in Thyroid function and had an endo and sonogram performed, well he found mass scarring in my throat (I'm only 20 years of age) that he was confident was due to acid, and noticed one thyroid was reduced to nearly nothing and the other had 3 tumors all just shy of 1cm.
    He ordered some blood work and sent me on my way..well the results came back with my TSH levels normal, but my peroxidase antibody test sky high--So he diagnosed me with Hashimotos.
    He said I was not symptomatic..due to my TSH levels being normal.
    Now..I've felt extremely sick for the past 8 hair began falling out, joint pain, spazzing neck pain nearly jolting to my ear, to feelings of complete and utter exhaustion, weight loss, then gain by 10 pounds or more, irregular monthly cycles, etc..but I feel as though I am crazy.
    Has anyone else experienced any of these symptoms with Hashimotos' Disease yet their TSH levels were normal or am I a minority?
    My specialist has not placed me on medication and says unless my TSH levels are affected he will not prescribe a hormone (which I partly understand) nor surgically remove my thyroid until a growth rate with the tumors is determined, I return in three months..but am really beginning to hurt and feel he thinks I have somehow read about this disease and began "imagining symptoms" when I was feeling this way eight months to one year prior of ever knowing I had a thyroid problem.
    Thank you all for reading,


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    Old 07-15-2011, 06:40 PM   #2
    Annie75's Avatar
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    Re: Hashimotos but normal TSH Levels w/Pain?

    Hi Katie

    I was diagnosed with Hashimoto's at around your age after my GP noticed my neck was swollen. I was having the symptoms you describe but was always dismissed as depressed etc.

    Different doctors have differing opinions on 'normal' test results. Besides doing a TSH test, your doctor should have ordered free T4 and T3. Different laboratories also have different ranges of what they consider 'normal'.

    All of those hideous symptoms you describe definately sound like thyroid symptoms and I feel so sorry for you.

    I'm not sure where in the world you are but you can ask your doctor or even as a right to your own information you could call the Lab where the tests were done for a copy of your results. If your TSH is any higher than .01-.03 I would expect you to be having symptoms. The 'normal' range for different labs can be anywhere from .05-2 or sometimes even 1.8-5 which is ridiculous. Also you need to look at your T4, I think the normal range is something like 12-18, I don't feel reasonably well until my T4 is in the higher end of the normal range. Funny thing is, often times my TSH will be .01 (mind you some labs will flag that as being too low) but my T4 will still be in the lower range (not sure what to do about that).

    I don't know how much you've researched Hashimotos but in terms of TSH the higher it is, the lower your T4 will be....the thyroid replacement hormone is aimed to reduce the TSH by increasing your T4 which is the hormone which is created by your thyroid gland. Your pituitary gland creates the TSH to stimulate your thyroid gland if your T4 is on the low side.

    I have a sneaking suspicion that if you check your actual test numbers you'll find you are on the low end of 'normal'....which doesn't exactly give you much room to feel WELL. There's no reason really for your doctor to refuse to give you a low dose of replacement hormones if you feel better on them. Everyone is different and you'll know after a month or so if it's helping.

    Don't worry too much about the tumours, I'm also guessing they won't grow. They're actually common in Hashimoto's, I have lots of them. They call it multi-nodular goiter and it's only really a problem if they get larger than 1cm or if they are considered 'hot' which is where they are actually producing thyroid hormone (more common in Graves disease which is the opposite to Hashimoto''s where the thyroid over produces the hormones).

    Please note that if you start on thyroid replacement hormones you will need to be on them for the rest of your life. Don't be frightened about this, they are not 'drugs' as such, simply a replacement for something your body can no longer produce....much like a prosthetic leg.

    I hope you feel better soon.

    Old 08-29-2011, 05:41 AM   #3
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    KimberleyM's Avatar
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    Re: Hashimotos but normal TSH Levels w/Pain?

    I feel for you and know what its like. You certainly can have symptoms when your TSH says you are in the normal range. You symptoms wont go away until you are treated. You need to search for a doctor that will check your RT3, Cortisol, Ferritin, TSH, Free T3, Free T4. T4 meds only with make your RT3 go too high though so you will need to Take T3 as well or Natural Thyroid. You need to make sure your Ferritin levels are ok and no Adrenal fatigue first though as ive found out the hard way.

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