Thyroid regrowth

My thyroid is growing back!  Now what?  I was diagnosed with Graves Disease when I was 15 and got really sick by 16 when the Graves Disease kicked in big time.  I had opted to have my thyroid removed and they removed all but the ParaThyroids.  I have been on synthroid /levoxal ever since.   I am told that my thyroid is functioning very well at .869 (THS?) and now reduced my meds to .112mcg of levoxal.  Is the graves disease coming back?   I have been VERY symptomatic having almost all of the graves symptoms I have been sick for 6 weeks and have some how managed to get an ear infection while taking augmentin 875 mg.  What is going on? Where do I go from here?  I know my Doc will keep a very close eye on me but I am very upset.  I have 2 Kids and the thought of “Gravses  part 2” has me scared knowing what I have been through in the past.  What does this mean for me now?

[Mark Lupo, M.D.]

this can happen, but you have a normal TSH on 112mcg of thyroxine -- therefore there is not a significant amount of thyroid hormone being produced by your own thyroid (if indeed it is growing/active).  Would consider testing TSI/TBII -- if negative, the graves is not likely back -- if positive, then there is a chance that the remnant thyroid tissue left behind could grow and cause recurrent graves (usually that results in decreasing thyroxine requirements to the point of stopping the medication and then documenting the patient is hyper).  Ultrasound can also be useful to document the amount of thyroid tissue remaining.

[GravesLady]

Yes, I have heard of this. However, I would not worry too much until you have exhausted all the med. doses and off pills totally. From what I understand, thyroid surgeons tend to leave a portion of the thyroid intact in order to avoid damaging parathyroid's or the nerve that runs through the thyroid that works the vocal chords. Even with the most meticulous surgery, small amounts of thyroid tissue are often left behind to help preserve the integrity of critical structures that lie beneath the lobes of the thyroid.  When some thyroid or residue tissue is left, there is a chance for the thyroid to grow back such as in your situation.  This is said to be caused by the antibodies.
I am taking a guess here, to prevent the re-growth again, that both thyroid removal and then RAI to ablate the left behind tissue, might be a solution. Good luck!

GL,
Just my opinion and personal experience as a RAI Graves' patient.

[roli2828]

really, i have never heard of that happening.  i am getting ready to get RAI done in about 2 months..  i am 29 year old male with hyper/graves.  hopefully this is all i will need.  good luck with everything..

[Me25synthroid]

A related discussion, Regrowth of the thyroid was started.