Goiter with normal levels

[Wubbie1]

Hi,
In 2002, during my annual exam, a nodule was felt on my neck. I went to an endo and a u/s showed my gland was enlarged, the right lobe 5.7cmx 1.9cm and left 5.1cmx1.2cm. It was completely nodular. 2 nodules on the left side 1.2cm and 6mm.  5 nodules on right, 5mm, 1.4cm, 2.3 cm, 1.9cm, and 6mm.  This FNA was benign.
A u/s in 2007 showed the gland had grown 7.0cmx2.2cm right, 5.6cmx1.4cm left. The largest nodule was on the right at 2.5x1.0cm,  largest on the left was 1.7x1.0cm. The FNA at time was benign.  
All this time my thyroid levels were normal.
I am now on Synthroid and am feeling terrible. I started in July at 100mcg, was shaky, insomnia etc and over a month. I had my levels tested again a month later in Aug 08 and TSH was 0.17, and was hyper. My doctor lowered my dose and now I am at 88mcg and was still having trouble.  I just had my levels tested again this month, and TSH is 0.48. I am experiencing hair loss and shakes.
I fasted for a glucose test, to see if I was hypoglycemic and did not take the medicine and have felt fantastic without it, results normal.
Why did I feel fine, with a large, nodular gland and normal levels, and now that I am on the meds, feel terrible and am hyper. I am due to see an endocrinologist in November.
I have discussed the thyroid scan with my doc and he said I would need to be off the meds for 6 weeks for the scan to be accurate. I have stopped the meds all together and I feel great.
I also have NF-1, but the FNA did not indicate that the nodules on my thyroid were NF nodules.
My questions are:
1) Why were my thyroid levels normal even though my gland was enlarged
and nodular?
2) If my FNA was negative, will a thyroid scan be worthwhile?
3) Is it necessary to take thyroid medicine if my levels are normal?
4) Would it make sense to just remove the thyroid since it appears to be growing?
Thanks and sorry to ramble on and on! I have been through so much, done so many tests and just feel at a loss!
Megan

[SECRET29]

Before 7 months my levels were:
FREE T4   1,1ng/dl
TSH           1,4 mIU/ml
Anti-Tg      35,0 IU/ml
Anti-M      12,0 IU/ml
TG            40,0 ng/ml

I had a cold nodule 2,5 cm.  i started T4 100mcg and the FNA was ok.
Now my levels are:
FREE T4  11,0 ng/ml
TSH          1,16 mIU/ml
the nodule 3,5 cm and i found out 2 more nodules. The FNA was good again.
What should i do? I dont know anything about T3. SHOULD I?

[Mark Lupo, M.D.]

Most nodular thyroids are associated with normal labs.  We no longer treat with thyroid hormone to "suppress" the nodules in most cases.  So the synthroid is not usually necessary.

Thyroid scan will not add much to this situation.

If it is growing and especially if the nodules are causing pressure symptoms, then surgery is an option -- but after you remove the gland you will need to take a medication like synthroid the rest of your life.  Close observation -- using an endocrinologist who does his/her own ultrasound is the best way to follow these nodules and repeat FNA if there is significant growth and monitor for compressive symptoms (ie, trouble swallowing, hoarseness, choking sensation..).

[Wubbie1]

I forgot to mention that I had the antibody test and that turned out normal.
Megan