Dx of Hashimoto's thyroiditis w/ elevated antibodies & goiters & MD wants to "wait"

[sarijh]

Please help I'm so frustrated. For the past two years I've had all the clinical symptoms of hypothyroidism - depression, unexplained weight gain, exhaustion, brittle nails and hair, cold, muscle aches etc. After visiting my regular doctor in January for horrible itchy skin I was sent to the allergy specialist and we tried fixing my skin issues for months. Finally in September the allergy doctor said he thinks it's my thyroid especially when hearing that I have trouble swallowing certain food items.  He ordered a bunch of labs and I got these results:

T4 Free 0.99 (range 0.8-1.8)
TSH 1.44 (range 0.34 - 4.82)

He said I should see an endocrinologist and sent the notice to my primary care doctor - unfortunately she is on maternity leave so another doctor following her patients said "no your TSH is fine, you don't need an consult". Just like that without seeing me.   I went in to visit a Nurse Practioner because of a shoulder injury and also brought up my concerns with the thyroid.  She agreed with me and ordered these labs:

T3 total 147 (range 87-167)
TSH 1.19 (range 0.34-4.82)
Thyroid Perioxidase Antibodies  - 119 (range should be <35)

She also sent me for a thyroid ultrasound which showed this:

FINDINGS:  

General: The thyroid gland is heterogeneous throughout. There are
multiple non-resolvable nodules.

Right Thyroid: Measures 15 x 14 x 51 mm.. Within the mid aspect
there is an 11 x 5 x 6 mm complex nodule. In the lower aspect
there is a 5 x 3 x 6 mm hypoechoic nodule. Also within the lower
aspect of the right lobe there is a 7 x 3 x 5 mm complex nodule.
No hypervascularity on color Doppler imaging.

Left Thyroid: Measures 14 x 14 x 42 mm.  No hypervascularity on
color Doppler imaging. Within the mid portion of the left lobe
there is a 6 x 2 x 5 mm hypoechoic nodule and a 7 x 4 x 5 mm
hypoechoic nodule. In the lower portion of the left lobe there
are 2 nodules one measuring 4 x 3 x 2 mm which is hypoechoic and
another measuring 5 x 6 mm which is high paracolic.

IMPRESSION:  
Multinodular goiter with only some of the nodules resolved. There
is diffuse heterogeneity.

After this the doctor said I have Hashimoto's thyroid because of the high antibodies and the ultrasound result. I cried with relief and thought FINALLY I have a diagnosis and can get help.  When I asked what we should do, her response was:

"With a normal thyroid stimulating hormone level we generally just follow the patient with yearly checks of this level.
As far as the ultrasound results we will follow this as well. You can recheck the ultrasound in 6 months for any changes."

And that was that. I started sobbing in frustrating. I might also add that my mother, grandmother, aunt and 17-year-old daughter have all been diagnosed with hypothyroidism.  But because my TSH is normal she is just blowing me off.  I sent a scathing email back to her.  I also talked to the NP today who is just as frustrated as I am because she believes that I need an endocrinologist consult and probably medication but because it's the "doctor in charge" she has to put in her 2 cents and hope this doctor agrees.

I'm hoping for advice for anyone that has been through this. Do I have a reason to be upset that we can just "wait and watch".  Even though I am symptomatic, labs are off and ultrasound shows multiple goiters....we are just going to "wait".  I'm so depressed when I got that email. Thoughts and advice?

[sarijh]

I live in Sacramento, CA. My doc has finally agreed to an endo consult which before she wasn't even agreeing to.  Hopefully it's a start.

[gimel]

Believe me, a good thyroid doctor is hard to find.  If you will tell us your location perhaps a member can recommend a good thyroid doctor based on personal experience.

[sarijh]

Thank you. My doctor is definitely the first you described - only focusing on the TSH. She doesn't even think I need to be referred to an endocrinologist, just writing me off in general. I am trying to get her to do anything and if not, I will leave that practice and doctor hunt until I find someone that is will to at least try something.

[gimel]

Our experience has been that patients with Hashimoto's Thyroiditis find that their doctors generally fall into one of two camps.  The first usually is infatuated with TSH and doesn't want to do anything until lab results exceed their so-called "normal" range.  They don't understand that TSH is useless as a diagnostic for medicating a thyroid patient.  They also don't understand that the ranges are far too broad to be functional for many people, due to the erroneous method used to establish ranges.  The second group of doctors, much smaller in number, are willing to start medication earlier so that you avoid the worst of hypo symptoms.  You can read about this approach in this link.

http://thyroid.about.com/od/hypothyroidismhashimotos/a/preventative.htm

So, you don't have to wait and watch and suffer.  You need to either persuade/coerce your current doctor to change approach, or you need to find a good thyroid doctor that will treat clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.