Autoimmune disease desperate for guidance

[Chris3251]

Tsh-16.3, Thyroid peroxidase- 863.07, thyroglobulin- 17.61, TSI- <89%, normal T3/T4. I've had a radical nephrectomy from renal cell carcinoma. Positive for Factor V Leiden (homozygous) 2 different blood thinners failed last year with multiple DVT/PE & surgery for an IVC filter. When the nurse called with the above lab results I asked if it's primary hypothyroidism or if it's secondary to something else & all I got was "uhh...uhh...I don't know but take the Levothyroxin (125 mcg) & come back in a month." Almost 3 wks on Levo with no improvement. My fatigue is beyond words, occasional throat issues with raspy voice, facial redness that never goes away, joint inflammation, stiffness & debilitating joint pain 24x7 in my hands, hips, knees, feet & no relief from Tylenol, ibuprofen or tramadol, elbow pain, lower extremity swelling or fluid retention, dry mouth, dry/gritty eyes. I feel like an internal bomb just went off! I work from home but I still have to call in often, I can't do anything I enjoy anymore or even manage basic daily living. I don't know how to advocate for myself because this is all foreign to me. I drive 35 miles to the nearest medical group with the closest specialized medicine 3 hrs away in St Louis. Most morning's are spent in tears due to pain & fatigue. I have no idea what this could be which scares me. What could all of this be?? Do I look for a different endo? Should I find a rheumatologist? I don't know where to start!

[Red_Star]

You have Hashimoto's thyroiditis. You need to wait 4 to 6 weeks for thyroid medication to build up when first starting medication. At a TSH of 16.3, you are still under treated.  It's possible all your symptoms may resolve with optimal thyroid levels. However, you may have one or more autoimmune diseases besides Hashi's. Selenium helps reduce TPOAb. The highest dietary source of selenium is Brazil nuts. My first endocrinologist was not very good (I had to travel 16 hours return to see her too!) so I learnt my lesson...read reviews! My next endocrinologist was very good and rheumatologist was excellent.

Excerpt from Hypothyroid Mom - Top 5 Reasons Doctors Fail To Diagnose Hypothyroidism...

"Thyroid Tests "Normal" But You Don't Feel Well?

If you're undiagnosed, or a thyroid patient taking thyroid hormone replacement medications, being in the "normal" range does not mean you feel well, or that your treatment is optimized. What levels are considered "optimal*" by many integrative physicians?

~ TSH - Typically less than 2.0
~ Free T4 - Top half of the reference range
~ Free T3 - Top half - top 25th percentile of reference range
~ Reverse T3 - Lower end of normal range
~ Thyroid Peroxidase Antibodies (TPO) - Within reference range
~ Vitamin D - Above 50
~ Ferritin - Above 60 (Above 80 if experiencing hair loss)

* we are all different, one size doesn't fit all, so these are guidelines. Your optimal levels may vary."

Just to add to that, the vitamin D listed above is in ng/mL so above 50 ng/mL converts to above 125 nmol/L.

The following info is from the book "The Everything Guide To Thyroid Disease" by Theodore C. Friedman, MD, PhD and Winnie Yu Scherer:

"Although the majority of people with Hashimoto's will not develop any other disorders, it's important to know what some of these autoimmune conditions are in case you do start to experience symptoms. Keep in mind, too, that you may be more likely to develop Hashimoto's if you have one of these other conditions.

Type 1 diabetes
Pernicious Anaemia
Addison's Disease
Vitiligo
Celiac Disease
Alopecia Areta
Systematic Lupus Erthematosus (SLE)
Rheumatoid Arthritis
Sjogren's Syndrome
Inflammatory Bowel Disease
Multiple Sclerosis (MS)"