Thyroid Cancer / Nodules & Hyperthyroidism Expert Forum
Hypocretin Deficiency and Hashimoto's
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Questions in the Thyroid forum are answered by Mark Lupo, MD. Topics covered include Goiter, Graves Disease, Hyperthyroid, Parathyroid/Calcium Problems, Thyroid Cancer, Thyroid Nodules/Cysts, Thyroiditis, Thyroid & Pregnancy, Thyroid Stimulating Hormone (TSH), Thyroid Tests, and Thyroid Surgery.

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Hypocretin Deficiency and Hashimoto's

So, I have recently found out that my hypocretin deficiency (which is the cause of mynarcolepsy with severe cataplexy) also plays a critical role in the neuroendocring system. Namely, it reduces several pituitary hormones by 50% or greater due to a defect in the hypothalamus where the hypocretin neuropeptide is produced. The hormones that are reduced are: LH, ACTH and TSH. It also greatly reduces leptin levels. (journal of clinical endocrinology and metabolism).

Interestingly, I also have Hashimoto's thyroiditis which has brought about a hypothyroid state.

Despite having obvious clinical symptoms of hyopthyroidism and a low range of FT4, the endocrinologists I have been seeing are refusing to increase my thyroid medication because my TSH is in the low end of the reference range. (0.46, range: 0.4-4.0)

When there is also a defect of either the pituitary or hypothalamus that causes a reduction of TSH secretion, isn't the best method of treatment for hypothyroidism through monitoring and elevating FT4 into the upper half of the reference range? Would it be safe to say that the TSH test would not be a reliable indicator of my thyroid state in this instance?

Would this be considered both central hypothyroidism and Hashi's?
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If there is clear evidence of pituitary disease, then a TSH is not reliable.  It is certainly possible to have both Hashimoto's and pituitary dysfunction.  .  The key, if you are already on thyroid medication, would be to see how high the TSH was on lower doses as a way of determining how reliable TSH is for monitoring your thyroid condition.
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My TSH after 6 months of taking 75mcg Levoxyl went from 2.15 to 1.21 and my FT4 was 0.9. I had been off of thyroid meds for almost 3 months before I was put on the 75mcg because my insurance had changed.

One year later, my TSH dropped down to 0.95 and FT4 dropped to 0.8.

When my dose was increased to 88mcg, my TSH dropped down to 0.46 and my FT4 only rose 2 points to 1.0, or a 9% increase.

Range for TSH: 0.4-4.0
Range for FT4: 0.5-1.6

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Oops... sorry, FT4 went up 18%
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