High TSH after Tyroid Removal

[Hatty78]

My husband had papillary thyroid cancer over 10 years ago.  His check ups and blood work has always came back in a desired range for his past condition.  He had a total thyroidectomy in the past.  His last appt he asked for additional blood work (besides the normal TSH and T4 free) due to an eye doctor saying they saw cholesterol deposits in his eyes and the fact that he has been generally feeling "off".  On 4/25 his TSH came back 9.31 and Free T4 was 1.28.  His BUN levels came back a little high and cholesterol a little high.  His endocrinologist had him double up on the Levoxiyl and retest.  He normally takes 137 mcg and has been at that dosage for years.  So fast forward to today.  After doubling up on his meds for a week he retested on 6/8/2018.  His TSH is now 17.12 and his Free T4 is 1.10.  What does this mean?  How high of a dose can he possibly be on?  If doubling his meds didn't work I am concerned about what they would have to do to get his levels in the correct range.  Final question … could this signal the possible return of cancer?

[gimel]

Well those symptoms can be thyroid related.   To get a better idea of what is going on he also needs additional testing.   Before going further,  I should clarify the correct definition for hypothyroidism.  This is not just insufficient thyroid hormone, instead it is "insufficient T3 effect in tissue throughout the body due to insufficient supply of, or response to, thyroid hormone."  Note that the response to thyroid hormone is also important.  Also note that Tissue T3 Effect is what determines a person's thyroid status, not TSH and FT4.  A person must have adequate T3 at the cellular level plus optimal Vitamin D and cortisol, among other things.  Apparently your husband has not even been tested for Free T3.  How about Vitamin D and cortisol?  

T3 availability is mostly dependent on conversion of T4 to T3.   Sometimes under the wrong conditions, T4 is converted to excess Reverse T3, instead of T3.  Conversion is affected by a number of variables including ferritin and B12.  So the bottom line is that your husband needs to be tested for Free T3, Reverse T3, cortisol, Vitamin D, B12 and ferritin.   Free T4 and Free T3, the biologically active thyroid hormones should be tested every time he goes in for tests.  

As for the question about the dose being doubled with little effect on serum TSH and FT4 levels, first I cannot believe the doctor would just double his prior dosage of 137 mcg all at once.  He could have had a severe reaction.  Fortunately T4 med has a half-life of about one week.  which means that it takes about a week for serum levels to reflect even 25% of the increase.    As to why even that did not show up in followup tests,  might be related how he took the med, or poor absorption, or test variability, or excess conversion of T4 to Reverse T3, or other unknowns.   Of much greater importance as I see it is that the doctor should not have been dosing him based on TSH, as I am sure happened since his FT4 was mid-range.  Instead dosage should be based on achieving symptom relief.   This usually requires Free T4 at mid-range, and Free T3 in the upper half of the range, and adjusted from there as needed to relieve hypo symptoms.    Your husband's FT4 was adequate, so why double the T4 med?   The doctor should have been doing the needed additional tests to better understand what was going on and then make a decision on med and dosage.  

A good thyroid doctor will diagnose a person clinically,  by  first evaluating for symptoms that occur more frequently with hypothyroidism.   Then he will  do extended biochemical testing as required to confirm what the symptoms indicate.  Then he will treat clinically by adjusting Free T4 and Free T3 levels as required to relieve symptoms, without being influenced by resultant TSH levels.  Symptom relief should be all important in treatment, not just test results, and especially not TSH results.   Based on your experience with that doctor I seriously doubt he will accept these suggestions and change his protocols.   If you think it might help you can click on my name and then scroll down to my Journal and read the one page overview of a full paper on Diagnosis and Treatment of Hypothyroidism: a Patient's Perspective, and consider giving a copy to the doctor.   If you think it is unlikely that the doctor will do so, then let us know your location and perhaps we an suggest a good thyroid doctor in your area, that has been recommended by other thyroid patients.  

[gimel]

First thing to understand is that when taking thyroid medication, TSH cannot be used to determine thyroid med dosage.   Type of med and dosage should be based on relieving symptoms, without being influenced by resultant TSH levels.  Symptom relief should be all important, not just test results.  A recent, excellent scientific study concluded that, "Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."

So before going further, please tell us about all the symptoms he has.  

[Hatty78]

He is exhausted!  Tired all the time, heart palpitations, moody and achy.  He tries to “push though it” but he feels miserable.  Also had a very hard time sleeping.  Always wakes up tired.