Help with latest lab results - on desiccated thyroid but still low energy

[atalanta934]

Hi everyone,

So, the latest in the saga.  I was on 180 erfa but still feeling symptoms (fatigue, heaviness in limbs, low body temp (especially before bed).  Went to an endo who only looked at my TSH number and told me I don't have a thyroid problem and should get off all meds.  Not exactly the "help" I was seeking.  

I do think my dose was too high.  I kept raising the desiccated thyroid hoping it would finally kick in but I am guessing my issue lies elsewhere.  I do think I need the thyroid help but there's something else going on.  I have been tested for ferritin but not D or B vitamins (though I supplement daily with both including extra B12 now). I would love any help.

Here are the list of test results.  (I never take meds before the blood draw.)

May 2015  no meds TSH 1.21 (0.20-4) FT4 11.3 (10-25) FT3 3.3 (3.5-6.5) TPO 13 (0-34)
July 15 30 synthroid     TSH 1.1                 FT4 11.9                 FT3 3.5
Sept. 2015, 75 mg erfa    TSH 0.05                 FT4 15.7                 FT3 4.6
October 25, 2015 DHEA-S 2.4 (1.5-13)
Nov. 25 120 erfa           TSH<0.01         FT4 6.9                 FT3 20.9
Jan 6 2016 120 erfa TSH   0.01         FT4 18.8                 FT3 6 Ferritin 130 (13-375)
March 2 120 erfa           TSH0.01                 FT4 17.3                 FT3 5
CORTISOL AM 454 (200 - 690 nmol/L)
Cortisol PM 212 ((200 - 690 nmol/L)
April 18 180 erfa          TSH <0.01          FT4 18.6                 FT3 6.1
June 9 150 erfa                TSH 0.01          FT4 16.4               FT3 4.9

[gimel]

I think you should point out to the Endo that from your May 2015 results it is apparent that you have central hypothyroidism since your TSH is low in the range even though your Free T4 was at only 9% of its range, and your Free T3 was below range.  So there was inadequate TSH to stimulate the thyroid gland, with resultant hypo symptoms.  

As for wanting you to stop taking med you can further point out to him this link to a scientific study of patients with central hypothyroidism, with conclusions following.

http://www.ncbi.nlm.nih.gov/pubmed/12481949

"Suppression of TSH by thyroid replacement to levels below 0.1 mU/L predicted euthyroidism in 92% of cases, compared to 34% when TSH was above 1 mU/L (p < 0.0001). In conclusion, in central hypothyroidism baseline TSH is usually within normal values, and is further suppressed by exogenous thyroid hormone as in primary hypothyroidism, but to lower levels. Thus, insufficient replacement may be reflected by inappropriately elevated TSH levels, and may lead to dosage increment."

Also tell him that you want to supplement for D and B12, but would like to know the starting levels in order to estimate supplement amounts.  It will be interesting to see his reaction to asking for the Reverse T3 and Free T3 tests.  If he asks why tell him that the ratio of Free T3 to Reverse T3 is a good measure of tissue thyroid levels.  In the following link you will find evidence of that.

http://press.endocrine.org/doi/pdf/10.1210/jc.2005-0872

This study demonstrated that TSH and/or T4 levels are poor indicators of tissues thyroid levels and thus, in a large percentage of patients cannot be used to determine whether a person has normal thyroid levels at the tissue level.  This study demonstrated that RT3 inversely correlates with physical performance scores and the T3/RT3 ratio is currently the best indicator of tissue levels of thyroid.  

[gimel]

Personally I don't have any problem with your April 18 results, as long as you did not have any symptoms that could relate to being hyperthyroid.  So I am not sure there was any benefit to reducing the dosage, especially since you still had some symptoms,  So now the question is about the cause for those remaining symptoms.  

Even when FT4 and FT3 levels look good, there can be other causes for having symptoms.  Tissue thyroid effects (symptoms) are not always directly comparable to serum thyroid hormone levels.  There are many factors that can affect transport of thyroid hormone into cells.  Then there are several factors that can affect metabolism of thyroid hormone at the cellular level.  In order to assess tissue thyroid levels and effects when results don't seem to match serum thyroid hormone levels it is a good idea to test for both Reverse T3 and Free T3, along with Vitamin D and cortisol.  

Of course you have Free T3, but it needs to be tested at the same time as Reverse T3.  You also need to know the actual Vitamin D level.  You have some cortisol test data which I don't quite understand.   The AM result is lower than recommended in many places.  I don't understand why the PM range would be the same as the AM range.  Please check that.  

[atalanta934]

Gimel,
Thank you so much.  You are right about the range of the PM cortisol.  Oops!  It is 60-450 nmol/L.  
I am seeing my doc next week and will ask to be tested for the things you suggest.  I asked before about testing my D and B levels and he just said, 'just supplement, no need to test.'  
I would really appreciate any other thoughts you have on this.  I will update with the latest results when I have them but right now I have an endo who wants me to get off all meds and I'm just trying to figure everything out for myself but am not sure what to do.
Thanks again.