Did well now going backwards

[AJWS6]

Hi, been a long time since I ventured to the forums, I've been doing really well for nearly two years till recently.  I went outside the VA medical center for treatment.  Found a doctor whom was willing to listen.  I was on 162 Levo.  All treatments/meds were coming out of my pocket, so returned to VA.  Now here's the problem.  VA physician never test properly, either FT4 only, TSH only, or both.  My last FT3 labs was 10 Dec 2015.  

March 20, 2017, my TSH was 8.40 (.34-5.6), I was prescribed 200 from 162, May 23, 2017, only TSH and FT4 test, TSH 15.42, FT4 1.02 (.57-1.64),.  Dose was increased to 225.  

Was wondering if FT3 can affect TSH levels ?  Although TSH is high, FT4 always in normal range past few years.  VA pcp refuse to test FT3.  

I am experiencing a horrible nervous condition, as if my body is severely hyper, some day's I shake really bad.  2 weeks ago, so bad I was taken to urgent care with severly high bp 207/103.  Feels as if I drank 50 cups of coffee or caffienated soda, clawing up walls.  Any feedback/input appreciated.  Thanks.    

[gimel]

First, TSH is a pituitary hormone that doctors have been taught to believe is the best, and many times the only, test required to initially diagnose thyroid status. That is very wrong.   In addition many doctors think that TSH is all they need to test in order to medicate a hypothyroid patient.  That is also wrong.  TSH does not correlate well with either of the biologically active thyroid hormones, Free T4 or Free T3.  TSH correlates even less with symptoms, which are the reason we go to the doctor in the first place. We don't go because of TSH.  So it is only logical that testing and treatment should be centered around relief of symptoms, yet symptoms are usually ignored in favor of biochemical tests.  That approach has many inherent flaws.

A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being influenced by resultant TSH levels.  Symptom relief should be all important, not just test results.  

You can read about all this and confirm what I say by reading at least the first two pages of the following link, and more if you want to get into the discussion and scientific evidence for all that is recommended.  

http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

Note on page 2 that you should be tested for Free T4 and Free T3 every time you go in for tests.  If there is a high TSH, then tests for the antibodies of Hashi's are recommended as well.  And at least initially you should test for Reverse T3 and cortisol.  Since hypo patients are so frequently deficient in Vitamin D, B12 and  ferritin, those should be tested and then supplemented as needed to optimize.  D should be at least 50, B12 in the upper end of its range, and ferritin should be at least 100.

Symptoms and Free T4, Free T3, and Reverse T3 tests will tell you much more about your thyroid status than TSH ever will.  When your TSH was high, but you were feeling well, there was no need to raise your dosage, especially without knowing your Free T4 and Free T3 levels at that time.  I expect that the increased dosage is the cause for the reactions you are experiencing, so you need to discuss all this with your doctor and reduce the dosage back to where you feel well, and forget TSH results.  

[gimel]

When you were originally diagnosed as hypothyroid, was it due to Hashimoto's Thyroiditis?  Did you start having the nervous condition only after the increase to 225 mpg of T4?  What, if any, symptoms did you have before that increase?  There is lots to discuss, but let's start with this.

[AJWS6]

Hi Gimel, thanks for reply.  No nervousness while taking 162 for a very long time, I felt really good, even when my tsh was 8.4, nervousness began after increasing T4 to 175, then 200, nervousness became worse over time, now almost unbearable.  PCP want's me to take 225 now.  Reason I'm seeking assistance.