Extreme Fatigue post thyroidectomy

I had total thyroidectomy 6-12-2012.  Doing well, as well as to be expected.  I fought fatigue prior to having removal, but now I have extreme wicked fatigue.  My levels are staying consistent and taking meds everyday at the same time with no food.  I am soooooooo over this fatigue and nothing seems to help, any suggestions would be greatly appreciated as I am just passed back and forth between doctors each blaming each other for what it is and what it is not.  I have had so many specialist appoinments (cardio, pulm, sleep, gi, pcp, neuro) and still cant get an answer besides "fatigue is not life threatening so you may have to just live with it".  Ahh, no I wont.  I am only 38 yo and I have 4 teenagers that I want to be active with.  This is causing MAJOR problems.  PLEASE HELP!

[gimel]

What medication are you taking and what is the daily dosage?  Also, please post your thyroid related test results and reference ranges shown on the lab report.  

[bigmama2336]

I am taking Levoxyl 175mcg.  I cant go higher without having palpatations and extreme anxiety.  My levels last time I got labs were 1.84.  Which where they are drawn and according to my endo that is within the normal.  If I am not mistaken the range is 1.4 to 5.2.  Of  course I do know though that she wants me at 1.2 to 1.4.  
My levels before I had surgery would always go up and down.  They were never consistent.  For what reason she could never tell me other than, " you must not be taking your medicine".  That is not true and I would continue to tell her that.  Again I am over the back and forth blame games.  I have been cleared and told my heart is fine, my lungs are fine, my brain is fine( what they found), no sleep apnea, and no absorption issues. So the only thing left and what the others MD;s revert back to are my thyroid.  AHHHHHHHHHHHHHHHHHHHHH!

[goolarra]

Did your doctor test FREE T3 and FREE T4 along with TSH?  If so, please post those results as well.

[bigmama2336]

No, and that too has been one of my concerns.  She only tests TSH.  I have never had antibodies or other thyroid testing done.  Occasional T3 T4 but very rare if ever.  I have looked at new Enocrinologists but I will have a 6 month to 1 year waiting period.  

[goolarra]

Once on meds, TSH, which should be a screening test at best, is completely inadequate to base dosing changes on.  FT3 and FT4 should be tested every time TSH is, and the three tests in order of importance are FT3, FT4 and TSH.

T4 is the "storage" form of the thyroid hormones.  It floats around in your bloodstream until cells need thyroid hormone, but it can't be used directly by cells.  First, it must be converted to T3, the "active" form of the hormones.  Some people convert T4 to T3 slowly.  

When that happens, a direct souce of T3 has to be added to their meds.  That can be synthetic Cytomel and generics or desiccated porcine thyroid, which contains both T3 and T4.

You're on a pretty high dose of levo, so although your dose might just need to be increased, my guess is that you might need to be taking some T3.  However, without FT3 and FT4, that's exactly what it is...a guess.  The palps and anxiety you experience when trying to increase your T4 meds are a further indication that T3 is your problem.

Searching for a solution faster than 6 months to a year (ugh!), I'd suggest you ask your current doctor to order FREE T3 and FREE T4 (make sure she orders free and not total) and TSH immediately.  If she balks, a gentle reminder that YOU are the one paying for these tests might inspire her.  If she refuses, I have some other thoughts.  

    

[goolarra]

I should have added that antibodies are irrelevant after a TT.

Why did you have the TT?

[bigmama2336]

I had a multinodular goiter that had enlarged rapidly over the last year.  I too was having a great deal of problems with swallowing and choking.  My levels were all over the place, and my grandmother had thyroid cancer with reoccurance.  This put me at a high risk, and my US came back very concerning.  
I have asked several times about other options and again my current Endo tells me that all of my "symptoms" can not be related to my thyroid.  But yet I have had work ups for everything else and they were all negative.  So this just reiterates the fact that it is my thyroid. Very frustrating.  Always put the blame on me saying that I am not taking meds, or I eat with them, or I dont take them at the same time.  THAT IS NOT THE CASE!!!!

[Barb135]

Have you had vitamin B12 tested?  Deficiency of B12 can cause the most excruciating fatigue I've ever experienced. You might want to get your levels tested.

Completely agree that you really need the FT3 and FT4 levels tested.  Your TSH is good, but, as goolarra said, should not be used as the sole criteria for diagnosing/dosing.  

[goolarra]

So, do you think your current doctor would order those FT3 and FT4 tests?

I believe you that you take your meds properly...you don't have to convince me.

The very first thing you need to do is get someone to test FT3 and FT4.  Then, you will know a lot more about what you're dealing with and will know which meds you need to be taking and be better prepared to choose an appropriate endo.  

[Ericamegan]

I agree that you must get the Free T3 and FREE T4 tested.  I had RAI to kill my thyroid and afterwards became very ill because my dr was just testing TSH and T4.  My TSH was very low even though I was hypo.  I saw much improvement after reducing my synthroid and adding a very low dose cytomel.  Now I take armour thyroid and feel great.