TSH Levels

I had a thyroidectomy in 1997 and I was started on .200 mcg of Synthroid which I took until 5 years ago when my Doctor said it was too high a level of medication so he lowered in to ,175 mcg. Six months after that I had the TSH level tested again and again he said it was too high a level. He lowered it to .150mcg. In March I went to another Doctor and had the TSH levels tested and he said my level was "through the floor low," which indicated that I was taking way too much medication. The first of April he had me stop taking all medication for 6 weeks time to see if the TSH levels out. How can it levels out if I do not have a thyroid? I was a very active person but now I do good to make it to 12:00 noon without taking a nap. I feel as if my life is coming apart.

[gimel]

TSH is a pituitary hormone that is affected by so many variables that it is inadequate as a diagnostic by which to diagnose and medicate a thyroid patient.  At best TSH is an indicator to be considered along with more important indicators such as symptoms, and also levels of the biologically active thyroid hormones Free T3 and Free T4.  Note that these are not the same as Total T3 and Total T4, which are somewhat outdated and not nearly as useful as the Frees.

Patients taking significant doses of thyroid meds frequently have suppressed TSH levels.  That does not mean that you are hyper, unless you have hypo symptoms due to excessive levels of FT3 and FT4.  Many doctors don't understand just how unreliable TSH is when taking thyroid meds.  For example my TSH was about .05 for over 25 years with no hyper symptoms.  During this time I can't even remember how many times a doctor or Physician Asst. insisted that I needed to reduce my meds.  But I always refused to do so because I was never hyper.  In fact i had lingering hypo symptoms until I learned about the importance of FT3 here on the Forum.  When tested I found that my FT3 was low in the range so I got my prescription changed to include a source of T3, and now I feel best ever.  

A good thyroid doctor will treat a patient clinically by testing and adjusting FT3 and FT4 as necessary to relieve symptoms.  Symptom relief should be all important, not test results.  Test results are valuable mainly as indicators during diagnosis, and afterward to track FT3 and FT4 levels as meds are revised to relieve symptoms.

You can get good insight into clinical treatment from this link.  It is a letter written by a good thyroid doctor for patients that he is consulting with from a distance.  The letter is sent to the PCP of the patients to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

So I think the first thing you need to do is get tested for Free T3 and Free T4, along with TSH.  When results are available, then get a copy of the lab report and post results and reference ranges here so that members can help interpret and advise further.   While at the doctor's office you might want to give a copy of the link above to the doctor and discuss clinical treatment.  If the doctor continues to insist that you are hyper and need to reduce your meds, then you will have to find a good thyroid doctor elsewhere.

[Super_sally888]

100% back up Gimel's words.

With no thyroid you must have thyroid medication or you will end up dead.  6 weeks without thyroid hormone when you have no thyroid is alarming.  You could end up very very sick.  I strongly recommend you act on this quickly and don't wait for the 6 weeks to be up.;

TSH is useless for long term monitoring of thyroid hormones.  The fact that your doctor is only looking at TSH and that the TSH has stayed so low despite decreases in medicine should have raised some sort of alarm for him - that the TSH was not reflecting the real thyroid hormone situation.  Obviously it didn't.

You need to test FT3 and FT4.  Your meds should be adjusted based on this.  TSH should be ignored from here on.

Most likely you need to go back to your .200 mg dose.

Get a new doctor if need be.

My TSH is always < 0.01 these days.  My doctor, than goodness realises that TSH is not useful for me, and we only test FT3 and FT4.

[Totie]

Make sure "thyroid tissue", has not regrown, it can happen....

[danie17075rm]

I was thinking the same thing.  If any tissue was left, your thyroid can actually regrow and perform as a normal thyroid.

[flowerpower365]

Thank you for this most helpful information. I took this to my Doctor and he agreed with it and has referred me to an endocrinologist. I haven't gotten an appointment yet but as soon as I do and find out what is going on I will post it. Thanks again.

[gimel]

Please be aware that just because the doctor is an Endo does not mean that he is a good thyroid doctor.  Many specialize in diabetes, not thyroid.  Many also have the "Immaculate TSH Belief" and only want to test diagnose and medicate based on TSH, which doesn't work for the patient.  Others totally believe in "reference range Endocrinology" and believe  that any FT3 and FT4 test result that falls within the range, even in the low end, is adequate and that nothing more is necessary.  This approach frequently results in patients with lingering hypo symptoms.  

To find out if a doctor is the good thyroid doctor you need, I would suggest that you call and mention that you are considering making an appointment, but before doing so, you would like to ask one of the nurses a couple of questions.  This almost always works, I have found.  Then I ask the nurse if the doctor is willing to test and adjust FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  I also ask if the doctor is willing to  prescribe thyroid meds other than T4 types.  If either answer is no, chances are you need to keep looking for a good thyroid doctor.  

[flowerpower365]

Thank You! I will call the office that my Doctor referred me to and ask these questions. If it is not, then I will keep looking.
Thanks again.