HELP!! I am Hypo and need to know what tests to ask for.

[rhondajmac]

I have been on thyroid medication off and on since I was a child. I am now in my mid 50's and taking 350mcg of levothyroxine daily. At one point when I was pregnant my physician took me off my medication and it took me years and changing doctors to finally find someone who would even check it. No one thought I could have a thyroid problem since I am not overweight. I have been back on my meds for several years now.

I had been on 300mcg of Levothyroxine for many years until 2012 when my TSH came back at 0.23 (range 0.35-4.94) Usually dr only tests my TSH level. With this test coming in below the range,  the Dr dropped me down to a very low dose which shot my TSH up to 54.43 in a matter of weeks. It took a year to get it back down.

Since that time, I have noticed a significant loose of mental functions and it is gradually getting worse and I am getting very frustrated. I cannot think. I don't care how hard I try my brain just doesn't seem to want to function 1/2 the time. I cannot keep things straight in my mind, I get confused easily, my short term memory is non existent. I often loose track of where I am and what I am doing. The fact that I loose my direction and where I am has been the most scary. I have lived in the same town for the last 25 yrs and it is NOT a big city. I got lost one day trying to make my way to the elementary school to pick up my granddaughter. I have gotten lost in Walmart. This sense of disorientation comes on very suddenly. In an instant, all of a sudden I don't know where I am; my surroundings don't look familiar or I don't know what direction to go to get where I want to be.

I have become very tired again to the point I cannot function. I have been feeling light headed or like I am on some kind of cold medication.

There is been only one time that I know of when the Dr tested something other then my TSH and that was back in January of 2013.
My TSH was 34.64 (range .35 - 4.94)
T4 Free was 0.8 (range 0.8 - 1.8)
T3 total was 60 (range 76 - 181)

My most recent results (4/26/16) have been
TSH 4.49 (range 0.35-4.94)
T4 Free 1.06 (range 0.7-1.48)

The way I have been feeling I was very surprised with the results and since these are in the normal range, I don't see the Dr doing anything. It has usually been just my primary care physician that has tried to regulate my thyroid levels. Whenever I have gone to see an endo Dr they just tell me that my numbers are within range so I should be fine.

I have a follow-up appointment with my primary next week to discuss my symptoms and test results. What additional testing should I ask for?

[gimel]

Just for info,  Endocrinologists are not necessarily good thyroid doctors. Many of them specialize in diabetes not thyroid.  Also, many of them have the "Immaculate TSH Belief" and only pay attention to that.  Which is wrong.  If they test beyond TSH it is usually only for Free T4 and if found within its reference range, they will tell you that you are okay.  That is also wrong.  I could explain in more detail if needed, but suffice to say that you should look for a doctor that meets the description I gave above.  Typically those are hard to find.  I am sending you a PM with some info that might help.  To access, just click on your name and then from your personal page, click on messages.

[gimel]

Certainly you need to always test for Free T4 and Free T3 every time you go in for tests.  Those are the biologically active thyroid hormones.  Scientific studies have shown that hypo symptoms correlate best with Free T3 levels.  

If not already diagnosed as having Hashimoto's Thyroiditis, then you should test for the antibodies of Hashi's.  First test for Thyroid Peroxidase antibodies, abbreviated as TPO ab.  If that is within range then they should also test for Thyroglobulin antibodies, known as TG ab.  

When already taking thyroid meds like you are, testing for TSH is a waste of time and money.  It adds nothing to the evaluation.  In fact, hypo patients taking thyroid med adequate to relieve hypo symptoms often find that their TSH is very low in the range, or suppressed below range.  

Looking at your test results, your Free T4 was at rock bottom of the range, and your Total T3 was actually below range.  That is indicative of a med dosage that was inadequate.  In your recent tests your Free T4 was adequate, but your Free T3 was not even tested.   I expect that it is low due to inadequate conversion of the T4 to T3, resulting in hypo symptoms.  

Most importantly, 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 constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  So you need to talk to your doctor about clinical treatment, as described, rather than dosing you based on TSH levels, which doesn't work.  

Also note that hypothyroid patients are frequently too low in the ranges for Vitamin D, B12 and ferritin.  D should be about 55, B12 should be in the upper part of the range, and ferritin should be about 70.  If not tested for those you should do so  and then supplement as needed to optimize.  

So when you see your doctor I suggest that you request to be tested for Free T4, Free T3, Reverse T3, Vitamin D, B12 and ferritin.  Also inquire about clinical treatment instead of treatment based on TSH level, and also ask if the doctor is willing to prescribe T3 meds like Armour Thyroid or Cytomel, if required to adequately raise your Free T3 level.  

[rhondajmac]

Thank you so much for this info. I will show it to the Dr when I go and see how far I get. If I can't get anywhere with him I will try to find an endo Dr who will help me.