Hyperthyroidism/Grave's- Confusing Test Results

[Namaste1920]

Hi- I'm a 40 year old female.  A year ago, I was running 25 miles a week.  Now I'm down to walking.

Symptoms:  25 lb weight loss in past year (w/o trying).  I am 5'11.  A year ago I was a size 8, now I can almost fit a size 2;  rapid heart rate (resting heart rate in bed about 105), with some tachycardia nearly every day; depression, anxiety attacks, mood swings; debilitating PMS;  With weight loss, I developed lots of pain in hips and neck; developed bursitis in both hips due to loss of muscle mass.  

Weakness, esp with stairs or strenuous exercise; some short term memory issues; focus issues; sleep issues- getting to sleep, staying asleep; hair loss at top hairline, and hair overall has gotten very brittle and straight- won't even curl with an iron.

I have had, for most of my life, orthostatic hypotension.  Sitting down, or bend over-  then come up- feel faint, dizzy, see stars.  Blacked out only once.

TESTS:  TSH- .43.  Regular T3 and T4 came back normal.  Radioactive Iodine Uptake came back positive (high), indicating hyperthyroidism.

Family Doc said: "You have Grave's Disease," and sends me to an Endo.

Endo says:  "You don't have hyperthyroidism, your TSH isn't low enough.  But we'll run some more tests."

MORE TESTS:  More sensitive T3, T4- all came back normal.  Thyroid Stimulating Immunoglobulins (TSI):  Positive at 225% (normal range says 0-139).

Endo says TSH is sole determining factor, despite positive Radioactive Iodine Uptake, despite TSI high.

Says I'm not even a borderline hyperthyroid case.

Says I'm at risk for hyperthyroidism, but don't have it currently.  He ends with, "I don't know what's wrong with you."

Very frustrated at this point.  Tired of poor health.  I've been tested for chronic fatigue, fibro, lupus, rheum arthritis, ankylosing spondilitis, celiac sprue, addison's, and have had one cortisol test.

My BP has always been low at 100/60; cholesterol 150, LDL 66.  Heart rate has always been high, in the 80's.  Now, resting and reading a book in bed, 105.

Endo had me do an echo and treadmill to check out rapid heart and tachy episodes as next "avenue" to pursue.  No results as of this writing.

While this endo seems smart, he is older and old school.  I am reading conflicting things about normal TSH levels.

Should I get a second opinion?

[Namaste1920]

Thanks for input.  I think I am going to get a second opinion from another endo.

This endo said in order for me to by "hyper" my TSH  *had* to be .10 or below.

Lab tests show me as out of range low... but for hyperthyroid, he says not low enough.

My mom does have Hashi's so it seems to make sense to get the other antibodies tested.

Thanks!!

[armywife92]

You also may want to test for the Hashi antibodies. You could have both antibodies. When this is seen they refer to it as hashitoxicosos. I have both antibodies, but I've never been ''clinically hypo'', so most docs will only see me as having graves/hyper. Anyway that 'could' be one reason why you have high TSI and normal thyroid panel. Then again, according to some panels, your TSH is slightly suppressed. I've seen some START at .45. You are experiencing symptoms b/c your TSI is high. Everyone is different, but it is said that most ppl are asymptomatic when their antibodies are 50% and below, HOWEVER when my TSI was 99 I didn't have any symptoms. You really really need to switch endo's by the way, and fast!!!!!

[Namaste1920]

PS-  I forgot to mention in the Hyperthyroid Q above:  My mom has Hashi's.

I have had in the past, two other autoimmune conditions:  Raynaud's and Meniere's