Low Acth Dr is ignoring - Addison's Disease Message Board

keystone206 · 02-02-2008, 08:52 AM

I really don't know where to go with this, but I have been doing a lot of reading and my blood work and symptoms have pointed me in this direction. I appreciated your input, and will try not to be too wordy!

In april 07 I went to the Dr because I had severe leg cramping, insomnia, Gerd and headaches so he tested me for thyroid: TSH .12 (0.34 – 5.60)
Thyroxine free .7 (.6 – 1.6)

They waited a month, retested me and my labs were :

TSH .10 (0.34 – 5.60)

Thyroxine Free .8 (.6 – 1.6) T 3 was “normal”

After this I had an MRI of my pituitary, an ultrasound (multi nodular goiter, with cysts), FNA (negative), and a RAI Uptake (both cold and hot spots).

I also had these labs done:

Atch < 5 (6 – 48 PG/mg)

HumanGrowth Hormone 0.1 (.0 -6.0 UG/DL)

Cortisol am serum 7.7 (6.0 – 28.0 UG/DL)

I was told these were normal

At this point mid August they finally started me on levox 50 mcg I was retested 8 weeks later and my labs were:

TSH .03 (0.34 – 5.60)

Thyroxine Free 1.0 (0.6 – 1.1)

They cut my dose to .25 mcg.

I was just retested last week and my labs were:

TSH .09 (0.34 – 5.60)

FT4 0.95 (0.7 – 2.0)

My sodium is at 144 (135 - 145)
potassium 4.1 (3.5 - 5.0)

Eosinophils elavated 3.1 (1.0 - 3.0)

I don't know what to do at this point. Since they have reduced my levox dosage, my leg cramps are back with a vengance, Gerd is worse, more irratable, extreme intolerence to cold and more fatituged.
Thank-you for your time, sorry this is so long

rumpled · 02-02-2008, 02:28 PM

ACTH is a tricky test. Tricky in that if the tube is not chilled, not spun right away, not frozen right after that ... well, the results will be lower than it really is as ACTH degrades at room temperature. And the tube has to be an EDTA lavender one. So if your lab tech took the wrong color (often red) or just plunked the tube in a bin to process later, your result will show up super low like yours did. So, hard to tell if your test is real or if it is lab error.

That being said, your sodium is on the high side - which is good for an addisonian. A crisis occurs for an addisonian when sodium drops and for most, potassium rises (although I know of some that potassium drops too).

Your doc, IMHO, did not run such great tests... GH is not the best for GH - it should be IGF-1 which is more accurate. He also did not run a free T3 or is that the T3 you noted?

Did your MRI have contrast? Even with it negative, keep in mind that often pituitary tumors do not show up. Did you get a copy of the report?

With all those nodules - are you watching your diet to make sure you are not eating foods that are goitrogenic?