sadie-mae

Hi Robin,

The general rules for an ACTH stimulation test apply to an ITT test also. Your cortisol should rise above 18 (some say 20) to be considered normal on standard test scales. Your response was not nearly enough.

The ACTH response was also pretty paltry. Most normal people will at least double, I believe (don't quote me on that one). You already knew your issues were pituitary but this is just further evidence of it being secondary Addison's.

The values that really blow my mind are the growth hormone test results. You should (at a bare minimum) stim to above 5.0, most normal folks stim well above 10. Your numbers are really nonexistent. You have complete failure of growth hormone response.

You know how you were asking if replacing cortisol and thyroid would help your growth hormone bounce back? It's the people in the 5-10+ range that MIGHT be able to pull something off with adding other drugs first. Your function wouldn't bounce back regardless of treatment. If you had the abililty to produce it, even if your other hormones are out of whack, you should have seen some response and there was none. You have a severe deficiency here and desperately need replacement. Keep on hunting for a doctor until you find someone who knows their stuff. The fact your doctor is blaming menopause (based on what?) suggests strongly that she doesn't understand the physiology here.

If your FSH or TSH are high-it could very well be that you have a tumor that is producing one or both of those hormones. While the hormones secreted normally have a function, often if they are the result of a small pituitary tumor, the variety made is biologically inactive (the tumor can put out faulty hormones). So, sometimes they are still called "nonfunctional pituitary tumors" Sort of a misnomer. If you do a search on these types of tumors, that's what I would call them for the search or they are hard to find. If you have a microadenoma that is making nonfunctional TSH then it would make it look like you were very hypothyroid. Did someone measure a concurrent free T4 with the TSH? It may still be low but due to pit issues and not thyroid ones. This has fooled many doctors along the way (and my husband's doctor too for a little while).

Even if you have positive hashimotos antibodies ( I can't remember if you did) remember you can have two problems at once. The pituitary thyroid issues will cover up the primary thyroid issues. One of the tip offs is if your doctor doesn't really notice a goiter or thyroid enlargement during exam. That is a clue the big issue is pituitary. There are tumor that make fake TSH, just like fake FSH.

Originally, they thought that my husband's 3mm pituitary tumor was making FSH because his levels were high. (That's how I learned about this). There are tests that they can do (alpha and beta subunits of FSH) to see if that is the case. Perhaps you aren't in menopause at all, but rather suffering loss of periods due to loss of biologically active/normal FSH. (What are your LH levels?)

Pituitary failure seems far more likely in you than any other explanation and the proof is in these test results...you have secondary Addison's and growth hormone defiency. Now the question becomes, "Why?"

Have you had an MRI (WITH contrast) of your pituitary gland? It wouldn't surprise me if they found a little tumor lurking up there squishing everybody else so they can't do their job right. It doesn't take much in the way of size to do terrible damage.

I was thinking about your previous posts and realized that my husband is in a similar predicament with his thryoid replacement. He has been trying to add it in (after being on cortef for 3 weeks) and he gets almost immediately irritable (argh) and has palpitations and heart racing. His free T4 was still 1.4 (technically normal). He has no goiter. His TSH was 7.6 (suggesting primary hypothyroidism) But his doctor did a test where they check it at 5pm and 12midnite and TSH has a diurnal rhythm. It should increase by 2x during this time. His did not. So now we know that either the thyroid he is making is fake stuff or it's the best his pituitary can do and for now it is keeping his T4 in an okay range. Either way, it could be he doesn't need the thyroid replacement quite yet and so he has reactions to it. Just thoughts-we have no answers on this one.

Obviously, this is just what I have read and tried to learn about. I am no medical doctor so take what I say with a grain of salt.

I just really want you to find the help you need. I know how sick my husband has been and it kills me to know that you know what is wrong with you but you can't find someone to listen, understand and help.

Take care,
Sadie