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Addison's Disease Message Board


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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
Hi Grace,

Sorry for not answering sooner...I've had a couple of really bad days here. Doctors are driving me crazy. I just want a diagnosis! I am so tired of doctors not even trying to lift a pinky finger. The always manage to say the the doc before must have done a thorough job or that the specialist x I am about to see will surely have more information than they can offer. TURF! I feel like a football on a Sunday afternoon at the NFL. When did doctors get so dang lazy?

It was my understanding that you needed to stim above 18 (minimum) for an ITT. I have read other papers that use 15 as a cut off for the high dose ACTH stimulation test but I think you will find plenty of doctors that would disagree-especially if you are symptomatic.

The same applies for growth hormone. Some of the more conservative institutions say 3 is the cutoff--I think it came from a research paper out of MGH in Boston. Our local endo told my husband he was so happy to report his GH stim was normal at 5.6. It turns out that most insurance will cover GH if you stim to less than 5.0. We figured he was borderline. When he talked to his official pituitary doctor, he was unequivocal about it all-he said my husband absolutely needed growth hormone and that it was indicative of the chance of other hormone deficiencies. He completed all pituitary testing and found he was not making any pit hormones. Insurance has been very cooperative so far.

In the long run what matters more than the numbers, borderline or not, is what your symptoms are. If you feel the symptoms that fit with the deficiency, (and you must because you have gotten the right tests!! : ) ) then you need to seek another opinion. Generally, the only people who know squat about these test results are those who truly specialize in just pituitary diseases. Our local doc advertises an "interest" but that is not the same thing. It is worth traveling to find, if you need to (and we sure did). Please don't give up-you are entirely justified in your wanting to fight for this and the drugs will help you feel better.

Hi Robin! I'm happy to hear back from you. So, your MRI didn't show anything? Many times tiny tumors don't appear the first time around-it doesn't make them any less damaging. (My husband's is only 3mm) It does sound like you got contrast, but even then up to 30% of tiny tumors are missed. The other vital factor is WHO is reading your MRI. One thing to consider is sending a film copy of your MRI to a pituitary surgeon in the United States. They usually like a written history, copies of your labwork and a copy of the MRI (the films, not on CD). They will charge you but it's often less than $200 American dollars. That way you get a really good opinion on your current MRI. It could be you need something called a "dynamic MRI" which is where you have contrast injected AS the MRI is done, rather than all at once before they slide you in the tube. It gives a much more accurate picture of your pituitary. There are several really famous neurosurgeons who will do this by mail. I would do a search for pituitary surgeons who specialize in Cushing's disease and see who pops up. (I'm sorry--maybe I screwed up here-did you already have a tumor found on your MRI and I have forgotten?)

I really think that your issues are due to your pituitary disease. I'm sure low estrogen is just exacerbating things but I doubt it is causing the problems. My husband had to get on one hormone at a time because his doctors were much like yours-they had tunnel vision and couldn't see the big picture. I really know the frustration-I am experiencing it myself right now. Estrogen is so important for protecting your heart and bones, especially since your are so young, so hopefully you can get it from the current doc and then quietly move on. (they have topical creams in Germany, right? They wont interfere with other hormone testing in the future)

It is so hard to know what is the root cause of your pituitary disease. You are too young to be menopausal so what is causing it? You are still quite a bit younger than your sisters, though, aren't you? There must be a way to test for antibodies causing damage to your ovaries. Since you have strong evidence of Hashimoto's hypothyroidism, it is definitely possible. There are also some papers written about autoimmune destruction of the pituitary gland, too. I don't think there is any way to prove it-it's more a diagnosis of exclusion (no history of head trauma, no tumor, no empty sella syndrome, etc)

If autoimmune ovarian damage is not evident, then I would really push to get the alpha and beta subunit testing for FSH to see if a pituitary tumor is putting out FSH. That would be a way to explain everything else being low but one thing high. It also completely depends on where the tumor or damage is-it can be very hit or miss. Perhaps it is a shot in the dark but If that is the case, there is a chance you could have surgery to remove a tumor and get better. (I don't know how FSH secreting tumors are treated-I'm just guessing there)

My husband's history was equally confusing and it was what tripped up so many endocrinologists along the way. He had testicular cancer and radiation therapy as a teenager. He shouldn't have had damage to his testosterone production or fertility (no chemotherapy was used), yet he did. All of the docotrs said that was the cause but it never made sense to me-his slightly high FSH kept dropping like a rock. When I asked-they never seemed able to answer our concerns. I kept noticing his FSH and LH were too low but the doctors just saw that they were in 'normal range.' In the face of low testosterone, that is really abnormal. Try a search under the terms good and hormone and health and see what comes up.

I'm sorry for your continuing nightmares. You both will find answers and a doctor who gets it. Don't give up the fight. (I say to you as I want to just bash my head against a brick wall if I have to see another doctor!!)

Take care,
Sadie





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