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Addison's Disease Message Board


Addison's Disease Board Index


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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