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Addison's Disease Message Board


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Hi Kmac,

I saw your thread just now and had something to share with you that I just learned...I thought you might find it useful and an easier solution than doing a TRH stimulation test.

My husband was just diagnosed panhypopituitary (all of his pituitary has shut down). We suspected his thyroid issues were also from his pituitary, but in his case his TSH was somewhat elevated, so it confused matters. It turns out that the pit can be failing but you can still put out hormones-just not enough to get the job done...and sometimes (as in my husband's case) the TSH isn't biologically active-it is damaged. So it makes the patient look like they have primary thryoid problems, instead of pituitary issues.

There is a simple test to see if your hypothyroidism is central or not. It turns out that TSH has a diurnal rhythm, like many hormones do. It has a low point in the late afternoon and high point late at night. Our endocrinologist (a very well respected pituitary specialist in California) told us that a measure of TSH at 5pm and again at midnite (same day) can tell you if you have pituitary hypothyroidism. For normal people, the value should increase by 1.5-2x. My husband's only just barely increased by 1.5 and he has no enlargement of his thyroid, so his doc diagnosed central hypothroidism. I do not know how supplementation of thyroxine would affect this test-it may be you have to be off meds for some period of time to know...?

The TRH stimulation test is frustratingly unreliable-the results just don't always equate to the disease. And, as you are discovering, because of that it is really hard to find someone to do it.

Maybe you could share this with your doctor and they could start with this test. (Look up thyroid physiology on the web and you'll find references to this test) Knowing if you have central disease will really help your doctor to better manage your thyroid disease. (Using free T4 instead of TSH levels)

Hope that will help, let us know what happens!
Sadie
Hi Grace,

I don't have pituitary disease but I thought I did for a while (prior to normal test results!) I did alot of reading about fertility stuff, because my husband and I both very much want a child, too. It turns out that of all of the different fertility problems you can have, pituitary failure is the easiest to get around. You will have to potentially (depends of if you make LH/FSH or not) take injectable hormones to make you ovulate but it is very do-able. You should be managed by a high-risk OB but that doesn't mean you'll have any issues. Lots of pit patients have kids!! : )

Sadie
[QUOTE=sadie-mae]Hi Grace,

I don't have pituitary disease but I thought I did for a while (prior to normal test results!) I did alot of reading about fertility stuff, because my husband and I both very much want a child, too. It turns out that of all of the different fertility problems you can have, pituitary failure is the easiest to get around. You will have to potentially (depends of if you make LH/FSH or not) take injectable hormones to make you ovulate but it is very do-able. You should be managed by a high-risk OB but that doesn't mean you'll have any issues. Lots of pit patients have kids!! : )

Sadie[/QUOTE]


Thanks Sadie .... And Orion! :)
The encouragement is awesome! My husband and I are really young (I will be 25 this year) and so we are blessed in the sense that we are starting out on this journey very young. Also, it seems I have "stumbled" upon a dr. that is - at least for the time being - on the right track. I have had one miscarriage and am praying we can figure this out so that doesn't happen again.
Primarily we are just kind of "on hold" as far as fertility things go because we believe first and foremost I need to be back to feeling well again and go from there....hopefully that day comes soon!
One other question... assuming the results of the ITT shows a growth hormone or cortisol definciency, how do they treat it? Drug therapy the rest of my life?? I don't know if it is a tumor or not, although I do know that when they did the whol brain MRI they didn't see anything, but they didn't to the pituitary MRI. Anyway, I have a feeling it could be a head injury issue. Either way, how do they treat these problems?





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