My ACTH was 300 and on retest 290 which is 10 times higher than normal range. Yes I have had an MRI (with & without contrast specifically looking at pituitary) and no pituitary abnormality was found. I have also read on the internet that 50% of MRI's may not reveal a pituitary tumor but I am not sure this is accurate information.
I have MDs in the family and one is a Ph.D./MD Nuerologist. I had him dig into this for me after finding my repeatedly high ACTH and my MDs telling me MRI is clean you are normal in cortisol. He did say that some people can have microtumors that are benign nodules of hyperproducing ACTH tissue. He really doesn't worry about the microtumors that can cause border line issues in ACTH (<1000) that are not visible on an MRI. He doesn't think surgery is the way to go in treatment. These tumors tend to be slow growing and benign aggravants of the gland. Like most Hashimoto's nodules.. they just are hot ACTH producers. However removal of the pit gland effects A LOT OF things so, in these cases you want to suppress the ACTH much like you would suppress TSH post TT cancer thyroid patients. You do this with cortisol supplementation. His advice made sense, especially after I processed for about a month. I have followed my cortisol levels (saliva, blood and urine for a number of years) to test adrenal status. What extensive adrenal testing lab do you recommend or use?
I have done it all and believe it is all part of the whole picture.
1) Spot checks of fasting 8 am ACTH are a must periodically. When you do this you might as well check the cortisol levels too.
2) Periodic saliva rhythm cortisol checks are a must as well. you have to see how you are through out the day when supplementing cortisol. This allows you to best supplement your cortisol demands.
3) Urine isn't as necessary, but occasionally it gives you an overall average cortisol level for a 24 hour period that can tell you if overall you need to add more HC.
4) Having at least ONE ACTH stimulation test before supplementing cortisol is a must. ONCe on HC coming off of it is a B-WITCH to say the least. Just did that recently.. my levels are still in FLUX! UGH! The STIM test allows you to see if you have any specific synthesis deficiets. Before doing this test you need to be off birth control pills and steriods supplements for 6-8 weeks. Yeah, fun!
For a couple of years, my cortisol has been high 1st thing in the morning but now my cortisol is low mid day and in late afternoon indicating adrenal fatigue. I am now currently supporting adrenals with various formulas and taking a hypothalamus/pituitary glandular to see if this will help to lower ACTH. In the past I have also taken various adrenal formulas as needed based on lab tests. Over the past 2 years, I have had high morning cortisol therefore not Addison’s Disease and high ACTH 131 (3 X normal range) which led me to believe pseudo cushings as my body type didn’t fit typical cushings picture. Other organic acid markers and neurotransmitter testing revealed an over firing of the sympathetic nervous system and excessive catecholamines which I am now using various supplements/herbs to lower.
Depending on these supplements you may have to go off of them for and ACTH stim test. My TSH is .1 which currently indicates more potential hyperthyroid range. I am waiting on test results for Fee T3 and Free T4 to more accurately give the whole picture. T4 and T3 within range.
This can also be a result of too little cortisol allowing for a T4 to t3 conversion free for all. this is common in hypoadrenal patients. the result is hypoT in T4 and hypoerT in T3.. sucks! Been there.. still visit it.. you can live with it IF you take your medications like a good girl.
I have also heard numerous clinicians imply that thyroid medication can often cause adrenals to burn out. And I have heard clinicians say “Balance adrenals and the thyroid may self correct”.
Uh? Huh? Bare facts.
HYPOTHYROIDISM if left untreated or undertreated will cause adrenal burn out/fatigue. Thus you need to treat your hypothyroidism as well as hypoadrenalism. In some cases treating the hypothyroidism will allow the adrenals to recover. This occurs in one-forth the patients according to statistical studies. I am not hopeful that mine will recover.
NOW in some HYPERTHYROID patients the adrenals go into hypercortisol production to slow down the converison and presence of T3 in the system.. over work here can cause adrenal collapse as well.
The adrenals and thyroid are interlinked, you can not optimize your thyroid treatment if you have adrenal dysfunction with out treating the adrenals too.. but you can not treat the adrenals effectively if you do not treat the thyroid. thus you have a Catch 22. Solution: Treat hypothyroidism SLOWLY 25-50 mcgs of T4 and get on 20 mg of HC. Work until Ft3 and Ft4 levels are balanced. Montior and increase thyroid supplementation as needed until optimal. But after being on Armour thyroid medication for over 10 years, I anticipate always being on thyroid medication. I have recently switched to Nature Throid which is more hypoallergenic since I was reacting to corn ingredient in Armour. I don’t think I fit hyperpituitary picture like giantism as I am a small person. So nourishing the adrenals to resolve hypoadrenals sounds like a good plan.
THis sounds like you have the general idea. GOod luck.