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Adrenal Insufficiency Community
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Avatar universal

Need help - possible Adrenal Insufficiency

I need some help. :(
I seem to have all the symptoms of adrenal insufficiency but tests dont seem to reflect that. I have nausea, headaches, flank pain that radiates down my thighs and also up my back and seem to come in episodic moments at times...notice it more in luteal phase of my cycle. I get episodes of bone crushing fatigue, chest pain pre-syncope, and brain fog. Also my hands and feet get icy cold. I also went to the hospital several times with extreme abdominal pain and lower back/flank pain and extreme hunger (almost seemed like an adrenal crisus.)
My morning cortisol though I was told was normal.
I also did a dexamethasone suppression test and my cortisol didnt suppress to a very low value, but I am not overweight and am losing weight. I get these piercing low back pains and it feels like Im going to drop dead. Im scared because Im not getting proper help.
I also have an adrenal adenoma on my gland that is 2.3cm x 2.2cm and no one seems concerned about that.
4 Responses
Avatar universal
COMMUNITY LEADER
Find another doctor. Get copies of your tests and all, and find a pituitary center (larger hospital or university will be best bet) and get in there.
Avatar universal
Thanks for your response. I just had another 24 hr urine cortisol test and it is elevated. Thats now 2 elevated ones Ive had and a dex test that did not suppress cortisol to low value. But the endo said, well you dont look like you have cushings and she just dismissed all my other symptoms! An MRI of brain was all clear....I just have an adrenal mass that has grown since last year. Last year it was 2.0 cm and now its 2.3 cm... she apparenrly didnt care about that either! I guess all my flank pain and lower back pain and the tons of other symptoms I have are all in my head!!! I contacted the endocrine surgeon I saw back in the summer and left a message with the secretary about mt recent test results. I have to wait to hear back from her. I dont know what else to... I can barely function and Im afraid to move as the flank pain gets worse or I feel like passing out. God help me. :(  
1 Comments
I'm just starting my own digging into all this because I'm now becoming symptomatic.  I had my right adrenal gland removed in 2005 after I had a baby the previous July. I had grown a cyst on my adrenal gland that grew to 6 x 18 cm.  Doctor said it was like having a pop bottle stuck in there.  I got "passed around" by so many who said that cysts don't cause pain, and they couldn't see the entire thing!  Turns out it was pressing against my liver!  Still don't know what caused it. Mayo Clinic diagnosed it but did wrong treatment, which is why I wound up losing my adrenal gland.  The place that saved me?  The Cleveland Clinic Urology Department, and they said they'd seen that type of thing before, even though mine was found in 0.0016% of the population.  I don't know where you live, but at the time, I was looking at Cleveland Clinic, Johns Hopkins in Baltimore, and Barnes-Jewish Hospital in St. Louis.  Don't listen to the ones who say it's nothing.  When I delivered my son a month early, I was on enough pain meds for an end-stage cancer patient!  All because no one would listen to what I was telling them and were too cocky to admit they didn't know either!
Avatar universal
Hi there. Have you had any tests regarding the Mass? Its strange. This could be causing lots of issues? Surely you have had blood work done to see if its active?
There is a doc in the uk who specialises in that field of Adrenal Adonomata. You may need adrenal vein sampling done, this is the gold standard test for evaluating the adrenals. Docs dont like doing the test, its akward, invasive and tricky.

The uk doc is prof morris brown. It could be worth looking at some of his many papers. Have you any BP issues?

I have BP thats very high at times and am suspected of having small adonomata. The only thing that gets my BP down is Spiro med . ita a steroid type drug used to treat adrenal; issues. I hate it.
keep us posted
Avatar universal
Those are the tests I did to find out if its active, dexamethasone and 24 hr urine cortisol tests, and I spoke to another doctor about my results and he believes its active.
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