Hyperaldosteronism

This is a common response by over 90% of specialists. Sadly it's Not true! As long as I have breath in my lungs I will advocate for adrenal surgery. I have seen 17 different doctors for my hyperaldustrianism. I have been through hell and back for the last 7 years of my life and a simple 25-minute procedure resolved 98% of my symptoms! I am 15 days post op. I have not had a single blood pressure reading over 130/80 in the last 15 days. Beforehand I commonly had blood pressures in the 200's/100s with many many ER visits. Was taking four different types of hypertension medications. I am now down to one hypertension medicine which has been tapered down to the lowest dose possible, today. My kidney function was Stage 3b kidney failure and today I have been UPGRADED to stage 1 kidney disease. My GFR was 41 but today it is all the way up to 79. I had debilitating muscle cramps every single day I could hardly walk. I felt like I was 100 years old and every cell in my body hurt. I have not had a single cramp since surgery 15 days ago. I had a 2.2cm x 2cm x 2.5cm tumor in my right adrenal gland. I received pathology reports Wednesday which indicated not only did I have one but my adrenal gland was full of aldosterone producing nodules. "It looked like bubble wrap according to my surgeon ". Praise the Lord there was no cancer!! However it did look suspicious so they removed a few of the lymph nodes for biopsy and they came back negative.
Don't give up! There is a lot of new technology and research that continues to develop daily.
There is hope.
Dawn

What great news, Dawn! Being proactive certainly was beneficial.

Dr. Carling gave me my life back!! I will forever be grateful to the entire surgical team. I hope that I NEVER FORGET how horrible I felt. I never want to take this for granted. Everything happens for a reason. Only 2.4% of Americans are ever even tested. 1 in every 7 persons have adrenal issues. Let that sink in a few minutes - Pretty alarming numbers!! 1 in every 7 persons. When I woke up from surgery the first thing I said to the team... YOU CHANGED IT! What a relief it has been to feel human again.
Everything happens for a reason!!
Dawn

They only removed the right adrenal gland, correct? They have me on Spironalactone for the Hyperaldosteronism. With 1 bp pill twice a day and the other pill, I'm feeling much better. But I am going to continue to advocate to have it removed. I'm so tired of having to deal with this high blood pressure and the shakiness when my adrenal gland decides to pump out too many hormones into my system. I had several trips to the ER as well with blood pressure 200/100 and up. Please keep us posted on your progress!

Dawn,
What test confirmed the diagnosis of hyperaldosteronism?

My disease too started out with just one medication and gradually progressed over time. As the disease process continues the symptoms continue to progress then more and more medications are needed. Even though the overwhelming majority of adrenal tumors are benign, many of them cause significant and often dramatic symptoms because they produce excess adrenal hormones. Adrenal tumors that produce hormones ALWAYS NEED TO BE REMOVED because the excess hormones can cause toxic effects to your body, make you feel miserable and cause early death. The adrenal glands produce the deadliest hormones in your entire body. Too much adrenal hormones such as aldosterone, cortisol and catecholamines (adrenaline-type hormones; epinephrine, norepinephrine, and dopamine) can create very toxic effects on the body long term.
Adrenal tumors that make too much hormone are called “functioning” or “endocrine-active” tumors. Aldosterone producing adrenocortical tumors cause primary hyperaldosteronism (also called Conn's Syndrome, whereas cortisol producing adrenocortical tumors cause primary hypercortisolism or Cushing's Syndrome. Catecholamine (epinephrine and adrenaline) producing adrenal tumors cause pheochromocytoma. Any functioning adrenal tumor should be removed by surgery (adrenalectomy). There are other less common adrenal tumors such as those that are sex-hormone-producing, adrenocortical cancer (ACC) and metastasis to the adrenal gland.
I will continue to keep you updated on my progress!!
Thanks
Dawn

@hopeful33250
BASED on my experience and 7 years of research, After performing a very careful interview of the patient to see if they have any signs and symptoms of adrenal hormone excess, the next step is to perform laboratory testing to see if the adrenal tumor is overproducing any hormones. Knowing what hormone is being produced (if any), and how much is critically important. Unfortunately, testing for hormone production from adrenal tumors tends to confuse both patients and physicians--but it shouldn't. The reason is that very few doctors have significant experience with obtaining and interpreting laboratory values when it comes to adrenal hormones. Blood Tests and Urinary Tests are key. The correct laboratory evaluation includes both urinary tests as well as blood tests because some of the adrenal hormones can build up in the blood while others build up in the urine. Mayo Clinic physicians are very well diverse in these tests. There are laboratory tests that are first done to screen for pheochromocytoma, Cushing’s syndrome and primary hyperaldosteronism (Conn’s syndrome). Sometimes these laboratory tests are unequivocal (i.e. the diagnosis is a slam dunk), and the patient can go straight to curative surgery. I had the Mini Back Scope Adrenalectomy (MBSA) is always the preferred operation! It is less invasive and fastest recovery time with minimal bleeding. My surgery was done in 25 minutes from cut to closure! 25 minutes. I couldn't even believe 25 min and I was on my way to renewed hope in life!!
Sometimes, however, these laboratory tests are borderline or difficult to interpret because of interference by medications. Sometimes when the laboratory tests, are borderline they have to be repeated. In addition, there are some confirmatory test that needs to be performed. Testing for sex-hormone excess is also advocated by the European Society of Endocrinology which recommends testing for DHEA-S, androstenedione, 17-hydroxyprogesterone, testosterone for women and estradiol for men and post-menopausal women if there are clinical signs of virilization or suspicion for adrenal cancer.
Remember, if ANY adrenal tumor is producing hormone, OR if it is more than 3-4 cm in diameter, the tumor SHOULD be considered for removal by an experienced adrenal surgeon.
Thanks
Dawn

This is some of the testing. Your doctor will help decide which tests need to be checked based on his evaluation. Here is a good start. Your doctor will narrow down the list based on your symptoms.
Testing for Pheochromocytoma (medulla-arising tumors)
Blood Test: Catecholamines, fractionated, Epinephrine, Norepinephrine, Dopamine,
24h Urine Collection: Metanephrine, Normetanephrine, Metanephrines total, Dopamine,
VMA, Catecholamines, total
Testing for Cushing's & Conn's syndromes, as well as Adrenal Cancer (cortex-arising tumors)
Tests for Cushing's syndrome: A.M. Cortisol, ACTH (low), Low dose dexamethasone test,
Late-night salivary cortisol testing (saliva test)
24h urine collection for UFC = Urinary Free Cortisol
Tests for Conn's syndrome: Potassium (K+; low), Plasma aldosterone concentration (PAC)
Plasma renin activity (PRA; low), PRA/PAC ratio
Adrenal vein sampling (Interventional radiology study) Also known as an AVS - This test is how we found out which adrenal gland was actually over producing the hormones.
24h urine collection for Aldosterone
Tests for Sex-Steroid Hormones and Adrenal Cancer
Testing for Cushing's syndrome and Conn's syndrome as above
DHEAS
17-OH-Progesterone
Androstenedione
Total Testosterone
Free Testosterone
17-Beta-estradiol (serum, only in men and postmenopausal women)
Mayo Clinic specialists are very well educated in this area and can offer a more complete list. But this will help you start the conversations in figuring out where to start.
Hope this helps!
Dawn

My particular tests were both serum blood and urine Aldosterone, Renin, all my catecholamines along with my adrenal vein sampling. These results lead to my CT scan that showed a tumor in my right adrenal gland. But the first two AVS (adrenal vein sampling) was not done correctly so it is important to do your research and ask how experienced your testing facilities are with these tests. My doctors at Mayo Clinic ordered a new AVS which was done correctly that then lead to the correct diagnosis. This delay in improper testing added 2 years of unnecessary suffering until correctly done. The AVS procedure is dangerous if not done correctly. This is a test that requires perfecting timing and medication administration.

Oh my word, that's a lot of tests. I have had the 24 hour urine to check for the pheochromacytoma and several others. I have the low dose dexamethasone test scheduled in a couple of weeks for the cortisol. I would love to get the saliva test done, but the new endo that I went to see, doesn't think it's an issue. I've been at this for almost 2 years. I certainly hope that I don't have to wait another couple to get it fixed. Did you have your testing done at Mayo or where are you located?