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Anyone have Primary Aldosteronism (Conn syndrome)?
Diabetes & Endocrine System | Last Active: Jan 12 1:12pm | Replies (23)Comment receiving replies
In 2022 I suddenly started having high BP -always had very low BP), fatigue, sense of thirst, frequent urination, all the good stuff. For 2 years, doctors at UCHealth (where I was being treated for breast cancer) claimed it is my anxiety + reaction to therapy. In 2024 a good cardiologist suspected PA, and after all tests I was diagnosed with PA in Feb. 2024. CAT scan found no tumors, and I have postponed AVS until I speak with a nephrologist too. 100mg Spironolactone daily: fixed potassium levels, no high blood pressure, all good with urination etc. My limited experience gives me the impression of most specialists are still in the dark about the disease (so, not comprehensive testing or medical exploration), and insurance companies are happy to oblige. Good luck with your journey, and I wish you the best.
Replies to "In 2022 I suddenly started having high BP -always had very low BP), fatigue, sense of..."
I am trying to decide whether to take spironolactone (12.5 mg) half tablet. The PA in cardiology is considering and/or trying to exclude a diagnosis of primary aldosteronism characterized by low potassium and high sodium.
My test results show normal potassium levels going back 3 years. My sodium levels are already low and have been low or low end of normal for the last three years. Both recent aldosterone readings (8.1 and 14.6) are within the normal range of 4.0-31.0.
But my docs say blood work “does not fully rule out primary aldosteronism as you are plasma renin activity is less than 1 and your plasma aldosterone concentration is greater than 10.” Renin is the one reading out of range… @ 0.5(low normal) and 0.3 (low) in Dec. and Jan.
Were you treated Denver @ CU Health? Did you have a reaction to and side effects from Spironolactone. I'm concerned it may be risky.
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Thank you for your recent message.
Unfortunately in my case diagnosis took over 10 years, despite also seeing
a cardiologist. I think at that time my k levels were normal or else I'd
just finished Sando K.
It would seem I have some form of neuropathy down my right side.
My dose of spironolactone is tiny,at 12.5 my this maintains my k.but later
on in the day( as I take this am)my BP creeps up, especially if I am
stressed.I also take a low dose beta blocker at night.
I am unfortunate to live in the middle of England where there are no Conns
specialists just general endocrinologists mostly specialising in diabetes
and thyroid disease. I am not well enough to travel. I am concerned I have
a slow growing adrenal adenoma that wasn't identified on my previous scans,
maybe 4 years ago now. I am a retired operating theatre nurse so have a
good understanding of my disease.
My GP just treats my symptoms now as says cannot assist me further. I saw
numerous specialists over the years but was accidentally diagnosed by a
brilliant gastroenterologist looking at my causes of bloating and
constipation! It was indeed a traumatic journey getting someone to believe
me. I see there is a book called Misdiagnosed by Miles by Tammie
Robie....her journey with P.A. I've ordered it.
Good luck with your journey, I wish you well.