Hyperaldosteronism

I do have a fatty tumor in my left adrenal gland that is 2.2 cm. The endo said they wouldn't do anything about it until it got between 4 and 6 cm.

Hi and thanks for your kind reply.
I've had lots and lots of tests, my ct scan was clear and repeated ,was still reported as normal first off.
This was done 1st because Drs thought it was a kidney problem initially.
Bp still not altering much, tried 4 different drugs high doses,than after that potassium started dipping.Also was getting extreme thirst( Drs thought diabetes but neg test)palpitations, tiredness,cramps,tingles,digestion problems.Drs then thought I was suffering some mental illness/ attention seeking prescribed antidepressants!!
All tests coming back normal, it was soo frustrating as I knew something was wrong.
Multiple trips to emergency room ,only found low potassium. Discharged on medication for it to start up again once medication finished( sando k potassium supplements)
Dr said "but your potassium is always low its how you are" And "its better too low than too high"
Stupidly,I believed him.
Sent to gastro dr for evaluation of bloated gut. Told him my Xmas nightmare.
Went to see Dr early Dec, potassium again low.He refused to do anything about it,said insignificant. Desperately unwell at Xmas, potassium dropping ,felt terrible,heart rhythm changes,nausea ,all symptoms bad.
Went to emergency room, rushed into resuscitation area,heart in dangerous rhythm, potassium infusion started.Had to stay in for 2 bags intravenous potassium never felt same since.
Told gastro Dr all this,he listened and sent me for blood test( ARR) confirmed Conns disease at last!!
Immediate review by endocrinologist, nothing seen on ct scan but aldosterone levels sky high ,renin undetectable,started meds. But even though all stable now suffering from long term effects of it all, feel as if I'm on the verge of a stroke as so dizzy alot of time. A dreadful journey to diagnosis and not being believed!

Similar here. BP would be normal and 2 hours late sky high. Several er trips to only be told I need more BP meds. Almost 2 years and finally got someone to listen. Since I started on the spironolactone, BP has been good. No spikes and I'm eating a little more salt. I still get the tremors abs heart palpitations sometimes. I am just hoping those eventually go away. I also have hypothyroidism

Thanks
I guess you are in the US where things are done very differently here to UK.
My reply is further down this thread.
Thanks for advice.

Yes, it's awful not to be believed when you have obvious symptoms!
Just had thyroid tested was ok.
I often wonder if I'd have been a man would they have branded me as 'attention seeking" "severe anxiety".

Is traveling to the US for consultation and or treatment an option for you?

I'm afraid not, just not well enough to travel to next city in UK even.

@dawn_giacabazi thank you for stepping in to reply to comments about hyperaldosteronism. You seem to be the alumni mentor expert on this topic. I will be keeping you in my thoughts and prayers as your surgery approaches. God bless you!

Thank you for your response. However I'm definitely no expert just been living the for nightmare for too long. I have read thousands and thousands of articles case studies and seen many doctors. Wednesday, I'm having what's called a Mini Back Scope Adrenalectomy (MBSA). Otherwise know as a Posterior Retroperitoneoscopic Adrenal Operation.
It is unfortnuate that 90% of adrenal surgery is performed by surgeons who do fewer than 4 or 5 adrenal operations per year. They almost always use techniques that are outdated or not the best choice, and the patients suffer because of it.
Thank you for the prayers!!
Dawn

Hi Dawn.
Yes I have been investigated for tumors on adrenals, had 2 ct scans in 2019 and a further 1 last July, all back negative, nothing showing yet my ARR blood test was high for aldosterone and undetectable for renin so treated for adrenal hyperplasia but no evidence of this on scan.! Its very mysterious.
I've been also tested for pheochromocytoma which was also negative.
It makes me question the radiologists competency looking at these scans but surely 3 scans can't be all wrong?
Having severe abdominal pain and shoulder pain along with dizziness on exertion, like I have a vascular insufficiency or blockage somewhere.Painful gut after eating too, a sign of chronic mesenteric ischemia but Dr doesn't agree says IBS but is bad and I do have high pain threshold. I had a # ankle once and managed to walk home on it plus also a # wrist which I thought was a sprain so I know I can tolerate pain! But this abdominal pain is getting worse and I am limiting food because of the pain after.