Liddle Syndrome? Any other ideas?

[Guest guest]

I am new here and desperate for help. Husband discovered high BP 4yrs ago, his

" normal " is about 175/120. Drug resistant, tried many. Renal CT, Echo, Adrenal

CT, etc, etc all seem normal (adrenal CT showed slight enlargement). Many trips

to the ER when BP shoots to 200/130+, responds only to nitro and very short

lived. Endo suspected cushings (ruled out), then PA but aldosterone is

low/normal. Took spiro while awaiting test results, potassium came up to

low/normal but BP didn't move much. Chloride is high, sodium is high end of

normal range, potassium low, cortisol low...waiting for renin results and ACTH

stimulation test being done this week. Saline suppression test " not normal "

according to Endo but I am not sure what the results were. They apparently

ruled out PA. He is now asking a lot of questions about family history and

mentioned possible genetic testing. We are scared. My husband has zero quality

of life....describes the feeling as " thinks he is red lining all of the time " .

Endo started Amaloride (and continued labetalol) 2 days ago. What else can we

do to speed this up so he can start feeling better? Any ideas? If it is

Liddle's, how long for Amaloride to start working? We have a 2yr old daughter

and so we are freaking out about the possibility of a genetic condition. Thanks

so much for any light you can shed!