William, a patient with primary aldosteronism

Meet William

Northumberland, United Kingdom

Diagnosis: Unilateral disease
Years to diagnosis: > 20
Treatment: Adrenalectomy

Before Diagnosis

I started having high BP around 1997/1998. I was on the maximum dose of enalapril with propranolol and bendrofluazide but my BP did not respond. I was checked out by cardiologists and given nifedipine, which was the only medication that lowered my BP. I carried on this way and after some years was also found to have low potassium, which responded to daily Sando K only over many months. On a good day, my systolic pressure would dip below 150. This continued until the end of 2018, when availability of nifedipine caused a change to different generic sources and then amlodipine 10mg. At the same time, I started having episodes of rapid, pounding heartbeat, with severe, unprompted anxiety attacks, brain-fog, weakness, fatigue, muscle cramps, severe head and neck pain and progressive numbness began in my right hand. I became so weak and my heart rate became so volatile that I was barely able to move around the house, spending almost all of my time sitting down. SSRI or SNRI treatment only made the anxiety worse. On one occasion in early 2019, my primary care doctor could not obtain a systolic pressure because his instrument could not go high enough. They juggled my medication but it only seemed to make things worse.


In the Spring of 2019, I had several of these episodes which led to visits to the local emergency hospital. My BP was reaching 211/105 with a heart rate of up 130 beats per minute. A cardiologist at the ambulatory care unit of the emergency hospital suspected PA, tested aldosterone/renin ratio (ARR) and wrote to my primary care doctor, telling him to arrange referral to a rapid access endocrinology service so the ARR test could be done under proper control. I met an endocrinologist in May 2019. He changed my medication and told me he believed that I had PA. I found it extremely difficult to raise my potassium at the same time as weaning off bisoprolol. It took until December 2019 to be ready for my saline suppression test. This turned out to be positive and I received my diagnosis in the first few days of 2020. Immediately after the test, I had to restart a low dose of bisoprolol because of ectopic beats. A CT scan in February 2020 showed an adenoma on my right adrenal gland but the endocrinology clinic then had to close down because of the Covid 19 pandemic. It did not reopen until mid- 2021. When the endocrinologist spoke to me again, he arranged for adrenal venous sampling (AVS) to be scheduled. During the washout for this, I was checked for BP and potassium weekly and eventually given verapamil (2 x 120mg) to replace the amlodipine. AVS took place at the end of July 2021, showing me to be unilateral, with the right adrenal being the culprit. I reverted to amlodipine 10mg after AVS.


In January 2020, I was given spironolactone 50mg. This brought my BP down to about 142/80 in conjunction with amlodipine 10mg and doxazosin. Regular blood tests showed that spironolactone was suppressing my kidney function (I was also experiencing muscle cramps several times daily) so I was switched to eplerenone (2 x 25mg daily). This made a big difference to my BP, around 130/70, and my well-being. This was reinforced when I gained control of my sodium (<1500mg) and potassium (>4700mg) intake. I wish I had done that earlier but it was something I learned from the internet, nobody told me about it in face-to-face meetings with doctors. Following AVS, right adrenalectomy was scheduled for October 2021. On the day of surgery, the procedure was cancelled because the anesthetist was not happy to proceed with my risk factors, especially my weight. The surgeon wanted a further CT scan with contrast this time and the endocrinologist scheduled a dexamethasone suppression test, the result of which was borderline. I lost about 25 pounds and saw the surgeon again. He and my endocrinologist wanted to proceed with surgery without delay, to mitigate.

Since Treatment

It has now been a little over 12 months since my adrenalectomy. Blood testing on the morning after the adrenalectomy indicated a cure and I was discharged 24 hours after surgery. It was not expected that I would be able to stop all BP medication and I was initially told to stop eplerenone, doxazosin and bisoprolol but continue with amlodipine 10mg. After a few weeks, I had to start taking bisoprolol 1.25mg because of ectopic beats. They were not as severe as before surgery but still somewhat unpleasant. In the first 3 months post-surgery, I had occasional days when my BP would rise and I would not feel as well as I had been but my systolic never exceeded 150 and these days gradually ceased to occur. More or less within 36 hours of surgery, my BP dropped to around 125/70 and my potassium was satisfactory. Brain fog lifted and my energy levels began to improve within the first few days. Since then, I have steadily built strength and stamina and I am gradually getting my life back. I was able to reduce my amlodipine to 5mg daily with no impact on my BP. It is an unbelievable feeling to see satisfactory BP readings every time I measure it after years of dreading what the number would be. I have gone from spending my day shuffling between my bed and a chair at the time of diagnosis, to being able to do gardening work plus riding and maintaining a classic motorcycle again after many years. A comment I would make is that it is extremely beneficial to PA patients to keep daily sodium below 1,500mg and potassium above 4,700mg, even though it is not easy to do. It enabled me to mitigate symptoms, regain a bit of physical strength and get the maximum benefit from eplerenone. Eplerenone itself made a remarkable difference to me but the adrenalectomy has been even better. Recovery from the surgery has been relatively easy although it took about three months for my body to settle into the new reality.