Before Diagnosis
I had not experienced any obvious symptoms before being diagnosed with Conn’s. In 2014, at a routine appointment with my GP at age 36 (about 18 months after the birth of my second child), I was found to have high blood pressure, purely “by accident.” The doctor asked me to come back to have it checked again and, on the second visit, it was high again and subsequent tracking of my BP at home revealed it to be consistently high.
Over the course of the subsequent months of investigation, I did notice symptoms that I had previously put down to other things. I felt very fatigued and was experiencing mood swings, irritability, anger and sweating more than usual, but I had put this down to the fact that I had a young baby to look after and that these were perhaps hormonal changes following her birth.
There are many symptoms that I only realize now were probably linked to my having Conn’s, some of which date back to years before my diagnosis (indeed, my endocrinologist believes that the adenoma on my right adrenal could have been growing since my late teens / early adulthood). For example, in my 20’s I suffered from anxiety and was once hospitalized following an apparent panic attack (with no apparent psychological trigger). Without warning, I suffered extreme heart palpitations and arrhythmia, tingling hands and feet and felt like I was having a heart attack. I now know that these symptoms can be caused by low potassium linked to Conn’s but I do not believe I was tested for this at the time and, although my BP was found to be high at the time, it was assumed to simply be caused by psychological factors (although I had no cause to feel stressed or anxious).
In the months preceding my diagnosis, I had also begun to suffer from headaches, constant thirst, frequent urination (particularly at night), dry eyes and a feeling of being hungover/ dizzy. On one occasion, I was bed-bound for a day with the most excruciating headache, nausea and vomiting. I just assumed it was food poisoning, but I now believe it was probably caused by my Conn’s and no doubt brought on by a high salt meal of salted fish that I had had the previous day. I also used to wake up in the night with a choking sensation, gasping for air. I now know this was sleep apnea also caused by PA.
I was surprised that high blood pressure had not been picked up during either of my pregnancies as this is checked at midwife visits, but I have since learned that pregnancy can in fact mask the presence of Conn’s / PA and BP can become normal during pregnancy and then return to being high after the birth.
Diagnosis
Following consistently high BP readings after several weeks of monitoring it at home, my GP referred me to a cardiologist. He checked my heart function with an ECG and then monitored my BP with a 24h blood pressure monitor which confirmed my blood pressure was consistently too high.
As a slim, fit 36 year-old, the cardiologist thought it unlikely to be primary hypertension so he referred me to an endocrinologist (no doubt suspecting Conn’s / PA).
I consulted an endocrinologist privately (as I had private health cover and assumed I would get better care). The endocrinologist ordered various different blood and urine tests (notably Aldosterone-renin ratio and potassium levels). The results showed high aldosterone levels and confirmed it was Conn’s / Primary Aldosteronism. I then had an MRI of both adrenal glands which showed that I had an adenoma (benign tumor) of about 2.5cm on my right adrenal gland. My endocrinologist told me that, given the presence of an adenoma on just one of my adrenal glands and the fact I was a young female, it was highly likely that I was “unilateral” and that it was the right adrenal causing the problem. He told me that I would most likely be able to be cured via right adrenalectomy. He said that before going ahead with adrenalectomy, we should do Adrenal Venous Sampling (AVS), just as a precaution, to be absolutely sure that I was unilateral, as in some cases the other adrenal (even with no adenoma/ growth) can also be over-producing aldosterone, in which case surgery would not help, but he was confident that I would be a candidate for surgery.
I had AVS done privately by a radiographer who clearly had little / no experience of AVS (my endocrinologist explained that not many consultants are trained to do it). The radiographer was visibly very flustered during the procedure and (as I only discovered later) did not know what he was doing and did the procedure incorrectly. He began by telling me that he was going to go in through my neck. I said “I thought you were going to go in through my groin?” (as this was what my endocrinologist had told me). The radiographer left the room, then came back and said to the other medical staff in the room “Change of plan! We are going in through the groin!” He then changed his mind another 2 or 3 times (to the point that it became genuinely farcical), before finally resolving to go in through my neck after all. This was a very unnerving and stressful situation, not helped by the fact that I was offered no sedation and was not informed beforehand that this was how he planned to do the procedure. He inserted the catheter into a vein in my neck, went down through my heart and down to my adrenals. It was uncomfortable but bearable and I simply trusted that he must know what he was doing.
When I went to my follow-up appointment with my endocrinologist to discuss the results, he told me that the AVS results did not confirm his hypothesis that I was unilateral but instead suggested I was bilateral (i.e. both adrenals over-producing aldosterone), was not a candidate for surgery after all and would have to be treated with medication for the rest of my life. It was only 7 years later when I decided to get a second opinion and requested to see a copy of the AVS results myself that I discovered that the AVS had in fact been unsuccessful and they had not managed to catheterize either adrenal gland. This meant that the results were uninterpretable and useless. Instead of informing me of this and having AVS done again correctly, my endocrinologist lied to me (perhaps to hide the negligence of the radiographer he had referred me to?!), telling me that the results suggested I was bilateral and not curable via adrenalectomy after all. I was therefore put on Spironolactone and Amlodipine and simply told to come back once a year for check-ups.
Treatment
Having been told (incorrectly) that I was bilateral, I took Spironolactone and Amlodipine for 7 years. During that time, I experienced unpleasant symptoms and a reduced quality of life. I am not sure whether they were side-effects of the medication or continued symptoms of PA itself. My blood pressure was kept relatively controlled by the meds, but generally still ran a little high (with my diastolic reading often between 90 and 100). I continued to experience fatigue, thirst, frequent urination, mood swings / irritability, dry eyes, dizziness and also experienced brain fog. I often felt low and depressed.
I got so fed up of these symptoms, that I decided to find out more about Conn’s. I found a Facebook group for people suffering from Conn’s / PA and found it to be a mine of information and support that was far more helpful than anything my endocrinologist had ever told me. I posted there about my experience with AVS and was told that it had been done incorrectly. It was also only there that I found out that I should have been on a low sodium diet. My endocrinologist had never mentioned this to me and yet it is vital in the management of Conn’s!
I found links there to the Primary Aldosteronism Foundation where I found the details of a UK endocrinologist specialized in PA. I decided to seek a second opinion from him. I gathered together all my previous test results (which is how I discovered that my earlier AVS had in fact been a write-off, covered up by my endocrinologist) and consulted this specialist privately. He was very sorry to hear about my experience of AVS and said that as a 36 y/o female presenting with adenoma on just one adrenal, he would have proceeded straight to adrenalectomy without even doing AVS if I had consulted him at the time.
Just to be sure, I had AVS done again (correctly this time, by a radiographer experienced in the procedure) and it showed that I was indeed unilateral as first suspected! I was so frustrated to think I had suffered unpleasant symptoms/ side effects of medication for so long when I could in fact have been cured from the outset, but I was pleased to finally be on the right track!
I had laparoscopic right adrenalectomy 8 months ago (aged 42, 7 years after my original diagnosis!) I had it done privately (as my health insurance covered it). The surgeon met with me before and was very sympathetic to my suspicions of the medical profession following my original misdiagnosis and mis-management. The operation went very smoothly. I spent two nights in hospital and it took me a few weeks to recover. I just have 4 small scars on the right side of my abdomen.
Since Treatment
Since the day after the operation, my blood pressure has been perfect on no medication at all and I am now cured! Blood tests show that my aldosterone and potassium levels are now normal. I feel a lot better in myself and many of the symptoms I experienced before diagnosis and whilst on medication have subsided (although not completely – I believe it can take up to a year for hormone levels etc. to fully normalize). I was a little concerned about living with just one adrenal gland but my endocrinologist assures me that we can live perfectly well with just one – and I have not experienced anything to suggest the contrary. I am fit and healthy and go to the gym 3-4 times a week.
I have been told to check my blood pressure every 6 months or so as there is still a possibility that my other adrenal could start over-producing aldosterone too, but it is apparently unlikely.
My journey with PA has taught me that with this condition, you have to be your own advocate. The medical profession is woefully under-educated in relation to Conn’s / PA (I regularly had to explain to doctors, nurses and pharmacists what it was as they had never heard of it!). Even some endocrinologists do not have a good understanding of the condition and its management. Many radiographers have no idea how to do AVS correctly and yet this is key to diagnosis and subsequent treatment. Endocrinologists must ensure they only refer patients for AVS with radiographers experienced in the procedure and if the adrenals are not successfully catheterized, they should inform the patient and give them the option of having it done again.
PA is often referred to as a rare condition but, given the lack of understanding of it amongst medical professionals, it seems likely that it is simply under-diagnosed and people are walking around at risk of heart attack or stroke without even knowing it. My advice to anyone with this condition or suspecting they have it is to join the Conn’s Syndrome / Hyperaldosteronism Support Group Facebook page https://www.facebook.com/groups/652067311558303/?ref=share and to use the resources there and on the Primary Aldosteronism Foundation website to find specialized consultants who understand the condition and know how to diagnose and treat it correctly. Shout if you have to and do not hesitate to seek a second opinion!
