Before Diagnosis
Living with undiagnosed health issues can be an incredibly challenging and frustrating experience. In my case, the journey began at the age of 17 when I developed hypertension that proved resistant to conventional treatment. What followed was a rollercoaster ride of doctors, tests, and misdiagnoses, leading to years of physical and emotional turmoil. This write-up chronicles my two-decade-long health journey, filled with uncertainties, setbacks, and ultimately, a long-awaited diagnosis.
In the early stages, my blood pressure soared uncontrollably, despite being on multiple medications. Debilitating headaches, frequent nosebleeds, and asthmatic-like attacks compounded my health struggles. Specialists from various fields conducted countless tests and procedures, leaving no stone unturned. From renal artery stenosis to an angiography and allergies, each doctor had a different theory. It caused paranoia even amongst my parents, who were tracking my every action, and even weird attributions like candle smoke at a birthday party or dog hair. To add to it, absurd rumors circulated, some attributing a teenager’s night of fun to alcoholism, which were the most difficult to deal with. These were people who did not know me or had no idea about what I was going through. This was hard to deal with in isolation, leave aside having to explain myself to my parents.
Anxiety became the easy scapegoat, leading some doctors to dismiss my symptoms when they could not explain them. I soon felt like my parents also started believing in the doctor’s stories, attributing my illness to anxiety; fatigue had set in, they had tried more than their best for over two years, and they didn’t want to put me through the rigor of more tests, and/or just didn’t know what further to pursue. Amidst it all, I managed to pursue my studies, changing my undergraduate engineering course to accommodate my health limitations, and achieving academic success in my undergraduate degree in Economics, Maths & Statistics. Thereafter, I pursued my postgraduate degree in Economics from the University of Warwick in the UK. There too, I ran into health trouble and did the rounds of NHS doctors who frustratingly would try finding answers by way of a google search. I had to get a grant to postpone my exams to a time I was better. Eventually, I scored well, but returned back to India. The global recession added to that too.
I relocated to Mumbai in 2010 for work. I got married in 2013. The health issues were off and on. But, resurfaced with a vengeance by 2015. Endless hospitalizations, bewildering tests, and misdiagnoses in search for various ‘zebras’ became a recurring pattern. Carcinoid syndrome (a kind of tumour), Vasculitis (a severe autoimmune condition), Acute Kidney Injury (temporary kidney failure), and many more were thrown into the mix, triggering a barrage of treatments, including long-term courses of potent steroids. My life revolved around appointments, blood tests, and a baffling array of medications.
Alongside the constant struggle against this condition, I’ve had to face the relentless fight with weight gain. It feels like an uphill journey that never ends. Whenever I manage to shed the extra pounds, they always find a way to creep back into my life. It’s beyond frustrating. These fluctuations in weight have had a significant impact on my self-confidence and social life. Despite having a supportive group of friends, in the early years it was challenging and uncomfortable for me to navigate the complexities while trying to keep up with social pressures of college life. Later, I found myself witnessing my friends and colleagues’ successful career advancements while I had to take a step back as these disruptions compelled me to move to a work from home arrangement early on, long before the pandemic, hindering the professional growth I had envisioned for myself. Yet, amidst the challenges, I discovered my passion for investing, and eventually quit my job, carving out a lucrative, alternative career path, while also helping my wife build and scale her business.
Diagnosis
By 2018-2020, I had reached a breaking point, losing all hope and feeling utterly defeated. However, my unwavering support system, particularly my wife, refused to give up on me. Determined to find answers, we delved into my plethora of old medical records and put together a 4-page, easy to share, medical history. It was during this period that a fortuitous encounter led me to an online consultation with the Cleveland Clinic in the United States. During the consult, the doctor mentioned a condition called Primary Aldosteronism in passing, which sparked a glimmer of hope and set me on a new pursuit for answers.
Most doctors had dismissed Primary Aldosteronism due to a seemingly normal CT scan of my adrenal glands (small triangular shaped gland sitting on top of both kidneys). However, digging through my extensive medical records, I stumbled upon the marker test from 2015 (aldosterone / renin) that had been misinterpreted to be normal, given lack of knowledge of the condition even amongst most doctors. Armed with newfound knowledge, I sought out an endocrinologist, the one specialty I hadn’t explored in my two-decade-long journey. Finally, a compassionate doctor in Pune confirmed the condition, but recommended seeking the expertise of the endocrinology team at the Christian Medical College in Vellore (a small town in South India — a 2-hour-flight from Mumbai followed by a 3.5-hour-drive), who excelled with the condition, for definitive diagnosis and treatment.
In April 2021, I sought an appointment with the head of endocrinology at Christian Medical College. The entire team reviewed my records, repeated tests, and confirmed the diagnosis of Primary Aldosteronism. Finally, after two long decades, I had a concrete starting point, and the assurance that I wasn’t imagining my symptoms or battling a mental health condition. There was a single condition that explained all the symptoms — the onset of resistant hypertension in my teens, the headaches, the muscle weakness, the nosebleeds and yes, also, the weight gain.
Treatment
Treatment began with high doses of a mineralocorticoid receptor antagonist called spironolactone (a medicine which was never developed to treat this condition, but was found to be accidently beneficial, and with many side effects, especially for men), providing some relief to the long-standing blood pressure. However, the road to recovery remains complex, with the possibility of an invasive procedure called Adrenal Venous Sampling (AVS – hormone sampling from the adrenal vein) and subsequent Adrenalectomy (removal of an adrenal gland) on the horizon. Given the logistical difficulties of travelling to Vellore, I am now under the care of the proficient Endocrinology team at King Edward Memorial (KEM) Hospital in Mumbai. The doctors are trying to push for Adrenal Venous Sampling (AVS) to provide sub-typing of PA – weaning off Spironolactone and adding Verapamil. However, BP is remaining uncontrolled (140-150/100-115) and potassium has fallen to 3.2 with persistent tachycardia. Given the symptoms and uncontrolled BP on high dosage of multiple drugs, they have now advised for a Pentixafor scan (CXCR4) which is yet to be undertaken.
Since Treatment
I recently discovered solace and camaraderie within a patient-run self-help Facebook group that is spreading awareness of this paradoxically not-so-rare yet rarely diagnosed condition. Hearing the stories of others who had endured similar struggles brought comfort, reinforcing the knowledge that I wasn’t alone. Together, we shared experiences that went beyond medical textbooks, providing invaluable support and understanding. I also discovered the website of the Primary Aldosteronism Foundation. It is an encyclopedia of information for anyone who suffers from the condition. The information is far more comprehensive than what most doctors or online articles provide, ensuring that you have access to the most detailed and accurate information available.
My health journey, though arduous, has taught me resilience, empathy, and the importance of never giving up. If you or someone you know is going through a similar experience, remember that there is hope. Reach out, seek the right specialists, and trust your instincts.
My twenty-year health journey has been marked by twists, turns, and countless obstacles. From the perplexing symptoms and misdiagnoses to the long-awaited diagnosis of Primary Aldosteronism, I have weathered the storm. While the battle continues, armed with newfound knowledge and a supportive community, I face the future with renewed strength and determination. May my story serve as a beacon of hope to those who find themselves trapped in a medical maze, reminding them that they are not alone, and that answers and resolution are within reach.
