Diuretics: Do You Really Need Them?

Welcome to the Harmful eating and how to eliminate it, I’m your host behavioural health and resilience coach Karen Bartle. In today’s episode I’ll be sharing my story of being prescribed Furosemide for a condition that I didn’t have, taking it for far long and how it was possibly a drug induced trigger of my autoimmune disease.

Soon emigrating to live in Queensland Australia, I started to notice that my right foot and ankle were noticeably swollen and uncomfortable a lot of the time. Queensland is a sub-tropical climate with warm summers and mild winters and over 300 days of sunshine a year. So, as you can imagine it was no accident that we chose to live here!

I became conscious of my right leg when I was in front of students teaching and felt a need to do my best to wear closed shoes and trousers to hide it so as not detract students away from the teaching. This was okay since we did have to have aircon on in the rooms anyway as it was typically pretty warm otherwise so this wasn’t unusual to cover up in training venues.

I got to the point though where I felt I needed to go and get it checked out, perhaps there was something wrong especially since it was only happening in my right leg.

This wasn’t something new however, I remember first being aware of it when I was 12 or 13 and living in the UK, and I had gone with my friend to help her babysit a friend of the families child while the mother went to work. I remember I was wearing open shoes at the time as it was a lovely summer’s day and sitting down on the sofa and stretching out my legs. The mother was ready to leave and commented on how swollen my ankle was. “Are you pregnant or something” she said.

As a 12- or 13-year-old as you can imagine I had no clue how to reply to that! I just smiled politely probably looking very puzzled. “Your ankle is swollen and that happens when you’re pregnant” she said looking and pointing towards my foot.

I had never been asked this question before, nor ever since. And back then I only typically noticed the swelling when I was in the sun or the heat. Most of the year I was under cloud, drizzle, and fully clothed so it was typically a problem for me to seek help for.

So anyway, I went along to my GP 2-3 years into our new life here and asked if he could take a look at it given it’s starting to really bother me a lot of the time. He looked, felt, and prodded it a bit and asked me all the questions you would expect “have you injured it, had a fall, etc”. He couldn’t see anything wrong and sent me for an ultrasound to assess the problem some more.

The ultrasound didn’t reveal anything more than we could already see, so he suggested it might just be water retention which he prescribed a small dose of oral furosemide for.

Furosemide is a loop diuretic medication used to treat edema due to heart failure, liver scarring, or kidney disease. It’s also used for treating of high blood pressure.

I remember first becoming aware of it when I was around 9 or 10 and was being looked after by my nan as my mum was taken critically ill in hospital. It was a traumatic time for me not having mum around and we were visiting her every day to check on her progress.

She had been diagnosed with a  kidney disorder called nephrotic syndrome that causes the body to excrete too much protein in the urine. It’s often caused by damage to small blood vessels in the kidneys that filter waste and excess water from the blood. An underlying health condition usually plays a role. Her symptoms included rapid onset swelling of her eyes, feet, and ankles, foamy urine and weight gain due to excess fluid retention.

Amongst other things, she was prescribed a high dose of furosemide and never really got off them. I knew she hated being reliant on them but was left on them and just kept taking them which made her anxious about drinking too much especially when she was going places where she didn’t know where the toilets were. She was also put on a low salt diet but I’ll save that for another time.

I took mine for a while but the problem was persisting so I went back some weeks later after trialling it on and off when I felt I really needed it to take the swelling away. This time he doubled the dose to trail whether that did anything.

It didn’t, and I never had the same problem as my mum needing to run to the toilet all the time, anxious about not getting there in time, so I guess the problem wasn’t water retention, but I had nothing else to work with so I continued to take it at the higher dose for several months.

I had to go back several times to get a new prescription and was given the same dose to work with. On this one occasion I saw a new GP and when I asked for the repeat, he replied well “are they doing any good? I don’t know I said. Well can’t you just drink less rather than taking the tablets. I was dismayed to hear this, when concerns are high about people dehydrating in QLD due to the high heat and sun exposure. I can’t drink less I said and I don’t think I drink too much anyway and if it was that wouldn’t I have water retention elsewhere? Despite his better judgement of not wanting to prescribe and providing me with his concerns that these shouldn’t be used long term due to causing low blood pressure and kidney damage, he wrote me a script and off I went.

His comments still play on my mind to this day, and at the time, although I wasn’t happy with my leg being the way it was and I had no go to strategy to solve it, I did become mindful of taking furosemide less often until eventually I stopped taking it realising that it wasn’t helping anyway.

I can’t remember exactly how long I had been taken it for but it was raising concerns of my GP’s so probably much longer than I should have. Nothing further happened for a few years and I just coped with it the best I could without taking furosemide.

I started researching again about 2-3 years ago since the summers were getting hotter and more humid and I really needed to find some relief for my leg.  I came across lymphedema which is a swelling caused by a buildup of lymph fluid in the body between the skin and muscle, a blockage basically in the lymph system. Lymph fluid plays a role in your body's ability to fight infection and disease.

I also looked at treatment options and that it could be suppressed using compression garments, including electronic ones. With a new GP practice opening up in the area I took my opportunity to move clinic and see if he could refer me to someone who specialises in lymphedema since no GP had mentioned this to me so far.

My new GP referred me to a physio who specialises in treating lymphedema and she confirmed that this was the most likely diagnosis which furosemide would be useful for!

She fitted me for some compression garments, ordered them and within a week or two I now had a solution to my problem and I could prevent the swelling happening by apply the garment first thing in the morning and applying a second garment called a Comfort Wave which had ridges within the garment to promote softening of tissues. These were total game changers in enabling me to control my symptoms at last.

Just when I thought I had heard the last of Furosemide it came back in my life after being diagnosed with my autoimmune blistering disease mucous membrane pemphigoid. I received my diagnosis after 4 years of suffering symptoms and I needed to know how it had come about. It’s an enigma of a disease and not very many people have heard about it, even most helping professionals.

For weeks I read journals, articles, watch interviews and attended a conference and webinars hosted by the International Pemphigus and Pemphigoid Foundation (IPPF). I tried to learn as much as a I could about my condition since I was receiving serious amounts of immune-suppression therapy and I was told this is a rare, chronic, incurable, so lifelong condition I could be seeing my immunology clinical and my eye doc for every 3 months for the rest of my life! I needed to understand why, what and how this came about.

 Loop diuretics kept being mentioned as a drug induced potential for triggering blistering diseases of the mucous membranes due to their dehydration properties. So potentially all that time I was taking a medication I didn’t need, for a condition I didn’t have, which may have contributed to the onset of another chronic and incurable condition that I may have never had to suffer with!