When the desmopressin shortage was first announced in February 2025, many of us who rely on it thought it would be a short-term problem. The guidance at the time suggested that supply would return to normal by September 2025. Unfortunately, as we move further into autumn, the shortage is still ongoing — and for people like me, that has meant months of difficult, exhausting days.
My endocrinologist at the hospital blames much of this on the UK's departure from the EU.
What does desmopressin do?
Desmopressin is a synthetic form of the hormone vasopressin that helps the body regulate water balance. For those of us whose pituitary glands can no longer produce enough of this hormone — a condition known as diabetes insipidus (DI) — desmopressin is essential. Without it, the kidneys release far too much water, leading to excessive urination, extreme thirst, and dangerous imbalances in sodium levels.
Life during the shortage
Since the shortage began, I’ve been forced to manage without proper working desmopressin on many days. The effects are severe and immediate. I often find myself going to the toilet 15 to 25 times a day, losing litres of water in the process. Without the hormone to regulate water balance, hypernatraemia — dangerously high sodium levels — sets in quickly. The dehydration it causes is extreme and frightening, and it can lead to confusion, headaches, fatigue, seizures and in severe cases, hospitalisation.
Each day feels like a balancing act between drinking enough to stay alive and not overloading my body with water it can’t retain. Simple tasks become difficult. Concentrating at work, teaching lessons, or even sleeping through the night all become daily challenges.
This week was a real challenge, more than any other. My body will not accept the desmopressin tablets at all. They last less than 3 hours before I'm desperately in need of the toilet.
The emotional impact of this
Physically, diabetes insipidus without desmopressin is punishing — but the emotional side is just as hard. It’s frustrating to know that a treatment exists—one that works perfectly—but is simply unavailable. Living through months of uncertainty takes a toll on mental health, too. Each pharmacy visit feels like a roll of the dice, and the lack of updates about when the medication will return only adds to the anxiety.
Why this matters
People living with DI are a small group — the condition is classed as rare — and that can make it easy for shortages like this to fly under the radar. But desmopressin is not optional. It’s a lifesaving medication, just as vital as insulin for diabetics or thyroxine for those with hypothyroidism.
My job has become really challenging because of the constant fatigue I'm experiencing. Not only that, my concentration and ability to do my job have been hindered by this lack of medication.
I hope that by writing about what this shortage really means, I can raise awareness of how critical desmopressin is and why a reliable supply matters deeply to those of us who depend on it.
Hoping for stability
I'm now clinging on to what I can. Life is really tough without my spray, and I'm at my lowest point in my life since cancer in 2010 (I don't mean I'm depressed, as I'm not, I just mean that lack of energy and my problems with my cognition and getting dizzy and confused are having a significant impact on me right now).
I've been trying alternatives such as tablets and melts, but neither of them have been effective. Even today, after taking a tablet at 10 am, I've been to the toilet a whopping 22 times—that is absolutely crazy.
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