Urinary Tract Infections + Type 1 Diabetes: Advice From The Community

It’s my second trip to the hospital in a month. I’ve already missed five days of work. I’ve been poked and prodded so many times that I have no good veins left. I’m already covered in bruises from last time, and I just don’t want to be here again. If you live with type 1 diabetes (T1D), my story might sound familiar already. (Especially if you’re a woman!)

I’m putting on a brave face, but everything inside me is telling me to scream at the top of my lungs. I’m doubled over with back pain, a migraine, a horrible fever, a racing heart and, to top it off, constant low blood sugar. Maybe I don’t want to face it? But I have to.

“You again,” says the emergency department healthcare provider (HCP).

We both know the drill: 

• Fluids
• Intravenous antibiotics
• A nice four-night stay in the Acute Ward

That’s what it’s like to get a urinary tract infection (UTI) while living with T1D. In this guide, I explain how this happened to me and the advice I have for fellow diabetes community members who are in the same boat, including how to manage UTI symptoms and when to seek medical care and support.

How did I get a UTI with T1D?

I’d consider myself a healthy person. I eat a balanced diet, I walk everywhere and my blood sugar levels are even “better than a person not living with type 1 diabetes”—or so I’ve been told by my endocrinologist. I’m hygienic and never had a UTI up until this moment. So to be honest, I couldn’t tell you how I got here.

It’s kind of unfair, but it’s mostly life with T1D. My body plays some mean tricks!

A UTI might typically be something easy to treat, but it can become dangerous for someone with T1D, especially the longer it goes untreated or undetected. It can spread easily through your blood, causing something called urosepsis, and your kidneys can become damaged. UTIs can even trigger a kidney infection.

When you live with T1D, you may be more likely to get certain infections. High blood sugar can also make it harder for your body to fight infections. Learn the signs of illness and speak up for yourself when you need help. 

A recipe for lows: infection clearing with T1D

First of all, everyone’s body is different, even within the type 1 community. So, how we manage our bodies during times of infection or illness is, too. With that in mind, remember that this story is personal, and the advice I share can be valued as general guidelines, not hard-and-fast rules for UTI management with T1D. Always talk to your healthcare provider if you’re going through one to make sure you’re managing it in a way that suits you!

When I had the initial infection, my blood sugar was pretty stable, as long as I ate. But once the infection got a hold of me, I was on antibiotics and barely eating, yet I kept taking my normal insulin dose. That mismatch made my blood sugar spiral down. And boy, was that upsetting and dangerous in a completely different way.

I’d wake up sitting at 2.3 mmol/L (41 mg/dL), sometimes even 1.8 mmol/L (32 mg/dL), in the middle of the night. This is severe low blood sugar (hypoglycemia). I’d be tired and grumpy, and the last thing I wanted to do at 2 a.m. was down some glucose tablets and a cheese sandwich. It was miserable! I probably should’ve taken glucagon, to be honest. That didn’t even cross my mind with everything else going on.

Eventually, I was even taken off insulin for a few days with close monitoring—which isn’t something you should ever do on your own—until my blood sugar began to rise again.

The mental toll of sick days with diabetes

Maybe worse than the physical symptoms I experienced was the mental toll. I’m an employee, a daughter and a best friend. I’m a people pleaser, and I hate letting people down. Unfortunately, it’s hard not to feel like you are or that you’re weak in front of the people around you when you’re in the hospital. That’s how I felt.

People are counting on you, even when your diabetes is screaming at you to put it first. It’s hard to balance it all! But sometimes you need to start counting on others so you can get better. 

Self-care is so important, especially in situations where you feel out of control. I’m so lucky to have a boss who’s understanding, a workplace that cares and friends and family who would jump through hoops to make me feel better. 

My advice for anyone going through something similar? Lean on your people. Remember, that’s what they’re there for. They want to help! Don’t be afraid to be “weak.” In the long run, it’ll help you recover faster. (You’re not weak, you’re just going through a hard time.) 

These are important things to remember.

Signs of a urinary tract infection

The signs of a UTI are worth knowing well when you live with T1D. They are the same in people without diabetes. 

Common UTI symptoms include:

• A strong and persistent urge to urinate
• A burning feeling when you urinate
• Passing small amounts of urine frequently
• Blood in the urine
• Cloudy urine

Catching an infection early makes a real difference. Even if you’re feeling slightly off, head to your HCP right away instead of waiting it out. Peace of mind matters! Rule it out, at least.

What to do if you have a UTI with T1D

Knowing the signs of a UTI and leaning on your people if you have one are both super important steps. 

OTC products like AZO Urinary Pain Relief may ease burning and pain, but they don’t treat the infection. At-home UTI tests can help identify signs of infection, but they can’t rule one out. If you can’t reach your HCP right away, schedule a telehealth visit. Or go to urgent care for fever, chills, back pain or vomiting.

Here are some others you should consider if you find yourself going through what I have:

• Communication with your HCP: tell them about all your symptoms, even the ones that feel embarrassing or “small.” Try to explain how you manage your diabetes as clearly as you can. If they prescribe something that doesn’t seem right, like an insulin dose that feels off, speak up about your concerns. You may see a primary care provider (PCP) to treat your UTI, but should always consult your endocrinologist (who specializes in diabetes) alongside them.
• Manage your medications in favor of your long-term health: if you go on antibiotics, ask about taking probiotics too, since they help balance out the good and bad bacteria in your gut.
• Get proactive about UTIs: Stay hydrated by drinking water regularly, unless your HCP has told you to limit fluids. If you are prone to UTIs, cranberry tablets might help, along with sugar-free 100% cranberry juice. Just steer clear of the concentrate version, since it doesn’t contain enough actual cranberry to make a difference. Remember, if you already have a UTI, it’s too late to be proactive. You need medical intervention! Proactivity should happen before a UTI does.
• Evaluate your sexual health: if you have a UTI, it’s also worth getting tested for sexually transmitted infections. See your gynecologist for testing. If it’s been a while, schedule a pap smear too. Might as well! The fewer HCP visits with T1D, the better—right?

Remember: you know your body best

Trust your gut! If something doesn’t feel right, it usually isn’t. People with T1D are hyper-aware and attuned with their bodies. Trust your spidey senses when they’re tingling (so to speak).

Most importantly, accept help when it’s offered. You don’t have to get through this on your own. Lean on your friends and family. They want to help you navigate life with T1D through all of its ups and downs! 

You’re not a burden. You’re a human managing an incredibly difficult and often challenging condition with grace. You make it look easy even when it’s not.

T1D can be challenging and unpredictable, but support shouldn’t be. Connect with a community that understands what it’s like to live with this. Find your people in our Community Apps.