Diabetes insipidus

Posted by farmgirl @farmgirl, Jul 18, 2022

Has anyone had this for at least 30+ years?

What medicine do you take?

Does the summer heat bother you?

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

@farmgirl I was diagnosed with Diabetes (Type 1) in 1975 at age 18 (47 years ago?). I had a pancreas transplant in 2005 at age 48 (nearly 17 years ago). In 2016 I was diagnosed as Type 2. Currently I use Lantus insulin for basal insulin but I am switching to Tresiba. I use Humalog insulin for bolus insulin and correction. My target blood sugar range is 80 – 140. I do carb counting and have a 1 unit insulin : 10 grams carb ratio for bolus. I have a continuous glucose monitoring (CGM) device, a Dexcom G6. I am trying to transition to an insulin pump. I’m currently considering a Tandem or an Omnipod.
In the past I would notice a trend of change in blood sugar during seasonal changes. It would be somewhat erratic in the spring and fall. This has been my experience. It might not be relevant to what you are asking. I’m not sure what “Diabetes insipidus” is.

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Hello, I am new to Mayo connect. I have had diabetes insipidus for over 20 years now. I am 43 years old and my DI stems from a head injury in a car accident.

I’ve never known anyone else with it, and even the endocrinologists I have seen have never had any other patients with it.

I take desmopressin nasal spray. I used to take the pills, but I’m allergic to milk, and the allergy became more severe as I was taking milk containing pills every day. I would definitely recommend the pills over the spray if possible because the pills allow you to adjust your dose based on what’s happening. The pills come in two different doses and they can be cut in half, where the nasal spray just comes in one dose and one spray is always the same amount of medication.

So it’s made it a lot harder to control since I needed to switch to the nasal spray. There are lots of days when I don’t take the medication since I can’t take a lower dose.

Heat absolutely, positively makes it worse. So that includes not only the weather, but exercise.

Stress and anxiety can also makes it a lot worse. Anything that would cause you to sweat, or anything that changes the hormones in your body is going to make it worse.

Alcohol is a huge no-no with DI. Anything containing caffeine will also make it worse, but you can include coffee and tea if you know how you respond and what you need to balance it out.

Respiratory issues definitely affect DI. So even just allergies acting up can I have a big effect, or any respiratory viruses you get, like a cold or the flu, because these change your fluid balance in your body, which then changes your sodium and potassium balance.

I have found that there’s all kinds of little things that have a little affects, which in and of themselves is not a big deal. But if you get several little things that happen it can be a big deal.

The first few years were particularly hard until we figured out what medication dosage and fluid and electrolyte intake I needed. I was in the hospital many times with life-threateningly low sodium or potassium, because I would drink enough water to deal with the fluid loss but I wasn’t taking in enough electrolytes to balance it out, and my medication dose was actually too high.

So after years of that, and trial and error, I always err on the side of being a little dehydrated all the time because it's a lot easier to manage or treat than dealing with low sodium or potassium.

It took a lot of years of trial and error to figure out how my body responds to things and what I need and response.

I actually used to keep a medical journal where I would write down everything I did and how I felt, and do basically hourly check-in‘s. Those notes made it possible for me to go back and look for patterns and see how I responded as I tried out new ways of dealing with the DI.

Unlike people with diabetes mellitus we can’t check our electrolyte levels to see if our body is in balance, so we just have to guess. And the symptoms of your sodium or potassium being too high or too low are basically the same, so you just have to make an educated guess if you get sick based on your intake and output and what has been happening. Again, why I started keeping a medical journal.

Now I don’t have to think about it very much. I’m just used to it and I’m used to adapting to take care of my body. Which is one reason why I err on the side of being dehydrated all the time, because again, that’s a lot easier to respond to. So if I start to feel sick I know I was always starting out a little dehydrated and that makes it easier to guess what to do.

I actually moved to a part of the country along the west coast where it doesn’t get hot very often. I didn’t do it because of the DI, but it has been a huge huge benefit that now I’m not being exposed to heat like I was. I’m also not being exposed to extreme cold, which can also affect it, so the DI is much easier to manage.

It can be hard sometimes when you’re having problems because even most doctors aren’t familiar with it, not the details. The majority the time I’ve been in the emergency room the doctors have never even known what it was, and if they did, they knew almost nothing about it. So you can’t even reliably get help in an emergency sometimes.

What saved my life, literally, is that the first endocrinologist I was seeing went through that trial and error with me, and read what there is available about it. Then he just wrote up a protocol that he put into my patient chart, so anytime I ended up in emergency room for anything there was basic information there for them.

And he had a rule that no matter why I was in the emergency room or hospital I was always to call him. Because everything affects DI. And it’s something that is so minimally talked about in med school most of the time that doctors don’t realize how much it can be affected. so literally every single time I was in the hospital, because I do have some other health issues, my endocrinologist would come in every single day. Because other medication‘s and other illnesses affect DI.

I would say the best thing you need to do is find a doctor to manage it who is very knowledgeable on the topic. Or at least one who’s willing to become very knowledgeable on the topic. If they have their own lab in their office, like my endocrinologist did, that’s even better, because then if you start having stuff happening you can easily go in for lab work rather than having to go to the emergency room.

Because it’s always easier to make adjustments when things are just little.

And you really need to have some sort of medical alert with you that explains what diabetes insipidus is, because people see the word diabetes and they think that means diabetes mellitus. Even when I go to the endocrinologist most of the time they ask for my meter and to check my blood sugar, even though that’s not why I’m there. So you need to have some thing that explains what it is on you at all times, and in your medical records.

Hopefully things are going well for you and you haven’t had to deal with emergency rooms or hospital visits, but if you have any other chronic conditions you need to be aware of how that affects your DI. And if you’re having trouble feeling like things are going well for you I would definitely recommend some sort of medical log or journal where are you just make notes every day so you can start looking for patterns.

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