My Long Fever Tale. (Way too long, sorry)

Please allow me to share my current experience with a terrible fever, healthcare, and whatever comes to mind. Pardon, I’m going a little stir crazy

For background, I’m a T1D with excellent blood sugar control. My A1c is always below 7 and usually below 6.5. This will matter later.

So last Sunday afternoon I started to feel crummy, and by evening I knew I had a fever. I assumed it was the flu or covid, and went to bed. I did not hardly move on Monday. That was the typical thing: Cold, aches all over, headache, weird dreams, the usual. Monday was the worst day, but the thermometer was without battery so I never got a reading until Tuesday, when I saw 102 (38.9C). I was able to live with Ibuprofen, but not happily.

Wednesday I was still sick, but had figured out that 400mg Ibuprofen every four hours was keeping me around 100. I haven’t mentioned but one week from THAT Wednesday (this coming) I have a really important work trip. So I spoke to the doctor and she said give it one more day and see if it’s wrapping up.

On Thursday I could keep the fever to <99.5 with my 400mg Ibuprofen every 4 hours, but if I let it go then pretty quickly I would rise to at least 101.5 This concerned me for the trip, and also for how long I’d be chomping Ibuprofen

In addition, as is normal with fevers, my blood sugar was out of control. Running in the 300s and taking gallons of insulin to bring down. This gets concerning because you’re sick, you take too much, go to sleep, and you can go really low. I’m more annoyed by this, though, than anything because at least I understand it and know it will resolve once the fever does. But we’re now on day 4 and I don’t think I’ve ever had a 4 day fever in my life.

Something odd is that the first couple days I had the usual chills, joint aches, shivers, etc. Those are gone now. I just get a fever, and that makes me feel hot/cold and tired.

Friday I see the PCP and she’s her usual self. I like her, but I feel like she follows a scrpit and doesn’t listen. I really want to know if a (now) five day fever is concerning, and can I just keep eating Ibuprofen from a PEZ dispenser.

She takes a urine sample and sends me to have blood taken to look for infection. While I’m having the blood drawn she calls me and tells me I must got to the ER NOW! They found ketones in my urine. Well, sure, given the highs, but do you really think I’m in ketoacidosis? I want you to go to the ER.

I thought about not doing it, but I was worried she wouldn’t take the rest of what I was dealing with seriously. I stopped by the house to get some things and pee on a ketostick. Guess what? Negative.

So I went to the ER and told them my doc wanted me to come in because she was concerned that I was in ketoacidosis. Checked in, triaged, all that, and brought into the back. The nurse looked at me and said “You aren’t in KDA” I said “I know. But my doc insisted” Probably worth noting that I went to this ER because they’re in the same system as my PCP and they can see each others notes, results, etc.

But of course, now I wasn’t there for JUST the KDA. I was there for the fever too, and so I figured I might as well make hay. They were much more responsive to my questions and concerns. They did some more comprehensive blood tests for infection and x-rayed my chest. In the end they determined it’s a viral infection of unknown origin, and I just need to wait it out. I’m a little skeptical this is really “We don’t know, we don’t care” They talked about using Ibuprofen through my week long trip, which sounds like they aren’t optimistic that it will resolve by then.

All yesterday and ½ of today I managed to function at about an 8, but suddenly mid-afternoon the temp spiked to 101.5 and I felt pretty crappy. The secret is an extra blast of acetaminophen when that happens.

Anyone ever have anything like this? Any coping suggestions? What’s the longest fever you’ve had? How concerned would you be where I am now? Please. General discussions, suggestions, medical advice, etc welcome. I’m not getting out much.

My gf had a fever that wouldn’t resolve. She’d wake up at 2 am each night to change the sweat soaked towels from the bed. On her third ER visit they tested for Borrelia. They hadn’t tested yet because she was “certain” she’d never had a tick.

When the test came back positive, they started her on doxycycline and she immediately improved.

Just last month a guy I know was battling a fever for days. He asked me why his balls would hurt. I suggested he ask his doctor (embarrassment had stopped him). Turns out he had a bacterial infection of his prostate and epididymis. He’s on antibiotics for at least 6 weeks, with twice weekly rechecks.

You don’t say, but I assume you tested yourself (or got tested) for Covid and ruled that out.

Ah, yes. Sorry. Three at-home negative Covids, one at-hospital, and also a negative flu at hospital.

I wondered about that too. The GP asked if I’d had any interaction with ticks, and I said no, but I do have a 100lb dog with lots of fluffy fur. BUT, I live in a fairly urban area and we rarely see ticks unless we head off to one of the wooded parks, which we haven’t done in quite a while.

When my gf had prolonged fever, I found dozens of covers of Peggy Lee’s song Fever. My gf couldn’t find the humor there, which convinced me she was really ill.

Ah. Those mysterious fevers.

What the medical community doesn’t know about T1D astounds me.

If they’ve checked all the horses, is it time to look for zebras?
If we had Dr.House and an hour long TV drama that’s all about you they might find the culprit.
Alas, we don’t.

I’m afraid you’ll just have to ride it out.
Try very hard to keep your glucose level.
Make sure you have a rescue kit in the house. And someone who knows how to recognize a dangerously low glucose event, and use the kit.

If you’re using the same lot number of insulin all this time I suggest you change vials.

Thanks, but at this point the lows aren’t the issue. I’m going through insulin at 2x (or maybe more) my normal rate, despite not eating much and struggling to stay below 250.

Like I said- I think I’m pretty good at this. But it sure is frustrating.

I understand. Make sure your insulin is good.

A 250 glucose number is no where near good.
Saying that, your diabetes is your diabetes. Not mine or anyone else’s.

Sustained highs are often peppered by dramatic lows. So be careful.

The thing about diabetes is, it can be controlled perfectly for a long time, then it isn’t. Due to no fault of your own. The disease changes.

I would have a kidney study for one thing. That’s at least 3 days in hospital, attended to by a nephrologist. So maybe not something you’re able to do, with work commitments.

All that ibuprofen is probably ok. I would worry about it for myself. Again, that’s me.

I’m worried for you.
I hope you get it figured out soon.

ETA …I don’t know your age or gender but you wouldn’t be menopausal, or Peri- menopausal?

Take Beck’s advice for T1D. She KNOWS. Pay close attention to what she says about checking your kidneys!

And forget the trip. You don’t need to be zonked out in some hotel room, unable to call somebody for help.

Get a battery for your thermometer, record your temp hourly, indicating when you take ibuprofen or Tylenol, and how much. Drink a lot of water.

Feel better soon, and keep checking back with us.


Any updates?

I still have the fever. I’m taking 525mg acetaminophen every 4h and I can function. That actually keeps the temp normal, though if I go off the aceto my fever will stabilize around 100.5

Blood sugars are a little better because I’m getting a handle on how to compensate.

I really have no choice but to go on this trip, so I fly out tomorrow. Too many people counting on me.

I just wish I knew what the hell this is. I have very little appetite.

And I think it’s noteworthy my doc hasn’t called to xheck in.

You’ve got quite the mystery going on. I hope you can get a handle on things asap. It really sounds very annoying and worrying.

Best of luck.

Oh, I should have mentioned I switched to acetaminophen because the Ibuprofen was causing constipation

I would put in a call to your endocrinologist. I assume a T1D using insulin would be seeing endo regularly?

I do. Had my routine about two weeks ago. And I did consider calling him, since he’s the one I like best. But if they are right and this is just some random infection that needs to resolve, what’s he going to do?

When my gf had prolonged fever her doctors were really concerned, including her oncologist (cancer survivor). They did blood cultures early on.

He is gonna call you in to the office. Any long term illness or fever that doesn’t resolve is gonna be considered important to your well-being.

I would not fly. I would call the Endo. You’re not getting well because there’s an ongoing problem. Infections that don’t respond are a very dangerous thing to an insulin dependent diabetic.
Just taking so much fever reducer may be masking something. We get fevers because there are things wrong.
You can’t assume this is going to go away with magic.

Have you looked your feet over really good?
No dental issues?

I don’t assume it will go away with magic. The working theory per the ER is that its a virus that needs to run its course. The ER checked my feet, and no, no dental issues

Believe me, I’d love to stay home. But this isn’t one of those martyr things. I run a small business (not the owner) and we have the most important event of the year coming. Too many are counting on me. They have doctors in Toronto.

I just looked. You’re on at least day 10.

You are inviting disaster.

Well, I’ve said my piece.
Good luck.