Any T1D here also have adrenal insufficiency and remember their T1D symptoms at onset

I’m exploring for myself possible maybe explanations for a difficulty I’ve been having since December, since my actual endo is kind of making a huge point of refusing to help me get to the source of a problem.

Anyone here with T1D already who later was diagnosed with adrenal insufficiency?

I’m wondering what your symptoms were when you first started noticing that things were wrong. Was onset complete and all at once, or did you body sort of edge into it slowly?

Alternatively, if you have adrenal insufficiency , are your Dawn Phenomenons weird? or just nonexistent? What happens?

Thanks. There’s other possibilities, it might be because I’m at a nexus of chronic hyponatremia (blood sodium never above 128), blood pressure medication, and T1D and who knows what maybe else. I’m just trying to gather data points to compare to, here…

THANKS.

Hi @theNoz . I know you’ve been on the forum for a while and are experienced with Type 1 so forgive me for asking the obvious, but do you have any alternatives to your current endo, or are you stuck with them? I would hope you could find someone willing to work with you, but I’m in the DMV where choices abound and I know it’s not that way for everyone.
I hope you get some helpful responses (I’m sorry this isn’t one).

Thank for bringing the topic to discussion. My daughter is actually being tested for this and we have an appointment for blood work in a couple weeks.
Her symptoms started with dizziness a couple times a day and fatigue and then after a change in our primary doctor they took her blood pressure in different positions and said that she may have PODS after a trip to the cardioligist who suggest salt intake and exercise and to check back we then saw her endo who is now having her blood checked. So I cant wait to hear what others have to say. I guess if the test show the deficiencies then she would be diagnosed with Addisons disease. Hope things get better for you as well!

I only hope it pays off, #bitfamily.

A friend and neighbor with Addison’s was in the Diabetes Control and Complications Trial partly because of it - I assume they wanted some subjects with other endocrine conditions among other things, although of course he “didn’t know” whether he was a control subject or not. To my shame now, I never asked him a thing about his history with it, and what figuring out he had Addison’s was like.

I’ve been banging my head on a wall to remember his last name. Dave once from Arlington, are you out there!?

Thanks, @wadawabbit - My endo’s outfit has a “large” number of endos (considering the area). It turns out my endo is an Internist, but is called an Endocrinologist, but Internal Medicine types are rated lower than the actual Endocrinologists on their list and everywhere as far as I can tell. I don’t get that, do you understand? I also know that she’s listed near the bottom of the list, and it’s not alphabetical.

The only other collective of endos in the area numbers 3 doctors, and they’re at the hospital that “nobody goes to” around here. (It’s full.) Hey, I’m from away, I’m just reading the lay of the land, far be it from me to understand why one hospital became the Snob Hospital that everyone (doctors included) wants to go to, and the other became the Other Side of the Tracks Hospital that has less -well-off-looking people in the waiting room.

In any case, I can’t see one of the higher-flight endos at my outfit without a referral - and a diagnosis, I am told sternly by the appointment-making staff, even though I already see Dr. ___ there. I’m looking for a diagnosis. So I’m reading up on all sorts of things to test for that my PCP could run that might be appropriate. Cortisone levels are certainly going to be one. But from those results, maybe my doctor can write a referral to have me see a different endo.

----[read on only if you dare]----

Testing…

Adrenal levels. Since December, I’m having sudden, extremely-rapid-onset DKAs, random except that they’re ONLY between 6 AM and 7 AM. BG starts going up at the same time always, 4 AM, and rises slowly until taking a steep step up at 6.

I’ve often reached the throwing-up and ketones climbing fast stage when my blood sugar (finger sticks for immediacy) is still between 160 and 220 at 6:20, 5:20 in Standard Time - before BG is high enough to justify a diagnosis of diabetes-only DKA.

Most mornings, my BG is still going down very slightly or level, depending on activities the day before. But during these episodes, BGs will be topping 250 by 6:30, and reaching 300 - if untreated - any time before 7:00. This is VERY fast. (And it’s always when my brain is normally not the least bit functional (grumble).)

If I ask for a bolus, I see the result right away, and the insulin reacts at about same effectivity as normal (given that I’m fighting to reverse a parabolic skyscrapering of my BGs). A bolus of 1 unit over recommended (by Dash) very early on can almost practically abort one of these. My BGs might not even get over 220 - but I still have Moderate ketones by about 6:45 AM. But MY PUMP IS WORKING. This is not a pump failure, although I will need more boluses in about an hour or so and when I am physically capable, I will change the pod as a precaution.

But the graph of my BGs exactly mirrors the graph of cortisol in the “Normal Diurnal Rhythm” graph at Understanding Cortisol | Cortisol Matters, which kind of takes the air out of any concern for my cortisol levels. The whole episode just feels like my Dawn Phenomenon - occasionally - has gone ballistically out of control. (Dawn Phenomenon on steroids? nm, inside joke.)

But “adrenal fatigue” can cause low BPs at rest, which I’m having only the mornings of these episodes… Bears ruling out. Let’s look at adrenal levels.

And Blood pressure - I finally realized that my BP, blood pressure, is dropping extremely low during these episodes, so theoretically I’m now measuring BP when I wake myself up around 5:50 (UGH). But low BP is contributing. Still. Getting fluids has helped dramatically the few times I got it. And I hadn’t put together, but I’ve been reading how extreme and/or sudden hypotension causes / exacerbates hyponatremia.

But when BP drops, BGs can rise (the “catecholamine response”). If maybe a slight sign of adrenal fatigue is making my BP lower and both together making BG rise… but that fast??? and only occasionally? (This is the round-and-round-in-circles phase of my trying to understand.)

Sodium. I already have Hyponatremia. Normal blood sodium minimum is 135, but normally my blood sodium is 125-128, and has been measured at 121 back when I used to drink the recommended 8 cups of fluids/day (8 years ago). Now I drink about 54 oz/day, and have made so many changes to lifestyle / diet / meds, etc, all for naught. Nephrologist says oops I forgot - amygdala? - has decided for itself what my sodium level should be - it happens, apparently - and it’s acting beyond correcting. Even taking sodium tablets for a while didn’t seem to shake its certainty.

Anyway, sodium levels can play a part in all this chemist’s lab combination of things going on. Bears looking at. I need 6 AM tests, preferably on a morning when I’m sure this is going to happen hahahahahaha…

And no more soup for me.

We also need to take a closer look for any signs of background infections. I’ve had a few incidences of those, and they can cause DKAs. But - since December?? nahhhh… (Did you know about “the 7 I’s of causes of DKAs”? I didn’t.)

I have so many web pages open of things to learn more about because they have implications for the nexus of adrenal hormones, diabetes, dawn / dawn phenomenon, blood sodium, and more.

So far nothing screams out at me, so it’s not entirely implausible that my internist can’t help me. BOY her beside manner leaves a lot to be desired, though! HONEST to GOD, to say to a patient in her office “I can’t help you,” with an air of finality, then literally turn her back on me and indicate that any conversation is ended, with me in tears - yeah, she’s toast, in my personal medical cadre.

Geez. I’ve tried to write about this here so many times. This is the shortest version I’ve managed so far. :frowning: SORRY!

I was looking at Urinometers, what the heck, and then - Ohhhhhhhhh and now I’m having Gizmo Envy. CONTEC BC401BT Handheld Urine Analyzer 11-parameter 600pcs test Strip,. Doesn’t actually give me what I want - Sodium - but look at all those results all at once! Ketones and Uric Acid and Creatinine and Microalbumin included.

Maybe a Christmas present. (my eyeballs are rolling big-time)

Hi @theNoz and thank you for sharing. I apologize for making you write about them yet again. Some time ago a forum user posted that she felt I’ll if her blood sugar was over 100 - that may not be the exact number but it was way in the healthy normal level. I really felt for her - that can be a huge standard to maintain! The only thing I can comment on from what you describe is blood pressure. This may not apply to you but a couple of years ago I was diagnosed with orthostatic hypertension - a fancy mouthful that means by BP drops suddenly if I stand up too fast. I’ve never checked my numbers during or after, as I was trying to keep myself from falling over. Treatment? For me at least - avoidance: don’t get up too fast (duh!). I don’t know if that helps you any.
As far as Internist vs Endo, I believe Endo is a subset of internal medicine, specializing in the endocrine glands. I was always advised to find an endo board certified in diabetes management and and in Type1. As for your “doctor” - note the air quotes - I would report her.
Speaking of infections - one thing I found when my BGs were unexplainedly or of whack - I needed to see my dentist. I often had a small toothache which was the start of trouble. No BG issues at first but having a fear of dentists I ignored it until I couldn’t any longer - by which point my numbers were rising and I needed a root canal. You might see your dentist to make sure there’s nothing like that going on.
Wish I could be more help, and I do hope you get some input here - and find a new “endo.” Also, maybe you could switch your PCP? I’m all for working with my physician but if I have to tell them what to order that’s a problem. And on that note - if it’s plausible for you - you might look into boutique or concierge medicine: you have to pay out of pocket but you have greater access to a physician who will take the time to detrimental what is going on and what you need. Here’s a description I pulled from Forbes dot com (sorry, links are discouraged) on the topic:

The concierge medicine model, on the other hand, is more about the patient experience. Physicians who participate in concierge or direct primary care typically have a patient panel of no more than 600 people. They see six to 10 patients a day and spend at least 30 minutes with each of them. Patients can get same-day or next-day appointments, access advanced tests and screenings more easily, and spend the time it takes to discuss results and develop a personalized care plan with their doctor.

It might be a good starting point for you to find a diagnosis.
Wishing you all the best!

Thanks, Dory. I missed the post from the patient who already feels bad over 100 or whatever it was. Sounds nightmarish! That’ll teach me not to complain!!!

Re: orthostatic hypertension, I have family members with that. It’s easy to forget if the patient is really good at learning right away to just get up slowly always. These days I get up slowly, too, but it’s only the back pain!

Re: dentist, I agree, always a concern for a diabetic. I missed my scheduled 6-month in April because my back wasn’t ready yet to lie in that chair for as long as needed. I made another appointment for as soon as possible - ugh, September (she’s a great dentist) - and have been on a wait list ever since, but so far haven’t been contacted. And my sympathies on the root canal! Only ever needed one, 25 years ago, and I hope it’s the last one of my life! Although that dentist was wonderful, he was, if I remember, a Japanese man who grew up in mostly Brazil but also Japan, but going to boarding school in England and I forget the 4th country, and he spoke so many languages it was really intimidating. An Arabic country came in there somewhere. I aske him to tell me about it during the root canal, and it really helped!

Anyway.

Last night I had a big insight on my problem. I remembered that I used to have, when I owned my house with 12 acres and was a lot better about taking my blood pressures, that I would have days just a few times a year when my morning BP would be far lower than usual. Later, after selling the house, when we were trying to raise my BP meds, it cropped up again because the generally improved BP would mean that every so often I would have a morning with a BP of only 90-something over 50-something, or something like that. It occurred to me to wonder, these DKAs I’m having that are sometimes weeks or months apart, have been happening ever since I got put on a night dose of Losartan… I am switching (with PCP approval) the Losartan to before 6 PM anyway, but I wonder if I’ve found my culprit in the random DKAs??? Hypotension => hyponatremia and each by itself can => hyperglycemia, so together? Time will tell, I guess.

Hope is such a funny thing.

Hope is wonderful, and I hope your insight comes to fruition and you’ve discovered the culprit - keep us posted!
Funny thing about root canals (I’ve had several and I joke I paid for my dentist’s Porsche - although I don’t know that he drives one): it was a root canal that eased my fear of the dentist! I had been at this particular practice for a while when I got my first one, and choose them because their motto was “We cater to cowards.” They used (use) nitrous oxide which helps tremendously although sn’t convinced it would get me through a root canal. I put on the mask, closed my eyes, opened my mouth and let the dentist do his thing, anticipating the pain I had heard so much about. I was so relaxed I had no idea how much time has passed so I asked when he was going to start - and was shocked when he said he was nearly done! It took a few more RCs for me to learn to address dental pain promptly🤪.
When open enrollment rolls around I hope you can find a plan with a better provide!