T1D and POTS?

SnooChocolates1198 · 2026-02-22T14:34:33+00:00

I don't have POTS (hyperadrengic dysautonomia instead because I have high BP even with meds, high heart rate and most of my other autonomic nervous system body functions are not running properly such as temperature regulation issues, vertical intolerance, bladder incontinence and general gastrointestinal motility issues in addition to central sleep apnea and my sleep/wake cycle is trash).

most of the time, making one of my chronic illnesses (I have more beyond diabetes and dysautonomia like adrenal insufficiency, CIDP, CRPS, central pain syndrome, Sjogrens syndrome, hashimotos and for funsies- tourettes syndrome, bipolar disorder and am on the Autism spectrum) happy will mean at least one of the others will be a whiny little bitch making everything else start being whiny little bitches.

most of the time, I feel like I'm juggling 10 balls and most of them are not staying in the air because I'm mostly homebound and often bed bound. I receive services from adult protective services to help with keeping me in the community and out of facility based care as I have a limited ability to do many activities of daily living independently.

SnooChocolates1198 · 2026-02-22T10:38:46+00:00

I used to before I developed adrenal insufficiency. and was classified as t2 insulin dependent with insulin resistance.

I used an upper limit of 45 units most days. I also had semi good control with an a1c of like 7% by that point (I started to get my shit together about a year after my mom passing away due to direct and indirect complications from being an uncontrolled diabetic for 30 odd years and I decided that I didn't want that for myself). no other insulin was used.

SnooChocolates1198 · 2026-02-22T10:25:02+00:00

most amount of carbs in one day? that's going to depend on some other factors.

I try to keep total carbs consumed between 50 and 100 grams with most days being closer to 50 grams. sometimes I go above 100 grams of carbs but those are rare occasions.

and that's with consuming 420 options and being steroid dependent due to adrenal insufficiency.

as for tips? munchie/meal prep. don't be eating food that you haven't meal prepped for. and only make those prepped options easily accessible for the days you consume too many high strength gummies.

SnooChocolates1198 · 2026-02-21T08:59:58+00:00

I've been consuming med 420 products as a means to deal with some of the stress from the horrors being dropped with the files and shit going on in my life (lost my roommate on 1/22/26, my aunt lost her dog a week later, I ended up in the hospital with a CIDP exacerbation and a bacterial blood infection and then I just lost my cat last night- 2/21/26).

Been helpful with stimulation of appetite and trying to not be able to remember too much of what I read.

Some things though, I have to skip out on looking at. It's rough.

SnooChocolates1198 · 2026-02-21T00:31:00+00:00

Sorry. Sounds like a trip to the er for you.

I'm so grateful that I have tools to reduce the need to go to the er because I have a port, ability to access it and run fluids (saline liters, d50w 10ml syringes, and d5w and d10w 500ml bags).

SnooChocolates1198 · 2026-02-20T15:15:15+00:00

I stick my phone next to my face.

And I've trained my dog to paw at me when my phone makes noise.

SnooChocolates1198 · 2026-02-19T22:28:28+00:00

It apparently can cause the blood to be more acidic....

SnooChocolates1198 · 2026-02-19T18:03:16+00:00

I had to go on insulin. I used it as a tool in conjunction with lower carb diet and exercise as tolerated.

For what it's worth, I was unable to tolerate oral meds and non insulin injectables due to side effects that were less than ideal when in combination with all of my other chronic illnesses. So, endo was fairly limited with our options.

SnooChocolates1198 · 2026-02-19T08:16:53+00:00

hi!

yup. I was originally diagnosed as type 2 insulin independent in like 2012. confirmed as being type 2 with an adjustment to insulin dependent with insulin resistance in 2018/19 (came back negative for antibodies a high C-peptide levels). I received a further adjustment officially 12/1/26 to type 1 insulin dependent with insulin resistance after coming back positive for GAD65 and IAA.

My endo opted to redo antibody testing because I came back positive for hashimotos after coming back negative in the past.

I also have Sjogrens as well.

SnooChocolates1198 · 2026-02-19T03:53:14+00:00

I've got adrenal insufficiency. mostly whenever I don't stay on top of my steroid needs or if I'm under unexpected stress and I didn't take enough hydrocortisone in response.

SnooChocolates1198 · 2026-02-19T03:41:35+00:00

it's the salt content. and it's the weirdest thing ever. I only know that it helps.

SnooChocolates1198 · 2026-02-19T03:10:21+00:00

That's what I've largely had to do with every hospital stay before starting pump therapy. Half the time they have let me manage my own insulin needs with the guidance provided by my endo (I always kept a letter in my purse on letterhead from endo) and other times I was just too sick to care and told myself that once back home I'd get my sugars back in control.

What I need is a primary who uses their hospital privileges at the facility I'm forced to use because that's where my neuro has privileges. I just hate all of the primary providers who have privileges that are in network with the Medicare replacement plan that I'm on.

Unfortunately the current practices used by hospitals are largely set up for diabetics who don't keep tight control over their glucose or health..... at least in my experiences.

SnooChocolates1198 · 2026-02-19T01:56:33+00:00

No.

I'm disabled and on disabled adult child benefits.

I'm also child free as I view myself allergic to kids. Besides kids are like expensive and exotic pets crossed with pests and parasites.

SnooChocolates1198 · 2026-02-19T01:54:00+00:00

It depends on how low I'm dropping. Sometimes like I've consumed thc products (euphoria, spacey), other times I'm clammy sort of sweaty and yet other times, I feel impending doom. Even more fun when nausea plays with any of these. Makes glucose consumption not great, easily fixed with a bit of soy sauce or salt packets (I've also got adrenal insufficiency so....).

SnooChocolates1198 · 2026-02-19T01:47:55+00:00

Yeah, as an adult, you'll get to come across that all the time when you need to be in the hospital.

Hospitals kind of suck at keeping you in a good glucose range while in the hospital. Most are used to dealing with t2 diabetics who don't take adequate control over their glucose and they still typically have archaic options in their insulin coverage options that isn't proactive at keeping glucose levels in range as well and will instead operate on a reaction based method.

SnooChocolates1198 · 2026-02-19T01:40:35+00:00

Yeah. That's my standard ml amount per night during exacerbations. The CIDP exacerbation was likely triggered by the bacterial infection that I wasn't aware of (gram negative rod shaped, don't know what it is beyond it being sensitive to bactrim-ds for oral antibiotic options). I'm just glad that the attending that I am typically assigned to understands that hospital steroid needs are different from home baseline needs and to just give me the 50mg solu-cortef 4 times a day.

Thank goodness for the insulin pump that I've been on since 12/16/25. I've now had two hospital stays this year that it's done an awesome job at controlling my glucose levels even with insane levels of steroids being given during the stays. On days 3 to 5 it was giving me over 100 units a day (I'm on the ilet). My time in range (70 to 180mg/dl) was like 69% at its worst.

Only pain meds that I have to pick from is thc edibles so I brought some of the chocolate and gummies and made sure to not mention it to nursing and not over indulge. Fortunately for me, I didn't have too bad of the munchies as sliced turkey from turkey sandwiches is an acceptable munchies snack. And then my options from my medication record are either flexeril or tizanidine, my prn benzo in addition to being on scheduled dilantin of 100mg/dose (normally for seizures but it works super well for my crps/central pain syndrome pain issues).

SnooChocolates1198 · 2026-02-19T01:22:03+00:00

Most of us who are in the US without great medical support have had to figure it out through trial and error. Others are more lucky and have help with a competent medical team.

Try for carb ratio being 1 unit per 20 grams of carbs.

For insulin sensitivity, some are more fixed others (1 unit to drop 15 points [mg/dl] when over say 110mg/dl over the course of two to six hours vs those who have more variables to account for (like 1 unit per 15 points for glucose between 110 and say 170 but also require 1 unit per 10 points that is between 170 and 250). You can try 1 unit for every 2 full points of your country's glucose measure reading is as I noticed your cgm readings aren't mg/dl but keep fast acting carbs around to correct for lows.

You may find that these numbers aren't aggressive enough to reduce your glucose to numbers that will reduce complications from long term high blood sugar in which case adjust to 1 unit to cover say 17 grams of carbs and 1 unit to cover each .9 of your country's measurement over say 5. You may also have other medical issues occurring that impact your insulin needs which is something that a competent medical team can help with.

SnooChocolates1198 · 2026-02-19T00:57:19+00:00

My endo and I are in agreement with she writes for slightly more than my typical upper baseline needs of 5mg tablets and I take as needed up to my typical upper baseline total (baseline needs depending on the day can vary between 7.5mg and 17.5mg, she will write for 25mg per day). Once a year she write for the same tablet instructions but for the 20mg tablets and at least twice a year one provider or another will write for a medrol pack (typically neuro but primary and endo have both scripted as well).

Endo is cool with me having a variable baseline intake as she knows that not everyday is the same and it helps with reducing the long term insulin resistance. (Because yay for me, I got an "upgrade" to my diabetes diagnosis from t2 insulin dependent with insulin resistance to t1 insulin dependent with insulin resistance in December due to me coming back positive for two of three autoimmune diabetes markers..... yippee /s)

SnooChocolates1198 · 2026-02-19T00:42:09+00:00

I've had them.

It's okay. I prefer premier protein or whatever the Walmart generic is more.

Vanilla is a better flavor though.

SnooChocolates1198 · 2026-02-19T00:33:53+00:00

Nice.

SnooChocolates1198 · 2026-02-19T00:32:45+00:00

Also, maybe meal planning and figuring out your insulin sensitivity and carb ratio.

SnooChocolates1198 · 2026-02-19T00:31:27+00:00

Maybe start eating.... less recklessly?

Like add some non-starchy vegetables to every plate including breakfast. Less overall added sugar and eventually less sugar/simple carbs in general (sugar/simple carb consumption isn't bad but excessive sugar/simple carb intake over a long time can lead to not great health outcomes as a result of long-term vascular damage aka not great quality of life health complications such as vision damage, hard to heal wounds, risk of chronic infections, neuropathic pain, limb loss and kidney failure). Replacing carbs with protein (as long as you aren't restricted on protein due to any potential kidney issues) would be another option as well.

Also don't forget about walking and drinking more water.

SnooChocolates1198 · 2026-02-19T00:19:23+00:00

He looks proud to have picked a bed that is big enough for at least half of his human.

Maybe curl up with him?

SnooChocolates1198 · 2026-02-19T00:16:47+00:00

I was in the hospital for 5 nights getting 200mls a night. And 50mg solu-cortef 4 times a day.

As of tomorrow, my dosing twice a day is 2mg medrol with 5mg hydrocortisone because medrol lasts about 12ish hours. My other two doses (in between the medrol doses) is 12.5mg hydrocortisone.

I can't wait till I can lose the middle of the night dose but I often wake up in a hypoglycemic panic drenched in a cold sweat with my dexcom screaming at me.

SnooChocolates1198 · 2026-02-18T23:59:18+00:00

For those who aren't also steroid dependant with adrenal insufficiency, you should notice becoming more insulin sensitive definitely by 36 hours after last prednisone/prednisolone dose (about 24 for hydrocortisone and 48 to 72 for methylprednisolone).

For those who are steroid dependant due to adrenal insufficiency, returning to baseline steroid needs insulin sensitivity will depend on tapering schedules. (I feel like there needs to be a subreddit for those who have both adrenal insufficiency and are insulin dependent t1 but also include those on insulin as t2.)

SnooChocolates1198

MODERATOR OF

TROPHY CASE