Managing Type-1b Diabetes with Addison's


#12

Out of curiosity, while glucagon isn’t a steroid, it does raise the BG. So, would in theory a bi-hormonal pump with a closed loop system be THE treatment for you? Like the one that Beta Bionics is working on?


#13

I was diagnosed with both Type 1 Diabetes and Addison’s disease at the age of 12 following a week of being extremely sick, vomiting, and craving salt. I thought my insatiable thirst was because I was eating so much salt but in fact it was due to hyperglycemia.

Anyways, now I am 29 and have to say management of this is really hard. I have a fairly stressful job and find that I need to up my steroids fairly frequently. I was also having dawn phenomenon a lot and my endocrinologist thinks it’s due to stress during sleep.

Now, I am training for a marathon. I am having an extremely hard time figuring out correct dosing for steroids during different training and my blood sugar ends up being all over the place. Does anyone have any advice? I see my endocrinologist next week but I really need someone that is athletic.

David, I am right there with you. There are some days where I feel like I can’t get a hold on anything and other days that are good. I have to say it’s a lot of trial and error and self management.


#14

I had this brilliant IDEA, make a pump for Addison’s (steroids) like an insulin pump. I was going to mention my idea to my primary Dr next time.

Then I did some Google’in… Oops’y

https://www.google.com/search?q=Addison’s+steroid+pump&sourceid=ie7&rls=com.microsoft:en-US:IE-SearchBox&ie=&oe=

Cortisol pump: Continuous Subcutaneous Hydrocortisone Infusion, already exists!

Just imagine wearing TWO pumps, plus a CGM, now U’R piped and wired!

Just imagine you loaded BOTH pumps with either insulin or cortisol, by mistake… If I understand this correctly, the SAME pump hardware can be / is used for both, maybe they will use different COLORS for the pumps. Better yet, make it so cartridges of insulin & AD steroid can not physically get mixed up in the pump.

Hey…my buddy Murphy, (of Murphy’s Law fame), is never far away. One night I took my bed-time Lantus (I was put on split doses, for more even coverage), When I went to set the syringe back down on my night stand…

OOPS… I noticed the dark-red cap, I just drew it from the Humalog vial, instead of Lantus. I survived, w/BGs in the 250+ range the next day, using my carb ratio in reverse, plus extra for a safety cushion, had a friend call me 2 hrs later w/info to give 911 etc, in case I did not answer.

I ended up busting my own bubble, however it is nice to know it exists.

I can not see the post right now, (as I type this) from the 29 yr old struggling with T1 + AD, but they should check this out further and discuss this with their doctor.

Type-1 alone can be a wild, even very wild beast, then couple that with Addison’s, you are in for one very wild ride.


#15

Infusing glucogon? might that blow your body up like a Macy’s Parade character? See my post & link about pumping hydro cortisol for Addison’s.


#16

Does VAMC = Veterans’ Administration Medical Center? I’m not familiar with that acronym and Google was no help. I was confused that it might be a medication that you were using.


#17

YES… SORRY…sorry…SOReeeeeeeeeee.

I am so accustomed to using that acronym, I forget others might not recognize it.

Thanks for calling me out on it. I am sure you were not the only one who questioned what it stood for.

PS: I just Googled “VAMC” on MY computer.
The first link Google returned in the list was;
VA Medical Center - VA.gov, complete with a map showing several VAMCs within about 40 miles of me.

Looks to me like anyone here that is an honorably discharged veteran, to find a VA health care facility, A VA medical center or CBOC (Community Based Outpatient Clinic) near them.


BS dropping after eating during the day
#18

If you don’t mind me asking - what type of traumatic injury led to Addison’s? I dont know much about it. Did something smash your abdomen?


#19

In Jan 2012, I took a hard fall, landing on my back. I broke 5 left ribs 5-9, posterior displaced breaks. The HORSEpital Xray crew, from hell, missed all 5 super obvious broken ribs. These were DISPLACED breaks, not hairline fractures. A couple days later I had acute kidney failure. Back to ER w/BROWN urine sample, re-Xray’d etc.

I lost my DP, and adrenal stress responses. My BGs would not spike from an infection, or injury. More than once I ended up in ER, or a walk-in clinic with an infection, nausea, vomiting etc w/o the previous, pre trauma warning system (elevated BGs)

Last Feb 2018, I fell backwards into something in my little home shop. That caused an internal hematoma in my R adrenal. I had a syncope about a week later, that drove me to ER to get checked out. then over the ensuing weeks slowly destroyed what adrenal function I had left.


#20

Holy crap! Did you pass out from low blood sugar? Or, totally unrelated?


#21

Adrenal / Addison’s was the cause, loss of blood pressure. I crashed face down, destroyed my face & glasses.

(BG was 200)


#22

Thank goodness you weren’t working with power tools at the time. You still prone to syncope? Like, would you feel comfortable working with power tools or on a roof, now? Did they release you with broken ribs? We’re you in agony?

Do your local ambulance guys know you? Do you know them? Have you ever gone down to the fire station and introduced yourself? You can do that, ya’ know.

This book is getting more interesting, but I feel like I’m missing a lot of details. BOOK! BOOK! BOOK!


#23

BOOK?How-za 'bout a mini encyclopedia, or a series of books?

-1- I had just turned and started walking by my table saw, from my blade runner saw towards my band saw, when the syncope hit. My vision field went to black, slowly (relatively speaking), not nearly as fast as when that nurse injected a Lantus overdose directly into a vein.

My visual field went to black, starting at the bottom (I think it was? blood pressure drop,), and faded upwards. The last thing I recall, before coming to on the floor, was a bright green object hanging on my tool/jig peg-wall, about 6-7 ft away. I have since laid down floor mats to soften the landing. maybe next time, I will not need a landing pad…for a spell.

When I regained consciousness, fairly quickly I think. I was bloody, soaked in yeller aqua, and needed to crawl ASAP to my basement bathroom to relieve my bowels. ( I barely made it)

-2- No power tools were damaged, abused, neglected or bullied or intimidated in any way, by this syncope episode. I was between using a couple power tools, so they were not running at the moment of syncope.

-3A- Ambulance crew:…Oh they KNOW me, & where my house is by now, 4 sure!
When I fell in my driveway, Jan,19, 2012, the FD & ambulance drove right past us. My wife had to call 911 back & tell them. How could they have missed us? I mean with all the bright lights, my wife standing over me, and I was laying on the driveway cement in clear sight!

-3B- We live at the bottom of a hill where 2 roads dead end togather. My wife told them we were exactly at where the 2 streets meet. Every year we have vehicles slide down, off the end, & sharp curve, at the bottom of the hill, hitting trees, or road sign or zig-zag into our drive/yard. There is another house across from ours, It looks vacant 24/7, they even have their windows blacked out, and no outside lights. Contrast that with our house with several daylight floods on our house & garage, plus we were in clear line of sight from the street. Heck their headlight shined on me, as they turned the corner at the bottom of the hill.

-3C- That was just the beginning of a comedy of blunders. Oh I was in PAIN, it took several EMS responders just to get me on a back-board. Then at ER, I got the X-ray crew from HELL (not the 1+hr away, Hell Michigan, much nicer community). They ordered me to go from the gurney to a table, supposedly for better images. I was in such PAIN I could not. They did a half-arsed X-ray, and declaired there were no broken bones. I was given a muscle relaxer & sent home with FIVE DISPLACED FRACTURED RIBS.

-3D- 2 days later, Jan 21, I had been in my La-Z-Boy since the second I got back home, & had not moved. I use a jar as my port-0-let, like I said I was still in PAIN. My mellow yellow output turned DARK! (brown in color) Did my front tube and rear pipe somehow get crossed? I had learned, from TV medical shows, that very dark urine was a sign of kidney failure. 2 of my adult goats/kids tried to get me up from my La-Z-Boy, but could not. We had to call the meat-wagon (Ambulance) again. This time they KNEW EXACTLY where we were. I grabbed that piddle jar, with the brown water to ride with me to ER.

-3E- First thing I did upon arrival in ER was to show them what my kidneys were putting out. Hey, the TV show I learned that dark urine was a sign of kidney failure, was RIGHT ON! (must’a had good medical consultants). I was whisked right off to X-ray. Same exact room & equipment, but a far better X-ray crew. They left me on the gurney, & wheeled me over to a wall mounted X-ray machine that was there 2 days earlier. They had NO problems seeing the 5 displaced fractured ribs, what the H311, a toy X-ray should have been able to find them, I mean the broken ends of the broken ribs were not even near alignment! Nor should even a 5th grader, glancing at the pictures, not see it was NOT RIGHT. I spent about a week in the HORSEpital on CANDY (morphine), & IVs etc to get my kidneys back on-line.

PS they did NOT check for any further damage… like to my left adrenal… dumb arses.

The fiascos I suffer thru, time and again, are so off base, no one could make up better stories. In other words, real, unadulterated TRUTH, really is stranger than fiction.

Hopefully as long as I am treating my Addison’s nicely, I will not have a sequel syncope


#24

Gives me chills to imagine. You are rural Michigan, eh? Its good that they know who you are, at least. That helps.


#25

Rural? You can stand with one foot in my yard, and the other foot inside city limits. Population was over 50K a few decades ago, but it’s down to about 35k these days. Our tallest building is only about 14 or 15 stories. We have two large state universities within just over 40 miles radius.

Naw I do not consider my abode being in a rural area…


#26

OK, I can infer where you live, then, perhaps. I am a neighbor in a state west of you.


#27

Wow, I have passed out 3 or 4 times due to low blood pressure. When I regained consciousness the last time, my blood pressure was 74/38. Each time I hit my head, but was not really hurt. Man, do I feel fortunate.


#28

If you have any warning signs like vision starting to disappear (due to sudden and severe low blood pressure) or anything like that, the best you can do is immediately sit down. At that point, nothing can be done to stop it.

As you state, the biggest risk from passing out is head injury when falling.

You really are very fortunate not to have suffered bad head injuries.


#29

The first time I tried to test thinking I was hypoglycemic, I wasn’t and the next thing I knew I was down. The second and third times I made it to a chair and still ended up on the floor.

I researched my problem and discovered that this can happen to seniors, if we don’t sit on the side of the bed before getting up. Most of the time I remember to do that.


#30

Well, it sure was not my BG (hypo), my BG was an even 200!

That syncope Feb 28 last year was my first ever! I had no idea what was happening, at the time.

Next time, I hope there is none, if I see my vision field starts doing a movie/tv/scene shade-fade, or similar, I will have maybe 1-2 seconds (aka 100-200 jiffies, a single jiffy is 1/100 of a second) to get down!, or clear of objects to be avoided in a fall.


#31

Wow - I’ve been having the same issue since December. I’ve fallen and hit my head (passed out) twice now, the first time there was a lot of blood. Have already seen my GP - she shrugged and referred me to a specialist next week.

I’ve had a auto-immune mediated motor neuropathy that may be related, or it could be explained as an autonomic neuropathy (common with long-term T1’s).

Whatever it is, I need it fixed. Many mornings I can’t stand up and walk (even with a cane) without passing out.