Managing Type-1b Diabetes with Addison's


#1

I had pancreatitis (admitted) at ages 14 & 22, but escaped the needle etc. (got lucky) Then at age 33, I got a sore throat, followed closely by a bout of pleurasey. I lost over 30 lbs in just a few weeks. My fam Dr refused to see me for f/u. My boss at work asked me to see a Co Dr. That morning the Co Dr considered, but dismissed diabetes. That same day, after a few tiny sips of Coke, it was meat-wagon trip to ER and admitted in DKA, & Dx’d w/DIABETES. That was 1979, nearly 40 years ago.

Back in 2012, I fell and broke 5 ribs, displaced posterior (back) fractures 5-9, and acute kidney failure. I also lost my fight-flight response, dawn phenomena, and BG spikes due to things like a cold etc. In short my diabetes became more stable & easier to manage, so I did not complain. One problem was, I would get an infections, w/o a clue I had it.

Addison’s is a dysfunction of the adrenal glands. Think AD RENAL, they sit on top of each kidney, hence like ad-ons to the kidneys. Also like kidneys, loss of one, is not a big deal, if the other kidney is functional & can take up the slack.

Fast forward to Last Feb (2018). I fell causing a hematoma in my remaining adrenal. Last year was HELL. Very poor medical care, little help. Most of what I now know about Addison’s and managing it with diabetes, I learned the hard way, road of hard knocks, or experience.

While most cases of Addison’s is auto-immune, my Addison’s is due to trauma damage.

Here are a couple things to consider, that make diabetes management much more complicated. Addison’s is treated with STEROIDS. I expect most here have either experienced D management on steroids, or have heard horror stories of it. Like insulin for diabetes, steroids for Addison’s is a life long need of 24/7 management.

While steroids increase a diabetics insulin dose, untreated or undertreated Addison’s can cause hypos. Addison’s also change the dynamics of my spikes and drops etc. It’s a WILD ride, after having over a decade of great stable diabetes management on MDI, that stable, predictable state is gone…gome…gome.

I had not needed to watch for keytones for many years, now, I learned the hard way I need to be alert to Sx and when I need to check for keytones…

Another thing, I seem to have to deal with is STRESS. Due to Addison’s, my adrenals no long respond with natural steroid hormones in response, and if I fail to take extra (stress dose) steroid dose.it seems I to have caused me, otherwise unexplainable BG drops/hypos.

I went through a rough period whan Addison’s was setting up house in my body, not yet being treated w/steroids, my stable diabetes turned “BRITTLE”, a label that was bestowed upon me on a ER trip last year. My BGs were swinging wildly between 40s and near 400, sometimes more than once in a single hour.

Anyone here with diabetes AND Addison’s feel free to jump in here, with your questions, experiences and tips, if you have any.

JD.

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#2

I have a question. What tech are you using? Any? Or are you manual injection? You are a very unusual animal for our collection. Are you the only one of your kind?


#3

Thanks for sharing your experiences! I very much appreciate it! I’m going to read through your post again tomorrow and come back with some questions.


#4

It sounds like you’ve had a difficult go of things for awhile! I’m glad you’ve continued fighting. Thanks for creating this thread :slight_smile:

That totally makes sense. I will pass this along to my sister. She has said she has unexplained hypos quite often, and now I’m wondering if it’s after a more stressful event has occurred (e.g. giving a presentation at school).

Would you mind explaining this a bit more? How were spikes or drops influenced by having Addisons?

Do you think you’re more prone to ketones because it’s more difficult to control your blood sugar levels on Addisons? Or do you think it’s because Addison’s itself makes someone prone to ketones (given the same bg level)?I’m not sure how often my sister is checking. I’ll talk to her about it.

Also, what does Sx mean?


#5

Sx=symptoms, i think, like Rx = prescriptions, and Dx = diagnosis


#6

AD = Addison’s
Dr = Doctor
Hx = History
Sx - Symptoms
Dx = Diagnosis
Rx = Recipe, once upon a time all prescriptions were custom mixed using the recipe given by a Dr. (commercial, read sometimes greedy big pharma) **PATENT**ed medicines came later, the Rx abbreviation stuck. A (very) few medicines are still done the ole fashion way, pharmacies that do this are called COMPUNDING pharmacies. Compounding of special meds is making a little comeback, especially in custom DNA related cancer treatment / medications.

KEYTONES… I got unbelievable nausea due to Addison’s. At least I was Rx’d Zofran 8mg for that, early on. Then even after I was on Prednisolone (w/ an ‘L’), once in a while I would get some, not quite as bad nausea. Then I finally? (think) I figured it out??, (MAYBE, I THINK, blowing a fuse?). I decided to check for KEYTONES as one Dr suggested I needed to be doing. Sure enough I was spilling moderate keytones.

What I THINK happened. I think I failed to recognize a stress situation and needed more Prednisolone. I have been at this for under a year, and still learning (trying to anyway) recognize stress situations where I NEED to take a STRESS dose of steroids, double to triple my normal, non-stress times. My BGs were not that bad, spikes under 300, taking my insulin and all. Of course, there goes my carefully calculated insulin factors, out the virtual (in Le olden times we would call it the ‘proverbial’) window. You see, I failed to 'Think Like an Adrenal" a pun/slant on the diabetes book of similar name, every diabetic should have in his or her home medical library.

Question, should I write such a book, & use that as its title??

Sudden unexpected / unexplainable BG drops. Untreated, or undertreated Addison’s is known to cause this. My current thinking is that failing to take a proper STRESS dose when needed (recognized or not) seems to cause the BG floor to drop out from under me. So far, doing better at recognizing stress, and better stress dosing seems to be working. (knock on Woody). Then of course there goes my insulin factors again, Diabetes Dragon, escaping the cage I had that wild beast confined to.

BG DYNAMICS. I was having a rough time trying to figure out my new 'brittle’ diabetes and hyper insulin sensitivity (about double or 1u insulin now about equal 2u before). The old way/s were just not enough. I do not know what my previous, pre-AD dynamics were, no CGM before AD , they just feel different to me. I went to a walk-in for a Rx to get a Libre system.

BEFORE 1u of Novalog correction brought down my BG about 28 points. Now, after Dr Addison set up shop, 1u dropped me about 55 points. I learned this the hard way, along the road-of-hard-knocks, or was it the pot-holed freeway? I had a BG of 240 or 280 (4get which) and took 4 units of Novalog. That should have dropped me about 115-120 points. Instead that little 4u Novalog dose sent me CRASHing down a full 220 points. (oh I felt that one!

I have long avoided bringing down very high BGs in baby steps, playing it SAFE, avoiding hypo-crashes. IMO, that is extremely important when Addison’s has joined our med-party.

I will TRY, I am a very trying persona, but as my teen years Dr noted, I had an ability to persevere, in anything I took on. I will TRY and answer your questions as best I can. If I 4get to include / answer /respond… please feel free to awaken my pot-holed gray-estate (think real-estate, location, locating, location is important) upstairs. I have enough MS scars (I call pot-holes) to Dx at least 5 cases of MS. They say my brain MRI shows “more than 10”, the McDonald MS Dx criteria is 2 or more. Throw in a couple spinal scars as well for good measure.

BTW my formal background is NOT in medicine, it is in aero-space avionics, and business computer network tech support at a large gas/electric utility co. I was good, a go-to tech, when it came to diagnostics, I find the basic diagnostics concepts are mostly the same.

I am sure I forgot an item or 2 or more, just remind me. Plus, if you have anything to add to my verbose responses, please do not be shy.

The ONLY dumb, stupid question is the one NOT ASKED!

PS If you are blessed with both AD & diabetes, especially Type-1, GET A CGM! I will discuss more this later, gators


#7

One strange thing, For some yet unknown reason, women often become anorexic, but with Addison’s MALES sometimes become anorexic…go figure?

So if yer better half is having morning sickness, but is NOT PG, maybe Addison is working on setting up shop.

Likewise if you macho man is suddenly acting like a she-male, in that, what appears to be anorexia nervosa, maybe he is a rare male that has been selected to host Addison’s.


#8

Interesting. I think you should write a book. Or, since you are one with very unpredictable BG data, you should contribute it to the community that is working on closed loop algorithms. I think that development may, down the line, be extremely helpful for people like you. Maybe some kid wont need to spend decades figuring all this out. Your data is valuable.


#9

Hi MoHe… IMO, FWLIW (for what little it’s worth),

Raw Data would be of less value, than concepts of HOW (& why) things work the way they do. Here is an example; I was meeting with my endo, we were looking at my Libre charts. My overnight saw-toothed BGs gradually dropped downward. I noted that I should lower my night time basal, and he agreed. A one unit reduction was too much, so I went back up 1/2 of a unit of Lantus. Did I say I was INSULIN SENSITIVE?

BG DYNAMICS with Addison’s… Since I did not have a CGM, (only routine 4x/day finger sticks) of any flavor before Dr Addison took residence with my Type-1b, RRMS, & a few of their friends, I have nothing to compare with before vs after Dr Addison (Who discovered AD & for whom AD was named for) set up shop. My assertion of my opinion is purely based on MY personal experience & perception.

Remember, everyone’s diabetes is a little different, so is everyone’s Addison’s, but the basics / concepts of management of both is basically the same or similar. Think stone soup, it varies, depending on exactly what each contributor (diabetes, Addison’s etc) bring to the kettle.

Rare? How rare is T1 diabetes, or Addison’s, let alone the combo of T1B + AD? They say only 1 out of 10 diabetics are any flavor of type-1. Then within type-1 diabetics, only one out of ten is a type-1b. Just being a type-1b, makes me 1 out of 100, of just diabetics. Few doctors see many type-1s of any flavor. Then Addison’s itself, alone is a rare disorder, Now, how rare is the combination of Type-1 plus Addison’s? Any humanoid here wanna take a stab, or wild guess?

One thing I ran into was some doctors do not want to deal with type-1 diabetes, however they see a fair number of type-2s, something they are more familiar, and of course more comfortable with.

Enter The endo I was sent to for my newly “brittle” diabetes, he gave me BAD advice, (some of it counter to Abbott’s Libre docs & FDA approval conditions / stipulations) never mentioned going to 1/2 unit insulin increments etc. I did that on my own, largely via researching the web. For me adding 2 tools, a Libre CGM + a MiaoMiao (Libre reader-blue tooth transmitter) + Glimp android software, along with 1/2 unit increment Novalog “echo” pen that dials insulin doses in 1/2 unit increments, were, absolutely necessary for me.


#10

Where you you find a Doctor? Do you have to go to Docs at the neighboring University or somewhere? Joslin?


#11

I am not being currently treated by a university Dr. 2 university specialist did confirm my being type-1b, The big VAMC I use is connected with a university, their residents cycle thru that VAMC.

My MS Dr is a very knowledgeable university researcher, holds MS clinic 1 day a week at the VA. He is NOT a people Dr! He complains openly that MS is expensive to the VA. Universities are POLITICAL creatures…


#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?