Adrenal Insufficiency and Type one Diabetes

Type 1 and LADA
1

Hello everyone

I am 29 years of age, and have had Diabetes, type 1, for 26 years now. About 6 years ago I began having hypoglycemic type seizures, that would have a rapid onset, and usually be unstoppable with conventional hypoglycemic treatment.

I can not count the times I had downed liters of regular soda, wandered into a pharmacy and downed 10 dex shots, or even self injected glucagon, yet would wake up with paramedics over me giving iv dextrose.

For the longest time, and about 6 endos, It was believed I simply had poor diabetic control.

Doctors would not believe me when I told them I could go three days without insulin (likely putting myself in dka) and would still be eating meals, have hypo lows, have a hypo seizure, get discharged from the hospital, and still be having hypos.

I cant even begin to express the frustration I had gone through, and still have even after diagnosis, with some ER Doctors.

However, one endo happened to see me for my hyperthyroidism just after I had a seizure event by two days. My drivers licence was revoked and she did a test for ACTH and cortisol. Both results were low. She did an ACTH stimulation test, which did not produce desirable results.

She refereed me to another endo, who repeated the test using a 250mc/g version of the test rather than 1 mc/g this being four months after the seizure, came back normal.

For years the issue was dropped, my license was reinstated since I had fair warning of any low, yet the seizures occasionally continued. I kept switching endos and having tests done showing low cortisol Yet nothing was done.

Finally in Nov 2012, after a severe double ear infection, I seizured in bed at a hotel while driving my grandparents to Florida. I had been so weak the day before I had to let my Grandmother drive and was barely able to walk. When I woke up, I could tell I had seizured, Blood in mouth, objects strewn everywhere, broken toenail. My blood sugar was 1.3 mmol/l (23.4 mg/dl) My Grandmother helped inject glucagon, I told her to call 911, and took two tylenol 3's from my existing prescription for the ear infection.

Once at the hospital, I mentioned that this was not a standard hypoglycemic seizure. I had been sick, under stress, and had a normal dinner and normal insulin intake, yet had been severely reducing my basal insulin intake to prevent hypos. The doctors did a test again for acth and cortisol, and it was basically nil. They gave me an injection of cortisol, and a prescription for cortisol pills to last until I could see an endo back in Canada.

By the time I got back to Canada, I saw a new endo on an emergency appointment, and based on the US results (5000 dollar travel insurance claim) she did a second acth stimulation test. After I left the hospital from the test, I had another 'unstoppable low' where i drank 5 bottles of pepsi at a pharmacy, begged for cortisol pills, and was told to wait for paramedics. I was brought back to the hospital, and the test results determined I had an ACTH pituitary deficiency. My Pituitary gland while under stress does not make the required hormone for my adrenal glands to release cortisol, the natural steroid that allows the body to deal with stress, maintains proper glucose, and maintains electrolyte balance.

I am now on daily intake of cortisol, and should an 'unstoppable low' or other severe illness arise, I no longer take glucagon, I take sol-cortif emergency injections. And no surprise, they actually work.

I still have ER doctors who dispute the diagnosis, when I go for electrolyte replacement, or treatment for dka because I was too ill to keep medication down and had run out of injectables. Yet, the endos say it is really the only explanation for the history of my symptoms over the past 6 years. (prior to these events I only had one or two true hypoglycemic seizures requiring glucagon) possibly more when I was first diagnosed.

Has anyone else had a problem like this, or deal with this issue?

2

So is the diabetes diagnosis still relevant? Seems like you are producing insulin, just not correctly.

3

Wow! Your situation makes my T1D seem like child's play. No, I don't have these symptoms, but perhaps someone else here knows something about it.

Your explanation seems logical and makes sense to me. Your ability to explain this shows that you have a solid understanding of the basics of your condition.

I know that when I experience a low, my adrenal glands signal my liver to release glycogen, emergency glucose. That anti-hypo response is what saves many T1Ds every day. While we can add nutritional glucose to help, it appears from your situation that the adrenal system plays a primary role in responding to emergency lows.

As a side note, it must be incredibly frustrating to have docs, ER and otherwise, dismiss your explanations and appeals for effective help. When will the medical professionals finally realize that some of their patients actually do have a handle on what ails them? Perhaps they should start to gives us more credence when we show up.

4

Yes, I am still a type 1 diabetic. The endo did do a c-peptide test and I am not producing any insulin whatsoever. The hypos I have, may not be 'true diabetic hypos' in the sense that they are not related to an insulin overdose, rather a lack of control of steroids in my body that regulate glucose control. Its just a weird coincidence that I have both conditions. Its no longer just unstoppable lows etc, when I need to take an emergency injection, my heart rate can go out of wack, i can end up in severe back pain, or anything really. If you look at Addisons disease, it would give a better understanding, as it is quite similar to what I have, and is actually treated the same way.

5

I don't have this, but I know someone who has Addison's disease (but not T1 diabetes). From what I know, it seems both diseases are a daily balancing act, trying to manually balance hormones your body no longer produces, managing stress, changes in activity, emergencies, etc. Must be difficult to have both and also manage the interaction between the two.

6

It is actually very rare for adrenal issues to 'cause' hypoglycemia and seizures, although it is not unheard of. It usually causes a variety of other symptoms (which I do also experience) , but the hypos are usually found in children with Addisions disease. Its hard for me to still understand how I can have a hypo, or an 'adrenal hypo' at a time where i have intentionally stopped taking insulin for days to prevent lows. I honestly probably put myself in dka many times prior to being diagnosed.

My last visit to the hospital, I had to refuse a doctors attempt to give me 10 U of humalog via iv, when my blood sugar was 9.8. (177) Taking my correction factor into account, I would have been at -21.8 (-393) aka dead. I then refused their orders to let them control my diabetes. I didnt go to the hospital for diabetes, I went because I could not keep food, water, or medications down. and was deydrated. The 10 U was based on the concept that I would be eating a gluten free lunch in 10 minutes (which did not arrive for two hours, and I was physically unable to eat for another 5 days)

And of course, the ER doc wrote my endo a nice letter saying my cortisol and acth were normal (perhaps because they gave me an emergency injection of it the night before? And also said the diagnosis was likely related to hypoglycemia.

Oddly at the time I did have keytones reason being I had to cut my lantus intake to 5/u a day (instead of 30) because I was unable to keep food or meds including cortisol down. One would think that would be a wake up call)

When released two weeks later, my discharge report by a different doctor stated that i did indeed have adrenal issues, and was treated for a completely different illness (infection), that temporarily threw both my diabetes, and my adrenal issues out of wack.

7

Thank you Jen, and everybody that responded. Your comments are helpful and supportive.

8

http://kidshealth.org/parent/diabetes_center/diabetes_basics/other_diseases.html seems i've lucked out on all of these conditions in some manner. Yet didn't get them until I was an adult. xD

9

I'm sorry to hear about all your troubles getting a proper diagnosis. Cortisol is really important when you have use insulin because it is cortisol that signals counterregulation and that (at least partly) protects us against lows. Unfortunately in your case with too little cortisol your body couldn't protect itself against lows. I'm glad you finally figured out what is going on.

10

Interesting post. I have been recently diagnosed with reactive hypoglycemia and autoimmune diabetes. I was hoping that stopping my high post prandials (for now with prandin before meals) would stop the hypos but I’m still having them several hours after eating, even if I snack between meals. I have tested both low and high for cortisol in the past (as well as hyperthyroid which is resolved, celiac for 18 yrs…) in the past but I’ve never had any stim tests. Now you have me wondering about how my adrenals may be contributing to my messed up blood glucose control?

11

It's possible, Adrenal function does play a key role in glucose control, diabetic or not. Its always worth getting it looked in to.

12

I had a question about your friend Jen. Im wondering if they gained weight when they went on cortisol replacement therapy (if they did) for their addisons. I've noticed i've gained about 30lb. I've been told this is normal with any extended steroid therapy, and i'm also on two other meds, Lyrica for neropathy, and antidepressants, which can cause weight gain.

However, when a doctor tells me im 'overmedicating' i simply state that both T1D and adrenal issues (addisons - primary) or ACTH -pitauitary (secondary) both have are self managed conditions, and if you are sick, you Absolutley will need to increase your dose up to 3x norm to ensure you have proper levels in your body to fight the illness, and prevent adverse adrenal effects on yourself, eg nausea, back pain, in my case 'unstoppable lows' etc. And since there's no magic 'cortisol blood test meter' that I'm aware of, when sick really the best one can do is take an extra pill, wait an hour, assess their symptoms, and decide if more is necessary or the problem is solved. If serious enough, then they will have to take an emergency injection 100mg/cortisol IV/IM. I have had to do this an abnormal amount of times over the past year, and was in fact sick from July 2013-October 2013 with MRSA and C-Diff, which in fact caused me to requir4e an almost constant increased dose, as well as numerous injections. (as per endos orders) So obviously i was irked when a random hospital doc told me i was 'overmedicating'. Yes, perhaps the dose went over a few times, but better that then a morgue. Same can be said for a high blood sugar vs one that would be deadly from an over treated diabetic hypo.

Anyhow, I gained weight when I first went gluten-free for celiac. It settled down in a year. I now make better diet choices and attempt exercise, although that's easier said than done due to the extreme cold in the winter, and back problems.

Sadly I had to explain that one to my family doc today.

13

Hi,
Sorry to hear about your troubles. I have hypothyroidism which I assume is kind of the similar autoimmune disease, but in your case your glad is overactive and mine is under-active. However, before being diagnosed and starting treatment with euthyroxine I also had symptoms which would make me think I was low, sometimes even without measuring my BG would grab juice and only later find my BG around 300-350 which really threw off control of my diabetes.
However, as soon as my endo figured it out and started treatment I felt much better. Before, i was always sleepy, tired, irritated and could not really tell reason why, but now I am much better. I did not know it can affect diabetes, I mean I do have hypos but I cope with them quite easily and never really experienced anything that you describe. As far as I am aware both of the conditions have similar root cause thyroid gland, but I guess in they are different.
I myself wondered how much the condition is related to diabetes and asked several endocrinologists about it, but none of them seem to relate it to my diabetes. They say the condition develops independently and is autoimmune disease. I do not have medical education but one of the causes of diabetes is that it might also be autoimmune disease, which is kind of odd.

14

Hi, I would recommend that you read "recovering with t3". The reason for this is that the author explains the link with cortisol, pituitary and hypothalamus glands, thyroid hormones, and glucose conversion. I'm sorry you are going through such a rough time. Btw, I'm Canadian too!

15

I'm not sure if they did or not, since they have had the condition for the entire time I have known them. They are overweight, though, so it wouldn't surprise me ... I suspect that most complex issues handled by endocrinologists, like adrenal insufficiency and T1 diabetes (insulin insufficiency!) are not understood well or at all by doctors outside the field. Especially the self-management aspect of them. I'm sure many doctors don't realize that patients with T1 adjust their insulin doses constantly without doctor supervision—otherwise we'd be going to our doctor every week!

16

I make insulin adjustments every day. I don't think endos would have any peace if they required consultation with each insulin dose change!

17

Hopefully getting the ACTH/Pituitary stuff under control will help. Maybe some university is doing research on it, and you might be able to get better support that way. Good luck.

18

Thank you Scott A, I would be Scott S. Interesting. Its difficult to do more investigation into the issue at this point, eg the 1mcg acth stim test put be back in the hospital with a seizure. So I cant imagine what a 250mcg stim test would do to me. Anyhow, It would be great to get it all under control. This condition put my A1C up to 8.7,; It is now down to 8.0. Hopefully it will drop further. (sorry i don't know if US uses different A1C readings or conversions, i can only convert CAN/US bg readibgs) Hoppefully they can keep me as an inpatient for a couple days, with specialists present, and get it figured out. Anyhow, thank you again.

19

Hi. I can fully understand your situation actually. The Pituitary gland, the size of a pea in our brains, is responsible for so much important things in our bodies. eg hypothyroidism, hyperthyrodisism (i've had both many times, and from the looks of it, i'm on my way to hypothyroidsism again) There are a lot of autoimmune conditions that are related to the pituitary gland, including release of acth, which is my current problem. Its even responsible for growth hormones as well as gender required hormones. An autoimmune disease can easily throw any of these off, esp if you already have T1D, you're at risk for other autoimmune conditions. (I now have 3, possibly 4). When I was started on Lyrica for my neuropathy, I also found it helped with anxiety and insomnia. Reading about it, I found out that Lyrica binds to the exact GAD receptors that T1D's have antibodies to. Your condition sounds annoying and confusing. I do hope it gets figured out and you feel better soon. Thank you.

20

Thank you. I certainly will. If you have a lead on where I can obtain this book, please shoot me a PM.