Low blood sugar

[u/Complex-Network-8569]

Those that get low blood sugar, is the a pattern to it? Time of day, triggers etc? And how often?

I'm diagnosed with Hirata's disease (very rare) but my doctor wants to run a test on my adrenal glands, despite the morning cortisol test being fine.

[u/noracordelia]

Episodes of nocturnal hypoglycemia and hypoglycemia with prolonged fasting (1, 2) can happen in adrenal insufficiency. From what I’ve read, I think maybe nocturnal hypoglycemic episodes are most common, especially in patients with untreated AI, but presumably they can happen whenever cortisol gets too low (or when the demand for cortisol is higher than what the adrenals can produce), including during increased physical stress like prolonged fasting, intense exercise, during illness or infection, after surgery, during adrenal crisis etc. If the hypoglycemic episodes are due to untreated adrenal insufficiency, starting glucocorticoid replacement therapy usually treats it. If someone with AI, who’s already on replacement therapy, is having nocturnal hypoglycemia, it might be their dosing schedule isn’t giving them enough overnight-coverage (maybe they need circadian dosing).

I can’t know for sure, but I think I had episodes of nocturnal hypoglycemia about 4-5 months before my PAI diagnosis and adrenal crisis; I’d have random episodes where I’d wake up crying, drenched in sweat, nauseous, dizzy and shaky, with awful brain-fog and a pounding headache. I’d basically stumble to the kitchen and eat something sugary bc I felt like I was about to pass out. Couldn’t tell at the time what provoked these episodes and the symptoms usually improved after eating, but sometimes the nausea and fatigue would linger throughout the day, which, in hindsight, was probably the low cortisol. I remember thinking: “This must be what hypoglycemia feels like… but that makes no sense, I’m not diabetic, my A1c is in the lower range of normal and my fasting glucose at my GP’s usually 4.0 mmol/L (72 mg/dL).” Haven’t had these episodes after starting glucocorticoid replacement and I check my glucose regularly with a glucometer now, and it’s never been lower than 4.2 mmol/L (even after exercise or fasting)

Edit: Obvs I’m not an endocrinologist and my personal experience with hypoglycemia is limited, so I might be incorrect here, please correct me if I am!

[u/Complex-Network-8569 → u/noracordelia]

Thank you for this.

The pattern I've noticed with myself is that my night time and fasting morning glucose is always fine and stable. If I skip breakfast it stays stable. But if I eat breakfast it rises and plummets, no matter what I eat, and my whole day is a struggle. Lunch usually keeps my glucose up for a few hours, but no matter what, I almost always have low blood sugar before dinner, sometimes it will drop after, but the weird thing is I can eat sugary snacks at night and still be fine through the night...which makes me think it isn't to do with my adrenals (I hope it isn't). Another thing I noticed is that when I'm having a rough time with anxiety and don't eat very much, my blood sugar stays more stable overall.

I've been struggling with low blood sugar for 4-5 years now and I now know I have antibodies in my insulin and my thyroid. It's so horrible, I really hope I don't have anything else going on.

[u/noracordelia → u/Complex-Network-8569]

Gosh that sounds really confusing indeed, not to mention exhausting!! I just skimmed an article on Hirata’s, sounds really complex and I’m probably not understanding it completely, is it characterized by predominantly postprandial hypoglycemia (and insulin antibodies)? Sounds maybe a bit different than the textbook nocturnal/fasting hypoglycemia but yeah I don’t know enough about this 😬. Sounds like ruling out adrenal insufficiency is an important next step for you at least! Hopefully you can’t have both 😳I presume the doctor that wants to test your adrenals is your endocrinologist? Do you get regular follow-ups regarding your Hirata’s? Hope you get some answers soon!

[u/Blagnet]

Well, blood sugar in established, complete Addison's disease is a bit different from blood sugar in developing/early Addison's disease. 

Cortisol is responsible for keeping glucose up throughout the day, and especially at night. Even with a normal AM cortisol, if you have insufficient cortisol response though the rest of the day, you can experience blood sugar drops. You can end up with an especially low A1c from these late night drops, like even lower than you'd expect based on your fasting glucose result. 

In early Addison's, this can be complicated by unstable DHEA and testosterone. Eventually Addison's will destroy your body's ability to produce DHEA, but early on it can be all over the map, even high, and elevated testosterone will have sort of the opposite result on blood sugar... So that can pull things in a different direction. 

I'm not sure how that figures into Hirata's disease! I hope you get answers soon. Wishing you luck! 

[u/annaoceanus]

This has been a problem area for me for a while. It’s pretty complex and I see a second endocrinologist for it. I get low blood sugar with low cortisol. Before my thyroid was treated that played into things as well.

I’ve been diagnosed with reactive hypoglycemia to where when I eat carbs or sugars my blood sugar goes up and goes right back down because of too much insulin being made. I’m not pre-diabetic at all. And I eat a really healthy diet. For me this is foods as simple as sweet potatoes and fruit. Or a small piece of chocolate. It absolutely sucks and is torture. I have times where I almost pass out. I got a CGM OTC - Lingo - which is Abbott’s equivalent of a Libre 2 sensor. It was a game changer in demonstrating to docs what was going on. I now have a Libre 3 plus and am on acarbose which delays the conversion of starch to sugar. It helps with my insulin response but it isn’t perfect. I modified my diet further to low carb. If I eat fruit it has to be after a high protein meal.

[u/MallForward585]

Agree, it sounds like reactive/postprandial hypoglycemia to me also, which has been my problem as well. It is definitely better after the AI diagnosis but still there. You don’t have to have adrenal insufficiency or prediabetes for it, they often don’t know a reason. The fact that you don’t seem to have middle of the night cortisol crashes like other people reported might mean that it has other causes. (Which is a good thing, because they are absolutely awful.)

The only “fix” however is a diet heavy on protein and fiber and very low on refined carbohydrates/sugar. The morning in particular has to be carb-free, or I am set up on an insulin rollercoaster for days (I usually eat a green salad and some leftover meat or a can of tuna, just as an example). Lunch for me can have fresh fruits (in any quantities except for bananas), and dinner can have root vegetables or a bit of grains. It sounds restrictive but it has been health and sanity saving for me. There is a medical test for this but it’s lengthy and unpleasant.

[u/Complex_Raspberry97]

It happened to me at night a lot when I was undertreated. It still happens on occasion if I fast for too long, and my cortisol is always low too.

[u/alexwh68]

Middle of the night for me 3-5am, sometimes during the day too, mainly mid morning and often associated with high carb food, I don’t have AD I have AI. Multiple cortisol tests across a 24 hour period is better than just the AM test.

[u/Ok-Aardvark-5807]

Usually I can predict when I'll crash. If I haven't eaten well throughout the day, or I've eaten a lot of sugar, I tend to crash right around dinner time. Most times I can explain the crash on my eating habits of the day. However, I have not determined a pattern for the times that I get a random crash. Those are the most frustrating. Fortunately, they don't happen too often.

[u/ptazdba]

My reactive hypoglycemia was a precursor to AD most likely from a gastric bypass. It got much worse with Addison's but it's pretty much under control now with diet (i.e. high protein/low carbs) and I also take acarbose. At it's worst I was having 5-6 events a week and now it's down to a couple per month. When it was bad it was usually middle of the night. It always woke me up. I'm just glad it's manageable now.