Dysautonomia and low blood sugar

[Alana]

No doctor will give me an answer on this.  I keep getting episodes where I'm shaky, anxious, insanely hungry,   and hot, all fixed by sugar.  My labs are norma but I know its low blood sugar,  during these episodes Im so freaked out I forget to check my blood sugar.  Is this common with pots and what should I ask my doctor to look into? 

[Pistol]

Hypoglycemia is not uncommon in dysautonomia. The best diagnosis is based on symptoms and a fingerstick bloodsugar when you have symptoms. I get this so often that I immediately eat a high protein snack ( like cheese  ) and juice or grapes followed by a salty carb. This helps within minutes. Your doctor can order a glucose intolerance test if he feels this might be helpful.  

[MomtoGiuliana]

These symptoms do seem to be common for POTS patients.  I also experienced this.  I had 2 glucose challenge tests however that did not show anything unusual with my blood glucose levels. 

One nurse I recall suggested that it could be caused by rapid change in blood glucose without my blood levels actually becoming low enough to be considered hypoglycemia but still causing symptoms.

There is also something called reactive hypoglycemia:

https://www.mayoclinic.org/diseases-conditions/diabetes/expert-answers/reactive-hypoglycemia/faq-20057778

My endocrinologist claimed my symptoms were simply mimicking reactive hypoglycemia.  I never really understood what he meant by this.  He did recommend that I increase proteins and fats in my diet and that did seem to help with the symptoms.  For me this was all going on during pregnancy and post partum when things are in flux anyway.

[Lily]

Do you have hyperPOTS?  Perhaps your body is overreacting to a normal drop in blood sugar, and cranking out stress hormones when it doesn't need to.  I second the recommendation to decrease carbs and increase fats.  That will keep your insulin and blood glucose more stable.   

[Alana]

I do have hyper pots,  stress definitely triggers it.  I have to eat every few hours and I'm always eating cheese because its the only protein I can have that doesn't bother my stomach and actually keeps me feeling energized.  Everywhere we go I have to worry about when I last ate,  did I bring enough food, will there be food where were at... Ect it's always on my mind making sure I don't get an episode 

[gackedo]

My doctor told me that many people with POTS complain about these symptoms when the body is cranking out extra Norepe to combat orthostatic changes.  He did ask me to borrow someone’ps glucometer and check my blood sugar level when I get those symptoms. For me however my glucose levels do drop to the low 40s when I am symptomatic.  So now I try to avoid concentrated sugars and I don’t have to much trouble anymore. 

[yogini]

I don't have low blood sugar but I get these symptoms too.  I am not sure the doctor will be able to shed any light as I've never seen any explanation.  

[Lily]

I used to have this "idiopathic postprandial syndrome" symptoms all the time (reactive hypoglycemia symptoms with normal blood glucose readings).  Idon't get these symptoms anymore, though, as long as I eat low carb (< 150 g per day), high fat, and no processed food.

[Pistol]

I also would like to point out that frequent small meals rather than 3 big meals is much better tolerated by people with dysautonomia, it helps with hypoglycemia, GI issues like GERD or IBS and minimizes BP drops after eating. Plus it is a lot easier to " eat a rainbow" when you graze all day. 

[Bluebonnet08]

Before I got my diagnosis, I thought I had some kind of hypoglycemia, turns out, this is part of POTS.   I cannot eat high carb or high sugar meals.  I also can't eat large meals or I will get terrible episodes.  It's gotten worse towards the end of pregnancy, but the symptoms are improved but cutting meals in half, which you could try as well.

[TaraJean512]

On 4/4/2018 at 2:32 AM, Alana said:

No doctor will give me an answer on this.  I keep getting episodes where I'm shaky, anxious, insanely hungry,   and hot, all fixed by sugar.  My labs are norma but I know its low blood sugar,  during these episodes Im so freaked out I forget to check my blood sugar.  Is this common with pots and what should I ask my doctor to look into? 

Omg this is me too!! At first my doctor thought it could maybe some form of seizure because my arms get so shakey. They feel weak, I get sort of confused, light headed, suddenly feel exhausted, I am starving, anxious (palpitations) and I have to sit/lay down. I have found, personally, it's because I need SALT. I buy LiquidIV (pouches of a salty, electrolyte type of drink mix, each one has 500mg of sodium) and I pour 2 into a glass & fill it with water. (If your episode is really bad just do like 2 cups (16oz) of water so you get the salt down more quickly, but definitely keep drinking water. This literally makes these "episodes" as I call them go away within a matter of minutes and I'm back to feeling totally normal within 15 minutes if not sooner. (Everyone is different though.) But I encourage you to try this if you don't have any clue what's going on and have POTS. Also, after drinking the Liquid IV, a salty snack wouldn't hurt to help with the hunger. Crackers, a pickle anything salty. I keep a bottle/ pitcher of water near where I sit/work most of the day and I have the salt packets stashed all over the house & in my purse. My understanding is the more we stay on top of getting enough salt these episodes should happen less ,,& less. I TRY to have 2 IV packets everyday on the morning to sort of jump start the day. And haven't been having these symptoms hardly at all.  I really hope this helps you!! 

[sandra.p29]

I have struggled tremendously with food; wondered if anyone has tried keto diet for dysautonomia or is too low carb counterproductive.  

[Pistol]

@sandra.p29 - there are many posts on this subject on this forum. Most have found that carbs make our symptoms worse. This is most likely due to carbs needing a lot of energy to be digested. Normally after eating the parasympathetic nervous system ( PNS ) takes over and directs more blood to the gut to aide in digestion. In some forms of dysautonomia or POTS this can cause an abnormal compensation by the sympathetic nervous system ( SNS ) and result in dumping of adrenaline. That of course can give us a myriad of bad symptoms. 

I personally have found that avoiding carbs and going with protein and easy to digest vegetables can prevent the worst symptoms. I also avoid large meals, or three meals a day. Instead I eat every 2 hours a light but protein-rich snack and avoid eating too much at meal times. For example: if the meal is baked potato, chicken and green beans I may eat only the chicken and green beans but eat a half baked potato later as a snack. For me that is better than eating a smaller amount of all three foods. In addition to helping with the POTS symptoms and adrenaline surges this regimen has also helped with my dysautonomia-related GI issues. 

When I was at my worst I consulted a dietician at the local hospital who helped me figure out the best foods to eat in my particular case and this was very helpful.