Help With Reactive Hypoglycemia in Non-Diabetic?


#1

Hi everyone, I’m new here. I joined because I wanted some help/feedback/thoughts on some issues I have been having for the past year with hypoglycemia and reactive hypoglycemia. I have Hashimoto’s disease, and my thyroid is off, so I’m not sure if it’s related to that or if it’s something separate. At 14, I was diagnosed with hyperinsulinism through an OGTT, but I don’t know the details of the diagnosis or what actually happened during the OGTT (I just remember getting horribly sick during the OGTT test).

Anyway, my reactive hypoglycemia has been getting increasingly worse in the past few months. I ended up buying a bg meter (Freestyle Lite) and testing my bg. Sometimes I end up testing 15 times a day because my bg can be so unpredictable, but most of my issues revolve around eating. Even low carb meals can cause hypos. I’ve read for hypothyroid it’s best to keep bg 85 or above, but I am lucky if I can keep it above 80 without eating constantly. Fasting bg is in normal range. Fasting A1C, C-peptide, and insulin are normal. First thing in the morning my bg is usually in the lower 90’s. So all normal.

Anyway, more details on the reactive hypoglycemia… My bg sometimes doesn’t change at all after eating, or it will go slightly lower (85 before meal, 70 after meal). But the other day I reached a new bg low. 2.5 hours after dinner, my bg was 131. My bg tends to be higher for longer in the evenings for some reason, so I wasn’t greatly concerned. 20min later I start feeling really nauseous. I check my bg and it’s 58. It’s the first time I’ve had a reading below 60. Adrenaline kicks in (heart palpitations and sweating) and slowly brings my bg back up to 84 an hour later, but it seems whenever I have these lows, my body relies completely on adrenaline to bring my bg back up. I’m not sure if that’s normal either?

Anyway, on Thursday I am seeing my endocrinologist again. Last I heard from him was 6 weeks ago, he asked me to call him and he said he was really worried about my hypoglycemic episodes, and then goes MIA while his office is moving :joy: I’m going to ask him to test for LADA-related antibodies. I read about a case study that was very similar to what’s happening to me. But these episodes are becoming more frequent and are starting to keep me from going too far from my house, and they are starting to freak me out a bit. It started with episodes in the middle of the night where I would wake up drenched in sweat, even when it got cold at night.

Sorry my post isn’t very organized, but I wanted to get some feedback from other people, because I’ve tried to email my doctor and he won’t respond… :frowning: And I don’t know what to do. When I try to correct my reactive hypoglycemia with glucose tablets, I usually end up causing another reactive episode :disappointed_relieved: So right now I just wait for my body to figure it out, which isn’t great haha. I’ve made a lot of dietary adjustments, going from moderate carb to low carb to virtually no carb… I’m sticking to just eating vegetables, fish and nuts right now basically, but I also eat gluten free (wheat allergy), so eating is becoming harder… I walk 1-2 miles 5 days a week. I wanted to start biking to work, but I’ve put that on hold because of my bg issues. I’m having problems with brain fog, memory, and fatigue (could be thyroid related…?)

Thanks in advance for any responses!


#2

I had non reactive lows 15 years before type 1 / dka. The lowest was 38. But I did not feel that bad. I just ate some carbs/fat/protein and felt better. But I knew something was off, I thought it was from not eating in active periods.

It is good you are testing for type1. I have hashis too and I had symptoms for years but no one diagnosed it. When you are low your liver will raise bg via glucagon. The adrenalin is a reaction to the low. I never had much of that until insulin which is 50 mil x worse. I did feel dizzy and nauseous etc.

Gluten and grain free is recommended for hashis and try to keep your tsh at 1 or below. You may need t3 as well. No soy and various other foods should be avoided.

Try some fruit or juice instead of glucose tabs for the lows.


#3

Hi meee, thanks so much for responding! Yeah, I feel the lows. Dizziness, nauscea, feeling like I will throw up, headache… I think that’s why my doctor is so concerned about them and they just seem to be happening with increasing frequency, but I wonder if some of it is from Hashi’s. It’s hard to say!

It’s interesting how often I have read people struggle with lows before being diagnosed with Type 1/LADA. The case study I mentioned was the same: bg would go up to 130 and then the lowest reading the patient had at home was 55 after a meal. She ended up testing positive for GAD65 antibodies and had severe reactive hypoglycemia during an OGTT (I think her bg dropped to 11). They diagnosed her with early stage LADA.

I think I need some followup bloodwork for the Hashi. Last time I was treated with synthroid my rT3 ended up high, but I never followed up on it because of insurance issues. I have been making so many dietary adjustments for this I feel like I can’t eat anything sometimes lol. And with my reactive lows, I’ve had to cut cereal out, which I was eating as a fallback if I didn’t have anything at home for dinner (which sadly is too often…)

Thanks for suggesting fruit or juice instead of glucose tabs! I will try it. Usually the adrenaline kicks in so fast that I don’t have time to react. The adrenaline response tends to make me feel sick too though and this has been going on for a few years now. Hopefully I get it figured out soon…


#4

Sounds awful. I hope the juice works. Juice can raise me pretty fast but if it is bad I use gt. But I know I will get Spike usually. Swirling juice etc in your mouth raises you faster. I would not eat cereal or any type of grains, they are bad for us. Simple Mills makes great almond flour gluten grain free crackers, and cookies. Siete makes great taco chips g& g free. And Simply Elizabeth has two grain gluten free granolas. Boltin House Farms has an unsweetened pea protein milk with 10g protein per cup and 1 gram carbs. Try lots of veggies, some protein and good fats. Yes definitely see if you need t3. It helped me alot, but I do need more insulin now.


#5

Have you got a good endocrinologist. You do sound unstable, if a low carb <50g/day doesn’t level it. google: insulin producing tumours …Ask your endo if this is a possibility

You can have a very wide diet on lchf or ketogenic, google can help there.


#6

I have been eating banana chips which have a pretty good carb to fat ratio. It seems to work better than glucose tablets. I rarely have juice around though so I haven’t tried it yet. I’ve also been staying away from rice but it’s hard! I’m trying to introduce rice back in my diet and it seems to be okay with lots of veggies. Just with protein and my blood sugar spikes (I say spikes, but it only goes to 145 or so) and then plummets though.
I talked to my endocrinologist about all this stuff and he said he wants more data before sending me off to do expensive hospital testing, which in some ways I appreciate but I am starting to get nervous about my bg trending downwards. So he said he wanted me to do an informal MMTT test at home… and I did… but it was a disaster. 15min after drinking it, my bg was 125. But then I ended up throwing everything I drank up 20min after drinking all of it. Then I just laid in bed trying to recover, but had all of my bg check alarms still set on my phone. So I checked 40min after drinking all of it and my bg was 29! I stumbled into the kitchen and took one or two glucose tablets (I don’t really remember everything very well, I was only half conscious) and ate a bunch of chocolate covered macadamia nuts and cashews. My bg came back up to 78 after about 10-15min. But adrenaline never kicked it!! So it makes me kinda nervous now because I have noticed adrenaline kicks in at inappropriate times (like when my bg is 84 and adrenaline raises it to 106 when I am just sitting around watching TV) and doesn’t kick in when my bg is low (like when it dropped to 29 or when it’s in the 60’s in the morning). I haven’t been able to get a hold of my doctor to talk to him about this and he has’t ordered the antibody tests yet :confused: But I am starting to get a little worried at this point…


#7

My endocrinologist… I’m not sure if he is good yet. I haven’t been seeing him for very long and he has been hard to get ahold of. He does suspect maybe an insulin-producing tumor but he said they can be incredibly difficult to detect and wants to run some other tests before trying to do expensive imaging that may yield no results. He’s working on getting a cgm for me right now


#8

That’s good. It will work out for you either way. The only other thing which you have probably worked out, is don’t take too much glucose when you are low. To cause another hypo a few hours later.

A bit of background.
https://www.merckmanuals.com/professional/endocrine-and-metabolic-disorders/diabetes-mellitus-and-disorders-of-carbohydrate-metabolism/hypoglycemia

If you are seeing under 45, I would stick to a ketogenic/very low carb. As the ketones may provide a buffer to hypo brain injuries. In this study they brought pigs down to 0.0 and humans down to 1 m/l or 18m/dl. I’d read this several times and further study this


#9

An insulinoma (aka insulin producing tumor) is what crossed my mind as well. The blood tests can be hard to get because, if I remember correctly, you have to get them when you are having a low blood sugar BEFORE they treat you (for the low blood sugar). Insulinomas are extremely rare. Most doctors will never see one in all the years they practice.
My grandmother had an insulinoma. I knew it before her doctors in the hospital did because I known someone with one before. They can be hard to find. Most of them are located in the pancreas or attached directly to the pancreas. It is extremely uncommon for them to be located elsewhere but, if they are, the next most common place for them to be is in the duodenal wall. I believe my grandmother’s was found in the tail of the pancreas but I don’t remember for sure.

The endocrinologist treating my grandmother had to seek another endocrinologist’s opinion because the treating endo had never dealt with one.

Usually surgery is done to remove them but, in my grandmother’s case, they couldn’t do surgery because of it’s location and previous scar tissue, and other medical issues. She ended up on dilantin 200 mg for the remainder of her life (she was 81 when she was diagnosed with the insulinoma). She lived another three to four years before succumbing to cardiovascular disease.


#10

You might try protein and fat (with a little carbs) to address the hypoglycemia. I know in the type 1 grit group many people use cashew nuts to prevent lows during sports. So may be worth a try to see how you do with these nuts.


#11

I was doing keto for a long time and faired very poorly on it. Then I read people with hypothyroid conditions (like me with Hashimoto’s) shouldn’t do keto, because the body’s metabolism is compromised by the thyroid not working properly. Even with well-managed hypothyroid, it is generally discouraged to go on keto diet.

I’ve learned (the hard way :joy:) to take glucose tablets with food. But I have been sticking mostly with banana chips when my bg is too low. Thanks for the article though! It was really interesting


#12

My endocrinologist actually has dealt with quite a few insulinomas before, but he isn’t entirely convinced. After my failed attempt at an informal MMTT and my bg plummeting to 29, he said he can justify to insurance getting a CT of my abdomen, so he has put in an order for that. So hopefully if it is an insulinoma it will be easy visible. I also pushed him to add GAD65 and islet cell antibodies to my bloodwork tests but he has started getting annoyed with me lol. I did a lot of reading on how the pancreas works, so if there is a problem with adrenaline not kicking in when bg is low it could be that the islet cells aren’t able to properly read bg. The islet cells are the ones that send signals to increase bg when it’s too low, so if they are damaged it would make sense that the adrenals don’t react to the low bg. I think it’s worth checking anyway


#13

It’s good you have an endo that has seen cases of it. I’m a little surprised that he isn’t being a little more aggressive in trying to get to the root of the problem. I found the list of tests that they will do if they catch you in a hypoglycemic episode (they aren’t of value if as diagnostic tools if your blood sugar isn’t low when they draw them):

  • glucose
  • insulin
  • C-Peptide
  • Beta-hydroxybuturate (BHOB)
  • Proinsulin
  • Sulfonylurea and meglitnide screen

From what I read, if they can’t get “catch” you in a hypoglycemic event to get these tests then they can do a 72 hour fast. You might be able to find some more information about this online. Mayo Clinic in Rochester will use this methodology so you may find some information there.

Another possible test is insulin antibodies but that doesn’t have to be done when you are having a low blood sugar. If I understand correctly, it doesn’t tell the cause but it can tell you what it’s not.


#14

I’m glad you said that because I have felt a little sidelined! It doesn’t feel like he is being very aggressive about finding the cause, and sometimes it feels like he isn’t even concerned about what’s happening to me. Not great :thinking:

He has mentioned the possibility of doing a 72 hour fast, but 3 days in the hospital is very expensive to do, so I am not super eager to go that route if we can avoid it. He did test for insulin antibodies and it came back negative. GAD65 antibodies are much more common statistically speaking in type 1 and LADA, which is why I insisted on getting those checked. He tested for celiac too but I read that if you eat gluten free for 6 months, the antibody levels will be undetectable and I have been GF for 3 or 4 years now. I got my CT scheduled today but it takes 2 weeks to get cleared by insurance so I have a couple weeks to wait before getting that done. I hope my bg of 29 after my failed attempt at an MMTT makes him a little more proactive in solving this…


#15

Wow!! In our state the insurance commissioner says they have to to decide faster than that. With some plans you can get “real time” answers.

The 72 hour fast could possibly initiated at home. You would have to have a serious discussion with your doctor to see if he feels that it would be safe for you to do so. From what I read, the Mayo Clinic in Rochester will do it in either an outpatient setting or inpatient, depending on the circumstances.


#16

Lol the state I live in doesn’t do anything efficiently. Or quickly. I thought 2 weeks seems like a long time but oh well.

My doctor didn’t mention much about the 72 hour fast because he said he doesn’t want to do that if we can avoid it. He hasn’t been very good about communicating. Unless I call his office number I can’t get a hold of him. He says he will email me and then doesn’t. :confused: Not sure what happens next unless we hit on something in bloodwork or the CT!


#17

I think you could read why low BG is bad for your brain and the link I gave. To how the brain can run on ketones and can be a buffer to brain damage. It is something to consider

I also don’t know if you did an official keto diet or something someone said was one.

I don’t know what you read about keto and Hashimoto’s but there are other opinions
google : Hashimoto’s ketogenic


#18

I am glad as you said below your endo is doing those tests. It is awful to go so low and have no clue whatnis going on. I guess eating the glucose will make an insulinoma crash you? I have to research it. Doing blood tests etc is not that much and ct scan, mri etc don’t need to be in a hospital.


#19

Wow. Just read the article you posted above. Excellent stuff.

Printing + taking a copy of it to my next endo appointment :+1:t3:. Finally a study that supports why I have no CNS symptoms when my BG runs quite comfortably at levels well under 3.0 mmol/L (54 mg/dl)

"The clinician is aware of some patients with glucose levels of 20-30 mg/dl (1.1 - 1.7 mmol/L) who are intellectually intact.

The human brain appears to adapt to the ambient glucose concentration to a remarkable degree. In fact, like A1C, which demonstrates glucose concentration to which the red cells have been exposed, the hypoglycemic threshold appears to integrate the glucose level to which the brain has been recently exposed.

Hypoglycemia with neurologic sequelae appears to be a relative and variable process and is not simply a function of circulating glucose levels."


#20

Luckily going down to 29 happened from very unusual circumstances. I don’t normally throw up an entire meal :joy: But I have had to stop going for my usual walks (I usually walk about 1.5 miles 5 days a week) because if my blood sugar is in the 70’s, after walking it’ll go down into the 60’s and then I won’t feel well. Like yesterday, I checked my bg and it was 78, so I ate some chocolate covered macadamia nuts (18g fat, 18g carbs, 2g protein) and then 15-20min later my bg was 72. :thinking: so I decided not to go on my usual lunchtime walk because I’ve made the mistake before of going even for a less than half mile walk and ending up at 60 and feeling dizzy.

I haven’t looked at the mechanics of an insulinoma. What perplexes me is that my adrenals fail to kick in when my bg is too low… Like when i went down to 29, I never got the adrenaline rush I sometimes randomly get when my bg is 80. It’s confusing and what’s worse is I don’t know how to counteract what’s happening while I’m waiting to figure it out. At the end of April I’m flying home and my travel time will be something like 18 hours. I’m really worried about how my bg will behave, because finding gf food at airports is pretty much impossible. I bought like 10 packs of beef jerky the other day for my trip :joy: hopefully at least by then I will have a cgm so I don’t constantly have to bleed myself to see what’s happening