1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2022 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Another "am I the only one?" question

Discussion in 'Reactive Hypoglycemia' started by Sue777, Jun 1, 2018.

  1. Sue777

    Sue777 · Member

    Messages:
    11
    Likes Received:
    0
    Trophy Points:
    21
    So I've been eating keto for a month now, before that I was eating keto for 5 months but then fell out of ketosis and stayed out for about 2 weeks.

    In the past 10 days or so I have had 3 really bad reactive hypo crashes (or at least that's what I think they are) and I'm trying to figure out what I'm doing wrong so I can stop them from happening. I know last night I had a fat bomb dessert made with Swerve (erythritol) and thinking back to the other two episodes I may have had one the night before those, too. Obviously I'm going to stop eating those and see if I can stop having these but it doesn't make sense because from everything I've read, that's the safest artificial sweetener regarding insulin responses! Then again, everyone's chemistry is different, so maybe I'm one of the unlucky ones that can't eat that?

    Even though "studies" show that they don't cause BG spikes, do some bodies still react just from the taste of sweetness? The mind is a powerful thing, perhaps my tastebuds are telling my body to send in the insulin?

    Sorry, second question: is there a TEST for reactive hypo? I test my blood before, during and after these episodes and they're always "normal" but I've been having these most of my life and always seemed to be sugar/carb related. Low carb/keto should be my best bet but right now it's not doing me any favors, either. :(
    Sue
     
  2. Ivey

    Ivey Reactive hypoglycemia · Member

    Messages:
    11
    Likes Received:
    2
    Trophy Points:
    43
    I am a reactive hypoglycemic. By keeping a food diary of everything I ate, we figured out it is carbs and high fats that drop my glucose levels. I had a 72hr fasting glucose test and my glucose on the 4th day dropped to 58, and when they fed me oatmeal at the hospital I dropped to 32. They had to inject me with glucagon, and I see a nutritionist every month. They are thinking about putting me on a carb blocker since my reaction is so severe. I can not eat oatmeal, plantains, bananas, rice of any kind, lentils or beans of any kind, wheat, barley, rye, bulgar, corn, corn starch, potatoes of any kind including sweet potatoes, bran, full fat cheeses, milk, ice cream, breads, pasta, cake, cookies, crackers, soy sauce, gravy etc. Basically all the delicious things in life I can no longer enjoy and no more alcohol.

    I have had swerve and have had no effect on me, but everyone is different. It could be the fat in your fat bomb. Try no fat bombs for a few days but try having the swerve in a hot drink like coffee or tea and check your glucose levels before you have the drink, the check 30 mins after, then again 2hrs after, then 4hrs after. If your glucose is normal it may be the fat bomb and not the swerve. Then try a fat bomb and do the same test your glucose before, 30 mins after, 2hrs after than 4hrs after. So if you have it at 1pm test at 1pm, then test at 1:30pm, then at 3:30pm then again at 5:30pm. You may have to try each ingredient you used to make the fat bomb to see what it is you are reacting too.

    There are a lot of hidden sugars and hidden carbs in foods that you think are innocent. I had a reactive hypo incident on the subway platform. I started sweating and collapsed, I tested my glucose it was 32 but I had eat a yogurt and hour before so I had some hard candy to get me back up until I could get home and eat. I read the label on the yogurt it wasn't high in fat, wasn't high in sugar but one of the ingredients listed was corn starch. Who knew they put corn starch in some yogurts, so now that is on my list as well to watch out for. I have to read every thing so carefully on labels and not just the calorie, sugar, protein and fat content like I use to.I hope this helps you.

    Take care, Ivey
     
  3. Sue777

    Sue777 · Member

    Messages:
    11
    Likes Received:
    0
    Trophy Points:
    21
    Thanks for the reply, Ivey. Wow, that sounds awful... I'm so sorry you have so many restrictions but luckily you now know what you can and can't eat and can spend most of your time feeling healthy. So if you react badly to fats, then what DO you eat? Most hypoglycemics find that the ketogenic diet works for them but that's high fat so I guess you're not doing that?
    Sue
     
  4. Ivey

    Ivey Reactive hypoglycemia · Member

    Messages:
    11
    Likes Received:
    2
    Trophy Points:
    43

    Hi Sue, No I am not doing Keto. I did think about it and in a way I am but not really as you said I can't do the high fats. My reactive hypoglycemia comes as a rare side effect of gastric bypass surgery. The weight loss surgery so my diet was already limited and is now even more limited. I cook with either water (so lots of boiling or steaming), grilling or stir frying in olive oil, canola oil and can eat a small amount of avocados. I can't do more than 2 tablespoons of oil when cooking or I get dumping syndrome and my glucose drops. Same with Carbs. I can do one slice of regular bacon which was a lovely treat!! It's all trial and error right now with me and every time I try a new food or new method of cooking I learn what does and doesn't work for me. I eat a lot of nuts, seeds, eggs, green leafy veg, salads, canned tuna in water, salmon, lamb, chicken, small amount of carrots, peas, green beans, edamame, bean sprouts, bamboo shoots, water chestnuts, mushrooms, spinach, ginger, garlic, onions, green and red peppers, water crest, cilantro etc. I have never been a big red meat fan but (I need to eat some more of it according to my doctor) I did find I enjoyed bison meat!

    I discovered my body's reaction to fats on my birthday when I treated myself after 2 years to 2 spoonfuls of haagen daz! I was so sad that my glucose dropped and read the ingredients and the only thing we could think of was the fat content so we tried taking me to an ice cream shop and we tested me before I ate the ice cream and by my 3rd taste I started shaking and my glucose dropped. We also tried me eating a small piece of regular full fat cheddar cheese and my glucose dropped so then we knew for sure it was the fat content.

    I find a lot of Keto recipes and low carb recipes on Delish and modify them to fit my needs and had been really helpful to put a bigger variety of dishes in my set. Else I would be eating eggs, tuna, salad and yogurt all day! I find now I eat more than I did pre-surgery and having to eat every 3hrs is driving me crazy. I am still not use to having to stop what I am doing to accommodate food, I resent it if I am honest.

    Ivey
     
    • Like Like x 1
  5. Lamont D

    Lamont D Reactive hypoglycemia · Master

    Messages:
    13,488
    Likes Received:
    16,391
    Trophy Points:
    298
    There are a number of tests, all of them are done under supervision in hospital, blood panels, c-peptide, eOGTT, fasting test, breakfast test, food tolerance tests and allergy tests, the one that should be used more is the test for hyperinsulinaemia and insulin levels, as in how high it is after eating, when and which foods trigger the insulin overshoot!
    If you are eating keto, your blood glucose levels should be in normal levels.
     
  6. Lamont D

    Lamont D Reactive hypoglycemia · Master

    Messages:
    13,488
    Likes Received:
    16,391
    Trophy Points:
    298
    Hi @Ivey and welcome to the forum.
    As you have discovered, we all have a variant of RH, that I believe everyone has a different tolerance to carbs, protein and fat, finding that balance to what suits you, is the most important factor in how we deal with the symptoms and condition.
    Yours was because of your gastric surgery, mine was I believe a bacterial infection in my stomach, but that is speculation.
    However finding the reason and having the knowledge in how best to cope.
    Fats, have been discussed widely on the open forum, for how much you should have, I began, just upping my saturated fat and avoiding vegetable oils. They I found was giving me symptoms and were not healthy for me, I found the oils distorted my readings, so I decided then that only saturated fats were in my food, and how I cook with them. I got much lower readings this way.
    I have always believed that having a little bit more than you used to have to slowly build up your body to accept the natural saturated fats.
    You have to remember that low fat foods have the good natural saturated fats taken out, and production sugars are introduced for taste.
    Eating every three hours is the recognised standard treatment for any form of RH.
    This is to prevent the hypos from occurring. But I have found that being in ketosis is the only way to prevent hypos. If you trigger the insulin response from your meals, that will give you the overshoot you don't need or want. No hyper, no hypo!
    When you start eating in the morning, you are starting the rollercoaster of blood glucose levels, you have started the day in normal levels, you have not had food during the night, why do you need to eat so often?, again you eat, so the advice to eat every three hours, but if you eat and don't trigger the insulin response, you don't need to eat every three hours.
    I have found that I can fast most of the day and eat Keto, and I have not had a hypo since my last eOGTT, over four years ago.
    I should say that I'm not an expert on how those who have had surgery should approach their dietary intake, but from a RH patient who has no problem with his health, maybe a little bit more experimentation and recording may be needed to stop that rollercoaster.

    Best wishes
     
    • Like Like x 1
  7. Sue777

    Sue777 · Member

    Messages:
    11
    Likes Received:
    0
    Trophy Points:
    21
    Hi Lamont.
    Is there a test for RH? Doing my own BG prick tests don't work because they always come back in normal range (not complaining about that, but when I feel that bad you would think I would have some validation). Next time I see my doc, is there a test I should ask for or would I have to do some 72 hour fast test?
     
  8. Lamont D

    Lamont D Reactive hypoglycemia · Master

    Messages:
    13,488
    Likes Received:
    16,391
    Trophy Points:
    298
    As far as I'm aware there is no test that can say for definite, that is RH!
    It is a series of tests that eliminate other conditions, such as the extended oral glucose tolerance test. This test defines what happens when from fasting, your blood glucose levels spike and then go into Hypoglycaemia. If you don't go hypo, you don't have RH. So the next test after that is probably a fasting test, 72 hours, if you go hypo when fasting, then it is not RH. They are elimination tests for diagnosis. If it not something else, it is RH! Don't forget when doing the rounds of blood tests, which includes c-peptide, during the glucose tolerance test these blood vials are sent off for lab tests, to see if your blood has anything that should not be normal. Including insulin levels, hormones, deficiencies in iron and so on.

    Best wishes
     
    • Like Like x 1
  9. Ivey

    Ivey Reactive hypoglycemia · Member

    Messages:
    11
    Likes Received:
    2
    Trophy Points:
    43

    Hi Lamont,

    Thanks for that info, yes it's all trial and error at the moment for me. I can't eat processed food so I cook from scratch and I do fast a lot as some times I am too tired, or still full from my last meal to eat and my glucose levels are fine, even though my bariatric nutritionist seems to differ with my hospital based facts! I did the 72hr fasting glucose test and they actually kept me in 4 days and the lowest I dropped was a 51 and was walking and talking. I am still learning the signs for when my glucose levels are dropping. Sometimes I sweat, sometimes it's blurry vision, or wanting to faint but it's the shaking I notice the most. The others are kind of like my vasovagal syncope so I have to test glucose and blood pressure. I try something new either a new form of fat or a carb (as my nutrients insists) and check and see what happens, I log it in my glucose diary and now have noticed that sometime my glucose drops when I do my daily walking, but if I fast and do my walking I am good glucose is perfect. I see my Endocrinologist this week to ask him all about this but according to all the test results there is nothing wrong with my endocrine system, so the only last place to check is a neurological problem and if that comes up all clear then it's all the result of the gastric bypass as to why I am hypoglycemic and orthostatic hypotensive with vasovagal syncope. I just want to stop fainting and collapsing. I did the surgery not to lose weight but for health reasons. All my doctors were if you lose weight my PCOS, my arthritis, my radiculopathy, my fibromyalgia and sleep apnea will get better. The only thing that got better was the sleep apnea which didn't bother me (I didn't even know I had it) everything got worse.

    One of the things with gastric bypass is that if you have too much fat or sugar you get "dumping syndrome" so you either vomit up everything you just ate or you get really bad diarrhea. I am lucky I vomit and not get the diarrhea but I vomit up a lot of foods even sometimes water if my stomach is still irritated from the day before so I fast and then just take the lecture from the nutritionist. I am going to ask my Endo doctor to send my nutritionist a letter to explain to her that it is ok for me to fast and to get off my back about her carbs!! I swear I think she is either married to a sweet potato farmer or has stock in them as she is always pushing them on me!! She also has me on a sugar free diet so no sugar at all ( I was using peanut butter with a bit of money to raise my glucose when it dropped but she didn't like that at all), so when my glucose drops I don't know what to do except eat a cucumber or a handful of lettuce. For me it's all a guessing game and just writing everything down and now I am adding if I went out for a walk to my diary and just checking my BP (blood pressure) and glucose levels. I never ate so much in my life!! There are days I don't want to eat or drink at all. I appreciate the fact that I am not the only one that glucose levels are fine with fasting!! They were trying to convince me that wasn't right just like my nutritionist thinks the carbs dropping my glucose levels isn't right either but my end doctor agreed with me especially when he saw it happen at the hospital!

    Many Thanks,

    Ivey
     
    • Hug Hug x 1
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook