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Do I have reactive hypoglycemia?

Discussion in 'Reactive Hypoglycemia' started by frash_00, Mar 21, 2021.

  1. frash_00

    frash_00 · Member

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    Hi all, I could really use some help understanding what's going on. I'm on the edge of panic about this and really need to hear from others who have experienced this. I have an appointment with an Endocronologist on Tuesday, but would love any advice or understanding of what's going on from you all.

    Background: I was extremely overweight, 330 pounds at 6'2" tall. I also drank a ton of alcohol daily. I was diagnosed with T2 diabetes with an A1C around 10.4 in October 2019. I started on Metformin and a weight loss plan, and totally stopped drinking anything but water and I still only drink water. I lost 130 pounds by November 2020. I slowly reduced my Metformin as my sugar levels kept dropping. I would routinely wake up with sugar around 70-75, and my A1C was down to routinely in the range of 4.9 - 5.3. One night in December 2020 I woke up in the middle of the night and passed out and fell to the floor on the way to get some food, due to what I believed was low blood sugar. I was very fortunate to not get seriously hurt, I fell into a wall. My Metformin was reduced again, and now I'm off of all diabetes medication since February 3, 2021. Two weeks ago, I started getting a tingling in my lips and the tip of my tongue almost daily in the early afternoon. One week ago while I was out for a walk I suddenly had such low blood sugar I had to sit on the side of the road until my spouse got me sugar, which was scary. I now carry glucose tablets with me always. The day after that incident, about a week ago, I got a Dexcom G6. One other data point, I've had this tingling lips for about 2 weeks, and the past 4 weeks at work have been outrageously stressful, so it could be linked timing-wise to a stressful time period, or to the fact that I stopped Metformin in early February.

    Since I've had the experience of passing out and falling down, I'm extremely anxious about it happening again and I'm watching my blood sugar updates excessively. Whenever my blood sugar is dropping somewhat fast (3-5 mg/dl every 5 minutes) and it's down around 75 I start panicking and eating sugar so it doesn't get below 70. My blood sugar rarely gets above 130 after eating as long as I stay away from highly carby foods.

    Does this sound like reactive hypoglycemia to you all? Has anyone developed this condition after losing weight and getting off of Metformin? Has anyone developed this condition/these symptoms during a particularly stressful time period?

    Thank you so much.
     
    #1 frash_00, Mar 21, 2021 at 3:45 PM
    Last edited: Mar 21, 2021
  2. frash_00

    frash_00 · Member

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    Reading through the forum posts, I noticed a lot of folks tagged @Lamont D and @Brunneria so I thought I would do the same here.
     
  3. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi and welcome to the forum.
    What I can tell you is reactive hypoglycaemia is too much insulin.
    This is because food (carbs) trigger the overshoot of insulin, which in turn drives your blood sugar levels into Hypoglycaemia.
    The one description of getting out of bed and collapsing doesn't sound like it, but until you have the tests, you won't know. The tests are designed to eliminate other conditions. The reason I say this is because, if I haven't ate in at least five hours, my blood sugar levels will always normally be in normal levels. The fact that in the morning, you should be in normal levels as a non diabetic condition.

    Metformin will not cause the trigger.

    RH is caused by too much glucose after eating, which triggers the insulin overshoot.
    How that imbalance in your hormonal response, occurs is individual and not everyone gets the condition the same way.
    Those who have bariatric surgery, has been a cause, as is heliocobacter pylori, or because of having rollercoaster ride blood glucose levels up and down every day from morning to night for years and years. Going really high, then low, then high, low, high low. And so on your body adapts to this imbalance.

    Stress is not good for anyone, and it can raise blood levels, but so can too much exercise, being ill, adrenaline or thyroid issues.

    If you are getting episodes of hypoglycaemia, there could be many reasons for it.
    Ask your endocrinologist to recommend tests such as Hba1c, c-peptide and insulin levels and insulin resistance. If he suspects RH, a six hours glucose tolerance test will confirm that you do go hypo. It will also track your blood glucose levels.
    If your endo suggests a two hour glucose tolerance test, it is not long enough, because if it is similar to my RH, they won't see the hypo. I go hypo about three to four hours after the glucose.

    There is a lot of information on our forum, I suggest you have a read, also Wikipedia has a good description of the condition, but I wouldn't try the recommended dietary advice. I am on a Keto diet, and my blood sugar levels are in normal blood sugar levels and stay there. No carbs, no trigger, no spike, no insulin overshoot, no hypo!

    Hope this helps.

    Stay safe
     
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  4. frash_00

    frash_00 · Member

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    Thank you for the detailed and quick response @Lamont D !

    I cannot find any papers talking about the link of reactive hypoglycemia and gastric bypass. Did they identify why that surgery may cause RH? Is it the significant amount of weight loss, or some other aspect of that surgery that causes it?

    My doctor though the episode where I collapsed in the middle of the night was due to low blood sugar from being on too high of a dose of Metformin.

    Also, I believe Metformin affects how effective insulin is... I think it makes it more effective. So, I imagine getting off of Metformin reduces insulin's effectiveness in the body. Is it possible that after getting off Metformin that my body because less efficient using insulin and so now it's creating more of it to compensate, causing this?
     
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  5. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    I assure you it is not the metformin, it is a very small amount it just won't make much difference. Your doctor has got it wrong.
    I also don't believe it's because the cause of your hormonal response. It is more likely to be insulin resistance.

    There have been a few on here that have had bariatric surgery and was the cause of RH.
    But if you go to Wikipedia, search for reactive hypoglycaemia and bariatric surgery.
    Read up on insulin resistance.
    Regardless of all that, as you are already on a low carb diet, are you low enough to stop the symptoms?

    Stay safe.
     
  6. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    As far as I am aware, it is over production of insulin that will drive blood sugar levels down into hypoglycaemia. I don't believe that there is another hormone that does that.
     
  7. Brunneria

    Brunneria Other · Guru
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    Hi and welcome @frash_00

    no one here can diagnose you (I am sure you realised that already! :D) so all we can really do is discuss ideas and possibilities.

    for some reason the symptoms of tingling tongue and lips is ringing bells with me as a symptom of something not related to blood glucose. Food intolerance? Vitamin deficiency? I am sorry. Memory fails me. You might want to Google though.

    on the subject of vitamins, you may find it interesting to read about Metformin, B12 and B12 deficiency.

    can you confirm that you have tested and found your blood glucose to be low when you have these symptoms?
    And that the full range of symptoms you describe disappear when your bg rises again?
    Can you also confirm that the tingling you describe is definitely linked to bg levels, proven on a glucometer, and come and go to match those bg levels?

    has your doc also eliminated low blood pressure? There is a low blood pressure issues which occurs when people rise from lying prone - typically getting up in the night to go to the bathroom - and may cause falls, fainting and injury. Very distressing!

    sorry for the inquisition, but I couldn’t make all the info I have asked for from your post.

    I suggest you do a bit of reading on insulin resistance. Personally, I would be surprised if your weight loss hasn’t significantly reduced your IR, so it would be a puzzle if it had risen without something significant happening. Metformin lowers IR, so stopping Metformin may make a difference, but your symptoms started before you ceased the Metformin...
     
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  8. frash_00

    frash_00 · Member

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    Thank you, I did just go read some papers on bariatric surgery and reactive hypoglycemia. It's concerning how little they know about how they are related, and there is no consensus on treatment.
     
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  9. frash_00

    frash_00 · Member

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    Thank you for the response! I have been looking into the tingling lips on google. I will be sure to ask my doctors about it, as well. Unfortunately I cannot see the neurologist I want to see until September :( but I do see a new endocronologist tomorrow.

    I can't say I've definitively linked the lips tingling to a pattern in my blood glucose. I am starting to jot down times where I notice it so I can cross-reference it to my Dexcom blood glucose charts.

    I have tested my blood sugar on some of these occasions that i think are due to low blood sugar, and my sugar was around 70 or below.

    My doctor did not rule out low blood pressure. I did have low blood pressure at that time/ around 110/67. I didn't feel weird immediately when I stood up like I have before when I had low blood pressure, it was like 2-3 minutes after standing up. I had enough time to get to the toilet from my bed before feeling off.
     
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  10. frash_00

    frash_00 · Member

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    Hey all- quick update here. I did pretty low carb today, and my blood sugar has been ultra stable around 85-90 all day. I've had ~400 calorie meals, and 2 small snacks in between. I have not had any crashes yet after a meal today.

    It's just one day so just one small data point, but I'm hopeful that the diet change is helping. Please let it help.
     
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  11. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    It won't do you no harm, and the symptoms should ease a little bit at a time. It's a marathon not a sprint.
    Let us know how you get on.

    Keep safe
     
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  12. frash_00

    frash_00 · Member

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    Day two of low carb and I have not (yet) had a blood sugar crash. I did have an appointment with an Endocronologist. The main tangible results of the meeting was that he will order some blood work, and has asked me to scrupulously document numbers from a meter when my Dexcom G6 numbers are below 70. So, apparently, when my numbers are low and I'm panicked, I need to go wash my hands, dry my hands, and steadily use my glucometer. That was frustrating but I understand wanting more trusted data. I do have a few occasions where my numbers were low on the glucometer, but he wants more data. He said he was hesitant to order any of the tests that require me to come to a hospital, like a glucose drink test, because they are full due to COVID. I had not considered that. He did tell me to stop eating low carb, essentially so I can cause it to happen again so I can get the data. Very frustrating. He spent so much time telling me about the non-blood-sugar causes of passing out, so he's going to refer me to a cardiologist and further tests with a neurologist.
     
  13. Brunneria

    Brunneria Other · Guru
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    Good to hear your endo is looking a bit deeper. :)

    I am afraid that blood testing when hypo is a necessary part of being hypo. I have seen members on here say that, with time, it becomes automatic.

    His point about going into hospital for the extended glucose tolerance test is a very valid one, at the moment, but even without it you can do a lot of investigation by yourself, armed only with your Dexcom, a food diary, and your glucometer as backup confirmation.

    Of course, it is up to you whether you start carbs again. I completely understand your reluctance, but it may be the only way you can actually prove, with data, what is going on, whether that is hypos, or eliminating them as a possibility for your symptoms. Doctors need data nowadays, or they don't consider they have enough evidence for a diagnosis.

    Let us know how you get on?
     
  14. frash_00

    frash_00 · Member

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    Hi all- quick update. I had some bloodwork done, and my ACTH and Cortisol came back in normal ranges, but my Insulin-Like Growth Factor 1 (IGF-1) came back well above the normal range, at 350 ng/mL. Looking at some literature, it seems like this is typically seen in folks who have bariatric surgery and then develop reactive hypoglycemia. I haven't had that surgery but did lose 130 pounds. Has anyone else had similarly high IGF-1 numbers, and if so what did that mean for you?
     
  15. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    There are a few reasons why people get RH. Not only surgery.
    And I don't believe that weight loss is giving you the symptoms you are having.

    IGF-1 helps insulin with controlling bloods levels in adults and is an important hormone especially for growth in children, because it is a growth hormone and maintaining levels.
    What I know is that if you have a certain balance of growth hormone and IGF-1 that is high along with other other hormonal imbalances, most diagnosing doctors would assume that you have diabetes and is uncontrolled.
    Or it could be diagnosed as hypothyroidism or your liver is dumping the hormone.

    If you consider, that when I was diagnosed my balance of hormones was all over the place, because of insulin resistance and insulin response, my blood levels were up and down and depending on when I had my bloods taken, my blood would have either not enough insulin to stop my glucose spike, then the overshoot of insulin that would drive me into Hypoglycaemia. So when I had my bloods taken as my blood levels spikes, this would show up as uncontrolled diabetes. This was why I was misdiagnosed with T2.

    At this time, I would wait for your doctor to see you again and see what tests he wants to do. Meanwhile keep up with the low carb diet.

    Stay safe.
     
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