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Another Idiopathic Postprandial Misfit

Discussion in 'Reactive Hypoglycemia' started by AZEric, Aug 5, 2020.

  1. AZEric

    AZEric · Member

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    I'm posting this for a couple reasons.

    1) There are a lot more of us out there than are known, because most people don't know they have it. Hopefully someone else will gain some info.
    2) There is not enough information on the Internet, or anywhere about this condition.

    I am now diagnosed, but it took 15 years for anyone to have any clue at all, and TBH, I am the one who researched it AND educated my doctors.

    Idiopathic Postprandial Syndrome/Adrenergic Postprandial Syndrome is in most cases misdiagnosed as Hypoglycemia. Shortly after eating any sort of carbohydrates, I'm sent into fight or flight mode, anxiety consumes me, I get confusion, disorientation, and almost feel drunk or drugged. My blood sugar never moves really.

    Every lab test I've been tested fasting at 99, 95, 97, etc, but have these crazy hypos symptoms, and even have to lie down to have the blood draw because I have passed out before.

    eAG = 114
    HBA1C = 5.6%

    Here are some of my readings:

    97, 101, 102, 93, 97, 88, 86, 85, 105, 85, 102, 90, 104, 97, 83, 88, 125, 94, 85, 101, 87, 137, 95, 85, 91, 81, 83, 82, 78, 88, 99, 89, 105, 89, 88, 86, 94, 82, 81, 81, 83, 92, 91

    Those are fasting, after meal, some 30 min after, some an hour, some two hours. My blood sugar never really moves much at all. I've never gone under 78, yet I get the feelings and panic of being extremely low, and like I need to call 911.

    I've been on the Keto diet for the last 3 months, and prior to that eating low carb. My endocrinologist gave me Acarbose to take if I wanted to eat carby food, but I have no interest in that at this time.

    I have no idea how it happened, or what else is going on in my body, but this is where I am at now. My blood pressure seems to be lower than a normal person, and I am aware that norepinepherine is involved somehow. I still don't understand what happens chemically in my body, that causes me to go into fight or flight, so I welcome any conversations with anyone else who has this, or is curious about it.

    Thanks, and happy to support anyone in any way here.

    Eric
     
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  2. Brunneria

    Brunneria Other · Moderator
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    Hi and welcome!

    your condition is a new one on me, and I am very, very impressed that you have achieved a diagnosis. That must have taken some dogged determination on your part.

    does keto / low carbing eliminate the problem? Or does it just reduce it?
     
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  3. JenniferM55

    JenniferM55 Type 2 · Well-Known Member

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    Thank you Eric, well done for digging your heals in and doing the research needed, it couldn't have been easy researching with such anxiety. Hope you've now been referred to a knowledgeable doctor. Welcome to the forum!
     
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  4. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi and welcome to our forum.

    When I was educating myself with my diagnosis of RH, I came across this as a diagnosis that was often called idiopathic postprandial Hypoglycaemia or syndrome.
    I wrote a thread on it to to make others aware that there are many conditions similar to the Hypoglycaemia, metabolic syndrome conditions.
    I vaguely remember we did have a poster who had definitely had the syndrome and he couldn't understand all the symptoms and blood glucose levels be in normal levels.
    We have also had others with hypoglycaemia that have been prescribed acerbose, the thinking is that because it does help with carbs digestion but does not stop the trigger
    As I have learned, that a carb is a carb and it doesn't matter whether it is low or GI, it is the carbs that causes the symptoms, the trigger and the hypos that follows, or in your case the symptoms of a hypo.
    These conditions have not had the research especially on treatment, the insistence of the majority of doctors to have carbs as a part of a healthy diet is still taught throughout the medical profession, well, I convinced my specialist endocrinologist that I am far healthier without carbs!
    Most doctors just follow the guidelines.
    Anxiety is really awful isn't it!
    Just going through it all again!

    Keep safe
     
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  5. AZEric

    AZEric · Member

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    Yes! Thank you. Its certainly been a process, and I have been working with many doctors. Unfortunately out of pocket, as even with health insurance this would not be something that they would allow me to pursue. They'd force me on antidepressants and be done with me. In January I will sign up for insurance again, to a plan that allows specialists, and force them to do their jobs. Yay, USA! Thank you for the reply.
     
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  6. AZEric

    AZEric · Member

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    Yes, thank you for your reply. Keto has reduced the symptoms by about 80%, so that is helpful. I am now working to make sure I'm incorporating everything I can into my diet, because eating the same 6 things is not healthy. I'll probably sign up to DietDoctor today so I can get access to tons of recipes for no carb. Although this is an awful thing, I have to live life and not let it fuel my depression.
     
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  7. AZEric

    AZEric · Member

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    Yes, its been very frustrating navigating the lack of nutritional training that doctors dont receive. Many of them would tell me that diet has nothing to do with it, but I would challenge them with "well why dont diabetics eat tons of sugar, and cardiac patients dont eat salt" and they'll get mad at me. A carb is definitely a carb, and when I have more than 20 a day, I am miserable. People need to understand that this is not a dangerous thing, outside of what the stress does to organs, which is not good. Like, I've never passed out, or ended up in an ER for this, but it sure as heck feels like you will when it happens. I've always been very involved with my health, so I have an entire kit for ensuring that I am OK when it happens. Blood Pressure cuffs, Oximeters, Blood sugar meters, Blood ketone meters, Etc. The gamut. And I track my vitals. Keto has helped tremendously, as has the lexapro for anxiety and depression. It was a deep dark hole spiral when I first got diagnosed, and even worse prior. I developed health anxiety/hypochondria from all of this, so now I'm doing therapy for that. I don't know if this can ever be reversed, so I'm just going to live, and whatever happens happens. Thanks for the reply!
     
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  8. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi again,
    Been there, done that and still wear the t-shirt!
    As far as I'm aware, I don't believe there is a cure or magic pill that will actually stop the chemical process that triggers the symptoms, most doctors can't work out that just because it is a intolerance to certain foods instead of a food allergy, the doctors would advise not eating an allergy problems. But do advise us about carbs. It is not logical, not realising the outcome of this treatment!
    On the one hand because I have a lactose intolerance, I was told not to have dairy, then I know that potatoes are my worst readings, they have told me constantly to eat them! Ridiculous!
    How can it not be dietary, you only get the symptoms after eating or drinking. Why do they use glucose in a glucose tolerance test? Because they know that it triggers the reaction!

    Keep safe
     
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  9. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    I have just started therapy myself, had my first counselling session this week.
    A lot has happened to me in the past few weeks, and my control took a severe dip.

    I am struggling about life at the moment.
    And the constant bombardment of life in general has knocked me for six.
    Anxiety through the roof!
    On meds now, to take the edge off the way I feel.

    Keep safe
     
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  10. Starke

    Starke · Newbie

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    Lamont,
    I have read many of your posts. You are a strong, resourceful, intelligent being. You got this. Sending you love.
     
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  11. Starke

    Starke · Newbie

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    Thank you for your post, research and initiative concerning your health. It’s the first time I have heard or read someone who has the same condition as I do.

    When my blood sugar is at 91, I’m usually already trembling inside, my coordination a mess, my brain fogged and my body in emergency mode. This happens if I don’t eat every four hours (sooner if I exercise or am exposed to heat) or if I eat anything with sugar, including natural sugars. For example, I can’t do veggies or carbs. The only carb I’ve found that I can handle is raw, whole grain, thick cut oatmeal. Like you, I also tend to have naturally low blood pressure.

    My husband has reactive hypoglycemia, but his has a different presentation to mine: he can go long hours without eating. If he eats sugars or carbs, his blood sugar levels drop to dangerous levels.

    We both have taken a lot of antibiotics in our lives, and I am wondering if that is (part of?) what caused the condition. I have done a lot to try to cure any imbalance in my gut due to the antibiotics, but perhaps it’s worth more attempts.

    I have periods where I am better and periods where it is worse (need to eat every two hours). At one point, after doing a mountain of different things all at the same time: acupuncture, ozone therapy, glutathione, vibrionics etc, I could actually eat salad, veggies, a bit of carbs or a bit of desert...if outweighed by protein and fat.

    I’m back to chicken, eggs, cheese, cacao, nuts Mungbean noodles, and a bit of raw, whole-grain oatmeal.

    Please share any findings you might come across.
    Wishing you health.
    Warmly,
    Starke
     
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  12. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi @Starke,
    Thanks for the backup, I need every bit of it!
    I have now been diagnosed with depression and anxiety, all because of the lockdown and losing my job, which was unbelievable and I found I just couldn't cope with facing life. I am not good. I have already had counselling and have been put on tablets.

    It is great that someone else who has the condition has posted on here. You can discuss about how you got here, the battles you had to endure, the doctors, your advice from them and what you have discovered. You never know there should be more people with the condition coming on here.

    With my Hypoglycaemia I am able to fast, a lot! I have found it better not to eat.
    I only use a window of six hours during afternoon and evening, where I have a couple of meals.

    If I was you, I would be careful about noodles and any grains. I have found regardless of being complex carbs they still trigger the reaction. Unless you have found them o.k.....

    I do believe and a lot of information I have read on our conditions that the gut biotic has a lot to do with how our endocrine system has altered over time, so that we became intolerant due to the imbalance in our hormonal response to carbs and sugar.
    I myself had a bacterial infection called heliocobacter pylori and the antibiotics that solved the infection could be the cause. I can't confirm this but it is a hypothesis that my endocrinologist has not dismissed.
    I cannot think of any other situation in my medical history, that could have done this.

    What tests have you had for diagnosis?

    Best wishes, take care, stay safe.
     
  13. AZEric

    AZEric · Member

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    Yes. I am currently pursuing the carnivore diet. Keto has been great, and I really limit my issues on it, but carnivore could end them all, as I've heard others have done so. Time will tell!
     
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  14. Starke

    Starke · Newbie

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    In regards to what tests I have had done: well my father, brother, uncle and husband are all doctors. Only my husband, who also suffers from reactive hypoglycemia, have supported me. The rest, as they haven’t studied it, don’t believe it exists or simply aren’t interested. The endocrinologist was too afraid of me dropping dead in her office to administer me the glucose test. She admitted to me, when I pressed her, that she had experience with RH, but that controlling diet was the only thing of which she knew. She offered me metformin and acarbose, if I wanted them, but added that she didn’t recommend either as I wasn’t a traditional candidate.


    I have no pancreas tumour, no stomach surgery, no thyroid issues... all blood work normal etc.


    I was vegan for many years. And have met other vegetarians who have developed RH.


    In answer to your sage advice about being wary of carbs and grains... whole, raw, thick cut oats are the only ones that seem to work for my husband or me. He can eat a cup of them and not eat for another 10 hours! Give him a molecule of tomato, or a grain of rice and he’s flat on his back...immediately, even before swallowing it. And his sugar doesn’t go back up.
     
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  15. Starke

    Starke · Newbie

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    Dear Lamont,

    I am so sorry to hear about you losing your job. And about the curve balls coming your way!


    My husband has mentioned to me that there is an emotional factor. He says a lot of people develop RH because of an emotional impact. For example, his friend, who is a biochemist, developed it one year before she got divorced. As soon as she managed to get the divorce, she was eating everything within a month: sugars, carbs, dessert etc. Only Swiss chard sent her on a crash.


    I know that during my good interval, where I could eat everything, albeit, outweighing dessert and carbs with protein and fat, I did a lot of inner work pertaining what I feel nourishes me in life and the sweetness in life... taking Louis Hayes concept that every “disease” has an emotional lesson, and if we learn the lesson, the cure happens or, at least, is more accesible.


    Certainly, with with so much uncertainty, and economic and social upheaval, I have found I had to dig my heels in to access sweetness and nourishment. And my blood sugar went really nuts for awhile there. I have been using a breathing app which during the toughest moments, I really enjoyed. I’ll see if I can post a link here.

    I’m not saying that I think my RH (or anyone’s) is purely emotional. There’s definitely a chemical component. But what controls the chemistry of my body...? Well, as the doctors can’t, the job is left up to me, by any way I can... to alter processes in my organism.

    QUOTE="Lamont D, post: 2295422, member: 85785"]Hi @Starke,
    Thanks for the backup, I need every bit of it!
    I have now been diagnosed with depression and anxiety, all because of the lockdown and losing my job, which was unbelievable and I found I just couldn't cope with facing life. I am not good. I have already had counselling and have been put on tablets.

    It is great that someone else who has the condition has posted on here. You can discuss about how you got here, the battles you had to endure, the doctors, your advice from them and what you have discovered. You never know there should be more people with the condition coming on here.

    With my Hypoglycaemia I am able to fast, a lot! I have found it better not to eat.
    I only use a window of six hours during afternoon and evening, where I have a couple of meals.

    If I was you, I would be careful about noodles and any grains. I have found regardless of being complex carbs they still trigger the reaction. Unless you have found them o.k.....

    I do believe and a lot of information I have read on our conditions that the gut biotic has a lot to do with how our endocrine system has altered over time, so that we became intolerant due to the imbalance in our hormonal response to carbs and sugar.
    I myself had a bacterial infection called heliocobacter pylori and the antibiotics that solved the infection could be the cause. I can't confirm this but it is a hypothesis that my endocrinologist has not dismissed.
    I cannot think of any other situation in my medical history, that could have done this.

    What tests have you had for diagnosis?

    Best wishes, take care, stay safe.[/QUOTE]
    In regards to what tests I have had done: well my father, brother, uncle and husband are all doctors. Only my husband, who also suffers from reactive hypoglycemia, have supported me. The rest, as they haven’t studied it, don’t believe it exists or simply aren’t interested. The endocrinologist was too afraid of me dropping dead in her office to administer me the glucose test. She admitted to me, when I pressed her, that she had experience with RH, but that controlling diet was the only thing of which she knew. She offered me metformin and acarbose, if I wanted them, but added that she didn’t recommend either as I wasn’t a traditional candidate.


    I have no pancreas tumour, no stomach surgery, no thyroid issues... all blood work normal etc.


    I was vegan for many years. And have met other vegetarians who have developed RH.


    In answer to your sage advice about being wary of carbs and grains... whole, raw, thick cut oats are the only ones that seem to work for my husband or me. He can eat a cup of them and not eat for another 10 hours! Give him a molecule of tomato, or a grain of rice and he’s flat on his back...immediately, even before swallowing it. And his sugar doesn’t go back up.
     
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  16. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi @Starke,
    I have read that RH can be familial, but I have never heard of a couple both having hypoglycaemic episodes.
    I have read that because of the symptoms that the brain will adapt to create different hormones that effect our brains functions, the likes of brain fog, memory loss, anxiety and depression can become more acute if dietary control is not used.
    Before diagnosis and good control, I can't remember much from that time. The first time I met my endocrinologist, he told me, that I was really ill, and needed to modify my diet and of course lose weight. I have read books, seen films, programmes and watched live sport, my children and grandchildren birthdays, Christmas and so on, just not there, but I can remember things before the turn of the century.
    It was my stay in hospital having a fasting test that the light bulb went on. Because I didn't go hypo after fasting for four days, my brain woke up and I found myself clear headed and the symptoms of anxiety cleared up.
    But this latest anxiety and depression is really a nightmare of how my brain is working. I just have never felt like this, so low!
    Of course, like everyone, I have had close family and friends depart and that is just what it feels like, I am going through an awful lot at the moment.

    I am taking Januvia to help me with my initial insulin response, this is a safe guard if I do take carbs without being aware of taking them.
    My endocrinologist had a study done on myself and another patient, and the results were published. The drug helped product insulin when needed. In all my previous glucose tolerance tests, my blood sugar levels would always go into double figures (mmols) from the glucose, but my last test, it only went up to 8mmols or around 160 in American numbers. But I still went hypo!
    Do have a look, because there is a YouTube video regarding Sitagliptin and reactive hypoglycaemia on there.

    I have never been vegan, quite the opposite, I can only eat salad vegetables, any vegetables cooked tastes awful. And strangely enough, potatoes are my nemesis, because of the starch, it spikes really high!


    Stay safe
     
  17. lindisfel

    lindisfel · Well-Known Member

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    Hi Lamont,
    I am sorry to hear you are going through a rough patch. Life can be very difficult at times. Try not to deal with too much too quickly, just one day at a time, sweet Jesus!

    The hard time will pass, I do so hope and pray things improve and light and brightness come into your life.

    Best wishes to you my friend and helper
    Derek W.

     
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  18. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    That is very kind and generous of you mate, taking it a day at a time is the best I can do, I seem to be having more dark days than light ones despite the meds I am taking, and I do believe they are helping, but it's gradually becoming harder to accept my situation. I will get through this, counselling is helping and support from family and friends and my doctor has been great.
    I have been dealt a really difficult hand and I don't know how I can cope with it! This is how I feel!
    But thanks again for your support.

    Keep safe and I hope you are doing okay!
     
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