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Help please - Reactive Hypoglycemia?

Discussion in 'Reactive Hypoglycemia' started by Cmo95, Apr 10, 2019.

  1. Cmo95

    Cmo95 · Member

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    Hi there,

    I've been suffering with what I believe to be RH for just over a year and a few months and just wondered if anyone had any similar experiences and advise? I'm 29 year old male, previously I have been very fit and active with no health concerns, I used the gym regularly, and used to be able to run and play football.

    The problems all started in December 2017 when I was driving home from work and I started to feel unusual, I had chest pains, and just felt generally unwell. Around the time of this all happening I had 2 bad episodes of suspected Gastritis, I also was drinking lots of red bull and taking pre workout supplements for the gym. I was also under a lot of pressure at work and a close family member had an illness which caused a lot of distress.

    Since then I have been to the doctors and hospital multiple times, I've had an ECG which was clear, an MRI scan that came back clear, seen an optmothologist, ENT , endocrinologist and numerous blood tests which all where healthy. The endocrinologist diagnosed me as having signs of RH, however he said that I could be hyperventilating? I have had around 25-30 doctor appointments over the last year and a half. They have noted that my liver enzymes may be high (I believe around 66) so I am having further blood tests and an ultra scan to check that.

    My main symptoms which are pretty much 24/7 on a daily basis:

    1. Fuzzy/blurry vision
    2. Empty stomach feeling like I need to constantly eat, if I dont eat I start to feel weak, cold, shaky
    3. Exhausted from exercise, I used to be able to go to the gym 5 times a week, now if I go I feel very weak after working out and horrendous afterwards, again feeling like I need to eat
    4. Brain fog / lack of concentration at work which isn't helped by the blurred vision
    5. Tinnitus and ringing in ears
    6. Trembly and shaky
    7. Chest pain and heart palpitations

    I have noticed that if I don't eat for a while I start to feel unwell, my hands and feet go extremely cold, I feel heart palpitations, the fuzzy vision worsens and I shake uncontrollably.

    My symptoms seem to mainly be physical, which is what I believe is causing me some anxiety as well.

    Its having a serious effect on both my personnel and work life and I'm beginning to feel like I'm at the end of my tether, I am still managing to get to work everyday but it is a struggle, I can no longer enjoy the things I used to do such as using the gym, going out for drinks and socialising with friends and family etc.


    I've read some extremely helpful articles on the forum, I have since decided to eat a low carb diet to try and help (I'm currently on my 3rd day and I'm really struggling with energy) and I will be going tonight to purchase a blood sugar monitor, I don't know if anyone can recommend any? I've been looking at the accu chek mobile.

    Appreciate any help/guidance anyone can provide me, thanks a lot.
     
  2. Brunneria

    Brunneria Other · Moderator
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    Hi and welcome!

    If you have been reading the forum, then you have probably already read most of what I would normally say... and you've probably read it several times ;) so I won't repeat myself (again) :D

    Have you found the www.dietdoctor.com website?
    That has a good amount of useful information on transitioning to low carb, what symptoms to expect, and what may be causing them.

    I do have to ask, are you still relying on caffeine (Red Bulls or coffee) to get you through the day? Only my experience is that coffee did almost as much nasty stuff to me as the carbs did, and some of the symptoms overlapped, which made it very difficult to know whether the shakiness, hollowness and wobbliness came from hypoing, or too much caffeine...
     
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  3. Cmo95

    Cmo95 · Member

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    Thanks for your reply! Yes I must admit I have read it all several times, it does make me feel slightly better reading similar stories as I felt as if I've been going insane! :banghead: I will add that I have so much sympathy for the people experiencing this, it's a horrible illness!

    Thanks for the website, I'll have a good read, prior to reading the forum I was living off toast, ready meals, take away etc which I can't imagine have not been helping..

    To be honest I haven't touched red bull or coffee since the symptoms first began through fear that it will make me feel worse! I have managed to cut out pretty much all caffeine in my diet, I have the occasional cup of tea now and then.

    Thanks again for the reply and help.
     
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  4. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi @Cmo95 and welcome to our forum.

    Your symptoms do mirror mine before I was diagnosed and when I was still eating carbs. But those symptoms also could be a lot of endocrine conditions. But, if your specialist says it could be RH, has he suggested doing further tests? As the only way for a true diagnosis is by a series of tests, you haven't mentioned hba1c levels?
    Is the blood tests for that? Or for the liver enzymes or fatty liver? I had all them done.
    Surprised by not having a oral glucose tolerance test, it could be the next step.
    If you have read the forum, you should see that a food diary is crucial to get information about what is happening to you and I would recommend a comprehensive diary, this will help you decide which foods are good or bad for your body, just because something tastes good, it probably isn't, and healthy carbs are not healthy for me! A glucometer is the best tool for this!

    One of the reasons why you feel awful is because of a change in dietary intake, your body is used to a certain level of high glucose levels, the ups and downs of glucose levels, will definitely give you the anxiety you mentioned, other brain function symptoms will also give you the brain fog, forgetfulness, blurred vision, headaches and so on.

    Keep asking.

    Best wishes
     
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  5. Cmo95

    Cmo95 · Member

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    Hi Lamont, thanks a lot for your reply!

    He didn't suggest any further tests, he simply noted on the letter that he thought it was hyperventilation causing the issue and sent me on my way... not too helpful, maybe I should get another referral. I haven't heard anything on hba1c levels, I'll be sure to ask this at the next appointment :) I've been told the blood test is for full liver function, so I'm not 100% sure if that includes enzymes and fatty liver, another good question for me to ask so thanks again! There has been no mention of an oral glucose test so I will request this from the doctor.

    I've today started to keep a food diary, I'm basically living off egg, chicken, salad, and bits of fruit (mainly berries, I used to eat a lot of bananas and apples but understand that these may not be helping me) I'm definitely going to head to the pharmacy over the weekend for a glucometer (This won't be fun as I'm terrified of blood!!)

    Thanks so much for your information, it's been 100 time more helpful than the doctors suggesting it's just anxiety and that I need to chill out (I've actually completely changed my lifestyle & job and it hasn't made any difference to the symptoms)

    I'm hoping that the diet changes will begin to make me feel better, I'll also ask the GP for the tests that you've recommended above as well! :)

    How are you coping with RH now?
     
  6. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    When I was struggling with my health about ten or more years ago, I was having difficulty controlling my liver function results, I had the scans and with the blood panel results, the diagnosis was high liver function and a fatty liver.
    This gradually worsened with time, because I couldn't control my weight issues.
    The recurring theme from my healthcare was to stop alcohol intake and loose weight, I could never drink much by then and I would have a pint and feel awful,for ten years, I tried every diet and weight loss program you could imagine.
    I never did have a fatty liver caused by alcohol, it was Non alcoholic fatty liver disease. But they wouldn't listen!
    I had an endocrinologist for about twelve months and didn't recognise the symptoms or believe me when I told him. He actually dismissed me because he decided that I wasn't doing what all the healthcare system decided for my treatment.
    I tried, but of course it didn't work for me.
    I would imagine there are still endocrinologists that have no idea what Hypoglycaemia can do to someone's health and testing insulin levels is rarely done!
    But RH and similar conditions is becoming less rare, as these threads will testify!

    I'm glad you have started a food diary, I learned so much from mine!
    Apple's for me are okay, as long as they are relatively small! Half a green banana is just about okay, but that is me after years of testing. It might not be for you, RH is individual, but it is usually carbs or sugars that spike you. Only testing can do this, bear in mind it is portion size as well, so a spoonful might be okay but two would be too much. Also fresh prepared protein and vegetables is so important. So is, what your tolerance to foods for you. Concentrated food is usually too much, underground starchy vegetables are bad for me, I eat a lot of salad.

    How am I?
    It's nice of you to ask.
    I'm coping very well, my health is good, my blood sugar levels are in control and importantly no hypos!
    I have a full time job and that keeps me very busy as does my family.

    Hope you are starting to cope with everything that is going on and getting your head around the situation you find yourself in. When I found out I wasn't diabetic and the condition and situation I found myself, I made a big change in lifestyle and how I approached my life, the good news of not being diabetic, was counterbalanced by my food choice restrictions, I was determined and single minded about the necessity to control my health, to find the right balance for me! I found that it wasn't that dramatic as long as I was aware of my limits, my education of what my body was happy with, was my goal. I believe that I got there and now, I couldn't even want a potato (chips), bread, any wheat, dairy and especially baked beans! I prefer a nice pork chop with salad! Or fish and so on. Homemade soup, curry, which are recipes fond in the low carb forum.
    There is a lot of information all over this forum, about people's experience with low carb, ketosis, fasting and how to balance your food intake and of course exercise.
    It is individual and depending on your background will influence your food choices!

    Keep asking,

    Best wishes
     
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  7. Cmo95

    Cmo95 · Member

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    It sounds like we are all having the same problems in the beginning with GP/Doctor not recognising the illness, I wish they would understand the effect this condition has had on people.

    I'm glad you are coping well, it's really nice to hear that there is light at the end of the tunnel, I have found the hardest part of this going from somebody who has been quite physically active and well to now struggling to manage from day to day! But I'm hopeful with the kind advice I have received from the forum and help from the doctor that I will get better.

    Thanks again for all the information, I really appreciate it!
     
  8. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Another problem for younger RH ers, is exercise.
    Because I'm quite old, my exercise is my work day! I average about 20,000 steps a day overall. This is enough for me! Especially if I don't have too much food!
    My energy levels are really good!
    I would recommend light exercise, walking at pace, swimming, weight training but keep it light!
    Running and strenuous activity, will cause a liver dump of glucose!
    Not what you want!
    A good way to exercise, is after a small meal, you walk for fifteen minutes, fifteen minutes after eating. This tempers and helps your blood sugar level. It also helps with satiety and of course eating too much.

    It will get better as long as you persevere with finding your balance of protein and good fats. The symptoms will gradually ease, you have to understand, that everything is against all medical advice, what is healthy for most, is not for you.
    I found out that with this forums advice and personal experimentation and experience through the hospital tests, and understanding how, why and what was causing the symptoms and the hypos and getting around the fact that it was the so called healthy foods (carbs) that was the cause and getting my head around the fact that there was no cure, no magic pill, no formula, no treatment that had been scientifically proven or disproven, I found myself relying on myself and a certain member of the forum, who was instrumental in how I approached my lifestyle changes. The realisation, that this is for life, the research into RH is not out there, only studies! A few scientific papers out there, but not much, the condition is not widely known, even to some endocrinologists! And many of them insist on eating healthy complex carbs! (Not in my experience, even my endocrinologist has insisted on complex carbs, but every time I tried, it raises my blood sugar levels too high!
    But he reluctantly relented when I showed him my food diary.

    Best wishes.
     
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  9. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    If you would like to read my blog, it is in the blogs forum!
    If you click on my avatar, you should see my personal page and amongst that list is my blog. Click on that and you should be able to read my account of my battle. And other things!

    Best wishes
     
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  10. Discovery22

    Discovery22 · Active Member

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    Hi, sorry to hear you’re going through it. It certainly sounds like it could possibly be RH although it took years for me to be tested as my gp was insistent that you can’t have hypos unless you’re on insulin. I use accuchek mobile and do recommend it and you can change the depths of the lancets to reduce pain/bruising/excess blood. You really could do with an extended glucose tolerance test (EGTT). This is where you fast overnight then they give you a glucose drink and test your blood every 30 mins to see what happens

    Good luck
     
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  11. Cmo95

    Cmo95 · Member

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    Thanks again for the information Lamont! The exercise has probably been one of the hardest things to deal with, as exercise really used to help me deal with stress etc. Thanks for the recommendations and advice, I have started walking and trying to play football once a week.

    I'm definitely going to persevere with the diet in the hope I start to feel better, as I said earlier I'm really grateful for your advice and the advice on the forum, as I seemed to be at a dead end. I'll continue with the food diary, I still need to purchase a blood glucose monitor which I will try and sort this week!

    One of the biggest problems for me at the moment is that I when I don't eat every 3-4hours I get the strange feelings, which can be problematic and does give me some anxiety. I also find it quite difficult to drink alcohol, pints of beer no longer agree with me.

    I've been having a good read of your blog, thanks for that it's very helpful :)
     
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  12. Cmo95

    Cmo95 · Member

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    Thanks a lot for your reply :) I will definitely ask for that test and hopefully it will shed some more light on what's happening! Thanks for the info on the accuhcek mobile i'm going to get one this week. How are you coping with your RH? :)
     
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  13. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi @Cmo95
    Do persevere, it took me some time to adjust, and not having a glucometer, you could be feeling anxiety and worry that certain symptoms and feelings are your blood sugar levels, it might not, how would you know without testing?

    Because you haven't eaten for a few hours, you get hungry, also at this stage your body, brain, hormones are still expecting a certain amount of carbs, add on top that at this time, you are going towards hypo levels. So you are bound to get those symptoms. Treat these symptoms after testing, I would definitely recommend at this time during experimenting and trial and error, eating smaller meals more often, every two to three hours, to offset the symptoms, until you have been low carbing and being in continuous normal levels for a while, you have to adjust to not eating carbs.
    It may seem daft to eat more often, but until you have got good control over your blood sugar levels, you will have the tendency to go hyper, then hypo. It is a precautionary measure to do this and not be permanent.
    You will get fed up (sorry!) of eating, well I did, and now, I eat when I want, fast, not keep to a schedule for meal times and please myself. My food intake has dropped considerably, because I discovered my body doesn't need too much food!

    Beer, I gave up drink about twelve years ago, I was never a big drinker, I couldn't hack it! It was too much, I always felt rubbish later, and especially the day after!
    The same with certain foods, if it made me get the symptoms or feel awful, I wouldn't want it! Once you know what you are intolerant to, beer is essentially a lot of carbs, you will want to avoid it. You have to except that, these types of foods and drinks are like poison to us and every time you have them, within a few hours you will feel awful.
    They are slowly causing problems to your health, you've got a diagnosis, the right treatment is dietary, nowt else!
    So, to get healthy you have to give up and do without, whatever sacrifice you need to do, for your health sake, perseverance is essential and necessary.
    Get that glucometer, keep your food diary, and get knowledge. Keep asking.

    Best wishes
     
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  14. Discovery22

    Discovery22 · Active Member

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    I’m really struggling with mine at the moment but I have underlying issues that are affecting it and a rubbish gp making it a very long process. One day I’ll have no problems and the next my bg will constantly drop throughout the day
     
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  15. Cmo95

    Cmo95 · Member

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    Sorry to hear you are struggling, I can't imagine how difficult it must be coping with RH and the underlying issues, I hope that you manage to get some good news soon. I have been using the AccuCheck, especially when I have been having symptoms, the lowest result was 4.2, and the highest 5.2, with the average around 4.7, which confuses me as I think that's a normal level!

    Edit: Sorry for the late reply!
     
  16. Cmo95

    Cmo95 · Member

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    Hi Lamont,
    I have been using the glucometer, normal readings in the morning are around 4.5-4.7 before any food. I've been testing when I've had symptoms, with readings around 4.2 - 5.2, average around 4.7.

    The low carb diet sadly hasn't really made too much difference, I just feel a lot more hungry, but I'm persevering!

    I had another blood test last week to test liver function, as they told me I had high liver enzyme (A reading of 66), and I also have an appointment for a liver ultrasound.

    Thanks again for all your information and help. :)
     
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  17. wiflib

    wiflib Type 2 (in remission!) · Well-Known Member

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    All lovely and normal levels. I run on 3’s and 4’s Have you tested before and at one and two hours after food?

    You gave an example of your food intake and it seemed to be almost totally lacking in fat. You need good saturated fat, especially if you’ve cut carbs. What’s your normal food intake over a couple of days?
     
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    #17 wiflib, Apr 26, 2019 at 12:23 PM
    Last edited: Apr 26, 2019
  18. carty

    carty Type 2 · Well-Known Member

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    You have had great advice here and just to add my 2 penny worth .I would also advise upping the good fats ,they will help you to feel full for longer and are kind to blood glucose levels .You could have avocados nuts cream ,cheese full fat yoghurt all of these are good snack s as well if you feel hungry when out or at work
    Carol
     
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  19. Brunneria

    Brunneria Other · Moderator
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    @Cmo95

    Totally agree with @wiflib and @carty

    If you are uncomfortably hungry on LC then you are either still too high in carbs, or you haven’t replaced them with good satisfying protein and healthy fat. Both of those will increase satiety, release energy slower, to prevent you getting hungry before your next meal.

    Quick easy ways to achieve this is to bump up your protein intake a bit and add cream to coffee, butter to veg, scatter grated cheese on veg, olive oil to salads, and enjoy mayo whenever and wherever you like. :)
     
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  20. KarenTh

    KarenTh Reactive hypoglycemia · Member

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    How are you getting on now? Hope you are starting to feel a bit better? The pancreas takes a good few months to calm down once you cut out sugar and stick to low carbs. If you can tolerate a small apple try to combine that with a few nuts for protein or with a bit of zero sugar peanut butter. I would not have fruit without protein to counter balance it.
     
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