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Have I got RH?

Discussion in 'Reactive Hypoglycemia' started by NEOBAHAMUT, Jan 12, 2019.

  1. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Good Morning everyone I hope your well!

    I come here in need of help to getting my life back on track. For about 18 months now I’ve been getting symptoms of what I believe someone diagnosed with Reactive Hypoglycaemia would also get. The symptoms I’m experiencing are different day by day but I usually get the following

    - Internal Shakes (Meaning I feel like I’m shaking like mad usually in my legs / back,
    - Nauseas - Quite a lot of days I will wake up feeling sick generally until I’ve had something to eat. It does go away to some extent but quickly returns.
    - I’ve noticed that if I eat sugar or have one in my cup of tea or coffee then I generally start to feel really unwell.
    - Increased heart rate / Palpitations
    - Short Temper - this normally also kicks in when my blood sugar gets close to 4/4.2.

    What I have noticed is if I eat and eat and eat then generally I can fend off the symptoms. Or at least keep them at bay longer. Sometimes I can go a couple of days where I do feel ok. Over the past 10 months or so I’ve had to stop exercising as it makes me feel really sick after. So I’ve also put weight on. If I cut my calories to try and lose weight I generally can only get through a day or so before it starts again.

    I am currently undiagnosed. I don’t have diabetes and I’ve never had any health issues. The only time I’ve needed the NHS is when I had knee surgery after a football injury 3 years ago.

    I’ve been going back and forth to the doctors for this entire time. I’ve had countless amount of blood tests which have all come back fine. I’ve even been referred to the hospital. The consultant at my local hospital gave me an Adrenal test to rule out Cushings Syndrome and then decided to discharge me when it came back fine. My blood sugar readings are generally between 4 and 6mmol and because of this she instantly dismissed anything blood sugar related.

    Since then I’ve decided to bite the bullet and despite not being in the greatest financial situation I’ve decided to go private. It cost me £250 to see an endocrinologist consultant who is also a top consultant at the closest city hospital to me.

    Within 30 minutes of examining me and listening to me he said straight away he believes it could be either Type 2 diabetes, Reactive Hypoglycaemia or a “blood sugar related issue”. He wants to do an additional test on me which is an Mixed Meal Tolerance Test. I’ve got to have this done this next Friday.

    Will this test help in the diagnosis of Type 2 or RH? I’m worried that I might not be getting the right test. I’m not entirely sure. I’d be interested to hear what other people experienced before being diagnosed? What were your blood sugar readings? What tests did you have before you were diagnosed with RH?

    I know it’s quite a lot of info I’m after but this is quite a serious for myself. I’ve had to put my life on hold. I’ve got two young children with one on the way. I feel like I’m not able to live my life at the moment with all this going on.

    Thanks for reading and I apologise for the long post and lots of questions.
     
  2. Sarabeth23

    Sarabeth23 Don't have diabetes · Member

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    Good thing to know about RH is it's a symptom to something else going on. There is some great people that can answer some questions better then I can in the thread. But I wanted to say if your on Facebook add the reactive hypoglycemia groups with the most members. When they do mixed meal test make sure they get your insulin levels as well as glucose levels. Most would recommend the 5 hour as sometimes we don't react within the 3.
     
    • Agree Agree x 1
  3. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    This is one of the reasons why I always answer most of the posts, with, have you been diagnosed or referred to an experienced endocrinologist who specialises in Hypoglycaemia and similar conditions.
    A specialist endocrinologist has access to the tests required for diagnosis. Where a doctor, dsn does not have the resources to get the tests done.

    You're symptoms are asymptomatic to a lot of endocrine conditions where blood sugars are instrumental in a diabetic type condition, even if you don't have diabetes and have normal blood sugar levels, fasting levels, are only part of the condition.

    A mixed meal test will give your endocrinologist evidence that you are having issues with carbs and sugars, the insulin response to the mixed meal, which is a liquid, this is just an elimination test. My mixed meal test with an eOGTT test that my initial insulin response was too little for any carby meal. You will or should get full blood panel tests including c-peptide, which will see what your insulin levels are.
    The next step should be an eOGTT over five hours.

    Ok, my symptoms were very similar to yours but you will have more if you have RH, even some that you are unaware of.
    My blood sugar levels before diagnosis, were like a rollercoaster ride, up and down, always after my usual 'healthy' breakfast of porridge. Before breakfast, my blood sugar levels were in normal levels, hence being non diabetic. But once I ate carbs, I would spike and if I didn't eat after a couple of hours I would go low because of the excess insulin. It effected my life so much.

    I have read that symptoms of RH can occur in pregnancy and can be an issue even after birth. But I'm not that knowledgeable with gestational diabetes.

    Let us know how you get on.

    Best wishes
     
  4. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Hi thanks for the reply. Yes I will check them out on facebook. Just for a little bit more the MMTT I’m having Friday is about 8 hours in total. From the information I’ve been given basically the process is the following.
    1. I go in to hospital in the morning
    2. They weigh me and then give me a meal
    3. Every 30 minutes they take a blood sample and every 15 minutes they check my blood sugars.

    I’m just hoping that this gives them what they need!
     
  5. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    You will have a cannula fitted and either finger prick testing or a cgm will monitor your blood sugar levels. The blood samples will be sent to a laboratory for study. To see if you have something going on there. It will also measure your insulin and other hormones.
    I always took my kindle and music to help pass the time.
    Hopefully you won't get the hypo treatment I got from my first glucose tolerance test!

    Best wishes.
     
  6. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Thanks Lamont!

    I’m feeling prepped for it. On my letter it doesn’t say anything about fasting the night or day before. Anyway I’m going to try fasting after 7pm till the next day.

    I’ve got my Nintendo Switch and Apple Music on standby to pass the time!

    Hopefully I will get some promising results as I’ve had long enough now where doctors think I’m making it up. The previous consultant even tried to diagnose me as having General Anxiety Disorder without even speaking to my about it. She put it on my record anyway. After a phone call to my GP he quickly deleted it!
     
  7. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Anxiety was and brain function issues were a huge part of my symptoms before diagnosis and a low carb diet.
    As were others especially sleep deprivation and weird colourful vivid dreams.
    It was only after my endocrinologist asked me to write a list, then he added others after asking certain questions and I added more as I researched RH more and more and of course joining the forum and reading about how hyperinsulinaemia, hyperglycaemia, hypoglycaemia and how insulin effects your body.

    Hope it goes well for you.
    Beware the nurse, sister, doctor prescribing quick acting glucose, carbs and other quick blood sugar rising food,or drink. If you get a hypo or symptoms of hypoglycaemia.
    You will get a rebound effect, have a biscuit plain and a cuppa, that will be enough to push them back up to normal levels.
    My first eOGTT, they tried all sorts of carbs, glucose to treat my hypo, even a sandwich with butter on was forced onto my plate despite knowing I'm dairy intolerant, I was in hospital for over nine hours because they didn't have a clue how to treat RH or a hypo for a hypoglycaemic!
    I went home in a mess and didn't recover for a couple of days.

    I knew from then on not to trigger the rebound effect every time I have a hypo, I needed to just nudge up my blood sugar levels back into normal levels. Then keep checking and eat a low carb meal when I had normalised levels.
     
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  8. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Lamont thanks for the info it’s been really good to read about your experience and how you deal with it. I’m currently eating as normal as I can at the moment and not trying to change anything diet related at the moment however I’ve been reading about the Keto Diet and I’ve heard really good things about it

    Would you be able to post me what sort of diet your on. What is a standard day for yourself? Do you still suffer from hypos? What about exercise? I used to go running quite a lot and also on the bike however I have stopped this due to the fact that once I’ve finished then I would be ill for the rest of the day and certainly into the next day also.
     
  9. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    A typical working day, would be,
    Cup of tea, no milk or sugar, then either a boiled egg or some full fat yoghurt with some berries. This I get at work.
    Lunch, ham salad. Small apple.
    Dinner, grilled meat with veg or salad again!
    Supper, yoghurt, berries, a piece of dark chocolate.
    Of course, I don't always stick to this regime, because I have found that not eating regularly throughout the day is not necessary for me, not sticking to routine, intermittent fasting for instance.
    Some working days, I fast till afternoon, then I eat in a window of six hours.
    I have fasted for a whole day.
    However, you may not be able to do this. Also it depends on your lifestyle, your tastes, your availability of getting good protein and fats. It always depends on your intolerance to certain foods.
    Then if I'm off work, I fast till afternoon always, then I have a treat of grilled gammon, fried eggs (duck or goose fat) fried onions, mushrooms, tomatoes, absolutely wonderful and not a carb (well not much) in sight!
    I have learned over the past five years since diagnosis, that because I'm doing Keto, I have no hunger, no desire to eat regimented, I please myself entirely, if I eat or not.
    It seems my body doesn't require a lot of food, just enough for nutritional needs and not to give me the energy from carbs, because my energy levels are brilliant on low carb. And it has improved my health dramatically.

    I have had only one hypo since diagnosis and that was after my last eOGTT.
    Because I don't trigger the insulin overshoot, due to low carb, then I don't hypo.
    I have come out of ketosis a few times, and I feel that, my hyper/ hypo awareness is really good. The first sign is blurred vision, followed by a headache behind the eyes, then slightly dizzy and sweat. Shaking follows that and I start feeling hungry.
    If I get this, I go for a walk for fifteen minutes. I also walk after meals for fifteen minutes.
    I work in a demanding role. It is usually non stop on my feet all day and come home to chores, so a typical day is enough not to go and do other exercise on top of that.
    I know gentle exercise including walking, swimming, light work outs, and also doing the shopping, cleaning and other chores is good to keep your blood sugar levels in control. I also found out that strenuous exercise is not good for control.
    The last thing you need is extra glucose from a liver dump, while trying to control your sugar levels.
    So if you like you say ride your bike, too much will leave you feeling awful, but gentle paced bike riding should be okay, unless your glucometer says otherwise.
    Always, get readings, every time you can, from food to exercise and when you feel awful, use a food diary correctly, and this will help with your doctors see what is happening.

    Again, best wishes and let us know how you get on.
     
  10. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Good evening, I’ve been in hospital for my MMTT today. I fasted from about 7pm last night only allowed water as fluids.

    When I got in there I was presented with the following as a meal
    - one piece of bacon
    - 2 slices of bread
    - 2 small glasses of milk
    - 1 small glass of pure orange juice
    - A mug of tea
    - 1 banana
    - 1 small bowl of Cornflakes

    I had to down the lot and then I gave blood every 30 minutes. They also did a short synachthen test also. So below are my blood sugar readings for each test I had.

    5.8 was my fasting level
    7.8 about 30 minutes after meal
    7.1
    6.1
    6.0
    6.8
    6.0
    5.4
    6.3
    5.4
    5.4

    During the test I didn’t have any symptoms other than a slightly increased heart rate. The nurse said everything seemed ok. Which is disappointing for myself. Hopefully the blood tests will show something up at least.
     
  11. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi, again!
    @NEOBAHAMUT, hope you are okay!
    I can tell you that you do not have Reactive Hypoglycaemia. That was your original question?
    With that amount of carbs in that meal, there is no possibility of you having RH.
    However I'm not dismissing any other type of hypoglycaemia or endocrine conditions.
    The reason I say this is because, even though all your readings are seemingly in and around normal, the almost flat curve response after the initial 2mmols rise in first half hour, is not what I would expect from most breakfast test results. It does seem that the insulin response was too good for the amount of glucose derived from the meal.
    Also, there was no hypo, even after four hours!
    I hope you can get your answers soon.

    Best wishes.
     
  12. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Hi Lamont

    Thanks for your reply. OK I kind of accept that I may not have RH. I do believe there is still an issue though.

    When I hear the results of all tests taken today I will report back.
     
  13. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Morning, I thought I would quickly map out yesterdays readings to see how it looks. Forgive my ignorance but how do you mean by the flat curve response? I thought it was a bit weird as my readings went up twice.
     

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