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Going from bad to worse

Discussion in 'Reactive Hypoglycemia' started by Discovery22, Sep 11, 2019.

  1. Discovery22

    Discovery22 · Well-Known Member

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    After testing positive for RH and joining this forum I tried cutting the carbs but still had hypos. (Lots of them). I have hypos when I’m fasting. I have hypos when I exert any energy (and that includes walking round a supermarket). I was taken into hospital for 72 hr fasting which was non-conclusive as my sugars only dropped to 2.5.

    Some days I won’t be too bad but others I can feel my sugars dropping throughout the whole day even while I’m eating and on days like this I struggle to keep my sugars above 4.0

    I was taken into hospital recently due to my BP being so high and having a very high platelet count but they had so much problem stopping the hypos, after I lost consciousness they evicted me from that ward and put me on a diabetic ward to see if they could control it better. In there I practically lived on mini orange juices because my sugars were nearly always too low

    My consultant has now come to the conclusion that I produce twice as much insulin as I should do and that there’s “nothing they can do” and has promptly discharged me saying it’s “just something I’ll have to live with”

    So now I’m left trying to control something even the hospital couldn’t control and struggling with daily hypos...sometimes numerous times a day. I’ve never been told what is causing all this and why after controlling RH for many years on my own with no problem it’s come to this.

    I’m feeling so desperate right now and feel stuck what to do
     
    • Hug Hug x 3
  2. Brunneria

    Brunneria Other · Moderator
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    Oh Discovery, I am so sorry to read this. How frightening for you!
    Have they checked you out for an insulinoma?
     
  3. Discovery22

    Discovery22 · Well-Known Member

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    Thank you for replying. Yes the 72hr fast was to test for that but because it didn’t go down to 2.2 they said it was inconclusive. However I really suffer with thirst and can sometimes drink as much as 7L of water in a day and still be thirsty. They have no answer to that although one dr did mention diabetes insipidus (nothing to do with diabetes) but nothing has been looked into. They haven’t even checked my pancreas which I find confusing since it that that’s producing all this insulin
     
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  4. Brunneria

    Brunneria Other · Moderator
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    I would push further for the diabetes insipidus link. Ask for a referral. Keep asking.
    I doubt if they have a clue about how exhausting and depressing and downright miserable it is to be ruled by endless hypos that you cannot stop.
    I really feel for you.
     
    • Useful Useful x 1
  5. Discovery22

    Discovery22 · Well-Known Member

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    I was told that it cannot be insulinoma if it doesn't drop to 2.2 but at 2.5 being so close is it possible he could be wrong?
     
  6. Brunneria

    Brunneria Other · Moderator
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    No idea.
    You may need to do you own research.
    Would an MRI spot an insulinoma? I am afraid I have no idea...
     
  7. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    As I've replied in the other thread, I don't believe you have RH, because you went hypo without food.
    RH is a reaction to food or a triggered response from food or meds, or it could be hyperinsulinaemia, which is a condition in itself.
    Even without food usually means a pancreatic condition rather than RH!

    I would again ask for a referral to a specialist endocrinologist who has experience with hypoglycaemic conditions.
     
  8. Discovery22

    Discovery22 · Well-Known Member

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    Thanks for replying. I definitely have RH and have done for 19 years and reacted highly to the Extended GTT but I've always been able to control it by avoiding triggers (99% of the time.) That's until 2 years ago. If I eat a trigger I will crash around 2 hours after as before but over the last 2 years I drop regardless of what I eat or drink and if I don't eat or drink. But some days will be less so than others with the non explanatory drops. I guess what I'm trying to say is that I have another condition causing problems in top of my RH. Just wasn't sure if anyone could spead any light on what else could be going on. Apologies for doing this thread on top of the other. Im just feeling so desperate to not have this each day. I can't go on living like this. I have no life with these hypos and the exhaustion that comes with it. I'm close to giving up if I'm honest
     
    • Hug Hug x 2
  9. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    If you have had RH for that long and the hypos have started yet again, and if it is definitely RH, then do take a good look at what has changed. The only other thing is what you are eating? Has your trigger changed? Are you low carb enough?
    I found that I thought certain food items were low enough but some lower GI foods still ended in hypos.
    What are your fasting blood sugar levels?
    Do you like me, have normal blood sugar levels in the morning?
    You may have to resort to going back to the start and testing each food that you eat as part of your diet, I still keep up with my food diary, and I have noticed that I do get different results from time to time. But because I avoid all the trigger foods, I'm still in normal range.

    And if none of these works, I agree that there is something else going on.
    Best wishes
     
  10. Discovery22

    Discovery22 · Well-Known Member

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    Thanks again. It’s possible I may have more triggers now, I’m not certain, but what is fine one day is not fine the next. This morning my fasting levels are at 4.4 but I know for certain if I try to do any housework or anything before eating I WILL go hypo. But then the chances are I’ll go hypo later anyway....that is unless my body decides I’ll have a good day then I’ll be fine.

    It’s all very inconsistent as even if I follow exact patterns by eating exactly the same thing at the same time 2 days running I can get 2 completely different results. The only thing that is consistent is my normal trigger I’ve had for years where if I eat/drink anything sweet I WILL crash

    The speed of the drop varies too and sometimes I can drop a whole unit within 20 mins (which leaves me really shaky) sometimes it will drop so slowly I don’t notice it until quite late. 3 times I’ve lost consciousness but luckily the worst time I was in hospital and I woke up with everyone round me and on a glucose drip
     
  11. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    That gives me more information about your day then you probably realise.
    I have to be careful with my exercise or what I do at work. It has improved as I have worked for quite a while but I get the warning signal of a possible hypo if I do too much! And yes it is so inconsistent!
    What happens if you do too much, is your brain tells your pancreas that because of the energy already being used that it may need more and that comes from what is called a liver dump. This will give you glucose, glucagon that will trigger the hyper/hypo. If I feel symptoms or similar I will always have a very low carb meal or snack to offset the liver dump. The less carbs the better because your gut is deceiving the brain's message to cause a liver dump, because a very low carb snack as cheese will satisfy your stomach quickly. If you have carbs, it won't satisfy and will want more, hence the hunger, craving and wanting to empty your fridge or cupboard!
    I walk a lot, I work at a steady pace and try not to overdo it.
    4.4 is perfect, if your breakfast is not low carb enough, your day will be just a succession of ups and downs.
    I don't believe I have had sugar in any form for about six years now. No spuds, no rice, as little carbs that I can. It has worked for me.
    I always cook fresh or have protein that is very low carb if I'm on my travels, we have a dietary problem and should not be expected to eat carbs in whatever form they maybe in. A carb is a carb, and I have problems with how it effects my body and the reaction to carbs. Even those that are supposed to be healthy, they are not!
    We have a rare condition, we don't have Diabetes! We have a hypoglycaemic episode when we digest carbs.
    We are healthier when not having carbs, low GI is bad for us, most dietary advice is wrong for us and most GPs, even some endocrinologists have never come across a condition such as we have, and don't know how to treat it!
    I was surprised to find that you had a glucose drip or what is worse a glucagon injection if you're are in a coma. I was told that this is a last resort treatment as a T1 patient would be treated. I spoke at length to my specialist about this and he advised a slow release drink would have worked just as well, something like a spoon of sugar in water, would have helped after. The rebound effect from the drip must have been horrendous! I do hope you have recovered from it.
    I have a card in my wallet to advise against this action if I'm hospitalised or an ambulance call.
    I do know that I've crashed hard before diagnosis and have conked out and been found apparently asleep and woken up, when I've had too much sleep and still found myself not with the usual sleep patterns. And the awful dreams because of the overnight hypos!
    I was once helped in a shop, and I still can't remember why, how or what I was there for! My memory around that time is littered with forgetfulness and I have missed so much of my family growing up.
    It's so horrible!
    Along with the anxiety and possibly depression that are symptoms, I do empathise and sympathise with what is going on with you at this time.
    I do know that if you can get really good control, your health improves and your life will change for the better, but as always, you have to understand why and what the triggers are!

    My best wishes
     
  12. Discovery22

    Discovery22 · Well-Known Member

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    Thank you for your advice. It’s all so much to take in and to try to understand so I’ll,need to read through it a few times. It doesn’t help when I have so called professionals...those who you really trust...telling you to eat as many complex carbs as possible for slow release energy, a dietitian telling me to eat porridge every morning and potato’s and pasta through the day.

    All these things I’ve tried and one day I’ll be fine and the next I’ll have hypo after hypo and I don’t know what the hell I’m doing and I can’t function and feel permanently exhausted and drained from living with them day in and day out. I went to watch my daughter play in a rugby match today and fell asleep on the floor in a hypo propped up against the clubhouse and was woken by some man asking if I’m ok. I have no idea if I’m ok all I know is I want to sleep.

    It’s ridiculous that even walking upstairs to the bathroom can trigger a hypo. Or even ironing??

    My window of feeling desperately hungry is far smaller now and I get to a point where actually I can’t be bothered to eat or treat it. I’d prefer to sleep. Or sometimes I don’t actually recognise I’m having a hypo and it’s only when I get really aggy or confused or falling all over the place I take my sugars and they’re low. (Around 2.0)

    I don’t even know the correct way of treating a hypo? In hospital they either give me fresh orange juice or glucogel/glucotabs and it works fast so that’s what I do at home but I have less of it at home so it’s just enough to lift it to around 4.5

    Sometimes I wish it would just take me as I’m too tired to cope with this now. Having this forum is giving me a small ray of hope that maybe I can work out exactly what all the triggers are (which seems impossible due to inconsistencies) and maybe even claim my life back. Thank you
     
  13. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi, again.
    I can empathise and sympathise, that is where I was seven years ago.
    It is the carbs, I was told to eat porridge as a healthy slow release complex carb for breakfast, I would spike very high, the trigger being the oats, because i am lactose intolerant, I only ate the porridge with water. I was accused of having milk or sugars with it to achieve such a spike, but I realised it was grains, carbs!
    I would have a sandwich for my lunch, again the trigger was wheat, whole grain bread, still went hyper/hypo.
    Then of course a jacket potato for dinner!
    By that time I had had three hypers, three hypos and feeling awful and ill, very similar to yourself, the symptoms were really bad. The roller coaster ride of blood sugar levels was literally making me so ill, I wasn't aware how bad, and I was really lucky to find an endocrinologist who understood what was going on.. or........
    My health was poor, my weight gain was really concerning me! And like you didn't know what to do and trusted my health care!

    I can only advise to read the forum, how many have had success with avoiding the carbs, I always say that I'm carb intolerant, it's easier to describe it that way, it is really hard to understand, that so called healthy foods, basic foodstuff, what you were continually told to eat because it is nutritious and healthy.
    Well, not for me!
    It is definitely the carbs that makes me ill!

    How I treat a hypo if you want to avoid the rebound effect. I would not have glucose tablets, too quick and a trigger for the rebound effect. Glucose is probably the worst treatment for a hypo, you are not diabetic, you are not on insulin, you do not want or need quick glucose/sugar/carbs! It is food that causes the trigger and if you go hypo it is because of the carbs, quick glucose and anything with sugar in it!
    Others have similar advice, because it involves a small amount of carbs, say like me, a plain biscuit or a piece of cheese, something that will nudge your blood sugar levels up a little, to not cause a trigger, just to get back to normal levels. Once there, eat a small very low carb meal, check your blood levels every fifteen minutes until you are in normal levels. If you have as you have been advised, it is far too much, too quick and will push your blood sugar levels up until you trigger again.
    The best advice I can give you is to avoid the triggers, by avoiding those foods that trigger the hyper, and of course the insulin overshoot that drives you back down into hypo episodes. No hypers, no hypos!
    It is that order, carbs, hyper, overshoot, hypo., too high the hypo treatment, the trigger, hyper, overshoot, hypo and again.
    You wake up in normal levels and the longer you are in normal levels, your body will adjust to being there, your body will like being in continuous good levels, your health improves being in normal levels. The symptoms will eventually recede, the more you are in normal levels.
    It really does work.

    Do try doing without carbs for a couple of weeks, just to see what happens.
    I took that advice when I arrived here on this forum and have not looked back.
    I got my life back, I work full time, and really healthy.
    I did it, have the belief that some of the so called experts in the medical community, have not got the understanding or training in Hypoglycaemia, that my experience has shown me. I had to test, trial, experiment, use my food diary and use it to convince my endocrinologist that for me, carbs are bad for me, he has backed my reasoning, I have a science paper on using a drug to help control my RH, it helps with initial insulin response but doesn't prevent the hypos.
    I have RH, I avoid carbs! It is now nearly six years since I was diagnosed, because I avoid carbs, I had my last hypo over five years ago on my last eOGTT.
    No hypos at all. I have had a couple of hypers, but not gone hypo because of using a small very low carb meal, to be in control of my body.

    I would read up on a Keto diet, it is based on protein and fats!
    Also a website called dietdoctor.
    I'll tag @Brunneria to give you a link.
    It is not easy, it takes a lot of will power, but worth it.

    My best wishes, hope you are feeling better soon.
     
    • Winner Winner x 1
    • Informative Informative x 1
  14. Discovery22

    Discovery22 · Well-Known Member

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    Wow that was a long reply, thank you

    What level would you consider enough to cause a spike? I think the highest I ever go is a max of 6.0. Some days I’ll wake up in 3’s feeling rubbish and literally have trouble keeping it above 4.0. Sometimes I can have 3 hypos in one day yet my levels have been below 4.5 all day.

    Why am I getting hypos without a spike?

    In hospital they gave me juice /glucose if my levels were below 5.0, at home I won’t treat until I’m around 4.0. I used to leave it until I was in the 3’s but it left me feeling so rubbish I couldn’t recover and just wanted to sleep all day so I treat it slightly earlier now. Sometimes I treat a hypo with glucose and it stays stable after with no more that day. Sometimes I can seem to do what I want and have no hypos at all although that is becoming rare now

    What would you have instead of bread for a sandwich/ lunch? Or instead of carbs with a meal? The thought of just eating meat and a few peas for dinner sounds horrible

    How long does it take for cheese to bring you out of a hypo and how much would you have? I’ve tried a biscuit and after 15 mins my levels were lower than before the biscuit. I could feel the fight between the sugar and the insulin in my body and the insulin won. Then I get to the point where I know I’m supposed to treat it but can’t be bothered or feel too confused to know what to do so end up doing nothing. That’s how I’ve ended up unconscious

    I’ll read up on the Keto diet and try to familiarise myself before giving it a go and I’ll also look up dietdoctor

    I will certainly find willpower if it stops hypos

    Thank you for your time talking to me
     
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  15. Brunneria

    Brunneria Other · Moderator
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    Hi @Discovery22

    I know you addressed Lamont with your questions, but here is my take on them:

    RHers don’t need a blood glucose spike to cause a hypo. They just need to eat too many carbs which causes excess insulin production.

    - I wouldn't count anything above 3.5 as a hypo, because I am not on medication. That is my experience of my body. Not necessarily transferable to anyone else!
    - I would never treat a hypo with more than a mouthful of milk OR juice. Then I would eat nuts, or a proper low carb meal of plenty of fat and protein to even out my blood glucose.
    - I would never consider having bread at any time of the day or night. I have things like egg mayo, pate, crustless quiche, etc with a fork, not a slice of bread. They can also be eaten with veg, or salad. Celery, cucumber and raw veg can act as dipper and scoops. You can substitute carbs like rice, potato, pasta and bread in many ways. These include cauliflower mash, cauliflower cheese, cauliflower rice, konjac or buckwheat noodles, oomi noodles, swede, celeriac, turnip, courgette noodles, soy pasta, lentil pasta, low carb breads (there are pre-made protein breads and a million different low carb bread recipes. The options are well nigh limitless.

    My preference is to eat good quality low carb slow release foods, in generous sized portions, and prevent the hypos from developing in the first place. Today I had a 500ml bowl of homemade chicken soup with real lumps of chicken in it for breakfast (blob of cream cheese floating on top). No carbs. Lunch was a 500ml mug of low carb hot chocolate (100% cocoa powder, erythritol, double cream and hot water). Minimal carbs in the cocoa powder. Supper will be a 10oz ribeye steak and 100g of halloumi (cheese) fries. No carbs. If I wanted veg with any of those I could have huge portions of low carb salad or cooked veg, jazzed up with herbs, spices, seasonings, mayo, grated cheese or butter. (Today was an unusual day in that i ate 3 meals, due to a heavy schedule. Normally i only eat twice).

    All of my food choices are flavourful, satisfying, nutritious and my blood glucose stays steady all day, with no hypos and no need to use any hypo treatments - which would overload my carb capacity and start me back on the RH rollercoaster again.

    Back before I deleted the carbs from my menu, I used to have daily hypos, usually a couple of times a day, and you could have set your clock by them. Giving up carbs was the best thing I have ever done for my health.
     
    • Informative Informative x 1
    #15 Brunneria, Sep 18, 2019 at 6:03 PM
    Last edited: Sep 18, 2019 at 8:59 PM
  16. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    I would back every detail of @Brunneria post.
    The knack is not to start the roller coaster ride by not eating carbs.
    I have avoided bread, flour, rice, as much carbs as possible!

    You have only just begun to realise that the food you are eating, carbs, are causing your symptoms. You will probably have too much insulin, levels too high, causing the symptoms without too much food, until you get to lower this level of excess insulin, you will continually be liable to go hypo.
    This will take a couple of weeks.
    It's hard, stopping eating the foods you thought were nutritious.

    You have to realise that even though food is vital for your nutritional needs, but if that food causes your hypos, you can eat alternative low carb foods. They taste just as good and are as nutritional and in my experience, better for your health because the balance in your hormonal response is in control in normal levels.

    A Keto diet, intermittent fasting, avoiding carbs and sensible about exercise.
    That is how I have trained my body to this condition.
    When choosing my meals, I don't plan for what to replace carbs, I plan for a small meal of protein, good fats and the few salad vegetables that I can tolerate.
    I am extremely fussy about my food, my intolerance to a lot of food restricting my choice, probably more than you. I had belly pork with baby leaf salad with a couple of tomatoes. That is really healthy eating, so why need bread? Potatoes? And so on!
    Eggs are good for me, so versatile.
     
  17. Discovery22

    Discovery22 · Well-Known Member

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    Thank you for all the information. I will certainly look into how I can try this. As a family of 5 we have a fairly small income as I can’t work due to ill health. It would mean cooking separate meals as my daughter works in sport and insists on a high carb diet. It does concern me how much more per week it could cost the family if I change my diet but I’ll see what I can manage
     
  18. Discovery22

    Discovery22 · Well-Known Member

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    Thank you for your assistance
     
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