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Help needed - not diabetic

Discussion in 'Ask A Question' started by NEOBAHAMUT, Feb 13, 2020.

  1. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Good evening everyone.

    just wondered if I could have a bit of advice. I am currently in an undiagnosed state. So as of now I don’t have diabetes.

    For just over two years I’ve been having issues what I feel like are blood sugar related. When I do a blood sugar reading I am normally within normal range. i have had countless blood tests and always been told it’s nothing to do with blood sugar however even though the numbers don’t fit I do feel like I do.

    The symptoms I get are fatigue, really weak, hungry, the shakes, palpitations and generally feel unwell.

    What I will say is I can sometimes go a day or so with no symptoms at all and then it will come on all of a sudden. What’s caused me to post here is last night I went on the exercise bike for 20 minutes. Before I did go on it I felt fine. Then after about 16 minutes I started to feel weak and it gradually got worse as I got to the 20 minute mark. Once finished I ended up laying down and the symptoms eased. I woke up this morning and I still feel the same. I feel strange (almost like I’m tingling everywhere) and they only time I feel any relief is when I lay down to rest. - I’ve taken my blood sugars and they seem ok. this has happened several times in the last couple of years and it generally makes me stop exercising for a few months before I decide to try again.

    I’ve been under the hospital in the Endocrine department and they have said nothing is wrong with me. However there most certainly is. I’m 33 and never had this problem before 30.

    I’m now under cardiology and they have said it’s quite possible it could be blood pressure related however I don’t think it is with the feelings I get.

    I’m at a bit of a loss and not sure really what to say or do. Can anyone give me any advice? I appreciate I’ve not got diabetes however I’ve been reading on here for a while and there’s some knowledgable people on here who I thought may be able to help me.

    By the way. I’m not sure how I even get to feeling better again. I’m not sure if it’s food related or not.... today I’ve felt awful all day and struggled to get through work. I’ve had 2 apples, a banana, chicken and salad for lunch and I’ve had a roast dinner tonight and still no relief.

    Help!
     
  2. Circuspony

    Circuspony Type 1 · Well-Known Member

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    Well I'm commenting as a horse owner here (!) but it might be worth taking electrolytes. My horse has a disorder which relates to the endocrine system (it isn't in humans) & if she's working hard then I must remember electrolytes. At the very least normal salt.
     
  3. mouseee

    mouseee · Well-Known Member

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    Hope you find out what it is. No one can diagnose anything here so it's good you've got investigations going on.


    I'd suggest keeping a log of when you get the symptoms and what you're doing when they hit. That'll help you when you talk to the dr.
     
  4. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi and welcome back,
    I can only describe to you, what symptoms I have after vigorous exercise, something like jogging, gym work, working hard without rest, or I just do too much.
    You have to understand if I don't do this, my energy levels are unbelievable, I can go all day and I do mean at least eighteen hours and not have a drop off in energy levels, this is because my body is attuned to being in ketosis. As long as I don't eat carbs, I feel great!
    So during this heavy demand of exercise, the first symptom is usually a fall off in energy levels, I feel hungry, slight headache behind my eyes, a bit shaky, slightly dizzy, my eyes blur a little, like out of focus, I have an empty feeling in my stomach. My energy levels drop off and all I want to do is sit down, I get a little breathless, I go pale, my pupils dilate. I start to feel rough, like a mild flu, sometimes my nose starts running, I start sweating. I feel warm and out of breath, I can't do things like work normally. I know this sounds like a hypo but it's the reverse!
    I believe I have had a liver dump, too much glucagon!
    This is a trigger and a warning that my body is trying to protect me from too much glucose derived from the liver dump, it will be quite soon that I get the overshoot of insulin, that sends me hypo, if I don't act upon these symptoms.
    I can't say that this is what is happening to you, just that it is quite similar to my experience.

    Best wishes
     
  5. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Hi Lamont.

    I guess my question to you is where you say if you don’t act upon it then you might have a hypo.... how do you act on it?

    This seems to happen to me when ever I do any exercise. Even if I go for a walk after work I get like this.

    I’m suffering from this every day. I just don’t know what to do.
     
  6. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    I'm just not going to add to your troubles by advice about what I do, because I have had a definitive diagnosis. Yours may be a food problem or something entirely different as you say. By now, you have tried a lot of different ways to try and feel normal again. Until they find the cause, wether it is food or not, feeling normal is something that I thought I would never have again!
    It took me years to get that diagnosis, it took something that was a mistake, to get on the road to get a referral, it took me to question all my doctors, dsns to get answers.
    Keep asking for tests that your symptoms are asking the question, why?
    Why is it, that I have no energy after walking? For example.
    Are you seeing an endocrinologist that has experienced diagnosing rare conditions such as your symptoms are suggesting?
    Have you had your thyroid checked?
    I can't remember if you have had any dietary advice, can you give me an idea of what you have been advised to eat? If it is a food issue or something akin to an allergy or intolerance to certain foods, like I have an intolerance to a lot of food, especially potatoes, wheat, grains, rice and dairy products because of lactose. These foods are my triggers.
    There is something going on, keep annoying your specialist, even if it takes a long time, if they are any good, they won't give up on you.

    Best wishes
     
  7. MollieB

    MollieB · Active Member

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    Ask your doctor if you could have POTS. I don't know much about it but it was the one thing I thought of when I read your thing. The hungry thing could be fluke. Sometimes when your body needs something but doesn't know what (or isn't getting it) it will start throwing out all these "signals" trying to get the thing it needs. Like wanting to eat when you are tired or yawning when you are hungry.
     
  8. NEOBAHAMUT

    NEOBAHAMUT · Member

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    Hi Mollie was it yourself who messaged me a while back regarding it.

    If so then first off thank you for that. What I will say is the very next day I went to my GP to be referred to cardiology to check for POTS. I did have a good read up on potsuk.org and tbh with you a lot of the symptoms do tie up with it.

    I was referred to the hospital where I went to see the pots specialist. She was convinced I’d got POTS after a discussion with her and a quick examination.

    In December i went for a tilt table test as well as a 24 hour ecg and then a full heart scan.

    what I will say is during the tilt table test I only got 12 minutes in before I was about to pass out. They quickly had to get me down.

    They immediately said to me they think I’ve got something called STARS syndrome and we’re going to send my details back to the consultant.

    Since then I’ve been waiting to see one of the TOP TOP consultants in Dr John West who is listed on the potsuk site. I don’t go to see him for another 2 weeks. So we will see what happens.

    What I will say is if I eat and eat and eat I feel better and it doesn’t affect me half as much however if I cut back I then start to feel eat. Some days it’s worse than others. I can sometimes go a couple of days where it doesn’t affect me at all but then it comes on strong.

    palpitations, weak shaky legs, extreme hunger, headaches, nausea.... to top it off the worst thing is the internal trembles. I will be laid in bed completely still and it feels like my body is ever so slightly shaking - it’s not a nice feeling.

    I know I’ve posted on a diabetes forum however to me all my symptoms fit the bill....
     
  9. Rokaab

    Rokaab Type 1 · Well-Known Member

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    I think you need to wait for that then, see what they have to say, whatever results they have may explain your symptoms.
     
    • Agree Agree x 1
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