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Tests for RH

Discussion in 'Reactive Hypoglycemia' started by SarahTee, Jan 1, 2020.

  1. SarahTee

    SarahTee · Member

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    Just thought I'd start a new thread for a specific question, if that is okay.

    What tests should be done to diagnose (or rule out) RH?
     
  2. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    Welcome to the forum from me..

    Not my medical bag. But I will tag in @Brunneria & @Lamont D who may have some pointers for you..
     
  3. SarahTee

    SarahTee · Member

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    Thanks, Jaylee. They have both been kindly helping me already with some diet questions – very helpful. I just thought I'd put this as a separate topic as it is a more specific question.
     
  4. Shaj07

    Shaj07 · Member

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    I’m not a medical professional or an expert. But I did a 4 Hour glucose test. Believe it’s called OTTG or some type of acronym like that (lol sorry) my dr ordered it and I went to a lab to do it. I had to drink a very sugary mixed drinker and they watched me for 4 hours as I felt like I was going to throw up and pass out and they took my blood every hour on top of that.


    With that being said I wish there was a better way to diagnose lol
     
  5. Brunneria

    Brunneria Other · Moderator
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    Sorry @SarahTee - only just seen your post and Jaylee’s tag.

    my understanding is that a 5 hour Oral Glucose Tolerance Test is used, and may include a 72 hour fasting test afterwards.

    A 2 hour OGT is often used to diagnose diabetes, but it is to short for RH to show up in many RHers.

    However, there should be a number of other tests done as well, to eliminate numerous other conditions. RH seems to often be a diagnosis of ‘last resort’ when several other conditions have been tested for, and found not to be there. These include other metabolic conditions, drug reactions, and insulinomas.

    Hope that helps.

    I would add that I have been through none of these tests, even though I have regularly had nasty hyposafter 2 hr GTTs. However, because the hypos always happened after I had left the doc’s after the 2 hr ended, these were never tested and recorded.

    Back in the late 80s when I realised I had RH my doc had never heard of it and assumed it was ‘all in the mind’. So I researched it myself, discovered what eating patterns helped, and have been self-managing (with varying degrees of success) ever since.

    This places me in the unfortunate position that my medical records say something like ‘silly melodramatic hypochondriac’ back for my teenage years ;). But it also means that I am extraordinarily fortunate in having an understanding of the limitations of the NHS diagnostic process ;) and a healthy sense of responsibility for my own health. I have also (thankfully) learned to manage this condition very well, by myself, and have never followed the common doc advice to eat carbs every 3 hours. I consider myself extremely lucky to have escaped that!
     
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  6. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi, again, obviously it sounds as if you have had an oral glucose tolerance test, it was probably an extended test (eOGTT), did you have a cannula fitted? Was bloods taken before and during, same with finger pricking tests or CGT readings taken every fifteen twenty minutes? Were you told your blood was for c-peptide or GAD?
    Depending on results, the next stage is probably a fasting test to see if you go hypo without food. If you do, it's not Rh.
    Again depending on results, if it is Rh, then another eOGGT is likely to be used to ascertain how much you are effected by glucose quickly into your body, more bloods for initial insulin response, and how much insulin is produced by the insulin overshoot triggered by the glucose.

    This is why a food diary is essential because the trigger point from carbs is different for all of us, which foods are the worst. What we can tolerate.
    keep asking

    Best wishes
     
  7. SarahTee

    SarahTee · Member

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    I had a basic oral glucose tolerance test – not with cannula fitted. I think it went for about 2 hours, with one blood sample taken before the glucose drink and two afterwards. So not the extended one.

    Showed normal readings according to GP. I felt a bit unwell after drinking the glucose drink but it did not bring on the postprandial symptoms I normally have. Mind you, my postprandial symptoms are usually 2 to 3 hours after eating.

    I have to wait 6 weeks until my next endocrinologist appt. When I questioned him about further testing in the meantime, for possible RH because my symptoms worsen after b'fast and lunch, he said that RH is difficult to diagnose by testing. He did recommend a dietitian so I will try to get an appointment with her.

    I used to see another endocrinologist about 10 years ago for an unrelated problem. I am going to get a referral to her from my GP and get a second opinion.

    I seem to have a mixture of autonomic, adrenergic and postprandial symptoms. I have almost been wishing I was hospitalised so that a team of specialists would be looking at my problems at the same time and talking to each other about what might be going on. Trying to pursue it in dribs and drabs myself is proving extremely time consuming.
     
  8. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi again,
    The reason RH is difficult to diagnose is because it is a series of tests designed to eliminate other conditions until the only logical explanation is reactive hypoglycaemia or a similar type of hypoglycaemia.
    The eOGTT test is the first step and shows that too much glucose will initiate an overshoot of insulin that drives your blood glucose levels into Hypoglycaemia.

    This is why a food diary can help your doctors understand what is happening.

    I hope you get a dietician that understands the post prandial symptoms you are getting, and how carbs have an effect regardless of how 'healthy' carbs are supposed to be.

    Let us know how you get on!

    Keep battling.

    Best wishes
     
  9. bulkbiker

    bulkbiker Type 2 · Oracle

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    Are you UK based?

    If you are I seriously doubt this would happen...possibly in the USA if "House" is to be believed..
     
  10. KarenTh

    KarenTh Reactive hypoglycemia · Active Member

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    Hi Sarah T. I was diagnosed with RH 18 months ago and saw both an Endocrinologist, a Gastro Enterologist and a specialist dietitian. I had a 48 hour urine collection test, an endoscopy, CT scan of my stomach and finally a 5 hour glucose tolerance test. The first tests were to rule out a pancreatic tumour and anything else that may have been causing my symptoms - typical RH hypo symptoms plus chronic diarrhoea every morning on rising. The latter was put down to excessive adrenal activity. The GTT delivered my RH diagnosis almost immediately as after the initial spike, my blood sugars fell through the floor down to 2.8. At that point they stopped taking blood via a cannula and fed me! Seeing the dietician and eliminating sugars and carbs and keeping a food diary enabled me to start feeling better almost immediately. I have done lots of refinement to my diet which means eating every 2 1/2 to 3 hours since then with trial and error. We are all slightly different in what can be digested e.g. caffeine. Some people can and others can’t! I think it’s vital you have the extended GTT ASAP and wish you luck with getting the right diagnosis so you can start to feel better very soon. Ask any questions as they come to mind.
     
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  11. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi again and a great post, you are getting a good working knowledge of how and why, and the necessary steps to prevent the hypos.

    Have you tried intermittent fasting, or a similar fasting regime, because I found that not eating sometimes made me feel much better later in the day.
    Also, because eating every three hours or such is a lot of planning, cooking, cleaning, shopping and so on, if you are low carb enough, then the need for eating every three hours is redundant because you're not triggering the high glucose levels that causes the trigger for the overshoot of insulin that causes the hypo.

    As you say, you are feeling a lot better, that is great, when was the last time you had a hypo?

    Best wishes
     
  12. SarahTee

    SarahTee · Member

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    No, not UK based. I am an Aussie.

    What I meant was, if I were ill enough to be hospitalised, I would be given a barrage of tests and be seen by various specialists quickly. They would be (hopefully) making a concerted effort and liasing to rule things in or out.

    As it is, I'm driving the whole thing, asking my GP to follow up on this or that possibility, tracking down specialists, trying to understand test results, etc.
     
  13. SarahTee

    SarahTee · Member

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    I have a further question – what if I just buy a blood sugar monitor and test myself?

    I have been trying to get my symptoms investigated for a year now, and it seems to be going nowhere. No luck in getting an extended eOGTT from first endocrinologist (who turned out to be not very helpful), now running through everything again with second endo (she is good but we have to do everything again). I have a previously diagnosed endocrine condition that may or may not be implicated, so we are checking that again. It will be some months to get that done (discontinuing meds, having tests, waiting, having tests again) and if there is nothing wrong adrenally she might look at RH then.

    So normally I would not do anything medical off my own bat, but these days blood glucose monitors aren't too expensive, and I am not going to act on the results without my doctor's advice.

    Would self testing be useful? I presume if my blood sugar is in the acceptable range at various times, including when my symptoms are worst, that would pretty much rule out RH.
     
  14. SarahTee

    SarahTee · Member

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    Thanks for your reply, Karen. It sounds like they really put you through your paces! I am glad you got a diagnosis and that you are noe making progress.

    I hope I will be able to get an extended GTT. I have an existing hormonal condition that may be implicated, so endocrinologist wants to check that out first. I wonder if my GP could order me the extended test. I am sort of walking a fine line with her because I am constantly pushing to be sent for this or that test or specialist – she is a good GP and very supportive but my symptoms are weird and I have another unconnected medical problem that we also have to keep tabs on.

    I wonder if I should just pay to have the extended test done – not that I am rich but being unwell I haven't been spending much the last year so I could probably afford it.
     
  15. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi again,
    I'm not too sure that being ill as I know how ill you can get with RH especially very low hypos, would help with a hospital admission, they would treat the hypo with treatment that probably wouldn't help you.
    On my eOGTT, the nursing staff and the doctor on duty thought because of my hypo, I should be treated as a T1 or T2 should be treated and they made me drink a glucose drink and even worse a sandwich, which I didn't eat! They still were trying to ram carbs in me even an hour later when I was going high again, I stopped eating, I lasted about another hour and a half and went hypo again!
    They got hold of my specialist endocrinologist who had an idea what was going on and he decided then to up my blood glucose levels slowly, as I settled in normal levels, they sent me home, I was in hospital for that one test for about twelve hours.
    Normally in the UK, a specialist endocrinologist who would have an idea would not be called in, only on referral from other doctors.
    The likelihood of getting the right tests is probably low.

    Getting the correct tests is important, but not as important as what you have started doing already, a diagnosis is not necessary, if your testing and recording, your symptoms are giving you typically RH results then the best way to get through this is your dietary lifestyle.
    Most tests are used to eliminate other metabolic conditions.
    Only if you don't have these other conditions can it be RH.
    For example, a 72 hour fasting test is to prove you don't go hypo while fasting. If you do go hypo, it will be one of the pancreatic conditions, such as insulinoma.
    If you need more information please ask.

    Best wishes
     
  16. SarahTee

    SarahTee · Member

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    Thanks for your answer, Lamont D. I got distracted from RH by a somewhat disastrous episode with the new endocrinologist and some medication that really didn't agree with me. I have an long-ago-diagnosed-and-successfully-treated hormone condition that could be causing my symptoms. Long story short, I managed to get appointment with former endo due to telemedicine (one plus of current horrible situation in world), and she is now investigating hormone stuff again from the start.

    So I am no further forward with RH. But I am thinking of buying a blood glucose monitor to see for myself if anything is going on after meals.
     
  17. Brunneria

    Brunneria Other · Moderator
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    how much money are you willing to throw at this?

    My view, based on personal experience of RH, and quite a bit of testing, first with a glucometer, and later with a Abbott Libre, is that testing with the glucometer is of limited value, while the Libre is much more use.

    My hypos (thankfully v rare nowadays) hit hard and fast, and my bg rises very rapidly afterwards.

    When using a glucometer I used to feel rough, get my brain in gear enough to work out it was a hypo, get it together to test, then scratch my head because the reading was 4.7mmol/l or something.
    Which obviously wasn’t a hypo - yet I felt as though I had been run over by a truck.

    when using the Libre, the whole story was revealed in a dramatic graph.
    bg dropping sharply, to something like the 2s or below (Libre stops measuring if you go low enough), then a sudden change in graph direction (think a V not a U shape). Thats the point where the horrible hypo symptoms start to arrive. After the lowest reading. Then the bg rises sharply, as my body scrambles stress hormones to release stored glycogen from the liver, which gets glucose into the blood... and that is the point I would have usually get it together to test and see a reading in the 4s. Long after the actual hypo hit its low point and was busy rising again.

    Lots of people take the view that ‘it isn’t a hypo unless you can prove it’ using a glucometer.

    I take the view that I had hypos for 30 years before I knew that glucometers existed.
    Then glucometers were quite unhelpful in ‘proving’ that my hypos were ‘real’.
    Then I got a Libre, and Lo and Behold!
    I have proof that I wasn’t lying all my life.
    Makes me larff.
     
  18. SarahTee

    SarahTee · Member

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    Sorry, I wasn't clear. What I meant was, when you get seriously ill with anything, ill enough to get admitted to hospital, you get your vitals monitored 24/7, you are tested for everything likely, and seen by specialists within hours or days. It is all done quickly and they are all at your bedside looking at the results and comparing notes, with coordination by your "ward doctor".

    When you have a non-lifethreatening illness, you seem to have to coordinate it all yourself, and spend months or years trying to get specialist appointments, referrals, tests, etc. It is all so slow and frustrating. I just wish I could get an endocrinologist, dysautonomia specialist, dietitian, phlebotomist and a couple of nurses, and lock us all in a hospital room (with adjoining path lab) until they have tested me every which way and thrashed it out!
     
  19. SarahTee

    SarahTee · Member

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    Hmm, that is very interesting, Brunneria. I would throw a fair bit of money at it! I could afford the monitor and two or three sensors to see if anything is going on. Is it pretty easy to use? I am reasonably tech savvy, but at the moment I'm not very well. Is the sensor easy to fit properly? And the graph easy to read?

    I would need to download the data I suppose so that if it does show something I can pass it on to GP/endo.
     
  20. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    I would definitely recommend getting a glucometer, ask your endocrinologist for one and enough testing strips to start testing.
    Also keep a food diary, testing and recording, what you eat, portion size, how many carbs, how much protein, what you eat and when. Taking readings before and hourly after, until you see patterns and what foods are not suitable.

    Keep asking
     
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