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Hi! Lost newbie.

Discussion in 'Reactive Hypoglycemia' started by GreenUmbrella, Nov 1, 2019.

  1. GreenUmbrella

    GreenUmbrella · Newbie

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    Hello! I’m new to this group. I suspect that I have reactive hypoglycemia, or the idiopathic version. But I feel like I’m having trouble getting the right tests from my endocrinologist. I’m feeling a bit confused.

    A bit of background. I’ve had PCOS for many years, but I ignored it completely because I had none of the major symptoms (I’m normal-to-low weight, had normal periods, fertility was fine).

    The past couple years, since the birth of my two kids, I had a lot of ups and downs of hunger and mood. I attributed this to newborn lack of sleep and breastfeeding. But after both babies weaned the symptoms continued and even seemed to get worse.

    In the past year or two I started to not make it from meal to meal without major drops in mood and total brain fuzz and just general physical clumsiness. Also mega sugar cravings between meals. It was my husband who first pointed out that I seemed hungry (more like hangry!) when this happened and asked if it was low blood sugar. I hadn’t thought of that because it happened rather soon after eating. But he seemed right!! Another weird thing that was happening was that I increasingly felt hungry right after eating, like I just ate meat / veggies / potatoes but still felt like I hadn’t eaten enough. So I would think I need a dairy product, like cheese. I would eat this, but still feel hungry. And I’d try different foods like fruit, nuts...and I would still feel hungry. I would just keep sliding towards symptoms of low blood sugar and irritability straight out of eating. The only thing that would make me feel satiated would be something sugary like cookies. This started to be a regular situation. I was even starting to get anxious about getting stuck somewhere without access to meal or snacks, because once the hungry feelings / low blood sugar hit I felt so dysfunctional.

    I started to google around and somehow came across PCOS, and remembered that I had this (it had been 14 years since a gynecologist had mentioned it and I had forgotten). I also discovered it was highly linked to insulin and metabolic problems, and it finally clicked that maybe I was having a metabolic problem.

    I started to feel like I was on the right path so I went to my gynecologist and had her check if I still had PCOS, and she confirmed I still meet the diagnostic criteria. She couldn’t tell me much info about the metabolic aspects of this however.

    That was when I decided to quit sugar and fast carbs. That was mid July, so about 3 months ago. The change was radical. In the first 24 hours a steady even feeling came over me that I hadn’t experienced in years. I felt like standing on solid earth after being on a fragile swinging bridge, like my mood and energy would finally not just drop out from under me. I still had some swingy episodes, but they got further and further apart, and I felt better and better, until they were almost nonexistent in the past month (October).

    In the meantime, I went to ask my GP if i can get my insulin and glucose checked. He was completely clueless but referred me to an endocrinologist. I went to the endocrinologist and when I said I was wondering if I had something wrong with my glucose or insulin she nearly laughed me out of the room. She assumed I thought I had diabetes and kept telling me “You don’t have the profile!” because I’m quite thin.

    But I persisted and finally managed to tell her my symptoms of low blood sugar swings and she agreed they, “did seem rather violent” in her words.

    So she sent me for some tests. But I’m not sure they’ve been the right ones. She tested H1BC, fasting glucose, General blood panels and weeks later, OGTT. Almost everything was normal but the one-hour spike of the OGTT was almost at the threshold of abnormal (the spike was 178 and the “pre-diabetes” range started at 180). I had a huge hypoglycemia episode (about 50) after but that wasn’t officially measured. I was at home but I followed along with the test on a finger-prick glucose meter (which incidentally recorded my OGTT spike at 216, way above the lab test — I wasn’t too sure what to think of that).

    Early on I had to wait for awhile between visits with the endocrinologist and I wanted to understand the occasional symptoms I was still having. That was when I got the glucometer and started my own testing. ( I know that’s not supposed to be used for diagnosis, but I was curious). I expected to see hypos on the occasions that I felt symptoms, but I did not have a single one. That was a big surprise, because I had started to see this as a likely diagnosis. I did have rather high spikes (160-200) sometimes and fast drops afterwards however. It wasn’t always clear what provoked the spikes. The only clear hypo I had was after the OGTT (50).

    I still feel like something is weird about my reactions to sugar and carbs, even though my lab tests so far are pretty normal. To point — After three months of mostly steady blood sugar and steady moods I just came to spend two weeks at my mother-in-law’s (currently here now). It’s definitely carb-heavy here. I’ve tried to eat healthy in terms of carbs these past two weeks but I’ve had something “fast” every day like white bread or white pasta, and almost no raw veggies or fiber. Also a couple slivers of pie and a few glasses of wine. At first I saw some spikes but didn’t feel many symptoms. Overall my blood sugar seemed slightly lower than normal. But after one week passed, each day I’ve started to get more and more of my old symptoms. Today I was shaky before both lunch and dinner and I had mega brain fog and I was embarrassed to spend time with my husband’s family because I was feeling dysfunctional again and also so anxious to get the meal when nobody else appeared hungry or concerned about when we would eat. I haven’t felt this almost at all since July when I quit fast carbs. At the same time, I got rather eager to measure this with my glucometer, since I hadn’t truly had full-blown symptoms like this since I started using it. The results? Nothing unusual. The lowest reading was around 88. So frustrating. What is this?

    So I feel motivated again to figure out what this is! Since my lab tests were looking normal and I was feeling mostly better I thought maybe it was nothing. But after this week I’m just so sure again that something isn’t right in maybe relationship with sugar and carbs.

    So... I suspect either regular reactive hypoglycemia, or the “idiopathic” variety since I don’t appear to actually have low glucose readings.

    Can anyone advise me on what tests to suggest to my endocrinologist? She doesn’t seem to “get” this. One thing that confuses me is that high insulin seems to be the common factor between PCOS and reactive hypoglycemia. But my endocrinologist has steadfastly not ordered an insulin test, only glucose. Is this a test that I should get? And what other tests?

    And can anybody be tell me if I’m on the right track in my thinking regarding these symptoms? For those of you experienced with reactive hypoglycemia, do I seem like I’m fitting the symptoms?

    How can I move towards a diagnosis? Any advice will be much appreciated. I’m feeling a bit unsure about all this. Thanks for reading this long post, and thanks for any answers in advance!
    • Hug Hug x 2
  2. Jaylee

    Jaylee Type 1 · Moderator
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    A warm welcome to the forum.

    I'll tag in @Brunneria & @Lamont D to say hello & help you uut on the subject of RH.
  3. GreenUmbrella

    GreenUmbrella · Newbie

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    Thank you!
    • Friendly Friendly x 1
  4. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    I wonder if the sensations you have are due to your blood glucose dropping rapidly and it affecting your brain - so you don't see actual low numbers when you test, but if you had a continuous monitor you would see steep slopes on the graph.
    I experienced wobblies when first lowering my blood glucose levels. I doubt that I was very low, but my brain was used to a nice warm sugary bath after meals and it had a few tantrums about the lack of sugar.
  5. GreenUmbrella

    GreenUmbrella · Newbie

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    Thanks for your reply Resurgam. I do suspect this. I’ve tried to follow spikes using the glucometer, but this week I haven’t had the time to do multiple readings. Really regretted this because I was curious! The few times I have been able to follow a spike they do seem to go up and down quickly. (After the OGTT I dropped from 138 to 51 in 40 minutes. That was a surprise! But I realize the OGTT isn’t exactly normal circumstances).

    I guess I would need to splurge for the continuous monitor myself in this case. I hear they are expensive. I was hoping to catch some of this swingy action in an “official” way (like lab tests) so the endocrinologist would see what I’m talking about. She’s really not interested in the results of glucose meters — she considers them unreliable. The only thing she takes seriously is the official blood draws. I feel like there is something real going on, but how do I prove it?
  6. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi, @GreenUmbrella and welcome to our forum.
    Even though you have had some tests and the tests were inconclusive, this does not mean that there isn't something going on.
    I certainly can't diagnose you, but there are a lot of things that I can relate to.
    How long was your OGTT?
    Ask for the results, you have the right to know.
    Did the person who did the OGTT, test every fifteen minutes or half an hour, pre test. Also take bloods from a cannula during the test. And a c-peptide and GAD tests.
    And of course insulin tests.
    You cannot get an all round picture without these tests.

    You are correct about insulin response to carbs, it is closely linked to insulin resistance and hyperinsulinaemia, (high insulin levels!)
    There has also been an awareness of what high circulating insulin levels, will give you symptoms as you describe.

    Symptoms as you describe are different from person to person, they are similar to most metabolic conditions, were blood sugar levels rise and fall abnormally. It is the imbalance in hormones that triggers the symptoms.
    I would also add, that other hormones might be in play here, but any hormonal imbalance concerning dietary intake is pretty likely.

    There are other hypoglycaemic conditions similar to what you have suggested.
    Even a couple were the patient does not go hypo!

    From your description, I would say that you do suffer from something similar to glucose dumping, which is when glucose that is derived from carbs, wether low carb or not, you will get a high spike, because your initial insulin response is weak, probably because of insulin resistance. And then when you do get the triggered insulin response, your blood sugar levels drop to in or near normal range. Without going hypo!
    If this is so, as you have experienced, low carb relieved the symptoms, the longer you stay low carb, the better you feel.

    Most of Hypoglycaemia cases are individual for many reasons, my insulin response is different from yours, so my intolerance to certain foods is different, either higher or lower.
    This is why, an endocrinologist who has experience in these rarer types of metabolic conditions are much more knowledgeable about the tests required to get a true diagnosis and obviously getting the right tests to find out what is happening every time you eat.
    I will add that intermittent fasting has helped me so much, avoiding the foods that trigger the spikes and triggers hypos, also keep me from feeling awful.
    Hypoglycaemia or similar is most likely.
    Do you keep a food diary?
    It is a useful tool to find out what happens when you eat food!
    That is how I found out about potatoes.
    How can potatoes make ill?
    I know now, but not before I started recording results from my meals.
    You must learn to use your glucometer to get the best results from it.
    It will surprise you, I'm sure!

    There is a lot of information in our forum, so many different people with individual rare conditions, that our medical professionals have not gained the knowledge or come across such conditions to help in any way whatsoever.
    There hasn't been enough research in these conditions, and because they don't understand, what happens, they guess that it could be prediabetic or diabetes itself.
    Most GPs and even some endocrinologists, have never come across Hypoglycaemia or related conditions!
    So, of course, they advise, that a diabetic treatment is the best option eating healthy complex carbs!
    But they still trigger the spike and hypo and make you feel dreadful!

    If you have further questions about anything, we will try and help you.

    Best wishes
  7. ickihun

    ickihun Type 2 · Master

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    Wow. You hv a meter? Good job eh? Was it the endocrologist who suggested using a meter?
    I'm sure your body is telling you how best it feels. Listen to your bodies reaction.
    PCOS is a pain of a disorder for any body size. Have you ever been offered Metformin?
    • Agree Agree x 1
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