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Did this stupid condition cause my PCOS?

Discussion in 'Reactive Hypoglycemia' started by Coolifornia, Jan 17, 2019.

  1. Coolifornia

    Coolifornia Reactive hypoglycemia · Active Member

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    First off, hello everyone! I'm super stoked to have found this forum - FINALLY, I've found other people who are like me! I know I've written a lot, but I hope it's at least entertaining - it has been a strange journey for sure.

    I've been dealing with reactive hypoglycemia from the moment I hit puberty - I'll never forget the first event. I was 11 years old, with my parents in a shopping mall, when suddenly I began shaking violently, sweating, and feeling like I was going to faint. I could barely even walk, so my parents had to hold me by my arms and rushed me to a McDonalds, because my mom had a feeling that whatever was happening to me had to do with blood sugar. Sure enough, 10 chicken nuggets later and some sugar had me feeling alive again. But unfortunately, this has been my life ever since - I experienced RH pretty much daily all throughout my teen years and early adult years, because I never got diagnosed (A1c and fasting glucose were always normal), and I didn't know the connection between RH and carbs, and my diet was mostly carbs. I thought RH happened because I didn't eat enough (I've always been super skinny), so you can imagine the constant blood sugar rollercoaster I was always on, constantly eating carbs all day.

    Fast forward to today: I'm 26 years old, still thin as a rake, and have reason to believe that RH has taken its toll on my body. First, I was completely blindsided by a diagnosis of autoimmune thyroid disease last year (Hashimotos) because nobody in my family has ever had this. But whatever, I started on Levothyroxine and went on with my life, and thought all was well. But THEN, just a few months after that, my periods completely stopped. I knew I couldn't be pregnant, so I went to the doctor to see what could be going on. Turns out, my testosterone levels were massively elevated - over half of the maximum amount that a woman should have! I took a closer look at my face - I was beginning to sprout chin hairs that definitely weren't there before! An ultrasound revealed my ovaries were completely covered in cysts, and with that, I was diagnosed with PCOS (polycystic ovarian syndrome).

    Absolutely nobody, not one woman in my massive Mexican family of 38 first cousins, has PCOS. But nobody in my family has reactive hypoglycemia either - believe me, we've been on a journey of asking and investigating in an attempt to understand what on earth happened to me/who placed a curse on me. Needless to say, I'm pretty angry at life because it all seems massively unfair.

    The good news, I guess, is that I've got my RH under control now. Upon researching PCOS, I learned that there is significant evidence that chronically elevated insulin is the thing that stimulates the ovaries to overproduce testosterone in this condition. Insulin resistance, in fact, is now largely accepted to be the driver of PCOS, so much so that reversing insulin resistance through diet and exercise can reverse the PCOS. So, off to the endocrinologist I went, to check my insulin. I thought this was going to confirm insulin resistance for sure, so I was braced for that news when I received the call from my doctor:

    "Good news", he said, "you have no signs of insulin resistance. Your HOMA-IR is excellent, OGTT was normal, fasting insulin is nice and low".

    WHAT!? But how can that be? How then, can my reactive hypoglycemia and PCOS be explained? Mind you, at the time I had these tests done, I was still eating bowls of noodles and giant burritos, so I was expecting the worst. I suppose I should be happy I'm not insulin resistant, but I feel more confused than before. I resented my doctor for not checking postprandial insulin during the 2-hour glucose tolerance test - I have a feeling we may have caught something unusual. Anyway, my glucose was normal at the end of two hours, so we didn't even catch the hypo. But, an hour after I had walked out of the lab - BAM! - I almost passed out from a massive hypo attack. I told my doctor this, he almost laughed at me and said I was freaking out over nothing. Thanks doc.

    I've had to take all the research into my own hands, since doctors weren't going to help me. I read about low-carb eating, and started applying it - problem solved. As long as I don't eat sugar and refined carbs, I'm fine. But I still have PCOS, and have to take powerful anti-androgens to keep my masculinizing symptoms away. I don't understand, and it has really decreased my quality of life.

    So, I come to y'all with some questions, and to hopefully connect with others who've experienced anything similar to what I have. Absolutely any insight is appreciated!




    1. Is Reactive Hypoglycemia not related to Insulin Resistance? What are your theories on what causes Reactive Hypoglycemia in the first place? I was so young when it started in me, that I don't think lifestyle could have triggered it!

    2. I don't know how much I can trust the accuracy of glucose monitors, but I checked my glucose one hour after eating a burrito from Chipotle (they are massive and very high-carb) and was disturbed when I saw my spike was over 160 mg/dl (8.9 mmol/L)! I read somewhere that normal people never spike over 140 (7.8 mmol/L), but I don't remember where I got that from and don't know if that's true. Thoughts? My glucose was normal when I checked 2 hours later.

    3. A commercial genetic test revealed I may have the mutation for Non Classical Adrenal Hyperplasia, a rare condition more common in Hispanic populations that, symptoms-wise, looks exactly like PCOS, but the pathology is different. I need to run more tests to confirm this, but I'm interested in knowing if anyone here has experience with NCAH and knows whether that is related to blood sugar dysregulation (I can't find a lot of info on it, though at least one source I read claimed that it does affect blood sugar).

    4. Because I was stupid and had gotten so used to them, if I was too busy to eat I would sometimes let my hypos go on for a long time - pretty much until my liver took over and started slowly raising my glucose on its own. I would manage to continue working, walking, or whatever I was doing, while tolerating the horrible feeling of a hypo. Can frequent and prolonged hypoglycemia damage the body or endocrine system?


    And finally, I'd just love to know of any thoughts or similar stories anybody here can share. Thank you so much, and greetings from Los Angeles.

    -C
     
    #1 Coolifornia, Jan 17, 2019 at 8:27 PM
    Last edited: Jan 17, 2019
  2. Jaylee

    Jaylee Type 1 · Moderator
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  3. Coolifornia

    Coolifornia Reactive hypoglycemia · Active Member

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    Thanks so much! :)
     
  4. Brunneria

    Brunneria Other · Moderator
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    Hi and welcome @Coolifornia

    Trouble is, i think that RH is just a symptom, not a thing itself.
    Sorry if that sounds like a copout, but it is, unfortunately true...

    In my case, I too got RH symptoms early (pre teen, actually from around 4 yrs old ish). But that can’t have been caused by the PCOS which arrived in my teens. Then sometime in my late teens, I got more hormonal stuff going on too (prolactinoma) in my pituitary gland. You have thyroid ‘stuff’. I have pituitary ‘stuff’. I got fat. You’ve stayed slim. We both have RH symptoms.

    It is so frustratingly individual.

    You asked about insulin resistance.
    I think that it varies from person to person too. IR is soooo personal. RH involves the overproduction of insulin, so if (like me) you are predisposed to IR, then the excess insulin leads to resistance. Like standing next to a maxed out loud speaker too often, for too long, will send you deaf. Someone else could be exposed to the same amount of insulin and not be so resistant. Same reason most people eat carbs, but only some get type 2 diabetes.

    Pcos and IR go hand, so if you don’t have one, maybe your tests will show you have NACH?
    Ikm afraid I have absolutely no knowledge of it, but I will be googling! :D

    Please let us know how those tests go. :)

    As for hypos causing harm... gosh... big subject. Hypos cause a lot of stress. And stress is harmful. I think anything that causes major stress hormone release repeatedly for years can cause knock on effects. Adrenal exhaustion is one. Then there are a few documented effects that type 1 diabetics get with very low numbers. Some of which potentially affect RHers too. I doubt if you will find many (any) studies on RH hypo effects long term. All I know is that i want to avoid them, and that until i learned to avoid them, my health was slowly deteriorating. Maybe not all of that was the hypos though...

    Hope that helps, even though I have come up with absolutely no definitive answers! Sorry about that!
     
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  5. Coolifornia

    Coolifornia Reactive hypoglycemia · Active Member

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    Thank you so much for your reply @Brunneria ! I really appreciate it. Just reading about someone's similar experience means a lot to me. It is frustrating isn't it, how there aren't any "rules" that RH plays by? There's no guide or standards for treatment, and it seems to vary a lot from one person to the next.

    I like your thoughts on insulin resistance and stress. I've read some frightening articles about RH being a precursor to diabetes. My RH has stayed pretty much the same all my life though - if it was getting worse, then I'd be more concerned. But so far, all that's changed is my wild cascade in hormone function last year. I think it's all connected. Here's hoping we'll both find clearer answers as new discoveries are made.
     
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  6. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi @Coolifornia

    1. Without dietary control, insulin resistance will have a direct impact on your body because of the increased insulin secretion over time, having too much insulin (hyperinsulinaemia)) will cause insulin resistance.

    2. I don't believe that getting a spike over 9mmols is abnormal. Even from non diabetic fasting levels. Even, those that a r e considered normal. With some types of RH, the quick spikes caused by a weak initial insulin response can go into double figures. I would find myself with very high spikes, with a bowl of porridge for example.

    3. Sorry, no idea!

    4. Oh yeah!
    Before diagnosis, I had so many symptoms from the continuous rollercoaster fluctuating blood sugar levels. I was quickly getting less healthy, it effected my brain function, my organs and weight,. It was slowly killing me.
    I had fatty liver, liver function, kidney function, hyperinsulinaemia, hyperglycaemia, Hypoglycaemia, insulin resistance, cholesterol levels high, BP, going higher. I had severe symptoms of anxiety, forgetfulness, memory loss, sleep deprivation.

    My condition is called 'Late, Reactive Hypoglycaemia'. I have no other conditions or medical issues except age!

    In most patients who suffer RH symptoms, RH is a symptom of some other conditions. T2, will happen if you don't get control.
    You can have T2, with RH symptoms, as with other conditions. But you don't necessarily have other conditions because of RH.

    Like yourself, I have had to do the research into my condition, I have spent so many hours trawling through papers on Hypoglycaemia, dietary information, research papers. Talking and discussing treatment and how and why it happens with my endocrinologist, with help from some special people on this forum and learning how to cope day to day with a dietary regime that is considered unhealthy for most people.
    But, it is healthy for me!
    If you tap on my avatar, you will see I have wrote some blogs on my journey. Please read, my battle with medical profession, was long and arduous.

    Keep asking, welcome to our forum.

    Best wishes.
     
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  7. Coolifornia

    Coolifornia Reactive hypoglycemia · Active Member

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    Wow thank you so much for sharing your experience @Lamont D ! I'm so glad you're doing better. I've definitely been starting to feel better in many ways, ever since taking action to prevent RH. I look forward to diving into your blogs. Thanks for sharing your knowledge about RH on this forum - I think I'm understanding more about RH just from sifting through the threads here, than from the measly amount of information Dr. Google provides!
     
  8. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    It is from my personal experience and because of the trials and tribulations going through it, as you have found out, the advice from every medical care provider was similar to T2 and was only going to make your health worse. I had tried every diet that I could find until I was directed to this forum by my endocrinologist. I started low carb, but I found that even low carb and low GI was still too much and triggered the hyper/hypo rollercoaster. So I read up on Keto diet.
    Next I started experimenting, logging everything, talking to others with issues with carbs, reading, research, and then I did a 72 hours fasting test in hospital.
    This changed my life, my attitude and I discovered a lot about myself and my body.
    I didn't hypo when I didn't eat, my health improved when I didn't eat, my energy levels increased dramatically when I didn't eat, my health improved, my mood changed, my symptoms alleviated, I began to smile again, remember things and my brain function improved so much. Because my body was actually healthy because I avoided so called healthy foods. It was the carbs causing my symptoms, it was the carbs making me unhealthy and fat!
    So, I questioned my endocrinologist, he was worried, because I wasn't getting the fibre and nutrition that having as little carbs as possible, according to most medical advice, you need carbs for healthy brain function. I argued the opposite after I had experienced my new diet. My endocrinologist couldn't believe the difference in how I had lost over five stone, my health, my blood panel results.
    More tests, more eOGTTs, more blood tests.
    He finally agreed that I had good control, because I had stopped going hypo for so long. And from my last eOGTT, I still went hypo.
    That is why, no hyper, no hypo is how to treat RH, well, my type of RH!
    My experience is my story and my advice to similar conditions.
    If you read earlier Hypoglycaemia research, RH is called idiopathic post prandial hypoglycaemia. Because they just didn't know the cause of why there was the reaction from food was causing the symptoms, they were misdiagnosing Hypoglycaemia as diabetes, even though they had normal hba1c levels.
    They never did extended OGTT, only two hour tests and of course this would not show the hypo after the test ended.
    My endocrinologist has gone on to treat other RH ers, he has about thirty similar patients from the large area he has had contact with. There are many others out there, there is still too little proper medical research into Hypoglycaemia as a condition.

    Keep battling, keep asking, keep using your food diary, get the knowledge and experience, to help you control your blood sugar levels.

    Best wishes
     
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  9. Coolifornia

    Coolifornia Reactive hypoglycemia · Active Member

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    Thanks @Lamont D ! I also noticed I didn't hypo when I didn't eat, and thought that was strange until I finally understood what was going on. I haven't had a hypo in months now that I know what causes them. Here's hoping for more research that is desperately needed, and so that in the future doctors will know what a patient might be talking about when they complain that they feel "shaky" when hungry. That way people won't suffer most of their lives without diagnosis, the way that we did. I'm so glad you found the right endocrinologist, who seems to have learned a lot from having you as a patient. Really cool that now he can apply that gained knowledge to other RHers!
     
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  10. FindingAnswers

    FindingAnswers · Newbie

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    Hi, just stumbled uppon this thread and found it really interesting. I too have RH and similar symptoms and need more information. I see these posts are almost 2 years old, are you still here or is there a new thread/forum/site/etc for newer information? I would like to share my long journey and battle with this too and what I've learnt...
    Thank you heaps!
     
  11. Goonergal

    Goonergal Type 2 · Moderator
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    Hi there. I don't think the person you're addressing has been around for a while. I'd advise starting your own thread. You're in the right part of the forum - Reactive Hypoglycemia.
     
  12. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Aaaand I just realised this is a very old post I'm responding to. Still.. Might as well leave it up, took a while to write, haha.


    About PCOS versus the other version that causes cysts too... Have you ever noticed anything off about your periods before they just came to a sudden halt? I got my first period very early (Think I was 10 or something), and then had it every 2 weeks. I practically bled out every time, so while I was put on iron tablets first, I ended up being the youngest kid in my school on birth control, just so I wouldn't be so weak and leaking right through the pads all the time. PCOS seems to always have been with me. Legs hairier than my husband's (I'm a veritable gorilla), indeed, hairs where I don't want them on my chin and upper lip, I'm quite infertile which -thank god- agrees with me, and whatnot. I find it a bit odd that, if that is the case, you never noticed anything before they stopped, and between my Hashi's, diabetes and PCOS I was quite overweight, so... Maybe it really isn't PCOS, but the other thing, which then wouldn't per se be related to insulin resistance. Also, your doc should have ordered an EXTENDED OGTT, as a short one is basically a waste of time, which very few docs seem to know. Can you fund a Libre (CGM) for a week, do a OGTT at home and show them the results? Just an idea. You saying you're hypo doesn't make much of an impression as you're "probably just a hysterical female". Slapping them over the head with some carefully recorded numbers that prove you 100% right might have more of an effect.

    Stick with the low carbing for the RH. I didn't find out the way I'd been feeling on occasion had been RH until that was already in my rearview mirror. If you keep spiking insulin, as RH is an overshoot, you might in time become insensitive to your own insulin. Looking back, I think that's what happened to me. Between that and PCOS, T2 running in the family and whatnot, I didn't have a prayer when no-one bothered to tell me I was prediabetic. (Then at least I would've known what to research and would have found out about low carb instead of low fat, and would've avoided the whole T2 thing!).

    All in all.... Listen to your gut. Not a doc who basically laughs at you. It's no laughing matter, it's your body and you're kind of stuck having to live in it. They don't have that luxury.

    Good luck!
    Jo
     
  13. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Gooner's made a good point. Make your own thread to avoid confusion (....Like me responding to a very, very old thread from someone who doesn't need my help), and you'd get more responses too.

    Good luck!
    Jo
     
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