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Wondering how many have undiagnosed RH?

Discussion in 'Reactive Hypoglycemia' started by Kaz261, Feb 23, 2016.

  1. Kaz261

    Kaz261 Reactive hypoglycemia · Well-Known Member

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    I've had several conversations lately with people that have, or know someone that has similar symptoms to RH. Makes you wonder how many are undiagnosed?

    My hairdresser has just been telling me of an 80 year old client who has suddenly started to pass out and have hypos. After several trips in an ambulance to A&E she been diagnosed with RH. My Optician says she gets very cold and shaky if she doesn't eat every couple of hours and is better when reducing carbs. She's also passed out a few times and believes she may have a mild form of RH having spoken to me! Similar story with a receptionist at my GP surgery.

    Just reflecting I guess. If I think back to 5 months ago, I can see how far I've come. Still not as controlled as I'd like and some days are unpredictable, but I've made headway thanks to you guys. Just makes me a little sad for the people who suffer these strange symptoms, with know idea what's causing it or how to make it better.
     
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  2. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    I believe I've wrote the following words many times.
    There are those out there that have RH, like I was because of the lack of knowledge within general practice,the nature of triage at surgeries is not geared to determining such rare conditions, the quick diagnosis of its T2, and the difficulty of getting a endocrinologist who knows what blood glucose disorders are, are few and far between. There is also those like brun who can't or won't get a diagnosis because they are T2, you can have both, you can have multiple conditions and RH.
    They are still and not surprisingly following the NICE guidelines and the NHS stereotypical advice of eating 'complex' carbs. Carbs are carbs for us! But they don't believe we can live healthy without them. Well, we can!
    As you say Kaz, there must be lots more, that just don't know.
    The number of those with anxiety problems, don't get tested.
    The plain truth is, not many people have even heard of RH! Even medical people!
    You just have to see how many have read the forum to know, that it is so unknown and understandable that there are those will never know what is really happening to them and why they are struggling!
     
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  3. Brunneria

    Brunneria Other · Guru
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    Invite them to the forum!
    Seriously.

    I think RH is hugely unrecognised and very widespread. The amount of misdiagnosis and confusion of RH with stress, anxiety, depression, food dysfunction, compulsive eating, PMT... The list goes on and on!

    How many people's 'depression' is really bg mood swings? Hypo hell, and post hypo weepies?

    There is also a strong argument that RH is a kind of Pre-Pre-Diabetes.

    Wouldn't it be fab to head people off the T2 path before they reached permanent damage?
     
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  4. Kaz261

    Kaz261 Reactive hypoglycemia · Well-Known Member

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    What a small world we live in! I have to share this with you as I'm chuffed to bits. By chance, I've just been in touch with a lady who I used to play with as a child. She was diagnosed with diabetes last year, but I've just found out that for many years before that she suffered with RH. She lives in the same village and we're going to meet for a chat. It'll be lovely to talk to someone in person who knows the daily struggles!
     
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  5. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Yes, it is so coincidental!

    The weirdness carries on.

    Or are you dreaming?

    What is reality?

    I've said it before and no doubt I'll say it again, there are so many more out there, that haven't a clue, what is happening to them!

    Hope you have a lovely meet up.

    You could even advise her about how we control it and even get her to have a look at our great forum. The more the merrier!
     
  6. Kaz261

    Kaz261 Reactive hypoglycemia · Well-Known Member

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    I will Nosher! You guys are brilliant and it would be brilliant to help as many people as we can. She said that since her diabetes diagnosis, her RH has become far easier to manage. It'll be so nice to talk to someone who understands!
     
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  7. Lilliepop

    Lilliepop · Well-Known Member

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    Hi. I have just posted something on this subject on "Ask a question " Could you please have a look at it and see if you have the same symptoms. I haven't been on here for a while don't remember seeing about RH should have down the list of titles.
    This is really getting me down. I know the Dr will dismiss it.
     
  8. Brunneria

    Brunneria Other · Guru
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    It is probably best if you have a good read of the various RH threads, and decide if you think you fit, and if the coping strategies are something you are willing to try.

    We can't diagnose anything for other forum members, and a doctor isn't going to take our views into account.

    In addition, the main treatment for RH is to control it by diet - which is in our hands. Most of the time doctors just say 'yup, it looks like RH, eat an RH diet'.
     
  9. Kaz261

    Kaz261 Reactive hypoglycemia · Well-Known Member

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    Hi and welcome to the forum. As Brun has already said, none of us can diagnose you with RH but hopefully can point you in the right direction. Do you have a glucose monitor? If not, I would highly recommend getting one. Test your bs before eating, then test again one hour after first bite and again at two hours. When you feel symptomatic, test your bs to see if the symptoms are a result of high or low levels.

    The tiredness after eating carbs could be a result of your blood sugar rising quite high. If I were you I would keep a food diary and note your corresponding bs levels. You can then take this to your GP. Have a read around the forum, there's loads of information and advice.

    Good luck and I hope you get some answers soon.
     
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  10. arniemouse

    arniemouse Type 2 · Well-Known Member

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    Hi am beginning to realise that I am totally spoilt and feel very sorry for those of you who are still battling the NHS. I have the most delightful consultant and a diagnosis of RH (and I have type 2 as well so it is possible) plus a really good GP whose motto is 'if I can prescribe it you can have it'. Keep battling there because we do need to make more doctors aware of this problem.
     
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  11. Kaz261

    Kaz261 Reactive hypoglycemia · Well-Known Member

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    I too was lucky enough to find a consultant who at least knew of RH and did the right test to diagnose it. My GP is also willing to prescribe pretty much anything I ask for, but doesn't know what will help!
     
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  12. Alicki

    Alicki Reactive hypoglycemia · Well-Known Member

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    What tests did They do Kaz? I had GTT, insulin résistance and c petitide test
     
  13. Kaz261

    Kaz261 Reactive hypoglycemia · Well-Known Member

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    I just had a prolonged GTT. I had the typical RH fast spike and then hypo'd after three hours. My insulin levels were never tested (I wish they were). What test did you have to determine insulin resistance?
     
  14. Alicki

    Alicki Reactive hypoglycemia · Well-Known Member

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    Cpetitide test and insulin résistance. I know its a little expensive but going privately, you could demand these tests . Cpetitide was done at O Hours and then 2 Hours after GTT . We saw that Although my ceptitide levels were find at 0 Hours, at 2 Hours then were 3500 pmol instead of 1980 pmol max . GTT Was: 4.2 first hour (too low), 7.3 second hour (look at the jump from 4.2 to 7.3!!! And leveling off at 6.0 at 3rd hour.

    I don't have the full picture of the problem. Off to see pancreatic specialist this week. I can ask a general question on your behalf if you like. I'm exhausted so waiting to see if I'm anemic too which could be caused by diet in my case.
    My BG levels tend to stay the same before and after eating, or thés drop from 4.9 to 4.6 (low for me).
    Im beginning to think i havé à bug in my intestines - more screening needed.
    You need a plan and good doctors. If NHS canto do that then Find sont her solution. Health is everything and in GB you really have some of the top consultants in the Wolrd
     
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  15. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi @Alicki

    Through my wanderings through the medical interweb, I have come across a bacteria that is called Helicobacter pylori, that some believe is a reason why RH develops.

    Worth asking!

    Hope it's goes ok for you!
     
  16. Kaz261

    Kaz261 Reactive hypoglycemia · Well-Known Member

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    Thanks Alicki. I hope your appointment with the specialist goes well. Keep us posted. We might have some top consultants but unfortunately it's not easy getting to see one!
     
  17. Alicki

    Alicki Reactive hypoglycemia · Well-Known Member

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    I had pylori and it caused havoc. And Will get an endoscopy to get it tested. We Have to push but tis easy enough to get the tests we need because everyone in Swtzerand has private insurance. I only experienced the Nhs as a child . The Harley street consultants are good but sooooooo expensive, i had to go once because of weird condition that the Swiss could nt diagnose. Thanks for all the support, Will report back
     
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  18. Alicki

    Alicki Reactive hypoglycemia · Well-Known Member

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    Saw specialist, says in my case, such levels aren't normal, mri, endoscopy more tests. Checking for insolinoma even if my hypos are only low fours. Will keep u updated. Very dedicated specialists
     
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  19. Alicki

    Alicki Reactive hypoglycemia · Well-Known Member

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    They are worried about too much insulin
     
  20. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    That will do it every time!

    As you have already said and posted that you have hyperinsulinaemia.
    The effects of that are hypos.
    It all depends on how your other hormones respond to the excess insulin.
    That's the difference between other RH ers.

    But, it still does require not creating more. And that is control.

    Did they say anything about dietary advice?
    Are they looking at meds?
     
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