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Majorly confused

bevjane74 profile image
11 Replies

Hi there I'm new to the group, and I'm apologising in advance for the long post. Advice is really needed.

I was diagnosed as having non diabetic hypoglycaemia a few month ago, I was given some printed out advice from the GP on that advice it states I am not diabetic I am not borderline diabetic but this illness comes with all the risks of diabetes without having the illness itself. I was concerned about it as I displays nearly all of the symptoms so went to talk to my GP - she informed me that all the diagnosis means is I am borderline diabetic! And now they call borderline diabetes non diabetic hypoglycaemia! Doing my research I discovered with borderline diabetes there are no symptoms and if you carry on the lifestyle you have you're more likely to develop diabetes, where as with non diabetic hypoglycaemia you can actually go into a coma this could happen if you develop a blindness to the symptoms. After a massive discussion with my GP I decided to change surgeries feeling as if my care wasn't being taken seriously! In my new surgery there is a GP who specialises in diabetes so had a telephone appointment with him, to my horror he said exactly the same thing that non diabetic hypoglycaemia is the new wording for borderline diabetes!!

My uppermost fear are the symptoms I get and am terrified of ending in a coma one day, and the medical professionals seem to be down grading what non diabetic hypoglycaemia is, being told borderline diabetes to some people may be just brushed off as nothing to worry about but non diabetic hypoglycaemia is quite serious and I really don't know where to turn for help as I suffer from symptoms and they scare me when they happen but those are ignored by the doctors and I'm simply told to eat a couple of jelly babies where as if its the reactive part of non diabetic hypoglycaemia then I may need a top up of glucose to stop these attacks from happening - I just thought I'd post here to see if there's anywhere I can get some help from and some much needed advice, I'm being sent to a diabetes prevention class to stop me from developing diabetes but I think that would be a waste of time due to the fact I apparently don't have diabetes - hence the title of this post - helppppp pleassssseeeee

And thank you for bearing with me on my very long probably boring post

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bevjane74
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11 Replies
bevjane74 profile image
bevjane74

Thank you so much for that information I am taking it on board, and yes I have realised lower fat versions of anything does actually make me worse - the thing I should have probably mentioned in my original post is I have Glut1 type epilepsy which again is controlled by glucose levels and to control that I'm supposed to go onto the ketogenic diet which I really worry about that it may have an effect on the non diabetic hypoglycaemia, I wish there was a consultant I could speak to who covers all of this so I can do what is best as I'm being advised to eat little and often from all the medical staff and when I don't I risk seizures too! I am actually a walking medical encyclopedia 🤣 as I said my concern is doing something to help one illness could have a direct effect on the other but maybe following the advice may cover both and I don't know as a diabetic doctor doesn't have knowledge of epilepsy and the same goes for a neurologist too - and I'm sorry if I'm bending your brain I just don't know where to turn for help as it's so complicated 😕

Praveen55 profile image
Praveen55Star

bevjane74

First of all, please post your blood test report. If you are not on any diabetic medications/insulin it is extremely unlikely that you will go in diabetic coma. However, the blood glucose can drop very low causing dizziness on eating simple carb loaded meal.

Dietary changes will fix your problem and you may avoid diabetes altogether if you follow the low carb lifestyle.

I believe you may have taken OGTT. Can you post the results? Have you taken HbA1c test also?

bevjane74 profile image
bevjane74 in reply to Praveen55

I get blood tests done every year due to being apparently borderline diabetes the last test that was performed was when I was told I had non diabetic hypoglycaemia, the year before that I was told I had glucose intolerance (according to the GP these are all terms used for borderline diabetes, which I think is really wrong) I've never been giving the readings of my tests although last year I was given a copy of my files but not sure what I would be looking for to give you the readings - again thank you so much for your input I'm taking all information on board and hopefully I'll be able to get an appointment to try and iron all this out and get some confirmations 😊

Praveen55 profile image
Praveen55Star in reply to bevjane74

Thanks. If you want to understand and fix your conditions, it is important to know the relevant numbers. You can always ask the surgery office staff to supply you the latest lab test report. Unless you know your real conditions, how can you conclude something.

bevjane74 profile image
bevjane74 in reply to Praveen55

I'll have a look and confirm this with you when I get my hands on my files and have a look through my blood tests 😊

ThreeSmiles profile image
ThreeSmiles

Hi bev

You have confused me that’s for sure. ☹️ They say you are borderline diabetic and they are sending you to a diabetes prevention class. To me that makes absolute sense and it seems you are being well looked after?

PS if you feel you need a glucose boost have 4 or 5 tablets of Glucose, such as Dextrose Energy tablets. That was one option I was told about on the X-Pert Diabetes course I was referred to. Perhaps you should go on that course. It is simply set up by your Diabetes Nurse or GP.

Good luck - particularly in finding the solution to stop you worrying!

Miles

bevjane74 profile image
bevjane74 in reply to ThreeSmiles

It's not the fact they've said that it's the fact they've since said I have non diabetic hypoglycemia which is quite a serious condition but when I've asked the doctor for advice they've told me all it means is I'm borderline diabetes - but these are two different things and one of them is really serious, both doctors I've spoke to have said it's the new phrase for being borderline diabetic but it's a completely different thing and I don't think doctors should be telling you it's one thing when it's not - and I'm displaying symptoms of non diabetic hypoglycaemia which is being brushed under the carpet by the doctors I'm speaking to

ThreeSmiles profile image
ThreeSmiles in reply to bevjane74

Ok 😕

Collie44 profile image
Collie44 in reply to ThreeSmiles

Hi Three Smiles. I have suffered from non diabetic Hypoglycemia since I was young. My son is a diabetic. We know what's a hypo ... For any reason. Last weel I read an article about epinephrine and norepinephrine acting as hormones in the endocrine system .... Which is functioning ,,,, and acting as nuerochemical in the brain within ... So like the director. the HPA Axis. Hypothalamus, Pituitary and Adrenals. I've spent a lifetime looking for the answer myself so I'm extremely hopeful. I see a new Endocronologist that specialises in the Adrenal glands, this coming Thursday. Find an Endo that specialises in the adrenal system. And move forward from there. Symptoms of a hypo

Sweating

Weakness

Headaches.

Confusion

Nausea

Teariness

Breathing issues

Pins and needles

Tingling

Anxiety

Panic

Chronic fatigue

Trouble talking

Balance.Issues

Unconsciousness

Next time it happens have a cup of tea and nibble on something long acting ... Banana, cheese and crackers, nuts etc sit quietly for an hour and you should feel yourself pick up. You may still feel tired or drained tho. Buy hypo symptoms will dissipitate.

If your levels drop suddenly .. try 1 or 2 glasses orange juice, a handful of lollies, and a glass of water. Note:, the water is very important. The water interacts with the straight sugar and juice to balance out pushing your levels up fast to stop you from bouncing and dropping further. Then nibble on something a little more long acting. If out I always go for potatoe cakes or hot chips because potatoe is long acting. Keep me updated. Hope this info helps. Keep searching for your answers

bevjane74 profile image
bevjane74

They say its non diabetic hypoglycaemia which is an illness of which I do have symptoms of, but they're saying this is the new phrase used to describe borderline diabetes - borderline diabetes doesn't present any symptoms and yet non diabetic hypoglycaemia does and those symptoms are serious no-one is explaining anything to me other than a change of lifestyle will stop you becoming diabetic but non diabetic hypoglycaemia doesn't evolve into diabetes it's an illness all of its own but controlled by glucose levels (I think) I just wish someone in the medical profession would explain things to me properly before something serious happens - which I really hope doesn't but you've summed up pretty much how I'm feeling so least I know it's not just me who's wondering all this stuff - thank you

bevjane74 profile image
bevjane74

No honestly it's not I don't know if I can post a link but ima gonna try

hormone.org/diseases-and-co...

This is what I've been told I've got

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