Hello, new here but needing advice.

[Shannon95]

Hi, I'm new here and need some advice.

I have a lot of diabetic symptoms but after a recent blood test last week it has come back negative, they tested for Diabetes, thyroid, anemia, liver and kidney and have said the results are normal with no further action required.

My symptoms are I'm always thirsty and needing to wee often which is unusual for me, I have tingling in my hands, I am always tired, weak, blurry vision and my head feels cloudy like I can't concentrate or remember much.

If I don't eat often i feel weak, shaky, very hot and sweaty yet cold to touch, blurred vision, agitated and clammy and feeling sick and hungry.
I've lost consciousness twice with this feeling and after a lot of research its sounding like hypoglycemia yet my tests came back negative for this.

I've always been a healthy lady, I'm 24. I've been dealing with this for about 8 months now and managing it with having a sugary drink etc when these 'hypo' feelings happen. Yet this past month has been horrible where I now feel poorly and weak all the time and I'm scared to leave the house in case I have one of these feelings.

A nurse done a finger prick kind of blood sugar test which came back 7.2 after not eating for around 6 hours which she has said is normal yet these feelings are not.

I'm just looking for some advice, possible answers or some helpful information really as the doctors are saying I am perfectly healthy yet my body is telling me another thing. Trust your body as they always say ‍♀️

Sorry for such a long winded post just really wanting some help so I can start to feel normal again ☺️

 

[rebrascora]

Hi Shannon and welcome

Your symptoms sound really frightening and are clearly knocking your confidence to go out.

I wonder if you have a rare disorder called Reactive Hypoglycaemia. This is where your body responds to carbohydrates almost in the opposite way to diabetes. For us diabetics, eating carbs causes our blood glucose to go high and it usually peaks 2 hours after a meal and it is the high BG which causes us problems. Those of us who inject insulin have to try to calculate how much to inject and when, to counteract that glucose because we don't produce enough of our own insulin.... if we miscalculate we can go hypoglycaemic but it is not the diabetes that causes that, but us not getting the dose right and it is a very tricky balance which makes us marvel at the ability of a healthy functioning pancreas to produce exactly the right amount of insulin at the right time. Unfortunately with RH (Reactive Hypoglycaemia) the pancreas doesn't quite get it right and you might not get enough insulin at first and then too much causing a mixture of hypers ( Blood Glucose goes too high and that is when you feel tired and anxious) and hypos when your BG does too low and you feel shaky and light headed and dizzy and passing out in exceptional circumstances. Going from one extreme to another can be very unpleasant indeed and it is something that many of us will remember from our early days of diagnosis and using insulin.

A fasting BG test will not show this disorder and even an HbA1c which is the normal diabetes diagnostic is unlikely to show any real abnormality because the highs and lows will probably cancel themselves out. The HbA1c is sort of an average of 3 months worth of BG readings.

I think the way to identify this condition would be to get a Blood Glucose Monitor and test after you eat a carb heavy meal. I believe there is a medical test for diabetics which involves eating a known amount of carbs and then testing to see how your BG responds. Do some research yourself on Reactive Hypoglycaemia and see if what you find ties in with the way you are feeling.

You should push for your GP to refer you to a Diabetes specialist but without a diabetes diagnostic test coming back positive they are unlikely to do so. If they will not refer you, then ask/plead/beg for the use of a BG meter and test strips for a month and keep a food diary along with readings before eating each meal, what the meal consisted of and readings 1, 2 and 3 hours after and particularly test when you feel unwell.

If they will not supply you with a meter, you could perhaps self fund as they are relatively inexpensive @ approx. £15 for a basic model and many people here on the forum who are Type 2 diabetic do this. The ones we recommend are the SD Gluco Navii or the Spirit Healthcare Tee2. You need to buy extra test strips for them as they only come with 10 and the reason we recommend these 2 models is that the test strips for them are the cheapest on the market at £8 for a pot of 50. You go through quite a lot of test strips in a month testing as I have suggested, so it is worth buying at least 2 extra pots when you order your meter.

I believe the way to manage the disorder is to eat small lowish carb meals little and often rather than large carb heavy meals..... it would be interesting to know is the really bad spells occurred an hour or two after eating a carb heavy meal if you are able to remember... this is why keeping a food diary together with markers when you feel unwell might help along with BG readings if you are able to self fund.

Anyway, I hope this at least gives you something to research and go back to your Doctor armed with more information.

Please let us know how you get on.

 

[brisr949]

Maybe diabetes insipidus?

 

[rebrascora]

Discovered another possible.... Insulin Autoimmune Syndrome

 

[Shannon95]

Hi Shannon and welcome

Your symptoms sound really frightening and are clearly knocking your confidence to go out.

I wonder if you have a rare disorder called Reactive Hypoglycaemia. This is where your body responds to carbohydrates almost in the opposite way to diabetes. For us diabetics, eating carbs causes our blood glucose to go high and it usually peaks 2 hours after a meal and it is the high BG which causes us problems. Those of us who inject insulin have to try to calculate how much to inject and when, to counteract that glucose because we don't produce enough of our own insulin.... if we miscalculate we can go hypoglycaemic but it is not the diabetes that causes that, but us not getting the dose right and it is a very tricky balance which makes us marvel at the ability of a healthy functioning pancreas to produce exactly the right amount of insulin at the right time. Unfortunately with RH (Reactive Hypoglycaemia) the pancreas doesn't quite get it right and you might not get enough insulin at first and then too much causing a mixture of hypers ( Blood Glucose goes too high and that is when you feel tired and anxious) and hypos when your BG does too low and you feel shaky and light headed and dizzy and passing out in exceptional circumstances. Going from one extreme to another can be very unpleasant indeed and it is something that many of us will remember from our early days of diagnosis and using insulin.

A fasting BG test will not show this disorder and even an HbA1c which is the normal diabetes diagnostic is unlikely to show any real abnormality because the highs and lows will probably cancel themselves out. The HbA1c is sort of an average of 3 months worth of BG readings.

I think the way to identify this condition would be to get a Blood Glucose Monitor and test after you eat a carb heavy meal. I believe there is a medical test for diabetics which involves eating a known amount of carbs and then testing to see how your BG responds. Do some research yourself on Reactive Hypoglycaemia and see if what you find ties in with the way you are feeling.

You should push for your GP to refer you to a Diabetes specialist but without a diabetes diagnostic test coming back positive they are unlikely to do so. If they will not refer you, then ask/plead/beg for the use of a BG meter and test strips for a month and keep a food diary along with readings before eating each meal, what the meal consisted of and readings 1, 2 and 3 hours after and particularly test when you feel unwell.

If they will not supply you with a meter, you could perhaps self fund as they are relatively inexpensive @ approx. £15 for a basic model and many people here on the forum who are Type 2 diabetic do this. The ones we recommend are the SD Gluco Navii or the Spirit Healthcare Tee2. You need to buy extra test strips for them as they only come with 10 and the reason we recommend these 2 models is that the test strips for them are the cheapest on the market at £8 for a pot of 50. You go through quite a lot of test strips in a month testing as I have suggested, so it is worth buying at least 2 extra pots when you order your meter.

I believe the way to manage the disorder is to eat small lowish carb meals little and often rather than large carb heavy meals..... it would be interesting to know is the really bad spells occurred an hour or two after eating a carb heavy meal if you are able to remember... this is why keeping a food diary together with markers when you feel unwell might help along with BG readings if you are able to self fund.

Anyway, I hope this at least gives you something to research and go back to your Doctor armed with more information.

Please let us know how you get on.

Wow thank you so much for your suggestion, I've read into reactive hypoglycemia and it does sound very similar, I'll definitely be telling all these suggestions to my GP and asking for a BG meter. I can't thank you enough for all of this

 

[Shannon95]

Maybe diabetes insipidus?

I'll look further into this, thank you very much!

 

[Birdy]

Hello and welcome to the forum. I hope you find an answer as you just can't live like that. Keep demanding until you get the answers. Getting a proper diagnosis for anything seems to be very difficult.

 

[ColinUK]

Hello

Can’t add much more to anything that others have already said but wanted to say Hi nevertheless

 

[trophywench]

I'm not sure the test rebrascora mentioned - an 'Oral Glucose Tolerance Test' would crack it. Or indeed whether they would want to do one at the mo, as it involves taking some blood, you drinking a measured amount of something glucosey eg Lucozade within a short space of time, then waiting two hours and then taking some more blood, sending the vials off to the lab and receiving the results from them. Much easier to test at home if you can, at the mo and then presenting the GP with the results. The home tests should be enough to inform you and him/her whether you do have a reactive hypo prob or not and if not - then he'll have to investigate what else it is - cos you clearly aren;t right!

 

[everydayupsanddowns]

Welcome to the forum @Shannon95

Sorry to hear about the symptoms you are experiencing. It sounds very unpleasant for you.

We aren’s qualified to give any medical advice here, of course, nit I find it interesting that the symptoms you mention are all related to diabetes, but to very different parts of it - and your BG result seemed perfectly normal,

Thirstiness, urination, and blurred vision usually associate with extended periods of high blood glucose. High enough to push the kidneys into trying to ‘flush out’ the excess glucose by weeing more. This would mean BG in excess of 10mmol/L for long periods.

Whereas shakiness, sudden profound hunger, clamminess and sweating can be symptoms of low blood glucose.

Of course, all these symptoms can have other causes too...

I guess the only way for you to see of the symptoms you are experiencing are related to changes in your BG levels (especially the shakiness etc) would be to check your BG when the symptoms happen. If you can’t get one from your GP, you can easily pirchase one - the most affordable meters members here have found are the SD Gluco Navii or the Spirit Tee2which both have test strips at around £8 for 50

Good luck, and let us know how you get on!

 

[Shannon95]

Hello all, thank you all for your replies, advice and help it's been so appreciated and has helped.

I've spoken to another doctor, sounded like a strange conversation but made slight sense when he explained it..

He believes these feelings of low blood sugar could be digestion related such as very mild IBS, he said about trying to treat me for IBS and seeing if this can help these hypo feelings.
He's requested I test my own blood glucose and keep a diary with meals and results.

Has anyone else experienced this?

 

[Toucan]

Hello @Shannon95
Thanks for updating us, and it is good to know that your doctor has found a possible way to help you.
If your doctor hasn't supplied you with a meter, then there is some information above from @everydayupsanddowns that will help with this.
I hope things work out well for you.

 

[Shannon95]

Hello @Shannon95
Thanks for updating us, and it is good to know that your doctor has found a possible way to help you.
If your doctor hasn't supplied you with a meter, then there is some information above from @everydayupsanddowns that will help with this.
I hope things work out well for you.

Let's hope they crack it I'll definitely check out the meters suggested, thank you very much

 

[trophywench]

If the other doc you spoke to is at your GP surgery then THEY should be prescribing the meter and the strips, since THEY have asked you to test! Are they giving you a prescription re the IBS? or what?

 

[Shannon95]

If the other doc you spoke to is at your GP surgery then THEY should be prescribing the meter and the strips, since THEY have asked you to test! Are they giving you a prescription re the IBS? or what?

I thought this too, they've asked me to come in so I'll question them on this. He said about prescribing me some tablets for IBS for a week or so to see how I feel. He said what they may be but I can't remember which ones x