Non diabetic hypos

[Bw2534]

Hi all I’m under investigation for diabetes insipidus after being really thirsty amongst other symptoms.

I’ve also been experiencing non diabetic hypos but apparently anything under 2.7 is a hypo not 4.0 so no medical prof will acknowledge it.

I’ve had 12 hypos last week and when I have them I go grey shakey and struggle speaking which are classic symptoms.

My levels range from 2.7-3.8 when hypo and symptomatic.

Don’t really know what to do should I keep testing and treating with glucose tabs?

Also they happen randomly and not 2hrs after food.

 

[Lamont D]

Hi all I’m under investigation for diabetes insipidus after being really thirsty amongst other symptoms.

I’ve also been experiencing non diabetic hypos but apparently anything under 2.7 is a hypo not 4.0 so no medical prof will acknowledge it.

I’ve had 12 hypos last week and when I have them I go grey shakey and struggle speaking which are classic symptoms.

View attachment 52453

My levels range from 2.7-3.8 when hypo and symptomatic.

Don’t really know what to do should I keep testing and treating with glucose tabs?

Also they happen randomly and not 2hrs after food.

Hi @Bw2534 welcome to the forum.

Who told you it is not a hypo unless it is recorded below 2.7?
My specialist endocrinologist who is very good and others agree, that non diabetic Hypoglycaemia is below 3.5.
I'm still trying to figure out what is happening on your chart, and on some days you don't have hypos, on other days, even if you start normal, you continue to go hypo most of the day. Your Hba1c is great, your fasting is good, it is something triggering the symptoms, but with the infrequent hypos and the amount of carbs you eat, it probably is not reactive hypoglycaemia. It is also unlikely because the report says you didn't have hyperglycaemic. With RH, the trigger is a hyper from carbs.
But there is a possibility of other conditions, which causes infrequent hypos and the symptoms you describe. I hope not!
Speak to your GP, and you will need a referral to a specialist endocrinologist.

Let us know how you get on.

My best wishes

 

[Bw2534]

Hi @Bw2534 welcome to the forum.

Who told you it is not a hypo unless it is recorded below 2.7?
My specialist endocrinologist who is very good and others agree, that non diabetic Hypoglycaemia is below 3.5.
I'm still trying to figure out what is happening on your chart, and on some days you don't have hypos, on other days, even if you start normal, you continue to go hypo most of the day. Your Hba1c is great, your fasting is good, it is something triggering the symptoms, but with the infrequent hypos and the amount of carbs you eat, it probably is not reactive hypoglycaemia. It is also unlikely because the report says you didn't have hyperglycaemic. With RH, the trigger is a hyper from carbs.
But there is a possibility of other conditions, which causes infrequent hypos and the symptoms you describe. I hope not!
Speak to your GP, and you will need a referral to a specialist endocrinologist.

Let us know how you get on.

My best wishes

Hi This was the endocrinologist that told me that.
My hypos aren’t triggered by food I don’t think, I get them in the mornings and randomly the graph isn’t clear.

I’m having other symptoms so I think it’s probably related to the underlying issue rather than food.

I’m just a bit lost

 

[Lamont D]

Hi This was the endocrinologist that told me that.
My hypos aren’t triggered by food I don’t think, I get them in the mornings and randomly the graph isn’t clear.

I’m having other symptoms so I think it’s probably related to the underlying issue rather than food.

I’m just a bit lost

There is quite a long list of conditions that can have the symptoms of or actual hypos.
There is one that is actually called Hypoglycaemia. There is a condition called idiopathic postprandial Hypoglycaemia syndrome, you get actually no Hypoglycaemia.
There are a few pancreatic conditions, and a few that are so rare, that actually getting a diagnosis is unusual.
And to make it worse, you will need a series of tests that are designed to achieve nothing but discounting other conditions, so from the fact you are non diabetic is first step, next , if your endocrinologist has any experience of Hypoglycaemia. Is a extended OGTT test. To see if you have any intolerance to sugar or carbs.

Hopefully you will get better news, soon.
The good news is you are not diabetic, but I would still lower the carbs.

If you have any questions, maybe, we might know how to help you.

 

[ratherbegliding]

Hi there,

Firstly, well done on testing regularly and keeping records - 'if you can't measure it you can't manage it', as my old boss used to say...

As a general comment, I thought the constant thirst was brought about by high sugars not low ones?
Your readings all look great to me (I'm a T1) other than the obvious hypos.
So, yes, there is something going on here....

In order to minimise the hypo syptoms have you considered switching to a keto diet?
Basically, your body switches from running on carbs to running on fat.
I find this minimises the worst of the hypo symptoms and should help with your overall blood sugar control (as your insulin requirements are greatly reduced so the pancreas (your body's insulin production mechanism) is under less stress).

I presume you are not taking any other meds? Do you suffer from anything else?

Also, set your alarm one night to take a blood sugar test around 3am ..... would be interesting to see what's happening overnight for you to wake up with a hypo.

Best of luck
RBG

 

[Bw2534]

Hi there,

Firstly, well done on testing regularly and keeping records - 'if you can't measure it you can't manage it', as my old boss used to say...

As a general comment, I thought the constant thirst was brought about by high sugars not low ones?
Your readings all look great to me (I'm a T1) other than the obvious hypos.
So, yes, there is something going on here....

In order to minimise the hypo syptoms have you considered switching to a keto diet?
Basically, your body switches from running on carbs to running on fat.
I find this minimises the worst of the hypo symptoms and should help with your overall blood sugar control (as your insulin requirements are greatly reduced so the pancreas (your body's insulin production mechanism) is under less stress).

I presume you are not taking any other meds? Do you suffer from anything else?

Also, set your alarm one night to take a blood sugar test around 3am ..... would be interesting to see what's happening overnight for you to wake up with a hypo.

Best of luck
RBG

Hey firstly thanks for your lovely comment!
The constant thirst and other symptoms is separate from the hypos, they think I have a condition called diabetes insipidus which is an issue with the pituitary gland rather than the pancreas it causes the same symptoms as high bg though hence the diabetes part.

I ended up in A&E because of the thirst frequent toilet visits etc as I was sure it was T1D thankfully not although it’s obviously not a simple problem that can be fixed at the moment either!

I was then referred to an endo who I saw today who’s doing the water fast test and disregarded the hypos which are actually impacting me more than the other symptoms (I’ve got used to them) but the hypos catch me off guard.

I’m an athlete and eat mostly plant based I’ll look into keto if possible, he tried to say my hypos are ketosis and stuff but I don’t understand how that’s possible randomly.

I take no meds apart from medical weight gain shakes, I have cerebral palsy alongside all this and in 2019/20 I suffered horrifically with gastro issues which have resolved since going plant based.

I will do a 3am check definitely, some other people in my position have also mentioned a libre to help.

 

[Bw2534]

There is quite a long list of conditions that can have the symptoms of or actual hypos.
There is one that is actually called Hypoglycaemia. There is a condition called idiopathic postprandial Hypoglycaemia syndrome, you get actually no Hypoglycaemia.
There are a few pancreatic conditions, and a few that are so rare, that actually getting a diagnosis is unusual.
And to make it worse, you will need a series of tests that are designed to achieve nothing but discounting other conditions, so from the fact you are non diabetic is first step, next , if your endocrinologist has any experience of Hypoglycaemia. Is a extended OGTT test. To see if you have any intolerance to sugar or carbs.

Hopefully you will get better news, soon.
The good news is you are not diabetic, but I would still lower the carbs.

If you have any questions, maybe, we might know how to help you.

Thanks so much for all your advice so far it’s really helpful, I feel so lost after being dismissed today in some respects so all this is helpful.

I’m glad I’m not diabetic I was genuinely worried I was going to get a diagnosis as I have all the symptoms, but on the other hand whatever my diagnosis is isn’t great either but hey ho.

The endo wants me to do a water fast test to see if I have diabetes insipidus which is an issue with the kidneys/pituitary gland not pancreas although causes symptoms of high bg hence the diabetes part.

I guess I should just keep testing and treating if I have symptoms of a hypo and try and bring it up with the gp to see if I can get help with strips as it’s like £12 a pot.

 

[ratherbegliding]

Hi again,
It's interesting you mention you've had serious gastro issues in the past..... your gut, endocrine system etc...it's all connected at the end of the day!
How/why autoimmune conditions occur is little understood by modern medicine.

Libre will definitely help with the gathering of data. I don't use them regularly now, but when I first got them they definitely helped identify a couple of interesting trends and I was able to make adjustments accordingly.
They aren't too expensive either if you have to buy your own....

Try to log your carb intake as well as your blood sugar readings (count the carbs....such fun ).
See if you can spot a pattern between what you are eating and hypo episodes.
I also log exercise (I use the Mysugr app, which is what your screenshot looks like?)

TBH though, your medical history is a bit beyond my realm of experience...I am not a medical professional!

Cheers

 

[Bw2534]

Hi again,
It's interesting you mention you've had serious gastro issues in the past..... your gut, endocrine system etc...it's all connected at the end of the day!
How/why autoimmune conditions occur is little understood by modern medicine.

Libre will definitely help with the gathering of data. I don't use them regularly now, but when I first got them they definitely helped identify a couple of interesting trends and I was able to make adjustments accordingly.
They aren't too expensive either if you have to buy your own....

Try to log your carb intake as well as your blood sugar readings (count the carbs....such fun ).
See if you can spot a pattern between what you are eating and hypo episodes.
I also log exercise (I use the Mysugr app, which is what your screenshot looks like?)

TBH though, your medical history is a bit beyond my realm of experience...I am not a medical professional!

Cheers

Yeah I did wonder if this was autoimmune in nature due to it’s sudden onset could also be to do with a brain injury a year ago I’m sure it all contributes.

I think libre offer a 14 day free trial which should be enough to collect data hopefully .

Yeah you’re right this is mySugr app very helpful in collecting data I use my fitness pal too which can help with carbs looks like I’ll have to tackle the hypos myself until I’m believed.

I’m going to get back to training tomorrow and if it causes a hypo then so be it, more data at the end of the day .

Cerebral palsy is brain damage caused by premature birth- for me it means I can’t walk unaided.

 

[Lamont D]

Thanks so much for all your advice so far it’s really helpful, I feel so lost after being dismissed today in some respects so all this is helpful.

I’m glad I’m not diabetic I was genuinely worried I was going to get a diagnosis as I have all the symptoms, but on the other hand whatever my diagnosis is isn’t great either but hey ho.

The endo wants me to do a water fast test to see if I have diabetes insipidus which is an issue with the kidneys/pituitary gland not pancreas although causes symptoms of high bg hence the diabetes part.

I guess I should just keep testing and treating if I have symptoms of a hypo and try and bring it up with the gp to see if I can get help with strips as it’s like £12 a pot.

I will tag @Rachox to give you information about testing monitors and strips.
Are you sure it's a water fasting test?
Or just a fasting test?
I had the fasting test and I was in hospital for the five days duration of the test.
This is a test to see if you can go hypo when fasting.
If you do get a diagnosis, the recommended treatment for most blood sugar dysregulation endocrine conditions can be controlled by a balanced diet, reducing your carbs, do have a look @dietdoctor.com for some great ideas how you can improve your diet.
I say this, but add a proviso, that due to my intolerances, a carb is a carb, and all food with an above a very very low account will trigger a reaction.

Do keep asking, keep us informed, stay safe.

 

[EllieM]

I’m having other symptoms so I think it’s probably related to the underlying issue rather than food.

Like @Lamont D I am puzzled that your endo has told you you're not hypo unless under 2.7, but the good news is that you are seeing an endocrinologist who should hopefully get to the bottom of your symptoms, though it may take them some time, as there are a large number of possible causes.

 

[Bw2534]

I will tag @Rachox to give you information about testing monitors and strips.
Are you sure it's a water fasting test?
Or just a fasting test?
I had the fasting test and I was in hospital for the five days duration of the test.
This is a test to see if you can go hypo when fasting.
If you do get a diagnosis, the recommended treatment for most blood sugar dysregulation endocrine conditions can be controlled by a balanced diet, reducing your carbs, do have a look @dietdoctor.com for some great ideas how you can improve your diet.
I say this, but add a proviso, that due to my intolerances, a carb is a carb, and all food with an above a very very low account will trigger a reaction.

Do keep asking, keep us informed, stay safe.

Thankyou.

Yeah it’s definitely a water fast as this is the one of the ways to diagnose D.I.
The support I’ve received tonight it’s just what I needed I’ve learnt way more tonight and it’s given me hope now I’ve found people that understand.

I’ll update this thread when I know more.

 

[Bw2534]

Like @Lamont D I am puzzled that your endo has told you you're not hypo unless under 2.7, but the good news is that you are seeing an endocrinologist who should hopefully get to the bottom of your symptoms, though it may take them some time, as there are a large number of possible causes.

I know I’m super confused as I now don’t know if it’s worth testing and treating if they’re not real hypos.

Hopefully as time goes on we can sort the original issue out and hopefully with that the hypos go.

 

[EllieM]

I know I’m super confused as I now don’t know if it’s worth testing and treating if they’re not real hypos.

My feeling is that keeping good records of food and blood sugar may give your doctors some clues on your condition. And as a T1 I am not legal to drive a car if my bg is under 4 so I'm not sure how safe you would be driving in that condition either. I hate hypos with a passion, and in your position I would be pushing the specialist to recognise that you are having them and give you some suggestions on how to treat them.

Good luck.

 

[Rachox]

Hi @Bw2534


Here’s some info on UK meters, and to be clear I have no commercial connections with any of the companies mentioned.


HOME HEALTH have the Gluco Navii, which is a fairly new model and seems to be getting good reviews, links to the strips and the meter:

https://homehealth-uk.com/all-produ...ose-meter-test-strips-choose-mmol-l-or-mg-dl/

There are also discount codes for when you come to buy more strips - "navii5" and "navii10" will give you 20% off purchases of 5 packs of strips and 25% off 10 packs of strips respectively.


Then they sell the older SD Code Free, details to be found here!

https://homehealth-uk.com/all-products/codefree-blood-glucose-monitoring-system-mmoll-or-mgdl/

Discount codes for the Code Free strips

5 packs 264086

10 packs 975833





SPIRIT HEALTHCARE have a meter called the Tee2 + found here:



https://shop.spirit-health.co.uk/co...e2-blood-glucose-meter?variant=19264017268793

with the strips found here:



https://shop.spirit-health.co.uk/co...py-of-tee2-test-strips?variant=19264017367097

Some members have got a free Tee2+ by phoning up to order, with a large order of strips they often throw the meter in for free:

Phone number 0800 8815423


With more expensive strips is their Caresens Dual, this one has the advantage of glucose and ketone testing in one machine, it’s to be found here:

https://shop.spirit-health.co.uk/collections/caresens-dual



If there is a choice of units of measurement then ‘mmol/L’ are the standard units in the UK, ‘mg/dl’ in the US, other countries may vary.