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