Need the wisdom and help of those here - diabetes related but not quite diabetes

[Replenished]

I'll try and keep this as brief as possible but it's a bit of an explanation to get through.

Around 8 years ago I developed extreme thirst, frequent urination and dehydration. A typical sign of diabetes some would say. But my blood glucose and Hba1c were completely normal. It was then suspected I may have diabetes insipidus (insufficient anti-diuretic hormone) not related to diabetes mellitus. My tests for that were borderline at first proving I was losing to much urine and getting dehydrated but my bloods then seemed normal later on. I tried the replacement hormone desmopressin for this condition (replacing the lack of anti-diuretic hormone and telling the kidneys to conserve fluid/urine) but it did not help me and hence it was concluded I did not have this condition.

Years have gone by with the permanent state of dehydration, frequent urination, thirst to the point I end up in a&e barely able to function, but they can never find the cause.

More recently I have been reading about insulin and it's effect on the kidneys and that it actually helps the body retain electrolytes and fluid by some mechanism. Don't ask me on the exact details, I'm still trying to get my head around it. But the point of my post is, the only thing that slightly helps my symptoms and helps me retain fluid somewhat and reduce the thirst/dehydration, is if I drink very high sugar drinks, such as fruit juice etc and/or eat extremely high carb all day every day. That is the only thing that helps. I've tried every electrolyte combo you can imagine and unless there is high glucose involved it does nothing to hydrate me or help reduce my thirst.

Now, I'm wondering do I have some underlying insulin issue that is causing me to be dehydrated. Causing my kidneys to malfunction in some way and stop me retaining fluid. I'm wondering if trying something like Metformin might help me but equally unsure who would prescribe it given my fasted glucose and Hba1c are good/normal.

Any thoughts would be greatly appreciated on this issue. Or for those that aren't sure, could I simply ask have you noticed Metformin helping reduce your urination or feel less thirsty for those of you that had such symptoms. Thank you.

 

[Lamont D]

Hi @Replenished

Have you been referred to a specialist endocrinologist?
Do you test your BG levels regularly?
Do you have other symptoms?

I ask these questions because your story reminds me of some of my experience before a true diagnosis was found. I was misdiagnosed with T2. But found after tests and recording BG levels around food to have fasting BG levels. I was found to be non diabetic.
I would point out at this juncture that you do not have my condition.
I have no idea, what is going on with you.
And I am not allowed to diagnose per forum rules.
Metformin is prescribed to help with organ protection and helps with excessive glucose restriction from your liver, commonly known as a liver dump or glucogenisis. Which in turn reduces the BG levels you would be getting without it. But it is only prescribed mainly to those with T2 which you don't have, being non diabetic.
However there is other conditions that are non diabetic which need the tests from a specialist.
It took me a long time to get diagnosis and had to battle for the referral.
Then find a way of living with my condition. Which wasn't easy!
I wish you well on your journey.

 

[Replenished]

Hi @Replenished

Have you been referred to a specialist endocrinologist?
Do you test your BG levels regularly?
Do you have other symptoms?

I ask these questions because your story reminds me of some of my experience before a true diagnosis was found. I was misdiagnosed with T2. But found after tests and recording BG levels around food to have fasting BG levels. I was found to be non diabetic.
I would point out at this juncture that you do not have my condition.
I have no idea, what is going on with you.
And I am not allowed to diagnose per forum rules.
Metformin is prescribed to help with organ protection and helps with excessive glucose restriction from your liver, commonly known as a liver dump or glucogenisis. Which in turn reduces the BG levels you would be getting without it. But it is only prescribed mainly to those with T2 which you don't have, being non diabetic.
However there is other conditions that are non diabetic which need the tests from a specialist.
It took me a long time to get diagnosis and had to battle for the referral.
Then find a way of living with my condition. Which wasn't easy!
I wish you well on your journey.

Thanks Lamont. I've seen many many specialists and I can't say any have had much of a clue, hence you have to be your own doctor at times and hence the post here. These also Chlorpropamide which was previously used for diabetes and I've read helped many people with similar symptoms to mine but it seems it's no longer available.

 

[Replenished]

Anyone have any ideas?

 

[barrym]

I’ve no comment to make specifically about your condition, but have you considered milk as a drink? A once watched a TV program where they did a test between popular energy drinks, water and milk and concluded milk was the best. It was hardly a scientific test, but seems fairly obvious to me that ol’ mother nature usually gets things right, and hydration, and for energy and nutrients all in one cup seems like a pretty good choice.

Can’t remember the test process exactly but it was a measure of liquid taken, then what was urinated, the difference being hydration or dehydration.

What’s to lose? Worth a try.

HTH