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Hypoglycemia without cause

D

DEM1988

Active Member
Messages
25
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi,

I'm not diabetic. I've been suffering persistent bouts of hypoglycaemia which is getting worse. I can have 3-4 attacks a day.

My blood glucose ranges at these times between 3.2-3.6mmol. My lowest was when I first checked myself back in February and I was 2.6mmol.

I've just got back from A and E after suffering 6 hypos in 18 hours.

I've been told that my blood sugars are normalish and I am not at risk of imminent death (doctors words, not mine). I already have a referral to Endocrinology for late next month. The doctor says: I'm checking my blood glucose too much (I don't think I do, I only check when I'm poorly and 9 times out of 10 my blood glucose is below 3.8mmol), I'm anxious at the time of checking which is forcing the blood glucose to drop, I need to eat more (I am 13 stone - I've gained 2 stone since February because the doctors tell me to eat more) and they can't rule out insulinoma. They've said I should wait to see Endocrinology.

I am now really confused because my GP, the doctor at the walk in centre and two Advanced Clinical Practitioners who are diabetic nurses have all said my hypos are concerning but A and E are saying they aren't.

Any advice?

PS: I've booked in for a C-peptide blood test privately as one of the ACPs said it would be a good idea. I am considering using what little savings I've got to go to a private hospital as the persistent hypos (if they are indeed hypos as the A and E doctor didn't think they were) are wearing me out.
 
Hi @DEM1988 , welcome to the forum.

Have you found any relation between eating and going low? Do you go low in the hours after eating or do you also go low when you haven't eaten for a long time, say in the early morning before breakfast?

You might want to have a look in this subforum to see if any of it rings a bell: https://www.diabetes.co.uk/forum/category/reactive-hypoglycemia.70/
 
Hi, there doesn't seem to be a pattern to my hypos. I can wake with them, I can have them after doing the housework or taking my dog for a walk, I can have them when relaxing, sometimes I get stuck in a sort of loop where I have a hypo, treat it then an hour later have another hypo and this can repeat all day.

Post-prandial hypoglycemia has been ruled out and so has Addison's Disease. My Hb1AC is steady at 33.

I think I'm a bit of a mystery but nobody in the medical system seems to care unfortunately.
 
DEM1988 said:
Hi, there doesn't seem to be a pattern to my hypos. I can wake with them, I can have them after doing the housework or taking my dog for a walk, I can have them when relaxing, sometimes I get stuck in a sort of loop where I have a hypo, treat it then an hour later have another hypo and this can repeat all day.

Post-prandial hypoglycemia has been ruled out and so has Addison's Disease. My Hb1AC is steady at 33.

I think I'm a bit of a mystery but nobody in the medical system seems to care unfortunately.
Click to expand...
There are many types and causes of hypoglycaemia. Reactive Hypoglycaemia is just one. The reason, that you have been given a link to the RH forum is because it covers much more than RH!
I had the experience of having many hypos a day due to the reaction from the food I was eating!
It was great you got referred to a specialist, hopefully you get the tests necessary for a diagnosis.

It could be something to do with your pancreas, as there are a few conditions of the pancreas that causes hypoglycaemia.

Any more questions or information, I will try and help.

Best wishes.
 
@DEM1988 - Sorry, but I'd like to ask you a few questions before commenting further:

- what led you to start looking at your blood sugars?
- How do you measure your blood sugars?
- You mention various times when you have found yourself going low. Do you find yourself hungry at those times?
- what is your strategy when you find yourself low? What do you do to counteract it?
- Do you have any other health conditions? (Such as blood anomalies, thyroid challenges, just as examples)
- You mention you have gained weight through this; are you a healthy weight?
- If you carry any excess weight, is it well distributed, or focused on any particular part of your body?

(Sorry, I'm good on questions. :) )
 
AndBreathe said:
@DEM1988 - Sorry, but I'd like to ask you a few questions before commenting further:

- what led you to start looking at your blood sugars?
- How do you measure your blood sugars?
- You mention various times when you have found yourself going low. Do you find yourself hungry at those times?
- what is your strategy when you find yourself low? What do you do to counteract it?
- Do you have any other health conditions? (Such as blood anomalies, thyroid challenges, just as examples)
- You mention you have gained weight through this; are you a healthy weight?
- If you carry any excess weight, is it well distributed, or focused on any particular part of your body?

(Sorry, I'm good on questions. :) )
Click to expand...
Hi,

Great questions; my answers are below:

- what led you to start looking at your blood sugars?

It was my dad, who is type 2 diabetic, who noticed that I had symptoms of hypos so he decided to test me using his glucometer and I was 2.6mmol.

- How do you measure your blood sugars?

I use a GP issued Gluco Rx Q glucometer.

- You mention various times when you have found yourself going low. Do you find yourself hungry at those times?

Rarely, I only tend to feel hungry when I drop into the 2-3mmol range.

- what is your strategy when you find yourself low? What do you do to counteract it?

The doctor who I saw a fortnight ago at the walk-in clinic prescribed Glucogel which is great stuff. I try and eat a carbohydrate based meal and have used dextro-energy glucose tabs.

- Do you have any other health conditions? (Such as blood anomalies, thyroid challenges, just as examples)

I am currently under investigation for breathing issues and I have a tumour in my leg which I am awaiting an operation to remove. No confirmation whether this is cancerous but I had a tumour removed from the same location 4 years ago and it turned out to be a benign tumor called a fibrous histiocytoma. I suffer really badly with migraines including hemiplegic migraines.

- You mention you have gained weight through this; are you a healthy weight?

I'm not, I'm overweight according to the BMI tool. I weigh about 12 stone 10 ounces.

- If you carry any excess weight, is it well distributed, or focused on any particular part of your body?

I don't carry much excess weight. I have well distributed weight throughout my body.


Regards,
Dave
 
DEM1988 said:
Hi,

Great questions; my answers are below:

- what led you to start looking at your blood sugars?

It was my dad, who is type 2 diabetic, who noticed that I had symptoms of hypos so he decided to test me using his glucometer and I was 2.6mmol.

- How do you measure your blood sugars?

I use a GP issued Gluco Rx Q glucometer.

- You mention various times when you have found yourself going low. Do you find yourself hungry at those times?

Rarely, I only tend to feel hungry when I drop into the 2-3mmol range.

- what is your strategy when you find yourself low? What do you do to counteract it?

The doctor who I saw a fortnight ago at the walk-in clinic prescribed Glucogel which is great stuff. I try and eat a carbohydrate based meal and have used dextro-energy glucose tabs.

- Do you have any other health conditions? (Such as blood anomalies, thyroid challenges, just as examples)

I am currently under investigation for breathing issues and I have a tumour in my leg which I am awaiting an operation to remove. No confirmation whether this is cancerous but I had a tumour removed from the same location 4 years ago and it turned out to be a benign tumor called a fibrous histiocytoma. I suffer really badly with migraines including hemiplegic migraines.

- You mention you have gained weight through this; are you a healthy weight?

I'm not, I'm overweight according to the BMI tool. I weigh about 12 stone 10 ounces.

- If you carry any excess weight, is it well distributed, or focused on any particular part of your body?

I don't carry much excess weight. I have well distributed weight throughout my body.


Regards,
Dave
Click to expand...
Thanks for responding,. Dave. In return, I'll respond, all in GREEN, to allow for isolation.

- what led you to start looking at your blood sugars?

It was my dad, who is type 2 diabetic, who noticed that I had symptoms of hypos so he decided to test me using his glucometer and I was 2.6mmol.

Thanks

- How do you measure your blood sugars?

I use a GP issued Gluco Rx Q glucometer.

Thanks. Have you ever considered investing in a Libre sensor, which would track your blood sugars, 24/7, for 2 weeks? There is a free trial available I believe, but it is for those diagnosed with some form of diabetes. Sensors cost c£50, so not cheap, but very inciteful.

- You mention various times when you have found yourself going low. Do you find yourself hungry at those times?

Rarely, I only tend to feel hungry when I drop into the 2-3mmol range.

I must admit, when I go sub-3, I'm usually very ready to eat! I don't see you mention your HbA1c test result. Do you have that? I'd be astonished it it wasn't done.

- what is your strategy when you find yourself low? What do you do to counteract it?

The doctor who I saw a fortnight ago at the walk-in clinic prescribed Glucogel which is great stuff. I try and eat a carbohydrate based meal and have used dextro-energy glucose tabs.

Do you test your blood sugars after the Glucogel? If you do, when do you test, and what readings do you get and how do you feel?

I have to be careful here. I am not telling you what to do, but I can tell you what I would do in your shoes.

When this happens, I would try having a cup of tea or coffee with milk in, just to nudge my blood sugars up a bit.

- Do you have any other health conditions? (Such as blood anomalies, thyroid challenges, just as examples)

I am currently under investigation for breathing issues and I have a tumour in my leg which I am awaiting an operation to remove. No confirmation whether this is cancerous but I had a tumour removed from the same location 4 years ago and it turned out to be a benign tumor called a fibrous histiocytoma. I suffer really badly with migraines including hemiplegic migraines.

I'm curious about when you have breathing issues? Are those times linked at all to your wonky blood readings? Similarly your migraines? Do they happen around your blood sugar challenges?

- You mention you have gained weight through this; are you a healthy weight?

I'm not, I'm overweight according to the BMI tool. I weigh about 12 stone 10 ounces.

- If you carry any excess weight, is it well distributed, or focused on any particular part of your body?

I don't carry much excess weight. I have well distributed weight throughout my body.

Bonus question: Has your Endo done any insulin testing?
 
- Thanks. Have you ever considered investing in a Libre sensor, which would track your blood sugars, 24/7, for 2 weeks? There is a free trial available I believe, but it is for those diagnosed with some form of diabetes. Sensors cost c£50, so not cheap, but very inciteful.

I've never heard of the Libre sensor but it sounds brilliant, I'll definitely be interested in that. My Nurse thought about using something like that for a period of two weeks but decided an urgent referral to Endocrinology was a better option.

- I must admit, when I go sub-3, I'm usually very ready to eat! I don't see you mention your HbA1c test result. Do you have that? I'd be astonished it it wasn't done.

My HbA1c is an excellent 33 mmol.

- Do you test your blood sugars after the Glucogel? If you do, when do you test, and what readings do you get and how do you feel?

I have to be careful here. I am not telling you what to do, but I can tell you what I would do in your shoes.

When this happens, I would try having a cup of tea or coffee with milk in, just to nudge my blood sugars up a bit.

I check 20 minutes after using Glucogel and by then the glucose has gone up about 1-1.5mmol. I feel loads better when my sugars go back to normal. I used to have a sugary tea with 3 digestive biscuits which used to help but unfortunately because of how quick my blood glucose drops (it's very rapid) and at unexpected times that the Glucogel has been a life saver for me.

- I'm curious about when you have breathing issues? Are those times linked at all to your wonky blood readings? Similarly your migraines? Do they happen around your blood sugar challenges?

That's really interesting as I've never really linked them together (neither have my doctors). I started suffering from hemiplegic migraines and breathing issues in 2015 - at the time my doctor thought I'd suffered a stroke or had Multiple Sclerosis. I'll definitely make myself more aware to see if there's any link.

Bonus question: Has your Endo done any insulin testing?

Unfortunately I haven't seen the Endocrinologist yet. It's taken me 8 months to get referred. I just hope that they can fix me. I'm hoping to start my own business and I'm also a full time carer for my mum. I haven't got time to be ill - lol.

Thankyou AndBreathe, it's really nice talking to someone about this. You're obviously a very nice person and I appreciate your time.

Regards,
David
 
DEM1988 said:
- Thanks. Have you ever considered investing in a Libre sensor, which would track your blood sugars, 24/7, for 2 weeks? There is a free trial available I believe, but it is for those diagnosed with some form of diabetes. Sensors cost c£50, so not cheap, but very inciteful.

I've never heard of the Libre sensor but it sounds brilliant, I'll definitely be interested in that. My Nurse thought about using something like that for a period of two weeks but decided an urgent referral to Endocrinology was a better option.

- I must admit, when I go sub-3, I'm usually very ready to eat! I don't see you mention your HbA1c test result. Do you have that? I'd be astonished it it wasn't done.

My HbA1c is an excellent 33 mmol.

- Do you test your blood sugars after the Glucogel? If you do, when do you test, and what readings do you get and how do you feel?

I have to be careful here. I am not telling you what to do, but I can tell you what I would do in your shoes.

When this happens, I would try having a cup of tea or coffee with milk in, just to nudge my blood sugars up a bit.

I check 20 minutes after using Glucogel and by then the glucose has gone up about 1-1.5mmol. I feel loads better when my sugars go back to normal. I used to have a sugary tea with 3 digestive biscuits which used to help but unfortunately because of how quick my blood glucose drops (it's very rapid) and at unexpected times that the Glucogel has been a life saver for me.

- I'm curious about when you have breathing issues? Are those times linked at all to your wonky blood readings? Similarly your migraines? Do they happen around your blood sugar challenges?

That's really interesting as I've never really linked them together (neither have my doctors). I started suffering from hemiplegic migraines and breathing issues in 2015 - at the time my doctor thought I'd suffered a stroke or had Multiple Sclerosis. I'll definitely make myself more aware to see if there's any link.

Bonus question: Has your Endo done any insulin testing?

Unfortunately I haven't seen the Endocrinologist yet. It's taken me 8 months to get referred. I just hope that they can fix me. I'm hoping to start my own business and I'm also a full time carer for my mum. I haven't got time to be ill - lol.

Thankyou AndBreathe, it's really nice talking to someone about this. You're obviously a very nice person and I appreciate your time.

Regards,
David
Click to expand...
Just to update.

I've bought the Libre 2 and it's been amazing and eye opening. I am having multiple hypos while sleeping with my blood glucose dropping to 3.0mmol.

The unusual thing is that when I wake up my blood glucose rises into the >4.0mmol range. This is really interesting as without the Libre I wouldn't have known about the hypos as I used to check myself on waking and my glucose levels would be in the normal range.

I've just started a part time evening job doing delivery driving but it's been very hard work trying to keep my glucose levels right. I haven't disclosed my hypos as none of the healthcare professionals have said I am not allowed to drive but according to the DVLA I shouldn't drive until the cause of the hypos has been rectified.

Thanks,
David
 
DEM1988 said:
Just to update.

I've bought the Libre 2 and it's been amazing and eye opening. I am having multiple hypos while sleeping with my blood glucose dropping to 3.0mmol.

The unusual thing is that when I wake up my blood glucose rises into the >4.0mmol range. This is really interesting as without the Libre I wouldn't have known about the hypos as I used to check myself on waking and my glucose levels would be in the normal range.

I've just started a part time evening job doing delivery driving but it's been very hard work trying to keep my glucose levels right. I haven't disclosed my hypos as none of the healthcare professionals have said I am not allowed to drive but according to the DVLA I shouldn't drive until the cause of the hypos has been rectified.

Thanks,
David
Click to expand...
Another update:

I'm having 6 hypos a day at the moment dropping to about 2.9mmol.

The doctor has told me to stop driving as I have developed hypo unawareness.

I have had a normal C-peptide blood test.

I thought it could be being caused by my migraine medication so I stopped taking it and that didn't stop the hypos.

It's not reactive hypoglycemia as it doesn't happen after eating or exercise.

I'm at a total loss as I think I can now rule out both insulinoma and Addison's Disease given the good C-peptide blood test result.
 
DEM1988 said:
Another update:

I'm having 6 hypos a day at the moment dropping to about 2.9mmol.

The doctor has told me to stop driving as I have developed hypo unawareness.

I have had a normal C-peptide blood test.

I thought it could be being caused by my migraine medication so I stopped taking it and that didn't stop the hypos.

It's not reactive hypoglycemia as it doesn't happen after eating or exercise.

I'm at a total loss as I think I can now rule out both insulinoma and Addison's Disease given the good C-peptide blood test result.
Click to expand...
I was surprised when I did my research into RH.
About the number of different types, reasons why, how many conditions that have hypoglycaemic episodes, so it is not the end of the diagnostic tests to find out why!

I was told immediately on my first appointment with my endo to stop driving. Even though the the licensing authority didn't know what RH was!
But if you can prove that you can control it, after diagnosis, you might be able tondrive, and the proviso that you test beforehand. But don't drive until you do.

You will get there, keep bothering your doctor, you need to know what is going on.

Best wishes and let us know how you get on.
 
Hi everyone,

I'd like to update anyone who is curious about this.

I had an appointment with two Endocrinology doctors this week who are 80% sure that I have insulinoma. Due to other issues that I have, such as intermittent agonising abdominal pain and small non-cancerous tumours developing in my fibrous tissue and neurofibromas, they suspect that I have a genetic disease.

I have to have tests done at the hospital where they wait until I have a hypo then take some blood samples to meet something called Whipple's Triad.

I'll keep you posted.
 
DEM1988 said:
Hi everyone,

I'd like to update anyone who is curious about this.

I had an appointment with two Endocrinology doctors this week who are 80% sure that I have insulinoma. Due to other issues that I have, such as intermittent agonising abdominal pain and small non-cancerous tumours developing in my fibrous tissue and neurofibromas, they suspect that I have a genetic disease.

I have to have tests done at the hospital where they wait until I have a hypo then take some blood samples to meet something called Whipple's Triad.

I'll keep you posted.
Click to expand...
Thanks for the update and good luck with the tests/treatments.
 
DEM1988 said:
Hi everyone,

I'd like to update anyone who is curious about this.

I had an appointment with two Endocrinology doctors this week who are 80% sure that I have insulinoma. Due to other issues that I have, such as intermittent agonising abdominal pain and small non-cancerous tumours developing in my fibrous tissue and neurofibromas, they suspect that I have a genetic disease.

I have to have tests done at the hospital where they wait until I have a hypo then take some blood samples to meet something called Whipple's Triad.

I'll keep you posted.
Click to expand...
I did mention in my post that it could have been something pancreatic.
That test is a diagnostic tool to determine along with scans to determine treatment.
Hope it goes well for you and do let us know.

Best wishes
 
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