Insulinoma

[DEM1988]

Hi,

I currently have a provisional diagnosis of Reactive Hypoglycaemia but I'm starting to think this is not correct.

Before being provisionally diagnosed with RH, I was told that it could be Insulinoma but the MRI came back normal. If I fast at home I can trigger a hypo within about 12 hours but when I get to hospital my blood glucose goes back into the >4mmol range.

I don't understand why my blood glucose returns to normal when I am in hospital.

The last time I was told to fast for my Endocrinologist I was 2.9mmol at home and then when I got to hospital I was 3.9mmol.

Does anybody understand this?

BTW I use a GlucoRx Q meter.

 

[Pipp]

Hello, and welcome @DEM1988
This is the forum article on Reactive Hypoglycemia.

Reactive Hypoglycemia – Hypos After Eating

Reactive hypoglycemia is the general term for having a hypo after eating, which is when blood glucose levels become dangerously low following a meal.

www.diabetes.co.uk

I don’t have personal experience of the condition, but I hope some of our members that do will be along to offer advice.
@Lamont D is one of our knowledgeable members. I have tagged him, so hopefully he will repond when he sees this.

 

[Lamont D]

Hi,

I currently have a provisional diagnosis of Reactive Hypoglycaemia but I'm starting to think this is not correct.

Before being provisionally diagnosed with RH, I was told that it could be Insulinoma but the MRI came back normal. If I fast at home I can trigger a hypo within about 12 hours but when I get to hospital my blood glucose goes back into the >4mmol range.

I don't understand why my blood glucose returns to normal when I am in hospital.

The last time I was told to fast for my Endocrinologist I was 2.9mmol at home and then when I got to hospital I was 3.9mmol..!

Does anybody understand this?

BTW I use a GlucoRx Q meter.

Hi @DEM1988 ,
I don't believe it is classic reactive hypoglycaemia. Though it could one of the hypoglycaemic conditions.
If you go low when fasting, then it is not RH.
RH is a condition that reacts after you eat, you spike abnormally high quickly, you hypo low.

Blood glucose can be effected by many reasons. Including your hormones, which when you see a doctor your readings might fluctuate a bit. And if low, I would imagine it rising in those circumstances.

What is your normal morning fasting blood glucose levels?
Your hba1c?

 

[AndBreathe]

Hi,

I currently have a provisional diagnosis of Reactive Hypoglycaemia but I'm starting to think this is not correct.

Before being provisionally diagnosed with RH, I was told that it could be Insulinoma but the MRI came back normal. If I fast at home I can trigger a hypo within about 12 hours but when I get to hospital my blood glucose goes back into the >4mmol range.

I don't understand why my blood glucose returns to normal when I am in hospital.

The last time I was told to fast for my Endocrinologist I was 2.9mmol at home and then when I got to hospital I was 3.9mmol.

Does anybody understand this?

BTW I use a GlucoRx Q meter.

Have you been told to attend hospital if you experience a hypo? is there any common trend to what you might have eaten or drunk when you experience these low sugar events?

What have you been told to do regarding treating any hypos? How do you feel when your sugars are low?

In usually healthy folks, their bodies will help out if their blood sugar drops between a certain, quite personal level, but certainly at a medically concerning level. It is colloqually called "liver dump". Essentially when our bodies release certain hormones, such as adrenaline, cortisol and gluvagon out liver is signalled to release some of it's glucose store to hwlp us out.

 

[DEM1988]

Hi @DEM1988 ,
I don't believe it is classic reactive hypoglycaemia. Though it could one of the hypoglycaemic conditions.
If you go low when fasting, then it is not RH.
RH is a condition that reacts after you eat, you spike abnormally high quickly, you hypo low.

Blood glucose can be effected by many reasons. Including your hormones, which when you see a doctor your readings might fluctuate a bit. And if low, I would imagine it rising in those circumstances.

What is your normal morning fasting blood glucose levels?
Your hba1c?

Hi Lamont D, we've talked before on the RH forum.

My HbA1C was 36 last time I was checked. On a morning I can be anything from 2.9mmol to 4.8mmol.

 

[DEM1988]

Have you been told to attend hospital if you experience a hypo? is there any common trend to what you might have eaten or drunk when you experience these low sugar events?

What have you been told to do regarding treating any hypos? How do you feel when your sugars are low?

In usually healthy folks, their bodies will help out if their blood sugar drops between a certain, quite personal level, but certainly at a medically concerning level. It is colloqually called "liver dump". Essentially when our bodies release certain hormones, such as adrenaline, cortisol and gluvagon out liver is signalled to release some of it's glucose store to hwlp us out.

Hi,

Have you been told to attend hospital if you experience a hypo?
No. Before seeing an Endocrinologist I used to have to go to hospital as I was usually in the 2.4-3.2mmol range and the NHS 111 operator used to get scared. By the time I'd had a sugary drink (advice from 111) and drove to hospital I would be over 4.0mmol so the A and E doctor would tell me to go home.


is there any common trend to what you might have eaten or drunk when you experience these low sugar events?
Caffeine causes me hypos but I've cut caffeine out of my life. Their doesn't seem to be any pattern, I've tried different diets under the supervision of a Dietician but nothing seems to control the hypoglycemic attacks. I also thought exercise was a trigger but I have ruled this out as well.


What have you been told to do regarding treating any hypos? How do you feel when your sugars are low?
I have fast acting carbohydrates for when I have a hypo including snacks, glucose tablets and glucogel. I have hypo unawareness most of the time so a lot of the times I have recognised that I'm having a hypo it's been when I've randomly checked my blood glucose during the day.

 

[Lamont D]

Hi,

Have you been told to attend hospital if you experience a hypo?
No. Before seeing an Endocrinologist I used to have to go to hospital as I was usually in the 2.4-3.2mmol range and the NHS 111 operator used to get scared. By the time I'd had a sugary drink (advice from 111) and drove to hospital I would be over 4.0mmol so the A and E doctor would tell me to go home.


is there any common trend to what you might have eaten or drunk when you experience these low sugar events?
Caffeine causes me hypos but I've cut caffeine out of my life. Their doesn't seem to be any pattern, I've tried different diets under the supervision of a Dietician but nothing seems to control the hypoglycemic attacks. I also thought exercise was a trigger but I have ruled this out as well.


What have you been told to do regarding treating any hypos? How do you feel when your sugars are low?
I have fast acting carbohydrates for when I have a hypo including snacks, glucose tablets and glucogel. I have hypo unawareness most of the time so a lot of the times I have recognised that I'm having a hypo it's been when I've randomly checked my blood glucose during the day.

I cannot believe that anyone with any sense would ask you to drive, while having a hypo?
I was told by many medical practitioners, not to drive at all with the prospect of having an episode.
And the DVLA, would also disqualify you under the rules.

 

[AndBreathe]

Hi,

Have you been told to attend hospital if you experience a hypo?
No. Before seeing an Endocrinologist I used to have to go to hospital as I was usually in the 2.4-3.2mmol range and the NHS 111 operator used to get scared. By the time I'd had a sugary drink (advice from 111) and drove to hospital I would be over 4.0mmol so the A and E doctor would tell me to go home.


is there any common trend to what you might have eaten or drunk when you experience these low sugar events?
Caffeine causes me hypos but I've cut caffeine out of my life. Their doesn't seem to be any pattern, I've tried different diets under the supervision of a Dietician but nothing seems to control the hypoglycemic attacks. I also thought exercise was a trigger but I have ruled this out as well.


What have you been told to do regarding treating any hypos? How do you feel when your sugars are low?
I have fast acting carbohydrates for when I have a hypo including snacks, glucose tablets and glucogel. I have hypo unawareness most of the time so a lot of the times I have recognised that I'm having a hypo it's been when I've randomly checked my blood glucose during the day.

What is your current way of eating?

When you measure in the 2s, how do you feel?

What led you to seeking medical assistance and who referred you to your Endo?

 

[DEM1988]

I cannot believe that anyone with any sense would ask you to drive, while having a hypo?
I was told by many medical practitioners, not to drive at all with the prospect of having an episode.
And the DVLA, would also disqualify you under the rules.

Hi,

Sorry for the very late reply, I collapsed at home recently which I thought was related to my blood sugar issues but it turns out I'm suffering from Vestibular Migraines. Thankfully they've put me on some great medication but one of the side effects is feeling hungry which has been murder for my blood glucose issues.

Anyway, to clarify the GP who I spoke to on NHS 111 said to ensure I was above 5 mmol before driving to hospital.

 

[DEM1988]

What is your current way of eating?

When you measure in the 2s, how do you feel?

What led you to seeking medical assistance and who referred you to your Endo?

Hi,

My eating is a bit out of control at the moment due to a new medication. I've thankfully ruled out Insulinoma with the help of my GP. I'm starting to become more convinced that I am not suffering from Reactive Hypoglycaemia. Due to recent events, I'm starting to link my hypoglycaemia to dehydration - I have no idea what this means so I am waiting until I speak with my Endocrinologist. I don't know if dehydration is a symptom of R.H. or something else but 3 recent severe hypos (all 2.7 mmol) I had were triggered by dehydration: two from excessive sweating in a very warm room and one from being really thirsty and not able to get a drink (stuck on a motorway).