Experiencing hypoglycaemia and hyperglycaemia

[george2791]

Hi all,

Wondering if anyone could help me, or experienced similar as the doctors are stumped…. They diagnosed me reactive hypoglycaemic in July after I went due to experience symptoms of low blood sugars and had finger prick readings of 3.5 and below. I self funded a CGM (the doctors currently won’t prescribe it only finger prick) out of interest to monitor myself as they said it would be unusual for a person like me to have this and due to my symptoms. I go through patterns when I’ll have days of going low, the lowest I’ve been is 1.9 no matter what I do or eat I continue to crash, including long continuous hypos over night which cause me to wake up and feel awful and other days I’ll go high and stay high for long periods of time usually up to a few hours the highest I’ve been is 17.8 currently (this is slowly increasing).

They have ruled out insulinoma after an 72 hour fast and have stated they do not feel I am diabetic but not done all the tests yet. I’m loosing weight rapidly and no matter what I do in terms of diet I cannot control my blood sugars. I’ve cut out carbs, fast acting sugar etc all the things they say and it doesn’t make a difference.
There is a history of diabetes in my family so know I am at risk, but unsure on what to do currently or where to go for advice/ answers! If anyone could shed any light or experienced similar please let me know as I’m lost currently as it’s taken over my life due to feeling rubbish all the time. Even if someone could recommend a doctor or specialist to see as I’m in cornwall and wiling to travel as far as I need currently to get the answers I need and understand what is happening to my body.
Thanks in advanced

 

[Melgar]

Hello and welcome to the forum @george2791

We have a few members who have a diagnosis of RH, although they can share their experiences and advise with you no one on the forum is allowed to recommend a named Dr. specialist or hospital. I’ll tag one of our very experienced members for you who is always very helpful.
@Lamont D

 

[Lamont D]

Hi @george2791 welcome to the RH forum.
I have the condition known as Non diabetic Late Reactive Hypoglycaemia.
Mouthful I know, but it does sum up what happens.
I too have had a string of tests with the final test being the 72 (80 really) fasting test.
Did you go hypo during the test?
This is an important detail that will help me, help you.
Have had an extended oral glucose tolerance test?
Did you go hypo, at what time?

If you do have RH, you will have to understand the science behind it all, in time, which we will help you decide which steps you can take to control the condition, as I have since diagnosis over a decade ago.

RH is a condition that has no known cure, there is no magic pill. It is a condition which is triggered by food and drink.
Can I ask if you have had any dietary advice?
Are you on any meds?
Any other conditions?

I know what it's like, it is not easy to get your head around what is going on. The medical books, don't understand it either, and the majority of even so called specialists know much about hypoglycaemic issues. And don't expect GP's to know much, as they do not have the experience, knowledge or training.

Do have a read through some of the threads in the forum.
Ask any questions.

As for an endocrinologist, the one that diagnosed me is in the North of England. That is a journey, but I do know that within the posts, others have been diagnosed down south. One of the top of my head is Cambridge I think.

Best wishes.

 

[george2791]

Hi @george2791 welcome to the RH forum.
I have the condition known as Non diabetic Late Reactive Hypoglycaemia.
Mouthful I know, but it does sum up what happens.
I too have had a string of tests with the final test being the 72 (80 really) fasting test.
Did you go hypo during the test?
This is an important detail that will help me, help you.
Have had an extended oral glucose tolerance test?
Did you go hypo, at what time?

If you do have RH, you will have to understand the science behind it all, in time, which we will help you decide which steps you can take to control the condition, as I have since diagnosis over a decade ago.

RH is a condition that has no known cure, there is no magic pill. It is a condition which is triggered by food and drink.
Can I ask if you have had any dietary advice?
Are you on any meds?
Any other conditions?

I know what it's like, it is not easy to get your head around what is going on. The medical books, don't understand it either, and the majority of even so called specialists know much about hypoglycaemic issues. And don't expect GP's to know much, as they do not have the experience, knowledge or training.

Do have a read through some of the threads in the forum.
Ask any questions.

As for an endocrinologist, the one that diagnosed me is in the North of England. That is a journey, but I do know that within the posts, others have been diagnosed down south. One of the top of my head is Cambridge I think.

Best wishes.

Thank you for this!
I did hypo during the 72 hour test but only down to 2.9 which wasn’t enough for them to diagnose anything else or take bloods as they wanted it below 2.5, my body also managed to bring me back up by its self after an hour. This was about 12 hours into the test and then would continue to happen throughout the 72 hours but never low enough to test or stay there for more than an hour or so.

No one has really given me any dietary advice apart from low carbs/ slow release carbs, which I have tried and there is no difference. I even tried a zero carb diet for a few weeks.
I was 85kg in 2023 and solid muscle, playing football competitively and gig rowing at a competitive level, I am now just scraping 48kg and can barley train let alone play a game/ row.

The only other condition I have is ADHD, which they’ve said wouldn’t affect anything.

I’m so lost at what to do, and just want to get back to where I was last year rather than being concerned I’m going to pass out, feel sick, have a bad belly, along with all the other symptoms I get. The worst is how tired and lethargic I am no matter how much I sleep I feel drained.

 

[Lamont D]

Thank you for this!
I did hypo during the 72 hour test but only down to 2.9 which wasn’t enough for them to diagnose anything else or take bloods as they wanted it below 2.5, my body also managed to bring me back up by its self after an hour. This was about 12 hours into the test and then would continue to happen throughout the 72 hours but never low enough to test or stay there for more than an hour or so.

No one has really given me any dietary advice apart from low carbs/ slow release carbs, which I have tried and there is no difference. I even tried a zero carb diet for a few weeks.
I was 85kg in 2023 and solid muscle, playing football competitively and gig rowing at a competitive level, I am now just scraping 48kg and can barley train let alone play a game/ row.

The only other condition I have is ADHD, which they’ve said wouldn’t affect anything.

I’m so lost at what to do, and just want to get back to where I was last year rather than being concerned I’m going to pass out, feel sick, have a bad belly, along with all the other symptoms I get. The worst is how tired and lethargic I am no matter how much I sleep I feel drained.

I have to be very careful how I put this without breaking forum rules.

So, when I mentioned my fasting test, I was told that I would not go below 3.5 mmols, during the test to be RH.
I didn't go below 4mmols at all.
I only went hypo after food particularly carbs.
I had all the tests including the one for the pancreatic conditions such as insulinoma.

I do believe that you would be better seeking another specialist. As unless it is another type of hypoglycaemia.

The symptoms sound horrible, I had the reverse of losing weight as the excess insulin I was overproducing, went into weight gain.
I do believe that you won't go wrong with a very low/keto diet. There are many symptoms you describe, that could be eased when fat adapted in keto.
And one important aspect of diet that I always stuck to. Is always fresh food. Nowt through a manufacturing environment or machine. There is so many harmful ingredients, additives, industrial sugars that will make someone over time that is like me or possibly I'll suffer with symptoms that described.

maybe @Melgar has other advice, he suffers with similar symptoms. But is not RH.

my best wishes.

 

[KennyA]

Hi george2791

I have no experience of my own to offer. However, you shouldn't hesitate to go directly to A&E if you feel you need to, particularly if your BG has dropped very low.

Best wishes

 

[Melgar]

Thanks for the tag @Lamont D . @george2791 I’ve had some real nasty low sugar events. Similar to your low levels. They are very unpleasant and frightening. My blood sugars would plummet. I would wait for my liver to start dumping to correct the low but my liver would in most instances fail to correct. So I had to intervene. I had tests done on my pancreas, like @Lamont D and yourself for insulinomas, all negative. My GP and DN suggested I increase my carbs, which I did.This alleviated the worst of the lows. Still very frightening. I’m not suggesting this for you, but my lows improved. There are many reasons for low blood sugars. They do need investigating, most definitely especially if blood sugar lowering meds are not involved.

We cannot diagnose on the forum, but might I suggest you push your Drs for an explanation or reason for your lows. There are other conditions besides RH that present as low blood sugars. I would certainly push for answers, even if this means going to A&E .

I recall, years ago, vomiting blood up. Not much, but it was definitely blood. I left it all day. I kept rationalizing why I was vomiting the blood. I finally decided to go to the local hospital in Barnet. The place was rammed with people waiting to be seen. I could have walked out there and then at the thought of waiting hours to be seen. I was seen by the triage nurse. Next thing I knew I was in a bed, hooked up to monitors, drips and drama. The Dr came in and gave me a long lecture telling me that people with my symptoms are the very reason we have A&E departments. I’ve never forgot that.

I would say without hesitation that we have emergency rooms for precisely situations that can turn nasty. Unexplained very low sugar events are definitely a reason to take yourself off to your local A&E.

Please let us know how you are doing. Take care @george2791.
Mel.