Do I have reactive hypoglycaemia?

[Cazzy76]

Hi everybody,

I have been lurking on this forum for a few months now whilst waiting and waiting for appointments to come about !

I am sure I have reactive hypoglycaemia, I had some seizures over Christmas and I just haven’t felt right since having the seizures.

After a couple of weeks stint in hospital, they very vaguely diagnosed reactive hypoglycaemia but this was without the food tolerance test (which I didn’t have in the hospital, even though they told me that I needed one, and I had to wait a couple of months for it to actually happen! I don’t want to go into detail about it too much but honestly the doctors were absolutely useless!) ! Anyhow I have now had the test and I am hoping someone might be able to tell me if I either do or I don’t have this. I have always had reactions to food. I have a severe case of Multiple Sclerosis so everything is always put down to MS and there aren’t many doctors that ever see past this - anyway I will write down my numbers and maybe you guys can decipher this and by the way I think you have a huge wealth of knowledge and understanding and kindness on this forum. I thank you so much in advance, typing is difficult with me because I have severe ataxia with my MS so I hope this all makes sense!

Also I should say how ill I am when I eat food and how I have been constantly dizzy since I had the seizures and nauseous! I am extremely weak after eating and dizzy and lightheaded. I can literally not lift my legs after eating = before I eat I am getting around my house okay, holding onto things for balance. During the food test and all the time I eat I get extremely shaky and I burn up. It would take me a long time to list all my symptoms but I have each of the symptoms with reactive hypoglycaemia. I had the food test in the middle of May but I still haven’t heard anything yet. I really just don’t know what to do!

After reading this forum I have cut my carbohydrates down hugely, otherwise I just don’t know what to do!

I don’t have the exact numbers but I will tell you at the beginning of the test it was around 4.7 I was given the drink and I think the highest it went up to was 6.8 and then within two hours it went down to 2.4 and then slowly started rising again, this happens every day and along with all my symptoms it does seem to me to be a possible RH ?

During the test my insulin level was 58 and serum c 1382 !



Thank you so so much everybody !

 

[Jaylee]

Hi everybody,

I have been lurking on this forum for a few months now whilst waiting and waiting for appointments to come about !

I am sure I have reactive hypoglycaemia, I had some seizures over Christmas and I just haven’t felt right since having the seizures.

After a couple of weeks stint in hospital, they very vaguely diagnosed reactive hypoglycaemia but this was without the food tolerance test (which I didn’t have in the hospital, even though they told me that I needed one, and I had to wait a couple of months for it to actually happen! I don’t want to go into detail about it too much but honestly the doctors were absolutely useless!) ! Anyhow I have now had the test and I am hoping someone might be able to tell me if I either do or I don’t have this. I have always had reactions to food. I have a severe case of Multiple Sclerosis so everything is always put down to MS and there aren’t many doctors that ever see past this - anyway I will write down my numbers and maybe you guys can decipher this and by the way I think you have a huge wealth of knowledge and understanding and kindness on this forum. I thank you so much in advance, typing is difficult with me because I have severe ataxia with my MS so I hope this all makes sense!

Also I should say how ill I am when I eat food and how I have been constantly dizzy since I had the seizures and nauseous! I am extremely weak after eating and dizzy and lightheaded. I can literally not lift my legs after eating = before I eat I am getting around my house okay, holding onto things for balance. During the food test and all the time I eat I get extremely shaky and I burn up. It would take me a long time to list all my symptoms but I have each of the symptoms with reactive hypoglycaemia. I had the food test in the middle of May but I still haven’t heard anything yet. I really just don’t know what to do!

After reading this forum I have cut my carbohydrates down hugely, otherwise I just don’t know what to do!

I don’t have the exact numbers but I will tell you at the beginning of the test it was around 4.7 I was given the drink and I think the highest it went up to was 6.8 and then within two hours it went down to 2.4 and then slowly started rising again, this happens every day and along with all my symptoms it does seem to me to be a possible RH ?

During the test my insulin level was 58 and serum c 1382 !



Thank you so so much everybody !

Hi,

Welcome to the forum.

I’m T1. We also can’t diagnose either..
But a hypo experience at 2.4mmol for me would be pretty intense which could also involve cognitive dysfunction? (If I let it go from the early symptoms..)
My eyes start to be affected at 3.6?

The only thing I can suggest if you haven’t already is get a BG meter or sensor to help you log these numbers when symptoms arrise..

Hopefully our RH community can assist.
I’ll tag in @Lamont D .

 

[Cazzy76]

Hi and thank you Jaylee !

yes my eyes are a big problem I have such blurry vision after I have eaten, ha - and my memory is atrocious so I forgot to mention my whole vision issue !
I do have a blood glucose sensor I have had one for a few months now, generally when I wake up my bloods stay at four point something and I can do a few things and feel better before I eat and then when I do eat - all the symptoms begin ……


thank you!

 

[Jaylee]

Hi and thank you Jaylee !

yes my eyes are a big problem I have such blurry vision after I have eaten, ha - and my memory is atrocious so I forgot to mention my whole vision issue !
I do have a blood glucose sensor I have had one for a few months now, generally when I wake up my bloods stay at four point something and I can do a few things and feel better before I eat and then when I do eat - all the symptoms begin ……


thank you!

For me it’s hazy or sometimes like bright sunlight dancing on rippling water. I can go slightly colourblind too.
But a hypo for me in short is best described in short as an over estimation of my insulin dose to either existing BG levels or anything eaten.. (there can be other factors I need not go into..)

If anything.
I would suggest if you’re using a sensor utilising the logging function on the app with what was eaten?
& a screen shot of the event on the graph, which could help an HCP build a better picture with what could be happening.
On the Libre app there is a daily patterns section which builds a profile of upto 90 days. Which might help too?

From what I know, a regular pancreas & metabolic function with BGs never stays flat.
But neither should it stray far out of normal range. (To the best of my knowledge.)

 

[Cazzy76]

Thanks again Jaylee !

I have been making notes of my diet and blood glucose numbers since the beginning of the year, after I had the seizures. I did strongly suspect it might have something to do with my blood sugars, as when the paramedics, who came out, took my blood glucose reading it was much higher than I thought it would be because I hadn’t actually eaten anything that day. (Because foods deplete me so I try to get everything done that needs doing before I eat.)

I am going to start entering my foods into the libre app from now on, thank you!

How you describe your vision is a good description of how I see things, but I haven’t had the colour blindness (that I know of) !

Today for example - when I woke up my blood was around 4.5 and then when I am active and after I have done all the morning housework rituals () my bloods go up to 5.5, then after I relax go down to around 4.5 again. So this morning I had some lettuce and instantly my whole body suffers weakness but my blood sugar levels stay around 4.5, today I then had some white fish and my bloods have gone down to 4.1 and my face is very tingly and I feel so much heavier and weaker.

I will soon have some eggs, this usually lowers my blood down to around 3.4 and it is around then that I start feeling too weak and heavy to do anything ! After my sensor turns red I will eventually have some oat cakes, which usually takes my bloods up to around 7.0 and then they go down to between four and five until I eat later which is generally just fish and vegetables. by now I am feeling awful! This is a typical day for me….

thanks again!

 

[Jaylee]

Thanks again Jaylee !

I have been making notes of my diet and blood glucose numbers since the beginning of the year, after I had the seizures. I did strongly suspect it might have something to do with my blood sugars, as when the paramedics, who came out, took my blood glucose reading it was much higher than I thought it would be because I hadn’t actually eaten anything that day. (Because foods deplete me so I try to get everything done that needs doing before I eat.)

I am going to start entering my foods into the libre app from now on, thank you!

How you describe your vision is a good description of how I see things, but I haven’t had the colour blindness (that I know of) !

Today for example - when I woke up my blood was around 4.5 and then when I am active and after I have done all the morning housework rituals () my bloods go up to 5.5, then after I relax go down to around 4.5 again. So this morning I had some lettuce and instantly my whole body suffers weakness but my blood sugar levels stay around 4.5, today I then had some white fish and my bloods have gone down to 4.1 and my face is very tingly and I feel so much heavier and weaker.

I will soon have some eggs, this usually lowers my blood down to around 3.4 and it is around then that I start feeling too weak and heavy to do anything ! After my sensor turns red I will eventually have some oat cakes, which usually takes my bloods up to around 7.0 and then they go down to between four and five until I eat later which is generally just fish and vegetables. by now I am feeling awful! This is a typical day for me….

thanks again!

Hopefully, you can get better feedback from RHers..

All I know is the eyes are linked closely to the brain.
When a low happens the brain is the first to waive the “white flag,” it takes priority with the fuel supply..

Rational thought & eyesight normalises first after treatment followed by a meter BG test confirming a recovery.
A Libre interprets BG levels by testing interstitial fluid under the skin..
there is normally a delay before interstitial fluid levels recover. From what I understand Brain first, interstitial fluid last in line..

Hope this helps.

 

[Lamont D]

Thanks again Jaylee !

I have been making notes of my diet and blood glucose numbers since the beginning of the year, after I had the seizures. I did strongly suspect it might have something to do with my blood sugars, as when the paramedics, who came out, took my blood glucose reading it was much higher than I thought it would be because I hadn’t actually eaten anything that day. (Because foods deplete me so I try to get everything done that needs doing before I eat.)

I am going to start entering my foods into the libre app from now on, thank you!

How you describe your vision is a good description of how I see things, but I haven’t had the colour blindness (that I know of) !

Today for example - when I woke up my blood was around 4.5 and then when I am active and after I have done all the morning housework rituals () my bloods go up to 5.5, then after I relax go down to around 4.5 again. So this morning I had some lettuce and instantly my whole body suffers weakness but my blood sugar levels stay around 4.5, today I then had some white fish and my bloods have gone down to 4.1 and my face is very tingly and I feel so much heavier and weaker.

I will soon have some eggs, this usually lowers my blood down to around 3.4 and it is around then that I start feeling too weak and heavy to do anything ! After my sensor turns red I will eventually have some oat cakes, which usually takes my bloods up to around 7.0 and then they go down to between four and five until I eat later which is generally just fish and vegetables. by now I am feeling awful! This is a typical day for me….

thanks again!

I'm gonna apologise because I couldn't get on line before.
I will also start by saying I have no idea, it you do have hypoglycaemia, in any of its forms because there isn't just one.
From reading your posts the information you have given, is you are having hypoglycaemia,but it is tests that will only find the underlying cause and your MS, will skew most of your results you are getting.
Hypoglycaemia is a good intolerance condition, which it seems you do have, could it be wheat, oats., starch, dairy or something else. Having a CGM is great, but could you help me understand more with a sample of what your BG levels are pre meal. One hour, two hours, three hours.
If it's not hypoglycaemia, it might be a organ problem, such as liver, pancreas or kidneys. There are conditions such as insulinoma or something other than that creates over production of insulin.
That is why, a low carb diet can be so helpful, it does lower insulin production.
I know it doesn't help much. But it doesn't help without knowing the results of the series of tests that can diagnose what is going on.
Was it a mixed meal test you had?
Have you had a fasting, oral glucose tolerance test?
Have you had a blood panel tests to see the reason why you have double the normal levels of insulin?
Because, being in the fifties, is high.
There could be many reasons for this.

Do let us know, when you get the results. I'm always fascinated by the diversity of hypoglycaemia in non diabetic patients.

Best wishes.

 

[Cazzy76]

Hi Lamont !



Thank you so much for your reply and please, don’t apologise! Honestly, I am so grateful !!!!

I had a mixed meal test - a drink ! And I don’t think I’ve had any of the other tests that you have mentioned ! What are the tests I should ask for ? Fasting blood tests usually come back between 3.7 - 5.0, depending on whether I have eaten oat cakes the night before ( if I eat oat cakes, they seem to steady my blood through the night) Anyway doctors didn’t seem worried about the results. It was after at least eight hours fasting!

While I was in hospital I had a body CT scan, which didn’t show anything remarkable, apparently.

The seizures did literally hit me like a ton of bricks - literally!!! Before I had the seizures I was living very independently, going out every day to do my shopping, swimming 500 m twice a week - which made me feel amazing! Also dancing a lot and yoga, I was always doing exercise for maintenance, and I still try to - but the exercise is just draining me now now and it also sends my blood sugars either high or low and I get very dizzy.

I was getting gradually weaker to be honest, a few months leading up to the seizures, but doctors put that down to MS (my actual neurologist is positive the seizures and decline Is not MS related - I had more MRIs after the seizures! They were focal seizures.)

All of my hormone blood results are off the charts - hormonal blood test results being off are always put down to menopause, which is frustrating as I have many deficiency symptoms - like the severe weakness and fatigue!

I have had MS for over 20 years and I have not felt the weakness and fatigue like I do now!

I have always felt worse after eating - a numbness and weakness washes over me after eating, but no doctors were ever interested in this. I have many MS friends affected differently by MS, but not any of them are affected by food like me!

Now my son (grown up son) is doing all the shopping, all the cooking (I was doing my own cooking before) , most things around the house, because I am just so tired and weak!

I think GPs have suspected adrenal problems but my cortisol levels are normal, I was told I would have a ACTH blood test in hospital but that didn’t happen!

Liver and kidney blood tests are all normal.

I have lost a huge amount of weight. I was a healthy 8 1/2 - 9 stone before the seizures, now I am 7.4 - it is awful !



My MMT bloods -



8:25 am - 5.6 - This is higher than usual, I think due to the activity getting to the hospital - Drink -



8:40 am - 5.1

9:10 am - 6.3

9:25 am - 6.8

9:40 am - 7.2

9:55 am - 5.8

10:25 am - 4.2

10:55 am - 2.4

11:25 am - 3.2

11:55 am - 3.7

12:25 pm - 4.6

12:55 pm - 4.3

1:25 pm - 3.8

1:55 pm - 4.0



Through the test I was extremely dizzy and lightheaded and blurry vision and shaking and burning up… I must have got up to pee about 20 times!





And so far today - I woke up and bloods 4.7. When I sit down, it goes down to 4.0. I got up and danced ( ha - I say dancing but it is more like shuffling to music! ) it went up to 5.5 I feel absolutely exhausted after, before the seizures I would never feel this exhaustion, but I knew when I needed to stop, if you know what I mean….



I won’t eat until around midday, because as soon as I eat I feel too ill to do anything but I will update all my foods and blood numbers today!



Oh and I haven’t eaten gluten or dairy since I was diagnosed! The only milk I have had is what is in the mixed test drink !



POTS has been suspected by a doctor, I just don’t have a +30 heart rate every time I stand up, sometimes I do but not all the time and my blood pressure generally drops when I stand up but I think this will be put down to MS… blood pressure is generally low ….



I feel like my whole body is failing me….. maybe it is - I just feel glucose and foods are such a big issue and I need answers from our failing NHS ……



Thank you thank you thank you !!!

 

[Lamont D]

Hi Lamont !



Thank you so much for your reply and please, don’t apologise! Honestly, I am so grateful !!!!

I had a mixed meal test - a drink ! And I don’t think I’ve had any of the other tests that you have mentioned ! What are the tests I should ask for ? Fasting blood tests usually come back between 3.7 - 5.0, depending on whether I have eaten oat cakes the night before ( if I eat oat cakes, they seem to steady my blood through the night) Anyway doctors didn’t seem worried about the results. It was after at least eight hours fasting!

While I was in hospital I had a body CT scan, which didn’t show anything remarkable, apparently.

The seizures did literally hit me like a ton of bricks - literally!!! Before I had the seizures I was living very independently, going out every day to do my shopping, swimming 500 m twice a week - which made me feel amazing! Also dancing a lot and yoga, I was always doing exercise for maintenance, and I still try to - but the exercise is just draining me now now and it also sends my blood sugars either high or low and I get very dizzy.

I was getting gradually weaker to be honest, a few months leading up to the seizures, but doctors put that down to MS (my actual neurologist is positive the seizures and decline Is not MS related - I had more MRIs after the seizures! They were focal seizures.)

All of my hormone blood results are off the charts - hormonal blood test results being off are always put down to menopause, which is frustrating as I have many deficiency symptoms - like the severe weakness and fatigue!

I have had MS for over 20 years and I have not felt the weakness and fatigue like I do now!

I have always felt worse after eating - a numbness and weakness washes over me after eating, but no doctors were ever interested in this. I have many MS friends affected differently by MS, but not any of them are affected by food like me!

Now my son (grown up son) is doing all the shopping, all the cooking (I was doing my own cooking before) , most things around the house, because I am just so tired and weak!

I think GPs have suspected adrenal problems but my cortisol levels are normal, I was told I would have a ACTH blood test in hospital but that didn’t happen!

Liver and kidney blood tests are all normal.

I have lost a huge amount of weight. I was a healthy 8 1/2 - 9 stone before the seizures, now I am 7.4 - it is awful !



My MMT bloods -



8:25 am - 5.6 - This is higher than usual, I think due to the activity getting to the hospital - Drink -



8:40 am - 5.1

9:10 am - 6.3

9:25 am - 6.8

9:40 am - 7.2

9:55 am - 5.8

10:25 am - 4.2

10:55 am - 2.4

11:25 am - 3.2

11:55 am - 3.7

12:25 pm - 4.6

12:55 pm - 4.3

1:25 pm - 3.8

1:55 pm - 4.0



Through the test I was extremely dizzy and lightheaded and blurry vision and shaking and burning up… I must have got up to pee about 20 times!





And so far today - I woke up and bloods 4.7. When I sit down, it goes down to 4.0. I got up and danced ( ha - I say dancing but it is more like shuffling to music! ) it went up to 5.5 I feel absolutely exhausted after, before the seizures I would never feel this exhaustion, but I knew when I needed to stop, if you know what I mean….



I won’t eat until around midday, because as soon as I eat I feel too ill to do anything but I will update all my foods and blood numbers today!



Oh and I haven’t eaten gluten or dairy since I was diagnosed! The only milk I have had is what is in the mixed test drink !



POTS has been suspected by a doctor, I just don’t have a +30 heart rate every time I stand up, sometimes I do but not all the time and my blood pressure generally drops when I stand up but I think this will be put down to MS… blood pressure is generally low ….



I feel like my whole body is failing me….. maybe it is - I just feel glucose and foods are such a big issue and I need answers from our failing NHS ……



Thank you thank you thank you !!!

Hi again,
This is the list of tests I had, after my first full blood panel tests
A mixed meal test, but without the milk.
An extended oral glucose tolerance test (5 hours) I went hypo after three hours and forty minutes.
Along with this test, I had a cannula fitted. Bloods were taken regularly as was blood glucose levels. Bloods were sent for anylisis. C-peptide, GAD and insulin tests.
I had another eOGTT, to confirm the results and more tests similar. Just under four hours this time to go hypo.
My endocrinologist was fairly certain by then, but as always, he did insist on a 72 hours fasting test. Which was actually, 80 hours. This was to ascertain whether without food, I would go hypo, and I didn't. Which means that it couldn't be anything but reactive hypoglycaemia.
Now if I had gone hypo, the tests and scans would have been directed to the pancreas. Or to the other metabolic conditions.
The mixed meal test does correspond with similar symptoms I had , the numbers below 3.5 mmols are regarded by my endocrinologist as real hypoglycaemia. And the test should have been stopped and the low blood levels should have been treated. And I'm not surprised you felt awful.
If it is food that you're intolerant to, you may have to find out which ones.
With my RH, it is definitely carbs and sugars. The worst is starch (spuds), next is oats and wheat, then others and most sugars. So going very low carb was essential to control my BG levels. Because control is the best way to handle the symptoms, which is the way forward.
If you have RH. No carbs, no high blood glucose levels, no overshoot of insulin, no hypoglycaemia.
When you had the mixed meal test, the carbs and sugars, puts your BG levels high very rapidly, your brain, pancreas reacts by producing more insulin, and it is too much. Similarly to what is common!y termed as a sugar crash. With RH, the overproduction of insulin is called an overshoot. This is why hypoglycaemia episodes happen. The liver should respond with a liver dump (glucogenisis). However. It is not enough to stop the insulin flooding the blood.
Exercise is so individual, even with other metabolic conditions, some T2s can and some can't for many reasons the constant energy demands tend to act on some quicker than other. For RH, the need for more glucose, as you do exercise especially, the more demanding exercise. Whereas, more sedate exercise such as walking and swimming is so good for control. To avoid the liver dumps as much as possible.

A bit of a nightmare for you, is getting the right tests, as most of them are to dismiss other conditions.
I have always had good outcomes mainly, however some of the people have not been trained in the rarest conditions and don't recognise the symptoms and results. I have had them, lots of GP's that didn't have a clue. But once I got an appointment with my endocrinologist, everything was brilliant. During covid, I had a breakdown and the bus was brilliant. My wife is disabled and has Alzheimer's.
Her medical care has been very good. And the appointments are mainly at home. We have a .mental health specialist coming Monday.
I found that being a pain to the surgery, can be so helpful.
I hope you can get the tests you need.
Keep us updated.
Best wishes