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Do I have reactive hypoglycaemia?

C

Cazzy76

Member
Messages
6
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
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 .
 
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.)
 
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.
 
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.
 
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
 
Hi Lamont



Thank you so much again for your wisdom and help here ! Honestly, you are amazingly helpful! - Doctors have been so unhelpful in the past months and I think, yes - it’s about finding out for myself how to deal with this and finding the right fuels that work with my body to feel as better as I can! When I was in the hospital I kept being bombarded with carbohydrates and I would desperately try to explain how ill they were making me. I was then labelled anorexic and mad, which is heartbreaking, as you know this has an impact on how much food affects RH !



There is so much I want to write about this and my experience and I will, unfortunately I am in such a hurry this morning but I wanted you to know how grateful I am for your help and I really hope that I get the tests done, I feel they should happen!?



My GP is so helpful and he is in contact with the endo that I saw in the hospital , unfortunately this endo was convinced I had an eating disorder (my GP knows that I don’t) … Anyway , hopefully he will take it seriously now and order some tests that I need !



After researching myself, and with your help I am sure I do have this but it would be nice to get other things ruled out.



I feel this is a grieving process - letting go of my oatcakes as they are a comfort eating thing, it is going to be tough but if I feel better after cutting them out it’s onwards and upwards, hopefully () ! !



Yes, I need to find what I am intolerant to. I have issues because of how food also affects my MS symptoms so it will be a tough learning journey but I’ve got to try and stay positive here, I love my boiled eggs but I find when I eat them my blood glucose drops and also my weakness is intensified. Protein is going to be difficult - I also love smoked salmon, (Sainsbury’s do one without the added sugar) but again I have such intense weakness and numbness after I eat it

I would be very happy with my protein being salmon and eggs and nuts (I also have the intense weakness and numbness after I eat nuts) - so I need to do a lot of research on foods that work.

I haven’t had dairy for so many years now but I am considering eating lactose free cheese for protein and fat . I have problems with eating fat, have you ever heard of the Overcoming Multiple Sclerosis diet? It is a very low fat diet which excludes dairy and egg yolk because of the fat content (according to the diet saturated fat is not good for MS) …. Trial & error for me here, if I am okay with the lactose free cheese then I am happy to eat that protein and fat.



Bloods yesterday - Arghhh, typically my sensor run out yesterday afternoon but I have a new one arriving today but here’s what I got from yesterday. I do also have a needle tester but with my ataxia it is difficult to use!



11:27 am - 4.1 (no foods & dizziness & blurred vision)

12.30 pm - 4.6

1 05 pm lettuce 4. 4

1 :35 Soooo dizzy & lightheaded 4.8 I feel very hot & blurry vision

2 pm 4.7 dizzy & bad vision

2:40 pm 4.7 dizzy

3 pm 4 6 dizzy and light headed

Eggs 3.45pm 4.2

4pm 3.8 ! Vision & dizzy

4 15 pm 4.6 … this is when my sensor run out I stupidly had some oatcakes and it went up to about 5.8 …. I will post today’s blood results when my new sensor arrives!





Sorry , I would love to explain more, but I really have to dash now, thank you again so very much thank you thank you thank you!!! You have been the most help I have had for such a long time, you deserve a medal thank you!



And I am so sorry to hear about your wife, that must be so difficult she is lucky to have you as you are so knowledgeable and so helpful!!!!

 
Hi again. Please stop with the gratitude. It's okay just saying thanks. Ha!

I did forget a really important part of finding your intolerance levels, yes, okay I'm human!
It is a food diary..
Which means recording your meals and your BG levels pre meal and two hours after.
What you ate, and as many details as possible.

the BG levels you have detailed. Are in normal range. However , you may get symptoms at those levels.
and I wouldn't rule out small portions , of those foods, it might still be possible to enjoy them.
No, I have not heard of that low fat diet, and before going very low carb, I tried a lot of different ones.
my objections to any thing low fat, is what is replacing the fat? In most cases it is a form of sugar, whether, a form of glucose or industrial sweetners. The use of these sugars is for the taste. And of course, sugar is not at all good for you.
I eat saturated fats off the meat I eat. I have to. To get the balance right for me.
I only eat fresh food. Nothing produced in a machine or through a production line.
I personally but all my meat from a butcher and salad and vegetables I can eat from a greengrocer. And the fish.
and because I can fast, I use intermittent fasting and that helps with food choices.
and to finish, my portion size is moderate, I wouldn't eat much of it was put in front of me.
Best wishes. Let us know how you get on.
 
Hi Lamont

Well as long as you know how thankful I am !!!

I have been keeping a rough and very unorganised record of my blood glucose and foods and symptoms etc.

It’s on my list of things to do -
I want to make a spreadsheet of my foods, symptoms and blood numbers, so I can show an endocrinologist ( if I do ever see one again (?) ) - this might help them help - to be honest I have received more help on here than anywhere so far !


Yes, I know exactly what you mean about the replacements for such things as fat . I am gluten-free and the replacement of gluten in GF products are sugars basically & unnatural processed stuff.

I am wary of fat content because of how it can affect my MS symptoms - I realise fat is essential so I need to find what works for me.
Wow what a learning curve.
I was wondering if you have any blood pressure issues with RH?
I have low blood pressure and am constantly dizzy ‍! (Both before and after foods) !

Your diet sounds fantastic and so natural ! You are probably the healthiest person in a supermarket, if you do ever go in a supermarket, but it’s wonderful supporting local greengrocers and butchers!

I think anything with 20 syllables in an ingredient list is a big red flag!!!!!


Thanks Lamont !

 
Hi again,
When I was diagnosed, I didn't have a clue. My endocrinologist didn't really have much of an idea how to treat the condition.
Most of the medical profession deems not eating carbs as a big issue.
The reason is that glucose is necessary for good brain function.
So a reasonable amount of carbs is necessary for energy levels and brain function.
It has been suggested to me many times that I need a steady amount of carbs throughout the day.
This teaching to doctors and other personnel is how it is in the medical books.

But I found out that this was the reason behind my having the list of symptoms, which is long at the time.
So where do I find any information of this condition?
So I did my research, my own testing and learned a lot on this forum.
How much glucose do you need, and why don't those on prolonged fast, suffer brain damage?
The main light bulb moment of what convinced me that carbs were not healthy was during and after a hospital stay because of a 72 hours fasting test. Four days in hospital. No food at all. It was a diagnostic test.
As the fast went on, my brain fog lifted, my energy levels increased, and it started the much needed weight loss.
By the end of the test my experience was unbelievable. It did seem first thought, that I really didn't need food.
But I did, so what could I eat, if not?
I learned a lot from the same things that I have said to you.
When the whole world is completely different from you. Because of a rare condition, it does tend to make you need to understand what your body is doing.
I spent months experimenting, recording, still do, but not as detailed. And kept on researching about my condition and similar metabolic conditions that cause hypoglycaemia.
I read and watched videos some interesting, some good, some nonsense.
And eventually, I managed to persuade my endocrinologist, what I was doing was working, and I had control and stopped the hypos. I was healthy again. All my results were very good. Not to boast, but my endocrinologist, in one of my last appointments, had me speak to some medical students, he was mentoring.
A question if I may. And this is about intolerance. Why, when diagnosed at a young age for lactose intolerance, my doctors told me to avoid? So when I was diagnosed with RH, which is at the basic level, carb intolerance, did every doctor etc, tell my to eat carbs?

Go back to top of the page. Ha!
So an example of research into gluten, by the way I'm not gluten intolerant, but I have a wheat intolerance, which for some reason is around 10% or more of the population. So what would replace the gluten?
Potatoes (starch) is really the worst for me, go figure, but understandable.
Yep, potato starch replacing gluten in most gluten free products.
And, I know I won't eat production foods. But some so called healthy foods, are definitely not.
But it is so individual.
That is why a diagnosis, may not be the be all and end of the journey, in some ways it is the beginning.

No BP issues since before diagnosis.
The list of symptoms, in the time I have been involved in the sub forum, we all have symptoms, but different ones. Some we are not aware of.

Your MS is a major factor, and will impact, how you control the hypos, this is why the results are important.information and understanding of how your body responds and reacts to what you put in it.

Let me know how you are getting on.
My best wishes.
 
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