Reactive Hypoglycemia Help Needed

[paulshaw56]

Hello Folks,

Hope you are all okay.

I have been diagnosed with having a subtle blood sugar disorder back in 2013, i have cut out alot of sugar i used to have. My blood sugar has never been documented to go low but the doctor confirmed it was reactive hypoglycemia symptoms which were not linked to a specific disease. I have had many blood tests to name a few i have had the following checked thyroid, hormones, glucose tolerance tests, cortisol, hemoglobin A1c, i have also had MRI scans of the brain and heart nothing has been found.

However the symptoms seem to be getting worse, despite being on a sensible diet. I have been recommended if i am struggling to take acarbose by my endocrinology doctor, which is for type 2 diabetics, however i am worried about the side effects and i am not sure if this would help the condition.

I please wondered if anyone knew any vitamins / minerals i could add to my diet that might help strengthen my body, or any herbs that could prevent the low blood sugar attacks i am having? Currently i am having 2 - 3 low blood sugar attacks a day which is very upsetting and not very nice. Further does anyone please know any good snacks to have when walking around, that might be high protein and low sugar? I have tried eating a small bag of almonds when i felt a low blood sugar attack coming on, but it seemed to make my blood sugar fluctuations worse.

Thank you so much for reading my concerns and any help would be appreciated. I really am struggling and it certainly is not an enjoyable life at the moment especially with these attacks 2 - 3 times a day. It really is hard trying to manage this condition in a better way, as there is no specific reason why i am having these low blood sugar attacks. I may have to consider trying the acarbose if i cannot seem to get control of my condition.

Many thanks,

Paul

 

[azure]

Hi @paulshaw56

How low does your blood sugar go?

 

[paulshaw56]

Hi Azure,

Thank you for getting back to me. I have never had my blood sugar documented to go low when having a blood sugar attack. My condition has been diagnosed as idiopathic reactive hypoglycemia, i have low blood sugar symptoms but at the time of the attack i do not have low blood sugar. I used to eat alot of sugar and had quite a bit of relief by limiting this and sticking to a better diet, however unfortunately i am still suffering and trying to get some better control over this condition.

 

[Bluetit1802]

@paulshaw56

Have you got your own blood glucose meter? If you have Reactive Hypoglycaemia you really need one so you can link your low BS attacks to your food (what you last ate).

There is a sub forum on here for people with RH and you should find some of the threads very useful.
http://www.diabetes.co.uk/forum/category/reactive-hypoglycemia.70/

Meanwhile I will tag @Lamont D and @Brunneria who may be able to help.

 

[azure]

Hi Azure,

Thank you for getting back to me. I have never had my blood sugar documented to go low when having a blood sugar attack. My condition has been diagnosed as idiopathic reactive hypoglycemia, i have low blood sugar symptoms but at the time of the attack i do not have low blood sugar. I used to eat alot of sugar and had quite a bit of relief by limiting this and sticking to a better diet, however unfortunately i am still suffering and trying to get some better control over this condition.

Ok, that was the bit that confused me. If you haven't had a low blood sugar, what was the reason for the hypoglycaemia diagnosis? Hypoglycaemia is, as I'm sure you know, low blood sugar.

Could it be that your blood sugar changes very quickly, giving you the feeling of being low but not actually being low?

Could you give us an idea of a day's food for you and when the attacks happen?

Tagging @Lamont D for you as he has RH

 

[paulshaw56]

Many thanks for all your posts and for tagging people who might be able to help this is appreciated.

I have tried monitoring my blood sugar Bluetit1802 but at the time of symptoms i do not have low blood sugar.

Azure my endocrinologist described it as potentially dumping syndrome or symptoms similar to reactive hypoglycemia. There is clearly a blood sugar disorder but it clearly is rare, as no cause has been documented. As my symptoms occur within 3 - 4 hours of eating, it is linked to reactive hypoglycemia. I did get alot of relief when switching my diet, as originally eating a high sugar diet i had around 6 low blood sugar attacks during a day.

You are correct it could be that after eating something high in sugar my blood sugar changes dramatically. So it is a case of trying to stabilise the blood sugar for me to stop these low blood sugar like attacks.

The days food i have listed below for you to review and when the attacks occur. If anyone knows any vitamins or minerals i could add to my diet or herbs that could help this condition i would also be grateful. If anyone knows any snacks that are good for helping low blood sugar attacks i would be grateful.

I know acarbose the medication prescribed stops the digestion of sugar and slows down the absorption, so there is not a rapid increase in blood sugars. However the side effects put me off taking this, i am trying to manage this condition more naturally to begin with.

Sample meal plan for a day:

8.30am - Special K cereal with full fat Milk
Alternative - Peanut Butter and Marmite on granary bread

12.30pm - Snack of high protein flapjack

1.30pm - Ham sandwich on granary bread, with salad, with a tub of fruit or lenthil soup

4.30pm - Snack of dried fruit and nuts

6.00pm - Chicken with roasted potatoes, mixed vegetables and buttered granary bread

Low blood sugar attacks:

10.30am can feel shaky, irritable, weak and anxious
5.00pm have symptoms as described above
9.00pm have symptoms as described above

 

[Brunneria]

Hi Paul, and welcome to the forum.

I would strongly recommend that you get yourself a meter, and start testing your blood glucose levels.

Ideally, you need to map what they are doing before and after food, and especially when you get these feelings.

There seem to be three (poss more!) different circumstances in which people get the feeling of hypos. The first is when their blood glucose goes low enough to be classed as a hypo. Are you in the UK? If so, that would be when your blood glucose drops below 4mmol/l.

The second is when we have been running with high blood glucose for a while, and we start getting our blood glucose down to normal levels. When that happens we often get hypo-like feelings, because our body is uncomfortable with the change after a long time of raised levels. These are not technically hypos, but they sure feel awful!

The third is when our blood glucose rises and then drops very fast. I think this is what you may be experiencing. The feeling is horrible, and it may, or may not end up with a blood glucose level lower than 4mmol/l.

The reason that I asked if you are in the UK is because I have seen the term 'reactive hypo' used on some American sites to describe this third type of experience, even if the blood glucose reading doesn't go low enough to be classed an actual hypo.

This is why I think it is very important that you get yourself a meter and start testing your blood glucose, and map out what your diet choices are doing to you. I know you said that you are on a sensible diet, but there are a lot of different interpretations of what 'sensible' means.

Can I ask what tests your doc ran in order to diagnose you with RH?
And what dietary advice you were given? It varies a lot from doc to doc.

Edited to add: Just seen your latest response Paul (we posted simultaneously) and seen that you are testing, and what you are eating. Thanks for that.

 

[Brunneria]

@paulshaw56
At first glance, and as someone who has experienced RH for most of their life, I would say that amount of carb in the form of bread, breakfast cereal and potato would have me on the floor! I would definitely be experiencing the same symptoms as you with that amount of carbohydrate in my daily intake.

 

[Bluetit1802]

Perhaps you don't realise that all carbohydrate converts to glucose (sugar) once inside the system. This is fact. It isn't just sugar that needs to be eliminated, it is the amount of carbs that we eat. The worst ones are bread (of any type), potatoes, rice, pasta, breakfast cereals (of any type) and anything made with flour such as sauces, soups, gravy, pastry, batter and so forth. Fruit is also a culprit, especially dried fruit. Fresh or frozen berries are the best. Anything else can cause problems. Eating too much of any of these things will make your problem worse. It looks like it is going to be a case of changing your diet completely.

Perhaps use your meter better. Test immediately before you eat, then again half an hour later and every half an hour after that. If @Brunneria is correct, and I believe she is, you should see a massive spike in levels after eating all those carbs followed by a fast drop. Try this, record all those levels, and perhaps report back?

 

[Lamont D]

I have the condition RH.
Until you have the tests to confirm diagnosis, the idiopathic part will always be a guessing game.
I'm not surprised at your constant lows because of the amount of carbs in your diet.
I stay away from any forms of food that creates the glucose dumping that your doctor described.
What is happening is you eat, your blood glucose levels rise very quickly.
Your insulin response is too much for the amount of glucose in your blood.
Then your blood glucose levels drop slowly but surely to near normal levels and if you don't eat then you will hypo.
Because of the amount of carbs, your dumping will happen again and the viscous circle continues, hence, the amount of episodes you are experiencing.

If you don't create the insulin, in other words, control your carbs and sugars, the amount of glucose imbalance will recede.

I have had a similar experience to you.
I don't have the problems now.
Diet is key to having good control.

Keep asking, because I know how awful this condition can be.
Did you have a n extended OGTT (glucose tolerance test)?

Best wishes.

 

[paulshaw56]

Thank you so much for all your responses, they are all very helpful. When dealing with this condition it really weakens you and to have all this support from you wonderful people is helpful. I just felt lost and the doctors only try and provide you with prescription drugs, the facts from you all are very appreciated and i will save all your comments as i try to get my life back on track.

Can i please ask does anyone have a good sample meal plan for breakfast, lunch and tea, with appropriate snacks. Is there a particular low carbohydrate cereal? Is there anything particular good for lunch, i really do not know where to start on building a diet that will stabilise my blood glucose further. I do not have that much income, as the condition unfortunately has left me on sickness pay from work until i can get this under control. I cannot work in the way i am, my blood sugars are sadly so unstable.

Brunneria i am from the UK, i have had lots of blood tests, Thyroid, Electrolytes, A1C, Extended Glucose Tolerance Test and lots more to evaluate the adrenal glands, pancreas, insulin function from these tests everything came back normal. Although i was pleased, sadly i still had these awful symptoms. The dietary advice is to go onto more complex carbohydrate meals, for instance the reason i have Special K cereal is it has lots of vital vitamins and minerals, it should release energy more slowly. However i understand that many have stated that i am still ingesting too many carbohydrates.

Bluetit1802 i will definitely do a small test and try get back to this forum with the result. I will test my blood glucose before i eat, then every 30 minutes after eating and see if there is any patterns.

Lamont D you are right, your post makes sense this is most likely why my symptoms are worsening as my diet still is not right and this is weakening my insulin control further. Do you kindly have any recommendations for vitamins or herbs that i can try with my diet or any you might have had experience with? I do feel as my symptoms are quite severe i would have trouble controlling these symptoms with diet alone. Do you think if i cannot get this under control try using the acarbose medication?

Once again thank you for all your support, it has been wonderful and much better than the advice from doctors, which was not very helpful.

 

[Lamont D]

Thank you so much for all your responses, they are all very helpful. When dealing with this condition it really weakens you and to have all this support from you wonderful people is helpful. I just felt lost and the doctors only try and provide you with prescription drugs, the facts from you all are very appreciated and i will save all your comments as i try to get my life back on track.

Can i please ask does anyone have a good sample meal plan for breakfast, lunch and tea, with appropriate snacks. Is there a particular low carbohydrate cereal? Is there anything particular good for lunch, i really do not know where to start on building a diet that will stabilise my blood glucose further. I do not have that much income, as the condition unfortunately has left me on sickness pay from work until i can get this under control. I cannot work in the way i am, my blood sugars are sadly so unstable.

Brunneria i am from the UK, i have had lots of blood tests, Thyroid, Electrolytes, A1C, Extended Glucose Tolerance Test and lots more to evaluate the adrenal glands, pancreas, insulin function from these tests everything came back normal. Although i was pleased, sadly i still had these awful symptoms. The dietary advice is to go onto more complex carbohydrate meals, for instance the reason i have Special K cereal is it has lots of vital vitamins and minerals, it should release energy more slowly. However i understand that many have stated that i am still ingesting too many carbohydrates.

Bluetit1802 i will definitely do a small test and try get back to this forum with the result. I will test my blood glucose before i eat, then every 30 minutes after eating and see if there is any patterns.

Lamont D you are right, your post makes sense this is most likely why my symptoms are worsening as my diet still is not right and this is weakening my insulin control further. Do you kindly have any recommendations for vitamins or herbs that i can try with my diet or any you might have had experience with? I do feel as my symptoms are quite severe i would have trouble controlling these symptoms with diet alone. Do you think if i cannot get this under control try using the acarbose medication?

Once again thank you for all your support, it has been wonderful and much better than the advice from doctors, which was not very helpful.

I only gave you a brief overview of what is happening to you constantly.
We have our forum, it is full of knowledge, ideas, insights into this rare condition and regardless of diagnosis, this will put you on the path to better control, knowledge and of course health.
Most doctors haven't a clue how to treat RH, I was lucky I found my endocrinologist, who recognised the symptoms.
It's only through this website that I found how to start to get control.
It works mate!
It's the carbs!
We don't need them.
Please read our forum and then read the low carb forum for ideas suited to your tastes.
Unfortunately, there is no cure and being in normal glucose levels is how to stay healthy.
Not having the highs (hypers) will stop the lows (hypos)
Get a monitor and keep a food diary, this is one of the first things my endo told me to do. It is a great tool to use through the coming months ahead of finding your tolerance to foods. Testing is so important and I feel it's incompetence by your medical team not to supply you with one.
I do not take supplements, I don't need them but others do.
Finding what you need helps.

Finally, and I know that it may be totally baffling you at the moment, it's not what you expected, how can the doctors get it wrong and what do I do!
Well, that's the symptoms kicking in. The symptoms of RH is a list long and awful, you will probably discover that some of them you don't realise that you have them.
So, think outside the box, find the knowledge, why your body does 'react' the way it does (excess insulin) and think logically about how to treat and control it.

If you have an allergy, similar to an intolerance to certain foods, why still eat them ?

Keep asking and read our forum, I'll ask @Brunneria to give you the link.
Or you go to top of page click on forums, then scroll down till you see Reactive hypoglycaemia.

I have no knowledge about about arcabose.
I would try the diet first.

Can a moderator please put this thread in the RH forum?

Best wishes

 

[kokhongw]

As always...I recommend adding some virgin coconut oil to your diet...it may just help provide your brain with a little more fuel especially when glucose drops...

 

[Brunneria]

Paul, if you want a gentle introduction into low carbing, then The Low Carb programme offered by Diabetes.co.uk is a good method in. Since you are already a forum member here, you can just log into it.
https://www.diabetes.co.uk/lowcarb/

If you want to go straight for very low carbing, then have a look at the Dietdoctor.com website.
https://www.dietdoctor.com/
Lots of explanations, videos and recipes. To get access to the whole site you may need to sign up, but the first month is free, so you are able to sign up, read EVERYTHING and then end your membership before the first payment is due.

I take a whole range of vitamins and supplements but I would strongly urge you to prioritise getting your diet sorted first, since in my experience it is by far the biggest game changer.
Then, when/if you have that settled, you can look at other stuff.

My experience was simple: lower my carbs enough, and the RH went away. Increase the carbs again, and the RH came back.

 

[kokhongw]

The basic premise of RH is that carbs results in excessive insulin response which then drives the glucose to a lower than normal level. In addition, if there is impaired glucose uptake in our brain due to insulin resistance, then even at relatively normal glucose levels of 4.0-5.0 mmol we may experience hypo-like symptoms.

The suggestion for virgin coconut oil is that it contains MCT oil that can supplement the brain with alternative fuel when it cannot get enough glucose from the system. This came from Dr Mary Newport's anecdotal report for discovering the use of virgin coconut oil for her husband's Alzheimer's condition.

The exception to this premise is when the excessive insulin secretion is not triggered by diet, but by other pancreatic conditions. So if moderating your carbs intake does not improve your condition, then it would be advisable to seek further medical advise on the matter.

 

[paulshaw56]

Thank you so much for all your responses, i am grateful.

I will look around the different forums here and try to get as much knowledge as possible on the low carbohydrate diet, i do think this makes sense. This is most likely why i am feeling so awful as i am having an excessive insulin response at every meal. I feel so exhausted as the day goes on and i never normally felt like this.

I am going to try some of the things you have all mentioned, such as monitoring my blood glucose, trying different meal plans and i will let you know how i get on. If the symptoms still persist i may need to go back for further advice from my doctor but i do not feel anything further can be gained from doing this.

@Brunneria can i kindly ask what supplements you take, i know i may not need to try any, but at least i would have some ideas for supplements if i was still struggling with my diet? I will consider supplements last as i will try refinements to my diet first as stated. It would be useful to have this information if you do not mind sharing this with me please.

Can i please also ask are you able to live a normal life with this condition? As at the moment i feel so negative such as i may not be able to travel abroad again? As i would dread to experience a low blood sugar episode for instance on a flight or travelling around. This condition really panics you, does anyone who has this condition able to get control of their symptoms so they are able to live a normal and happy life. I understand it is a condition that does not go away, but at the moment i even feel worried just walking the dog or going into a grocery store that i might have a low blood sugar episode.

Once again thank you so much for all your support. I have only been registered on this forum a few days and i have learnt more than the 3 years i have been chatting to doctors.

 

[paulshaw56]

Sorry to bother you all again, hope you are doing well.

I am currently experimenting with my diet and i will see how i get on, limited my carbohydrates, seeing if i can stop these blood sugar swings.

Just for reference if this still does not help can anyone recommended any vitamins / minerals or herbs they use, which might help their blood sugars stay stable for longer. Please do share if you have a minute, this could really help me out, thank you so much for your time.

 

[Resurgam]

I'm afraid there is nothing to work a cure with greater effect than controlling what is making your pancreas over react - the carbohydrate in your diet.
You could try a good multivitamin and mineral mix, and chromium, L glutamine, zinc, selenium, magnesium and the B complex vitamins as they have all been put forward as helpful in hypoglycaemia - I make notes.
Substances under suspicion of causing problems are caffeine and Aspartame.

 

[Lamont D]

Thank you so much for all your responses, i am grateful.

I will look around the different forums here and try to get as much knowledge as possible on the low carbohydrate diet, i do think this makes sense. This is most likely why i am feeling so awful as i am having an excessive insulin response at every meal. I feel so exhausted as the day goes on and i never normally felt like this.

I am going to try some of the things you have all mentioned, such as monitoring my blood glucose, trying different meal plans and i will let you know how i get on. If the symptoms still persist i may need to go back for further advice from my doctor but i do not feel anything further can be gained from doing this.

@Brunneria can i kindly ask what supplements you take, i know i may not need to try any, but at least i would have some ideas for supplements if i was still struggling with my diet? I will consider supplements last as i will try refinements to my diet first as stated. It would be useful to have this information if you do not mind sharing this with me please.

Can i please also ask are you able to live a normal life with this condition? As at the moment i feel so negative such as i may not be able to travel abroad again? As i would dread to experience a low blood sugar episode for instance on a flight or travelling around. This condition really panics you, does anyone who has this condition able to get control of their symptoms so they are able to live a normal and happy life. I understand it is a condition that does not go away, but at the moment i even feel worried just walking the dog or going into a grocery store that i might have a low blood sugar episode.

Once again thank you so much for all your support. I have only been registered on this forum a few days and i have learnt more than the 3 years i have been chatting to doctors.

Sorry, I somehow missed this post.

I am living proof that you can live a normal life with this condition.

I work full time and have a very active life.

Because of my roles and responsibilities I have to travel the country all the time and I don't worry now that I have total control of my diet and the food I eat or not when I'm travelling.
I have had great response from hotels and always plan ahead for my travels.
Today, I travelled to North Lancashire, spent four hours at a wonderful location and travelled back down the M6 and home. Not once did I worry or get out of control.
I know what to do and because my awareness of going out of ketosis, I know the signs. I go prepared and all my work colleagues know what my condition is and how to help me if needs be, I do have bad days, but mostly really good days.

Avoid carbs and get your life back, I did!
It is not easy, you need a lot of will power and strength to avoid temptation.
Clean out your cupboards and fridges, freezers, let everyone know what you intend and get the rewards of feeling healthy.
It is possible, very low carb works!

Best wishes

 

[paulshaw56]

Thank you Lamont it is great to hear that you are now living a normal life, i am pleased. I hope one day i can also get my life back with my new diet and trying new supplements. It is encouraging to hear that you are doing so well, so this has lifted my spirits that i can become like you.

I am also adding a B complex vitamin to my diet and already i am feeling my energy levels improving. Does anyone kindly know a good complex mineral formula that might include chromium, L glutamine, zinc, selenium, magnesium and any other helpful minerals. I could buy these minerals separate but i wondered if anyone knows a good mineral formula please.

My new diet is also helping i am limiting bread and many other substances that are full of carbohydrates. However some days i am craving sugar very badly and i felt bad last week as i had a sugary snack and felt awful after eating it. Does anyone know how i can resist these sugar cravings and do you feel one sugar snack a week is okay or can i never go back to eating sugar again? For instance if it was my birthday, do you think as a one off a cake would be okay or should i try and limit these type of snacks forever.