Is this RH and if yes, is keto diet the only option?

[Silkki]

Hello everyone! This is my first post on the forum.

I suspect I suffer from reactive hypoglycemia. I accidentally found about it a couple years ago. Doctors do not seem to really understand it though and I feel quite alone with the symptoms. Since I was a child, I have always been very sensitive to blood sugar fluctuations. As a child, I would get hangry if the time between meals would extend out too big. I was even tested for diabetes but didn't have it. Since I can remember I have suffered from symptoms after meals. The severity of the symptoms depend on the day (I guess, what I eat and when) but the symptoms usually show up especially after lunch and breakfast. Somehow during evenings I don't get any symptoms or really mild symptoms (maybe because I don't eat that heavy and have been eating already during the day so the blood sugar level hasn't dropped?).

My symptoms include (about an hour after the meal):
- Often extreme fatigue, it's really hard to stay awake
- Feeling dizzy
- Headache
- Heart beating fast
- I'm out of breath
- Brain fog, hard to think
- Sweating
- I become really thirsty
- Irritability
- I crave sweets

What helps: if I sleep (I sleep for 2 hours), green tea seems to help a bit, if I try my best to stay active and not lay down.
It is hard to pinpoint why and when the symptoms become really bad. I should keep a food diary. Some days the same breakfast can cause bad symptoms, other days I'm fine. I feel like eating a too heavy lunch, too early, causes worse symptoms. Eating too much sweets and sugar can cause me to have worse symptoms even the following day. Also, trying to keep my meal times regular seems to help

If I do not eat at least one proper meal a day (+ something else, like breakfast, bread, snacks) or haven't eaten for a long time, the symptoms include:
- Shaky hands
- Feeling nauseous
- Headache
- Tiredness
- Feeling lightheaded
- Irritability
- Dizziness

What helps: Eating, but not sweets, they will make me feel extra bad.

Especially the symptoms I get after the heavier meals and usually after breakfast as well, are really hard to live with. Many days have gone by just sleeping and trying to recover from the symptoms. Is this reactive hypoglycemia?

I've read that people sweat by keto diet and intermittent fasting. I'm afraid going keto. First of all, I have problems with my mental health and I am afraid that it would just be too much for my mental health, as trying to constantly think what I can eat and failing to do that, would really stress me out. However, I have been able to cut down on sugar and eat more healthy and regularly lately. It has been a hard journey but I know my mind and body will thank me in the end! Is a low carb option something that can help, without going strictly to a keto diet (under 50 grams a day)? Are there any other options I can try?

Thank you!

 

[Antje77]

Are there any other options I can try?

Hi @Silkki , and welcome to the forum!

I think the best thing would be finding out what is going on first!

You mention a lot of physical problems but many of them aren't usually associated with RH.
By deciding on a restrictive diet you may be trying to treat a condition you don't have.

I don't have RH myself so I'll refrain from further comments. However, let me tag in @Brunneria , she knows way more about RH than I do.

Wish you all the best!

 

[Resurgam]

A ketogenic diet is likely to mean that you have less to think about, have a lot of pressure taken off as it is so simple - last night, for instance I heated up some cubes of meat cut from joints of pork and beef and added them to half a bag of low carb stir fry from Lidl, then later on I had Greek yoghurt and sugar free jelly - I had intended to add frozen berries but did not bother as I was not very hungry.
RH is all about producing too much insulin, so reducing the need for insulin in the first place is like turning down the heat under a boiling pan.

 

[Lamont D]

Hello everyone! This is my first post on the forum.

I suspect I suffer from reactive hypoglycemia. I accidentally found about it a couple years ago. Doctors do not seem to really understand it though and I feel quite alone with the symptoms. Since I was a child, I have always been very sensitive to blood sugar fluctuations. As a child, I would get hangry if the time between meals would extend out too big. I was even tested for diabetes but didn't have it. Since I can remember I have suffered from symptoms after meals. The severity of the symptoms depend on the day (I guess, what I eat and when) but the symptoms usually show up especially after lunch and breakfast. Somehow during evenings I don't get any symptoms or really mild symptoms (maybe because I don't eat that heavy and have been eating already during the day so the blood sugar level hasn't dropped?).

My symptoms include (about an hour after the meal):
- Often extreme fatigue, it's really hard to stay awake
- Feeling dizzy
- Headache
- Heart beating fast
- I'm out of breath
- Brain fog, hard to think
- Sweating
- I become really thirsty
- Irritability
- I crave sweets

What helps: if I sleep (I sleep for 2 hours), green tea seems to help a bit, if I try my best to stay active and not lay down.
It is hard to pinpoint why and when the symptoms become really bad. I should keep a food diary. Some days the same breakfast can cause bad symptoms, other days I'm fine. I feel like eating a too heavy lunch, too early, causes worse symptoms. Eating too much sweets and sugar can cause me to have worse symptoms even the following day. Also, trying to keep my meal times regular seems to help

If I do not eat at least one proper meal a day (+ something else, like breakfast, bread, snacks) or haven't eaten for a long time, the symptoms include:
- Shaky hands
- Feeling nauseous
- Headache
- Tiredness
- Feeling lightheaded
- Irritability
- Dizziness

What helps: Eating, but not sweets, they will make me feel extra bad.

Especially the symptoms I get after the heavier meals and usually after breakfast as well, are really hard to live with. Many days have gone by just sleeping and trying to recover from the symptoms. Is this reactive hypoglycemia?

I've read that people sweat by keto diet and intermittent fasting. I'm afraid going keto. First of all, I have problems with my mental health and I am afraid that it would just be too much for my mental health, as trying to constantly think what I can eat and failing to do that, would really stress me out. However, I have been able to cut down on sugar and eat more healthy and regularly lately. It has been a hard journey but I know my mind and body will thank me in the end! Is a low carb option something that can help, without going strictly to a keto diet (under 50 grams a day)? Are there any other options I can try?

Thank you!

Hi @Silkki and welcome to our forum.
Unfortunately we cannot diagnose you.
However we can guide you through this by telling you our experiences.
The only way you can get a true diagnosis is by convincing your doctor to refer you to a specialist endocrinologist who has experience of these types of conditions, only the specific diagnostic tests can provide you with answers.
I spent over a decade trying to convince my doctors who really didn't have a clue what was going on or why I was getting similar symptoms to you.
You have said that you should keep a food diary, but you need a glucometer to help you record your blood glucose levels, especially if it is food that is causing your symptoms.

If you have RH, or a similar condition, as there are quite a few others as well as metabolic conditions, then a ketogenic lifestyle is probably the best treatment for it!
But I do know that others do low carb and eat every three hours to offset the hypoglycaemic episodes. I personally would recommend Keto and intermittent fasting, or similar because it is much easier to prepare for a small window when you eat.
I struggled for eating options when I was first diagnosed but it all changed when I read up on ketogenic lifestyle and found out what I could eat and now, it is not a problem. You have to find out, wether you have allergies or are intolerant to certain foods.
Start a food diary and convince your doctor about a referral.

 

[Brunneria]

Hi and welcome @Silkki

Short answer: no one here can diagnose, or give medical advice. So I am very sorry that we cannot answer your question.

however, RH is a tricky beast, and one of the reasons it is so little recognised, and so little understood, is that it mimics all sorts of other health conditions. So the best thing would be to find yourself a doctor or consultant who understands RH.

In the absence of such a rare healthcare professional, there are a few things you can do for yourself.

Firstly, try cutting carbs. I fully recognise your concerns with mental health, and I simply don’t know how low carb you may need to go. When I was in my teens and 20s, all I needed to do was cut out sugar and bread and potatoes. Thought I had it sorted, and it was easy. But as I aged (I am now 53) I needed to go lower and lower carb to get the same benefits. Wish I had gone very low from the start. Think I would be in better health now if I had taken greater steps earlier on.

Secondly, you can buy a blood glucose meter and see if you are actually having low blood glucose when you get your symptoms. I suggest a cheap meter, such as the Tee2 or the Codefree (if you are in the UK). The test strips are economically priced.

Until you know whether you are having hypos, you won’t know whether it could be RH or a food intolerance, or something else.

You asked whether keto was the only answer? That really depends on whether you need to go as low as keto, or whether there is something else going on. In my case I had to go keto and gluten free.
My personal experience is that the benefits of living without RH make the hassle of keto/GF almost insignificant.

Please let us know how you get on?

 

[Silkki]

Thank you for all of your answers and support! It really means a lot! I didn't realize that there are many other conditions as well that can look like RH but aren't. I definitely need to get diagnosed by a doctor.

I think what I will do now is that I will start keeping a food and symptom diary. I think that if I went to see a doctor, they would ask me something similar. Fortunately I have a health insurance and so it wouldn't be a problem to see a specialist or get tests done, so that is something I'm really grateful of and lucky to have (I live in Finland.) I would just need to find someone who understands the different conditions. I have a glucose meter and when I tested my glucose levels, they varied between 5.2 and 5.8. I have to say, I was a bit puzzled at the time about what it meant and the meter itself didn't really offer any guidance. I concluded that my blood sugar levels are fine.

You are all right that low carb diet would actually make it easier to decide what to eat and what not, also that if it helps, it is much better than to suffer like this!

I think after a while (after keeping the food diary) I could try out without sugar, bread and potatoes and see how that goes, if there are any changes. Lunch with potatoes usually give me these symptoms, now that I think of the past week and what I have eaten. Also, bread in the morning seems to be worse than plain lactose free yogurt.

 

[Donought]

Hi Silkki,

How have you been? Reading your first post was like reading about myself. Hope you managed to persuade a Doc to take you seriously. When I told my doc that I was testing blood sugar and it was high (10.5/11mmol) I was asked why I was doing that and told to stop.

Cheers,
D

 

[AnnetteTS]

Does anyone know of an Endocrinologist who specializes in this area of non-blood sugar related hypoglycemia type attacks? It has been an awful 18 months. I live in Yorkshire but am willing to travel to see the right one. Cheers

 

[Lamont D]

Hi, I have sent a private message to you.
If you are a bit uncertain, use Google to read about him.
If you need a bit of guidance or questions answered, please ask.

Stay safe