New to RH - a steep learning curve!

[Anne Crisp]

Age 65 I've recently been diagnosed with RH. Have always had a bit of a thing with low blood sugar but it got suddenly worse recently. I bought a Libre monitor & was shocked to see the highs before the crashes. Advised by all medics to eat complex carbs & take sugar/glucose when low. This made it much worse- ended up in A & E twice before seeing an endocrinologist who advised avoiding carbs and drinking milk when sugar dipped. The spikes & crashes stopped quickly but it's hard getting used to low carbs. It's been hard to find clear advice on what RH is & how ro manage it if you're not diabetic. Hoping this forum will help!

 

[Rachox]

Hi and welcome to the forum @Anne Crisp . I’ll tag in one of our members who has RH and may have advice for you. @Lamont D

 

[Melgar]

Hi and welcome to the forum @Anne Crisp . @Rachox has already tagged @Lamont D who is very knowledgeable on RH. I do know that a low carb diet alleviates, in most cases, the reactive lows, due to an insulin overshoot. Have a read through the RH forum, many members have contributed to some very interesting discussions on RH.

 

[JoKalsbeek]

Age 65 I've recently been diagnosed with RH. Have always had a bit of a thing with low blood sugar but it got suddenly worse recently. I bought a Libre monitor & was shocked to see the highs before the crashes. Advised by all medics to eat complex carbs & take sugar/glucose when low. This made it much worse- ended up in A & E twice before seeing an endocrinologist who advised avoiding carbs and drinking milk when sugar dipped. The spikes & crashes stopped quickly but it's hard getting used to low carbs. It's been hard to find clear advice on what RH is & how ro manage it if you're not diabetic. Hoping this forum will help!

RH is, very simply put, an overreaction to a glucose spike. Like a diabetic who's injected too much insulin, you hypo, because your pancreas releases more than you need, making you crash. Weird, huh, how quite a few docs don't seem to understand that if there are no highs, there's no lows either, so.... Avoid the highs, get no lows. They just think "Oh, someone's hypo? Throw glucose at it!", because they just figure it's just like a diabetic low's... And it's not, because the cause is different. And this method would keep you just going around on that high-low-high-low rollercoaster. @Lamont D can get a whole lot more technical than that, but that's the short of it.

https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html should help with the low carbing a bit, as well as diabetes.co.uk 's website, and dietdoctor.com (No need to sign up if you don't want to, lots of info is free.). You don't have to be diabetic to low carb, but if there's anything specific you need help with, there's a whole food/diet section here, so you're quite free to ask anything.

Good luck!
Jo

 

[Lamont D]

Age 65 I've recently been diagnosed with RH. Have always had a bit of a thing with low blood sugar but it got suddenly worse recently. I bought a Libre monitor & was shocked to see the highs before the crashes. Advised by all medics to eat complex carbs & take sugar/glucose when low. This made it much worse- ended up in A & E twice before seeing an endocrinologist who advised avoiding carbs and drinking milk when sugar dipped. The spikes & crashes stopped quickly but it's hard getting used to low carbs. It's been hard to find clear advice on what RH is & how ro manage it if you're not diabetic. Hoping this forum will help!

Hi @Anne Crisp and welcome to our forum.
I was diagnosed over a decade ago now, but have had symptoms and the feeling **** for over twenty years now.
I don't have to add much more cos of the other posts have covered it, mostly.

It does seem that your endocrinologist knows more than the other doctors, I think he understands the science behind it. But if you read through quite a few threads on the RH forum, you will notice that most dietary advice concerning the symptoms and reaction, are for Diabetics, mostly T1 or T2s on insulin.
But we are not diabetic.
Even tho it is possible, if we don't control the reaction. And produce abnormal spikes over a long time.
You have noticed the high spikes, this is the trigger for the overshoot of insulin which causes the hypos.
If you don't have the abnormal spikes, you won't have the reaction no hypos.

You will have more questions, as it is quite complicated.
This is because of the intolerance to carbs and sugars.
My really bad intolerance could be a lot worse than your milder form of intolerance.
You may be able to have more carbs than I can.
And I am pleased you have a CGM, so you can discover which foods that spike you high.
And along with that, use a good diary to track your food, pre meal and two hours after, or more.

Can I ask which tests you have had to get the diagnosis?

You need to rethink your dietary options, cos the more control you have the less symptoms you have.

It is not easy, it will become a pain, but as I found out, it is achievable and with a healthy attitude and a plan to cope with the dietary control, your health will improve.
I did because I discovered what the carbs was doing to me.
And when I stopped, and my blood glucose levels were in normal levels continually, my health improved so much, I lost six stone and I'm healthier than I was twenty years ago.

My best wishes.
And ask away.
We will try to help you.

 

[Anne Crisp]

Thanks for the welcome and the information. It's a huge relief to have access to people who understand this. Someone asked what tests I've had - loads of blood tests, including 9am cortisol (normal) and c-peptide (high). Faecal elastase (high end of normal). I saw an endocrinologist through the Benenden scheme who ordered a CT contrast scan of the pancreas - pancreas & liver fine but they spotted a growth on an adrenal gland which is apparently nothing to do with this but needs follow up. I recently discovered the hard way that how you cook some things matters - butternut squash roasted longer than usual was enough to spike me. I intend to wear another monitor soon to experiment with foods & hopefully extend my list of what's safe. The endocrinologist has RH himself & had worked out that a small glass of full fat milk helps to settle dips/crashes. It works for me so I no longer panic when it happens! So much to learn...

 

[Lamont D]

Thanks for the welcome and the information. It's a huge relief to have access to people who understand this. Someone asked what tests I've had - loads of blood tests, including 9am cortisol (normal) and c-peptide (high). Faecal elastase (high end of normal). I saw an endocrinologist through the Benenden scheme who ordered a CT contrast scan of the pancreas - pancreas & liver fine but they spotted a growth on an adrenal gland which is apparently nothing to do with this but needs follow up. I recently discovered the hard way that how you cook some things matters - butternut squash roasted longer than usual was enough to spike me. I intend to wear another monitor soon to experiment with foods & hopefully extend my list of what's safe. The endocrinologist has RH himself & had worked out that a small glass of full fat milk helps to settle dips/crashes. It works for me so I no longer panic when it happens! So much to learn...

The blood tests?
was that an oral glucose tolerance test?

I'm lactose intolerant, so milk won't be something I could suggest, but there are less carbs in full fat milk than the others.
you have to be very careful with manufactured food cos of the additives and how you cook food which I cook mine from fresh and only fresh food.
And the fats you need.

A little warning over treating a hypo, is if you over great with either too much carbs, sugar, drink. You may get what is known as the rebound effect. That is when the blood glucose levels bounce back into abnormal high levels and then the reaction, overshoot and of course the hypos. A rollercoaster of by BG levels.
Which as I found out is not what we want.

There is a lot to learn and maybe teach your endocrinologist about the science behind it all, ha!
Best wishes.

 

[Anne Crisp]

I have a few questions about food please. I've read that it helps to avoid caffeine - is that true? What about grains, beans and pulses? Information sources on keto or blood sugar diets (like Michael Mosley) vary about these. I am really missing bread! I've found the Freshwell low carb project useful (it wouldn'tlet me include a link here) - has anyone else used this?

 

[JoKalsbeek]

I have a few questions about food please. I've read that it helps to avoid caffeine - is that true? What about grains, beans and pulses? Information sources on keto or blood sugar diets (like Michael Mosley) vary about these. I am really missing bread! I've found the Freshwell low carb project useful (it wouldn'tlet me include a link here) - has anyone else used this?

This is why using a glucose meter comes in handy: you can see what certain foods do. But yeah, grains, pulses and beans are carby, those can cause a up-down reaction. Can't help you with caffeine, some get a spike off it, some don't, that's one of those things you could measure to see which is true for you. It might trigger a response from the liver which'll make it dump glucose in your bloodstream, but it might not. Luck of the draw, that...

 

[Lamont D]

I have a few questions about food please. I've read that it helps to avoid caffeine - is that true? What about grains, beans and pulses? Information sources on keto or blood sugar diets (like Michael Mosley) vary about these. I am really missing bread! I've found the Freshwell low carb project useful (it wouldn'tlet me include a link here) - has anyone else used this?

I agree with the post above.
The need to start testing is important.
You won't know until you do.
I spent a lot of time discovering how bad the majority of carbs were not right.
The worst were potatoes (starchy carbs, starch is another name for carbs) wheat, porridge, oats, grains, pasta, rice and so on.
The thing about caffeine, is that you may have an intolerance to it, but how do you take your caffeinated drink?
Do you have it with milk? As milk has lactose, another sugar. Some can drink full fat, some can't.
You have to review all your food and drink choices.
I drink black tea. Stronger the better. But that was a natural progression from very young. Lactose intolerance.
There are so many hidden carbs and sugars hence only cooking fresh food.
Then I know what I'm eating.
I have never followed anyone on advice, except a certain person on here, who just wanted to help. And the only person after diagnosis who had been through RH. And found a way to control the condition. Not my endo.
I learned through using to get prick testing and a food diary. I learned so much from her and the testing
I try to remain in keto, as it works for me.
What will work for you will be different cos you have different tastes and of course, where you live, your affordability etc.
Keep asking.
Best wishes.

 

[Anne Crisp]

Thanks for these responses. I'm back on the monitor this weekend and hope to add to my list of foods that I already know I can and can't eat. I read somewhere on this forum that a spike of 2 or more mmol after eating is too much - is that right? It said 2 hours after but found my spikes happening more quickly than this - nearer to an hour. I guess it's the difference between my normal level and a spike that matters, rather than the time it takes?

Also has anyone found a way to manage any takeaway food, or eating out? I didn't do this lots before but would be gutted if it's now an impossibility!

 

[Lamont D]

Hi again,
It's great you have a monitor.

Thanks for these responses. I'm back on the monitor this weekend and hope to add to my list of foods that I already know I can and can't eat. I read somewhere on this forum that a spike of 2 or more mmol after eating is too much - is that right? It said 2 hours after but found my spikes happening more quickly than this - nearer to an hour. I guess it's the difference between my normal level and a spike that matters, rather than the time it takes?

Also has anyone found a way to manage any takeaway food, or eating out? I didn't do this lots before but would be gutted if it's now an impossibility!

I do believe that you have not got the gist of the testing regime.
when you are testing or recording your results, you record your pre meal reading. The two hour reading is the one you allude to about the 2mmols higher.
That is higher than the 2mmols higher than pre meal.
so pre meal is say 5mmols.
The two hours reading is over 7, then there is something in that meal is spiking too high.
if it is below 7 then the meal or combination of food is ok..
But if you change the carb count of the same food combination or portion size, then it will be different result.

The spike, which for me happens around the 45 minute mark, mainly because of a weakened hormonal response, which is the insulin. Should not be too high. I would be concerned around 8mmols or above cos then I know I will get the reaction. This is the trigger for the reaction. That is why the spike and knowing why it happens, to avoid the trigger, the spike and the reaction, the overshoot, the hypo.
No spike, no hypo.

Eating out is difficult, but if you can ask who is cooking the food, how it's cooked. I found that if you know say for breakfast, egg and bacon, and it's not cooked in veg oil, so grilled or poached egg, should be ok.
If it's steak, grilled is fine.
An omelette is great, obviously the filling should be low carb.
Beware of sauces curries, gravy or dressings on salad.
Salad is great, depending on what with!
But be wary of pre prepared salads.
When I was travelling, I used to take or find somewhere that I knew cooked food fresh.
Hotels, restaurants are usually accomodating.
And most places have that allergy, intolerance information to hand.
With RH, you have an intolerance to sugar and carbs.
Never mind, as I am, lactose, wheat and grain intolerance.

It is not easy to understand or get your head around.
Keep asking.
Best wishes

 

[Melgar]

I have a few questions about food please. I've read that it helps to avoid caffeine - is that true? What about grains, beans and pulses? Information sources on keto or blood sugar diets (like Michael Mosley) vary about these. I am really missing bread! I've found the Freshwell low carb project useful (it wouldn'tlet me include a link here) - has anyone else used this?

Hi there @Anne Crisp , you mentioned caffeine. Caffeine can impact sleep. Disrupted sleep can mean that your circadian rhythms are being disrupted. The thing about our circadian system is it orchestrates your metabolism. Your main biological clock rests in your hypothalamus, you also have biological clocks in your liver and beta cells and through your cells. Your biological clock consists of genes, and protein encoded products. It’s a day and night thing , it makes sure your body is operating properly depending on the time of day. It’s quite amazing. It synchronizes external factors with your internal bodily functions. Hence if you miss a nights sleep you feel wretched, nauseous, you likely get indigestion, you feel tired. Caffeine can disrupt your body, disrupt your blood sugar processes , for instance your blood sugars may be higher , and so forth.
I quit caffeine a while back. I’m sleeping much better, and I’m sure my metabolism is coping better than it was. The point is, your circadian clocks orchestrate hormone releases so that your body is running in an efficient manner. Caffeine will disrupt this flow, if you drink too much fluid containing caffeine.

 

[Melgar]

When I read all the posts on these forums, it does make me wonder when did eating become this fraught with problems. When we were kids we ate what we wanted( depending on our parents) when we wanted. Now it seems to be a minefield. We think a lot more about what we eat and the consequences of it all.

 

[Lamont D]

When I read all the posts on these forums, it does make me wonder when did eating become this fraught with problems. When we were kids we ate what we wanted( depending on our parents) when we wanted. Now it seems to be a minefield. We think a lot more about what we eat and the consequences of it all.

I'm going to disagree with you there mate.
I have as long as I can remember lactose intolerant. Which caused me untold problems.
I also had a girl in my junior school who had a peanut allergy.
And a few in my grammar school, who had different types of allergies, such as hay fever etc.
but I do think It wasn't in the public eye as much as it is now.
I also believe that because of the overall state of the environment, such as the rise in cases of asthma and similar similar conditions, plus messing about with the genes of the food, the reliance and overproduction on manufactured goods in the supermarket shelves. The use of e numbers and ingredients that more people are vulnerable.
And the change from animal fats to vegetable oil in the sixties/ seventies.
We have changed in fifty years from home cooked meals, which is fresh produce to junk food or microwave meals.
plus the medical science has improved in the knowledge of the intolerances.
RH was called idiopathic postprandial hypoglycaemia, late last century.
cos the boffins, didn't understand the science.
some still dont!

 

[Melgar]

You are right @Lamont D . I guess it just feels like it , it in reality it never was.