Possible RH help please?????

jojobubbles said:

Hi all thanks so much for all your advice so far. I have ordered a glucose testing kit from Accu. I think I ordered the right thing and have been testing today on my mums my base level was around 5.0 then I had some white bakery bread with butter then it started to rise within that first hour to the maximum of 13.0 I am not sure what that means. What level does it need to be at to be reactive???? I really appreciate all your help. I think I am going to go back to my normal non kept diet and track each meal with the monitor as there is no point if I am avoiding everything as it won't spike. I even had palpitations after drinking quite a bit of coconut milk and I thought that was ok?

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What that means is your first insulin response is weak and the amount of glucose produced by the carbs in the bread had a reaction to the low insulin. Classic RH.
Avoid that bread! That spike is far too high!
After finding those foods that spike you. You should aim to not spiking above your own individual level that will spike you. In other words keep to near normal levels as much as possible.
I can't explain the coconut milk.
We have a way of describing how to avoid the fluctuations in blood glucose levels.
No hyper (spike!) No hypo.
If you don't trigger the glucose you don't trigger the insulin overshoot after.

Do keep a food diary, that is the only way to gain the knowledge to see which foods that you are intolerant to. Experience and experiment and keep records of before and after meals.
Do read the thread on how to test and record your blood glucose levels on our forum.

jojobubbles said:

Hi all thanks so much for all your advice so far. I have ordered a glucose testing kit from Accu. I think I ordered the right thing and have been testing today on my mums my base level was around 5.0 then I had some white bakery bread with butter then it started to rise within that first hour to the maximum of 13.0 I am not sure what that means. What level does it need to be at to be reactive???? I really appreciate all your help. I think I am going to go back to my normal non kept diet and track each meal with the monitor as there is no point if I am avoiding everything as it won't spike. I even had palpitations after drinking quite a bit of coconut milk and I thought that was ok?

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There is no exact level that would start triggering a hypoglycemic episode. How the blood sugar fluctuate may vary from person to person.

Having blood sugar over 11.2 are not normal, and for some people an hyperglycemic episode will result in excessive insulin respond, causing a hypo afterwards. If you get symptoms with readings below 3.9 mmol you do have RH regardless of how high your blood sugar were. So the interesting part is to see how your blood sugar respond when all the symptoms starts to kick in.

Good to hear that you got a glucose monitor, it already sound like you found some abnormalities that may explain some of your symptoms

jojobubbles said:

What level does it need to be at to be reactive????

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When you have symptoms and you measure under 4, you oficially have a hypo.
But some people with reactive hypoglycemia can have symptoms in the (lower) normal range. My symptoms used to start if I came below 4.5.

jojobubbles said:

Thanks for your helpful information. I didn't realise it was when it was a low number that was when you had RH. I tend to feel most of my symptoms when the level is at a high number which is odd, is there any condition that does this when the number is high. I am definitely going to check what the number then goes down to. thanks again

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What makes it even more complicated (sorry!) is that sometimes we get hypo like symptoms if our blood glucose is dropping fast (for instance dropping from 12mmol/l down to 5mmol/l in a short time).

And sometimes, we get the symptoms and test, with a result that isn’t at hypo levels. So we dismiss it as not a hypo.
However, we were hypo, and our body released stress hormones to drive the blood glucose up again - and the wobbly shaky feelings are from the stress hormones rather than the hypo. So by the time we think to test, our blood glucose has already risen out of hypo territory.

Another fly in the ointment is that some people experience food intolerance reactions that appear very similar to hypo symptoms.

Yes, it can be very confusing!
Your decision to get a meter and test, is a great way to get your head around it.

jojobubbles said:

Thanks a lot for that Brunneria, do you think if I went to see an endocrinologist they would help me make more sense of whats going on as this is really affecting me now, as I am unsure to go back to normal eating and text all the time so I can prove it happens with certain foods then take it to them. or do I stick to the Keto diet which is (so hard) and then just eat individual items and see how they react but that could take forever to find out what I can and cannot eat. The other thing is that no body has mentioned on here is that I tried eating peas and brown bread and now I get really bad acid when I have never really suffered from.

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I believe that seeing an endocrinologist is a good start to find out what is happening.
Other than doing blood tests, only endocrinologists can authorise the tests for diagnosis. Ask your GP for a referral.
You have to find those foods, I noticed you mentioned bread again, I avoid bread like it's a poison to me. I know that it will make me ill.
I know it's particularly hard not eating stuff that you have eaten all your life, and who would have thought that basic foodstuff could do this to you!
Experiment and test, that is important.
Bad acid is usually a bacterial problem in your stomach.
I suffered this many years ago, it was from a bacteria called heliocobacter pylori and recently discovered that it is one of the causes of RH.
Since then, no problems, no acid!
I also had a hiatus hernia, that has gone since eating the healthy foods for me.
Unfortunately it is about what you eat, so getting your head around that is one of the steps to better understand and health.

Best wishes

Sometimes I really wish I was less self sufficient. Lol.

My RH story is that I started getting the symptoms as a child. My mother soon learned that we needed to stop half way through whatever we were doing, and give me a snack, or I just went white and shaking and ‘sulky’.

Doc said ‘she’ll grow out of it.’ But of course I didn’t.

By the time I had left home and was independent enough to ask docs for help, I was already Low Carbing (because anything else was unbearable).

Docs told me I was too fat, lose weight, and it would all go away. Low fat, low cal, etc. Besides, did I want to have antidepressants or eat a healthy diet? Those were my two choices, apparently. No attempt to see an endocrinologist was ever successful until my late 20s when I was diagnosed with a tumour in the pituitary gland, which screws up my hormones in several ways, and various endocrine issues were ‘discovered’. I now see an endo for that, but he won’t do more than acknowledge my RH/glucose dysfunction. I was referred to him for the tumour, so that is what he focuses on.

So I dealt with the RH by myself. Always have. And I have never had an official RH diagnosis. And certainly cannot be bothered to organise one now. I have excellent records, screen shots of my hypos. Plenty of ‘proof’ of RH. Also a good understanding of how, why, how to avoid, what causes my hypos and how to treat and recover, if things go pear shaped. I can manage my own condition with precision.

Getting myself a diagnosis would involve a few skirmishes with the doc (who probably wouldn’t have a clue what all my evidence was showing him, so I would have to push for a referral, lots of testing, and all the while eating foods that would make me feel dire, just to convince them That my RH exists.

Then what would happen? A few drug options that I consider a waste of time? Advice to eat more carbs than works for me. Then discharge back to the local surgery who haven’t a clue about RH and would probably refuse me blood glucose testing equipment because I am not on insulin.

No thanks.
I will continue eating a diet that works for me and that I love, while monitoring my blood glucose. If at any point things deteriorate I will be straight round to the doctors insisting on tests and referrals, but at the moment, I am in a pretty happy, stable place.

I consider myself very lucky to be in this position, and happy to stay this way. I can think of no benefit that would result from an official diagnosis.

A very different story from @Lamont D who found a helpful endo.

I guess I am saying that each route (pushing for a diagnosis, or not) ends up taking you back to self motivated, self managed, dietary control. But we each choose how to get there.

For the first ten years or more, I didn't have a clue what was happening to me.
Then a misdiagnosis of T2!
So clearly all my health care providers didn't have a clue either!
Since my diagnosis, my anxiety about my doctors and dsns at my surgery, have gone, they are really supportive and have learned from my experience with RH!
They continue the yearly diabetic checks, I get my test strips, they agree that my being in ketosis is the best treatment because that is what my health indicators show!
My endocrinologist is special to me. I correspond with him by email, he asks the right questions, he has given me my life back.
I helped him by helping myself to understand why.
I have learned so much from him, my experience and of course this forum, especially Brunneria!
So, from being ignorant to being learned in how and why I have RH and get my health back.
RH is a condition, it is a pain in the backside at times, but it is better than being so ill, I could hardly function.
And it is all about what you put down your throat!

Best wishes.