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Reactive Hypoglycemia Help Needed


Hi Paul - I'm not an RH'er, but I am someone who has worked through the reduction/elimination phase of my diet.

Your current carb cravings are pretty common in this phase. Our bodies like to work to a routine, and if that routine includes a chunk higher carbs than you are now, your body sometimes will send you signals asking "where are my carbs?".

In terms of getting over these cravings and hopefully reducing or removing them from your life, it's usually fairly important to stick with your diet, rather than take a carb hit. The carb hits can trigger some of the RH symptoms, if you cross your personal thresholds, but can also refresh your body's desire for more carbs.

Once you have been lower carbing for a while, your taste buds will alter, and you may actually find that some savoury things taste very sweet.

One thing some people find is that if they've been eating a particular way for a while, if they revert to earlier eating patterns their sensitivities increase, bringing more extreme reactions than in the "old days", which could for you mean a more acute RH episode.

Please do ensure you understand I said could experience that, not that you would experience it. The frustration of almost any of these metabolic disorders is that they are so highly personal. You have to track yourself, by recording food, bloods and symptoms to make a fair assessment, then judge how lucky you feel, when approaching the cake.
 

The general rule of thumb for RH ers is to avoid sugar, carbs and any food that spikes you.
Unfortunately, it is the hit you get from these foods which determines wether you are feeling good or ill!
In my own experience and example, I avoid those foods as much as possible to feel really good. Why would I eat something that makes me ill?
Being intolerant to certain groups of foods such as wheat, grains, pastries, bread, rice etc means it is like poison to me, if I had a peanut allergy would I eat a couple?
I have a dairy intolerance because of the lactose, why would I drink it?
There is certain foods you can eat a bite of, but no more.
Fruit for instance, I seem to have small pieces but not too much.

As has been said, you have to find a balance, that makes you feel better and that is what a very low carb diet does.
It cuts out those foods that spike you.

Do you have a particular reason for using supplements?
Maybe somebody has mentioned you need these to offset the diet you are on.
I don't need them, since diagnosis and going very low carb, my body has adjusted through the craving and adjustment period, the need to take anything else has diminished, my blood tests have become remarkably normal, especially for someone as medically weird as me!

The longer you stay in normal blood glucose levels range, the better you will feel, it will not be a quick fix, this may take a few weeks but it is worth it. Just to feel normal (ish) again! The energy and the lucidity.

Keep asking, see this though and you will get your life back.

Best wishes.
 
Thank you for all this very good information about hypoglycemia. Especially to OP.
Since this thread is old, I certainly hope you have found solutions to avoid the low blood sugar incidents by now Paul. Else it's stated further down what we have to use for our daughter when she goes extremely low.. Sugar and honey is not effective at all in her case.

I have made this profile on behalf of my daughter, born August 2016, who experienced her first coma in March last year. Ambulance has become a common mean of transportation after that. So far she is put on hormones for metabolism and lack of pituitary gland hormone production. In Norway we don't get equipment good enough to monitor her 24/7 when she goes low. After the hormone therapy started in October, she's not fluctuating a lot anymore, which she did every day from April to October. Unfortunately we still see 1.7-2.5mmol/L regularly. Our first aid is 500mg/ml glucose distributed orally. If we are not up at night monitoring her regularly manually, we now know too well her continouco Dexcom G4 monitor gives a 3.5-alarm 30-60 minutes after she goes below 2.0mmol/L. She is of course followed up by MDs and other specialists on a weekly basis, but most of the work involved falls on us as parents. Her lowest measured value was 0.9mmol/L in an ambulance 15 minutes after a shot of glucagon. 5 minutes later she was 0.7. (This is not a typo. The values was below 1.0) Mostly when we call an ambulance she is 1.3-1.9 and mostly we are able to give her the 500mg/ml glucose before she goes into a coma, but not always.
We understand that these values are very rearly seen. Which is the reason I post this in the first place I found a discussion which seems relevant to our daughter's hypoglycemia.
I would really appreciate to get in touch with anyone with similar issues, since doctors struggle to explain what causes this extreme low blood sugar values.
She has an incredible team of professionals working on her condition, but they admit she is a challenge out of the ordinary which none have seen before. At least in Scandinavia. That is the reason I try to post this to get in touch with ordinary people with experience in hypoglycemia, but also maybe try to find professionals who can add helpful advice for her medical team. Maybe first of all a tip about a continuous monitoring device that is more exact than the device adapted to diabetes patients.

Kind regards
Anders K (worried parent)
Norway
 

Oh @Giang-Cristina
I am so sorry to hear what you and your daughter are going through.

Unfortunately, my experiences are completely different from your 2 year old daughter, and I just can’t offer any advice except to suggest that you put your trust in her healthcare team.

Hypoglycaemia in children is different from in adults, so be careful about taking things that we may be discussing here on the forum, and assuming that it applies to your daughter. Especially since her pituitary gland is involved. I have a pituitary gland tumour, but it sounds like her problem is very different, since mine over produces hormone, even that won’t help you.

I am terribly sorry that i cannot offer more help.
 

Thank you very much for your feedback and concerns @Brunneria

We follow your advice simply because nobody still have any idea fully what causes her hypoglycemia. So we'll keep on looking for people and professionals who have seen difficult hypoglycemia cases. We know they are very rare and research is unfortunately not easy to find. The main reason is the doctors know it's several issues involved that makes an exact conclusion quite a challenge to them.
 
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