Feeling like I'm starving, or continuing to feel hungry despite a full stomach

[Haveyoutriedyoga]

The symptoms match reactive hypoglycemia or postprandial hypoglycemia but if you say that to most doctors the response will be dismissive. I had a GP tell me to "eat less cake" and another, less well informed endo tell me "you're just an outlier". In the absence of a better understood driver like diabetes or gastric resection its just thought to be a self-correcting non-issue, what some people might experience after eating a big sunday dinner - you might feel a bit lethargic and that's about it.

In my case on some days when my function was especially poor I would eat a relatively normal portion of food (in terms of size and carb/protein/fat distribution) and then an hour or 2x later have those symptoms I mentioned with noticeable blurry vision, ringing in my ears and be completely unable to remain upright or process anything. I'd sleep/pass out for 20-30mins and wake up fine - it took quite a while for it to progress to that stage though and was somewhat variable, often linked with PEM (and mirroring other OI symptom severity that also got worse in PEM).

The somnolence got so bad at times I was sent for a sleep study with MSLT and ironically the crashes were at their worst on those days because I changed my diet due being in hospital for the tests. I had brought my own food because of intolerance, there was no refrigeration so I was only eating bread, jams, fruit and sugary snacks... seems obvious now but wasn't at the time and reminds me of what you said about recently changing your diet in recovery. May be something entirely different in your case, but worth a simple food trial I think.

Thanks for your posts on this, I am experiencing similar and the info is useful. Do you have any other tips to share?

 

[Ryan31337]

Thanks for your posts on this, I am experiencing similar and the info is useful. Do you have any other tips to share?

I'm sorry that you're having to deal with it, it can be very distressing & disabling.

I think its risky to assume the driver for your symptoms is the same as mine, there are at least a few quite different reasons these issues happen. In my case interventions for POTS are essential to control my "tolerance" for carbohydrate: if I'm too active in the AM, or if I don't limit the time I spend on my feet, or if I miss medication (Ivabradine & Pyridostigmine) doses, I will struggle again after eating and/or at dawn (alongside a worsening of other POTS symptoms).

With POTS under control I am now able to tolerate a normal amount of carbohydrate and sugar in my diet, but if something disrupts that long-term I would try the Acarbose that was prescribed off-label, or I would go back on a ketogenic diet.

If you're in the UK I'd be happy to share details for the Endocrinologist I saw that helped me with all this

 

[Haveyoutriedyoga]

I'm sorry that you're having to deal with it, it can be very distressing & disabling.

I think its risky to assume the driver for your symptoms is the same as mine, there are at least a few quite different reasons these issues happen. In my case interventions for POTS are essential to control my "tolerance" for carbohydrate: if I'm too active in the AM, or if I don't limit the time I spend on my feet, or if I miss medication (Ivabradine & Pyridostigmine) doses, I will struggle again after eating and/or at dawn (alongside a worsening of other POTS symptoms).

With POTS under control I am now able to tolerate a normal amount of carbohydrate and sugar in my diet, but if something disrupts that long-term I would try the Acarbose that was prescribed off-label, or I would go back on a ketogenic diet.

If you're in the UK I'd be happy to share details for the Endocrinologist I saw that helped me with all this

Thank you, I would like their details please, I may contact them after I've exhausted options with the GP (so probably soon ).

I hear what you say about not assuming the same cause, I was just dx PCOS which usually comes with insulin resistance so it is all making sense now. I had specific 'hypo'-like episodes of increasing frequency when I started becoming unwell with what was later dx MECFS, and eventually became unwell all of the time. I am yet to go back to the GP, they may not be interested if I am not actually diabetic despite how disabling the symptoms can be.