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

[Ryan31337]

When you say "akin to postprodinal hypoglycemia", did you have the blood sugar drop or did you get the symptoms without actual hypoglycemia? When I first started getting ME symptoms and PEM, my aunt recognized a crash as a hypoglycemic episode, and backed it up by testing my blood sugar which was well below what it should have been. I had this problem for a while, but it has since disappeared and I don't have postprandial (also called reactive) hypoglycemia now. The hunger feeling I've described above is not linked to my carb intake, unless I somehow change my reaction to carbs when I get these episodes. It doesn't disappear by eating fats or protein either when it has first manifested itself.

I had borderline low morning fasting blood glucose tests, but never caught an out of range (low or high) result during the day.

The endo that I saw said usually the next step would be a glucose tolerance test with continuous insulin monitoring in hospital, he felt that would probably catch some rapid swings in glucose/insulin that random testing wouldn't. I had read that a mixed meal challenge is apparently better at triggering issues, perhaps where GI motility problems are involved? There have been some written accounts (either on here or PR) from patients that have been through this testing with quite unusual results but no classically understood cause. Because I had POTS/OI the endo was confident that I'd see resolution of symptoms by very significantly limiting carbohydrate intake (ketogenic diet), which I did.

I definitely notice a "tolerance" to carbohydrate that varies and seems linked with my other measurable OI signs, like BP variability and increased tachycardia - basically the onset of mild PEM for me. I am able to tolerate a low-medium carbohydrate diet now most of the time, but have also been prescribed Acarbose off-label by a POTS clinic in an effort to compensate for times when things aren't working so well and I start experiencing the hypo symptoms again.

Where it gets a bit interesting is that that I'd very regularly have these hypo-like episodes at around 4am-6am. I'd wake from sleep, inappropriately cold and hungry, with tachycardia and anxiety and be unable to get back to sleep. I could either ride it out for 45mins or so and wait for it to self-correct, or go have a snack and then I'd be back to normal more quickly and able to sleep. The endo noted this and that it didn't fit particularly well with the reactive hypo theory, given that I'd not eaten for about 6hrs+ prior. I suppose some sort of dawn phenomenon (dumping of glucose) followed by an exaggerated over-correction could have been happening here to cause this and reflect what was happening during the day after meals too. For what its worth my POTS would be classified as more strongly hyperadrenergic leaning and we have evidence that can impact insulin sensitivity now - in that paper I linked above, compared to controls the POTS patients insulin was raised after glucose challenge but blood glucose was not reduced.

 

[Mij]

I wonder if higher protein intake is also required in sick people - if they can eat it without feeling worse.

I need meat protein. I've tried a macrobiotic diet for six weeks, but felt much better when I went back to eating meat again.

 

[Hoopoe]

I've known for many years that I have a tendency to experience reactive hypoglycemia. It was much more noticable in my early 20s. It's different because it tends to occur 2+ hours after meals and causes symptoms of hypoglycemia, which includes hunger and things such as sweating, tremor in the hands, dimming of consciousness, feeling unwell. But continuing to feel starved and hungry half an hour after meals, with a full stomach is not reactive hypoglycemia.

 

[Ryan31337]

I've known for many years that I have a tendency to experience reactive hypoglycemia. It was much more noticable in my early 20s. It's different because it tends to occur 2+ hours after meals and causes symptoms of hypoglycemia, which includes hunger and things such as sweating, tremor in the hands, dimming of consciousness, feeling unwell. But continuing to feel starved and hungry half an hour after meals, with a full stomach is not reactive hypoglycemia.

I'd tend to agree - the only caution I'd make from my own experience is if there are snacks between meals the responses may overlap and confound, the rollercoaster I spoke of before. Fairly straight forward to rule out if following a stricter meal plan again though.

 

[Saz94]

Despite an apparently normal food intake, I sometimes feel like I'm starving. I can also become hungry again despite still having a full stomach from the last meal.

What could be causing this?

Can be a side effect of some medications

(Personally I sometimes get it as a side effect from zopiclone)

 

[Mithriel]

There is a test for reactive hypoglycaemia, I’ve had it done before (via endocrinology). They take your blood, then give you a sugar solution, then take your blood again a couple hours later. So they can see how the glucose is affecting you. You have to start the test on an empty stomach, and it’s usually done in the early morning eg 9am.

This is the glucose tolerance test and it is the gold standard for diabetes. I used to get one every 2 years when I was prediabetic then one year it showed I now had diabetes.

The brain controls the regulatory functions in the body so if that is damaged by ME or if there is not enough energy to make everything work efficiently these are the problems you would get.

 

[wigglethemouse]

Despite an apparently normal food intake, I sometimes feel like I'm starving. I can also become hungry again despite still having a full stomach from the last meal.

I have something similar since becoming severe. I've only seen a few people write about this symptom.

What could be causing this?

I did a two week measurement with a Continuous Glucose Monitor from NutriSense. The NutriSense App was great as it has a good system to enter everything you eat and then you can see how your glucose responds. There were no hypoglycemic episodes or very large peaks despite sometimes getting shaky, nausea, and light-headed before meal times. My average glucose for the period matched my A1C. I still don't know what causes it.

The best meals for preventing this seem to be rich in meat and cooked vegetables.

I found that the only things that would really help was having cooked warm meals at the same time every day. Meals that were rich in meat and cooked vegetables really helped. However, if I delay my meal or when my ME is worse it comes back. Protein shakes rich in amino acids did not seem to help much with this particular symptom.

The missus uses an instant pot to make a curry stew which then gets placed in canning jars in the fridge. That way it keeps well. For lunch every day she warms up half a jar for me and we find that the stash will last a week.

Once the carbs were gone/minimised the strong reaction went too.

In the last year I also removed all carb snacks (for pain reasons), but I'm not sure if it helped with hunger or not. I agree with the quote below.

I'd tend to agree - the only caution I'd make from my own experience is if there are snacks between meals the responses may overlap and confound, the rollercoaster I spoke of before.

 

[livinglighter]

PwME can also feel hungry due to dysfunction of the hypothalamus and pituitary as both regulate appetite and is part of the PNEI model of ME/CFS.

 

[NelliePledge]

PwME can also feel hungry due to dysfunction of the hypothalamus and pituitary as both regulate appetite and is part of the PNEI model of ME/CFS.

PNEI?

 

[Midnattsol]

PwME can also feel hungry due to dysfunction of the hypothalamus and pituitary as both regulate appetite and is part of the PNEI model of ME/CFS.

But then there'd also likely be a lot of overweight and obese pwME, and I'm not sure that's the case.

 

[NelliePledge]

I’ve met a fair few overweight people with ME online especially the ones in 40s/50s. There are people at both ends of the spectrum of weight as in the general population. Possibly indicating sub groups of ME? But we don’t know enough about the course of ME and progression, severity. presumably looking at peoples weight should be part of any longitudinal research

 

[livinglighter]

I fall into the overweight category now, but I also had the same appetite issues when I wasn't overweight.

The fatigue clinic I attended also had a dietician as it is considered common.

It is also quite common for people with ME/CFS to gain weight. This can be due to a lower physical activity level, or “comfort eating” when feeling low.

Some people report that they feel much hungrier than normal (medical term = polyphagia). It is not known why this happens, but it may be linked with hormonal changes and poor sleep patterns as well as the above.

https://meassociation.org.uk/2017/09/why-are-we-asking-about-weight-change-in-this-months-me-association-website-survey-02-september-2017/#:~:text=It is also quite common,(medical term = polyphagia).

Polyphagia, also known as hyperphagia, is an intense hunger that is not satiated by eating. The craving can be for food in general, or a specific food, and leads to overeating. It is a symptom associated with several conditions, primarily diabetes.

https://www.verywellhealth.com/polyphagia-5114624

Definition of hyperphagia
: abnormally increased appetite for consumption of food frequently associated with injury to the hypothalamus.

https://www.merriam-webster.com/dictionary/hyperphagia

[Edited: to add information]

 

[livinglighter]

PNEI?

Psychoneuroimmunology (PNI), also referred to as psychoendoneuroimmunology (PENI) or psychoneuroendocrinoimmunology (PNEI), is the study of the interaction between psychological processes and the nervous and immune systems of the human body.[1][2] It is a subfield of psychosomatic medicine. PNI takes an interdisciplinary approach, incorporating psychology, neuroscience, immunology, physiology, genetics, pharmacology, molecular biology, psychiatry, behavioral medicine, infectious diseases, endocrinology, and rheumatology.

The main interests of PNI are the interactions between the nervous and immune systems and the relationships between mental processes and health. PNI studies, among other things, the physiological functioning of the neuroimmune system in health and disease; disorders of the neuroimmune system (autoimmune diseases; hypersensitivities; immune deficiency); and the physical, chemical and physiological characteristics of the components of the neuroimmune system in vitro, in situ, and in vivo.

I shouldn't quote Wiki but it was the first thing that came up that does a good job at explaining it.
https://en.wikipedia.org/wiki/Psychoneuroimmunology

I have also posted the ME/CFS PNI model I was shown during the explanation of the condition I received at the fatigue clinic on this forum.

 

[Midnattsol]

I fall into the overweight category now, but I also had the same appetite issues when I wasn't overweight.

Hyperphalgia will in most cases lead to weight gain as being hungry like that is just extremely terrible. Parents of kids who develop this, for example after cancer treatment, may have to lock food away as kids will be unable to stop eating. They are never full

I've had hormonal issues with excessive hunger that lead to weight gain, and for me that hunger was something different than what I have described in this thread previously.

That a fatigue clinic has a dietitian I would (sadly) assume is due to the "low activity level" and "comfort eating", not necessarily because they think there is something wrong with our hormones. I'm not a fan of assuming patients are comfort eating, especially with an illness that could influence your ability to cook. A question that comes up often in one of the fb groups I'm in for pwME is what to eat in a crash, and while many of the suggestions would come in under "comfort food" for most people, they are chosen because they are easy and many can be kept in a drawer next to the bed... such as snack bars. That's out of necessity and not for comfort.

That said, as in all populations, there will be pwME that use food to regulate emotions.

 

[livinglighter]

Hyperphalgia will in most cases lead to weight gain as being hungry like that is just extremely terrible. Parents of kids who develop this, for example after cancer treatment, may have to lock food away as kids will be unable to stop eating. They are never full

We have to lock away the snacks in my house as I will constantly eat them even with a full stomach. I'm just suggesting other possibilities.

That a fatigue clinic has a dietitian I would (sadly) assume is due to the "low activity level" and "comfort eating", not necessarily because they think there is something wrong with our hormones.

I'm not so sure as according to my medical records hypothalamic–pituitary–adrenal (HPA) axis dysregulation is noted. Just that fatigue clinic is not the place for it to be medically addressed as it is a self-management place.

I'm not a fan of assuming patients are comfort eating, especially with an illness that could influence your ability to cook.

I agree, I think it's more than that.

 

[Midnattsol]

We have to lock away the snacks in my house as I will constantly eat them even with a full stomach. I'm just suggesting other possibilities.

I thought I would give an example of how hyperphalgia can play out as I don't think everyone is aware, I wasn't trying to argue

Just that fatigue clinic is not the place for it to be medically addressed as it is a self-management place.

What worries me are the attitudes certain clinicians have, and the presumptions they make, when it comes to weight gain and how patients should learn to manage.

 

[Mithriel]

I am overweight. Until fairly recently I had responsibility for children and I never ate anything because I fancied it just to prevent hypoglycaemia and to give a slight boost of energy for things I had to do. It was very annoying.

The other problem with my weight or rather diet, is that when I was too ill to cook other people dished up fish and chips and ready meals.

 

[TigerLilea]

I need meat protein. I've tried a macrobiotic diet for six weeks, but felt much better when I went back to eating meat again.

I've found for myself if I don't eat meat often, my sleep is awful. I tried doing a more plant based diet along with salmon some days, and I found after three days without meat I don't sleep well. It makes me wonder what is it about meat that helps with sleep. I've heard of a few vegan influencers who had to go back to having animal protein in their diets because of health reasons and some found that they slept much better once they were eating meat and seafood again.

 

[Hoopoe]

Something that has also happened to me is eating a lighter dinner than usual, and the next morning going out for a walk after the usual breakfeast and ending up having what felt like a mild episode of hypoglycemia.

 

[Mithriel]

Charles Shepherd once said that people with ME needed some meat in their diet and that vegetarians did not do so well. (It went down very badly so it was never mentioned again.)

I think creatinine was once said to be useful in ME. For myself, I don't eat much meat nowadays but there are times when I have to have some, usually when I have badly overdone things.

I cook a packet of lamb chops then cut them into 1 inch squares which I freeze. When I need meat I thaw a couple of pieces. Its all I need so I don't think it is just an excuse to have something expensive!