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large appetite

anniekim

Senior Member
Messages
779
Location
U.K
Since my M.E became severe six years ago, I've struggled with a large appetite, despite being very sedentary. And at the TOTM, it goes through the roof!

I try to have protein with every meal and snack, very little sugar etc, no refined carbs etc, but I can't seem to reduce my appetite. I have put on a lot of weight and would like to lose some of it, but I find it such a struggle when I need to constantly eat. Any advice? Many thanks
 
Messages
64
Location
Western Australia
I have this same issue. It seems as though I am ALWAYS hungry. I try to fill up with lots of veges. Doesn't always work though. Salad especially doesn't cut it for me. I eat it a lot, but it never fills me up.

I have always thought that it must have something to do with the body's lack of energy. It is craving energy, and therefore food.

If I drink a couple of glasses of water before I eat, I will feel full. Probably about the only thing that helps a bit. Haven't found anything that really soothes this voracious appetite.

I try and make sure I have a lot of low calorie snacks (like carrot sticks) readily available, so I don't get tempted by other stuff.

take care, ness
 

Valentijn

Senior Member
Messages
15,786
According to the glutathione depletion theory, a deficiency in aconitase is also likely. Aconitase is needed by the Kreb's cycle for converting carbs, fats, and most proteins into cellular energy. Without enough aconitase, we're doing a piss poor job converting food into energy, and the "excess" calories get stored as fat.

So we don't get much energy from the food we eat AND we get fat from it :) Eating small snacks frequently throughout the day might help, especially if you're getting a mix of proteins, carbs, and fats.

But eating a normal meal is likely to cause us to gain weight (or prevent us from losing it). Even if it's just 300-400 calories at once, it might be more than we can process before it gets converted into fat. Unfortunately, our bodies just know that they need more energy, so they get pretty demanding. Frequent snacks might help with blood sugar swings as well.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi Valentijn - does that suggest that anniekim would benefit from going on Rich's Simplified Methylation Protocol to raise her glutathione levels? Or supplement with aconitase?

I'm interested in this because I put a couple of stone on gradually while mostly bedbound and it has taken a year of careful calorie restriction for me to shift it. I sympathise with anyone trying to do the same but finding they're always hungry! I think it's a real problem.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Since my M.E became severe six years ago, I've struggled with a large appetite, despite being very sedentary. And at the TOTM, it goes through the roof!

I try to have protein with every meal and snack, very little sugar etc, no refined carbs etc, but I can't seem to reduce my appetite. I have put on a lot of weight and would like to lose some of it, but I find it such a struggle when I need to constantly eat. Any advice? Many thanks

I've had the exact same problem. But with some periods of the complete opposite, total lack of appetite and not eating much at all. Right now I'm in that phase but ever since having bad CFS my hormonal cravings and hunger pangs have become intense, especially protein cravings and I've had many periods of just being constantly hungry, regardless of time of month. Right now it's the opposite and even when I can tell my body is hungry, I have no appetite and don't feel like eating anything. I have no idea what is responsible for either phase and why I switched from one to the other recently. Also, despite the huge appetite I don't think I gained weight.

I wish I had advice for it, but I didn't find anything to help. Like you I tried to eat protein since it seemed to be the only thing that sort of filled me up. I especially would get very hungry late at night before bed.
 

Valentijn

Senior Member
Messages
15,786
Hi Valentijn - does that suggest that anniekim would benefit from going on Rich's Simplified Methylation Protocol to raise her glutathione levels? Or supplement with aconitase?

I don't think it's possible to supplement aconitase directly. The methylation protocol might help in getting everything back into balance eventually. But supplementing cysteine (probably the limiting factor in forming glutathione in ME/CFS) in the form of N-acetylcysteine (NAC) might help in the shorter term.

Forming aconitase requires three cysteine molecules, which we might have trouble having enough of if cysteine levels are low to start with and being depleted to create glutathione, etc.
 

anniekim

Senior Member
Messages
779
Location
U.K
Thanks for these replies, very appreciated. Valentijn, with your info, I think I will buy some a nac supplement and see if it helps as I really can't stand feeling so hungry all the time. I need to lose some weight (have put on 25 kilos in the last few years), but am finding it so hard. Do you have any recommendation for dosage? Many thanks.

Also is the even further increase in hunger at the time of the month linked in with the glutathione depletion theory, or is it not linked, as i know healthy females can have increased hunger around their period?

I did start the simplified methylation protocol. I took a tiny bit of the neurological vitamin formula and it absolutely wiped me, could not stop sleeping. I confess i gave up. I think I am going to try the homeopathic dose sizes of B12 and methylfolate as someone has been doing on here with some some success.
 

Valentijn

Senior Member
Messages
15,786
I'm on 1800mg per day, which is the dose that was used in some studies on people with HIV that also had cysteine and glutathione deficiency. It seems to be working well, but there were also studies going up to 30mg per kilogram of bodyweight per day without side effects. I spread it out throughout the day, due to it not remaining in the body long, instead of taking it all at once. But I think grazing throughout the day is also very important for the weight management aspect.

If I recall correctly, our girly hormones do require glutathione to process, hence the absurd monthly flare up of symptoms. Maybe the extra drain on glutathione is siphoning off extra cysteine, therefore less cysteine is available to be used to create aconitase, etc.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
A very fascinating discussion and some good ideas. I also have this problem. I gain weight like mad but cannot lose it easily at all.
 

anniekim

Senior Member
Messages
779
Location
U.K
I'm on 1800mg per day, which is the dose that was used in some studies on people with HIV that also had cysteine and glutathione deficiency. It seems to be working well, but there were also studies going up to 30mg per kilogram of bodyweight per day without side effects. I spread it out throughout the day, due to it not remaining in the body long, instead of taking it all at once. But I think grazing throughout the day is also very important for the weight management aspect.

If I recall correctly, our girly hormones do require glutathione to process, hence the absurd monthly flare up of symptoms. Maybe the extra drain on glutathione is siphoning off extra cysteine, therefore less cysteine is available to be used to create aconitase, etc.

Thanks Valentijn for your reply, appreciated. Do you have any thoughts on the theory that nac redistributes mercury into the brain? I don't understand it at all, but have seen it written....
 

Valentijn

Senior Member
Messages
15,786
Thanks Valentijn for your reply, appreciated. Do you have any thoughts on the theory that nac redistributes mercury into the brain? I don't understand it at all, but have seen it written....

It's something I hadn't considered, since I haven't been sick very long and didn't have a detox reaction when starting richvank's protocol.

But I've just found http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1533084/pdf/envhper00528-0071.pdf which indicates that NAC did an excellent job of getting methylmercury out of the brain of mice, rather than taking it to the brain. But NAC didn't affect inorganic mercury levels at all. It also says "NAC does not alter tissue distribution of essential metals".
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
My apetite is either I dont have any at all even at my meal times or Im raging hungry. I seem to be missing the in between.

I just ate a pie (which Im not meant to eat but I was sooo hungry) and half of a large chicken for lunch (and Im not a big person).
 

anniekim

Senior Member
Messages
779
Location
U.K
It's something I hadn't considered, since I haven't been sick very long and didn't have a detox reaction when starting richvank's protocol.

But I've just found http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1533084/pdf/envhper00528-0071.pdf which indicates that NAC did an excellent job of getting methylmercury out of the brain of mice, rather than taking it to the brain. But NAC didn't affect inorganic mercury levels at all. It also says "NAC does not alter tissue distribution of essential metals".

Thanks for those links

Just to recap (sorry I've always been hopeless at science) is the aconitase deficiency due to depletion in gluthathione? Are our bodies desperately trying to make glutathione which then uses up all the other elements such as aconitase? Thank you
 

Valentijn

Senior Member
Messages
15,786
Just to recap (sorry I've always been hopeless at science) is the aconitase deficiency due to depletion in gluthathione? Are our bodies desperately trying to make glutathione which then uses up all the other elements such as aconitase? Thank you

No worries :p It usually takes a few tries for me to absorb things too, especially involving biology.

Both glutathione and aconitase need cysteine. Without enough cysteine, we don't have enough glutathione or aconitase. Plus it's likely something is draining glutathione, so that might be why there isn't enough cysteine to make as much glutathione as our bodies would like.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
I used to have a huge appetite. For me it was nutritional deficiencies and lack of sufficient protein and fats. It took a long time to get my vitamin/mineral levels up but the protein and fats helped more quickly.
 

Calathea

Senior Member
Messages
1,261
I've had quite a strange experience with hunger and weight. I'm in the group that put on weight, which I think was partly due to chaotic sleeping times leading to chaotic routines generally. I was eating at random hours and couldn't remember when I'd last eaten, let alone how much. I felt hungry all the time and rather hopeless about shedding the extra weight I'd put on. I got my sleep into a normal pattern a few years ago, but I was used to chaotic routines for everything else - it's not as if I have a job to work them around - so they stuck.

Then my GP decided to try me on low-dose amitriptyline for pain. It stopped me from being hungry, and it also gave me insomnia. It did squat for the pain so I wasn't on it for long, but the reprieve from the ravenous appetite made me determined to try losing weight. For some reason, my appetite stayed normal even after I came off the amitriptyline. I do get hungry at mealtimes, which has forced me to stick to good routines for meals. Occasionally I get a bit randomly peckish, especially around my period, but not enough to cause serious trouble. Other things that changed noticeably was a slight increase in energy, enough that I can now shower in the mornings most of the time rather than the evenings, which makes life easier for both myself and my partner.

The weight loss has been going beautifully, at a rate of about 1lb/week, although it's slowing down now as I'm nearing target. I didn't realise until coming to this forum that I'm actually quite unusual in being able to lose weight at all. I'm now curious as to why, and also curious as to why the appetite didn't come back once I went off the amitriptyline. (And come to that, most people get sleepy and hungry on amitriptyline, and I got the opposite, which is also strange, especially since the previous time I was on amitriptyline, it did make me sleepy.)

I reckon I was accidentally taking in too many calories before, despite not thinking I did. Now that I've learned more about nutrition and where calories like to lurk, I've reassessed my ideas of what counts as a snack and so forth. So one theory I have is that overeating was actually triggering the increased appetite, and that eating at sporadic times was messing with my hunger signals as well. People have been having a fairly learned and in-depth discussion of this sort of hunger over at the weight loss forum I hang about in, although right now I can't for the life of me remember what they say about it. It's certainly a common problem, it's not just us. One thing I do remember is that food manufacturers these days are very very good at making us eat as much as possible, and that salt + sugar + fat is the key combination for that purpose. 3 Fat Chicks is the forum is anyone wants to snoop around there, it's a good place.

The other thing I'm wondering about is whether I'm currently able to do this - lose weight, not get starving hungry - because my sleep is a lot better than it was. I am a keen practitioner of darkness therapy, and every night at 9.30 I put on glasses with a nice strong orange tint which blocks all blue light and sometimes muck about with the lighting, depending on whether or not my partner is there to object, and then make sure that I sleep in total darkness (yep, I'm quite good at groping my way to the loo in the dark by now). The idea is that blue light suppresses the release of melatonin, and if you block blue light then you get a good strong flow of melatonin starting when it should, which is a few hours before bedtime. It works like a charm for me, the effect is approximately as good as a good sleeping tablet but without the problems attached. I don't think my sleep is perfect by any means, doubtless it's still doing plenty of the weird things sleep does with ME, but it's definitely the biggest improvement I've ever managed, and I now get sleepy at the peculiar hour of 11ish.

Anyway, poor light/dark signals are the norm these days, as we no longer live and work outdoors. The light thing is vaguely recognised in that SAD (Seasonal Affective Disorder) is quite well known now, and often treated with light therapy, but the darkness thing doesn't even tend to get raised apart from occasionally with shift workers. Research is starting to be done, though, particularly in regard to melatonin. Shift workers tend to be a lot shorter in melatonin than everyone else, and at much higher risk of breast cancer and other hormonal problems, that sort of thing. One of the websites I like for learning more about darkness therapy (wouldn't bother with their products, though, hugely overpriced) has a selection of articles about how it relates to obesity. I'm too tired to read scientific writing this evening, but there's probably a few useful things in there. I didn't magically lose weight the second I started darkness therapy, nothing's that good, but I suspect that I would have had a much harder time of it before I got my sleep patterns under control. The improvement in my sleep was enormous, and appalling sleep is the norm with ME along with weight that gets messed up one way or the other, so I wouldn't be surprised if there's a correlation there. Although I am tired enough to be wittering by now, let me know if I'm completely failing to make sense and I'll edit later.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
I am a keen practitioner of darkness therapy, and every night at 9.30 I put on glasses with a nice strong orange tint which blocks all blue light and sometimes muck about with the lighting, depending on whether or not my partner is there to object, and then make sure that I sleep in total darkness (yep, I'm quite good at groping my way to the loo in the dark by now). The idea is that blue light suppresses the release of melatonin, and if you block blue light then you get a good strong flow of melatonin starting when it should, which is a few hours before bedtime. It works like a charm for me, the effect is approximately as good as a good sleeping tablet but without the problems attached. I don't think my sleep is perfect by any means, doubtless it's still doing plenty of the weird things sleep does with ME, but it's definitely the biggest improvement I've ever managed, and I now get sleepy at the peculiar hour of 11ish.

Interesting! You can still see fine out of the glasses? Are they just regular sunglasses that have an orange tint? I've been trying to think of a way to cut out ambient light in the evening for the melatonin thing, and this seems like a great way--I didn't know about the blue light, I'll have to look it up.
 

hurtingallthetimet

Senior Member
Messages
612
hello, someone may have already mentioned but maybe it is your medications? ive gained a ton of weight from medications and not being able to exercise like i use to..also stress makes me eat it seems..and i stay stress and full of worry and anxietys...the medications im on has side effect of weight gain...im trying to wean off of that one..maybe if it is your medications as a side effect you can change to another medication..

its very depressing for me because i was always so thin and active..now im huge look awlful and feel awlful..hate these illness
 

svetoslav80

Senior Member
Messages
700
Location
Bulgaria
I have the same problem. I've become quite greedy (for food), after I stopped smoking. Even that I was able to make 8 day fast only on water, after I started eating again, my appetite came back. So my tactics is that I made a regimen - fruits in the morning, stable lunch and stable dinner, but no other meals at all. Of course the appetite didn't disappear but I just remind myself when is my next hour for eating when it comes.