CFS severity driven by leptin

[Ema]

I would guess not re oral supplementation, as it is a protein and will be mostly or completely broken down by stomach acid before it gets to where you need it. Injection, maybe, but maybe not available yet. Also, per this page, it seems that problems are sometimes due not to a lack of leptin but to insensitivity to it.

I read a blog where a woman did a clinical study using leptin injections. I'll have to try to find that again. It was interesting. She lost quite a bit of weight if I remember correctly.

Dr Kruse (I know) says that it isn't the absolute leptin level...it's the sensitivity to it. So the obese have high leptin and leptin insensitivity and the bulemic/anorexic have low leptin and also are leptin insensitive. It's all about restoring sensitivity in his view and restoring proper thyroid and HPA axis function.

Good basic leptin article here:

What’s in a Name? In Search of Leptin’s Physiologic Role

http://press.endocrine.org/doi/abs/10.1210/jcem.83.5.4779?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub=pubmed

 

[heapsreal]

insulin sensitivity and leptin sensitivity seem to be tied together.

Then there seems to be cycles within cycles that affect insulin and leptin such as prolactin, if too high can cause issues and seems to be counteracted by dopamine. Dopamine agonists are now being used for type 2 diabetes?

Estrogen dominance seems to be an issue in both men and women and can cause issues with regulating insulin/leptin.

In men low testosterone can reduce insulin sensitivity, so fixing this can help.

Im sure there are other different cycles that disrupt the insulin/leptin sensitivity, just a matter of finding the issues for the individual. Inflammation, nmda/glutamate, mitochondria, circadian rthym issues, adrenal fatigue etc. Many of us have more then 1 issue that needs fixing.

There seems to be fatty's and skinny's with cfs/me, i think for fatties like me losing weight could help fix alot of hormonal issues but have several of the above issues makes it alot harder then a typical person to lose and maintain their weigh. From my researching i think optimal dopamine can help fix several of the above issues and worth experimenting with.

I guess the body likes to be in balance and or bodies are screwed up especially hormonally??

 

[A.B.]

insulin sensitivity and leptin sensitivity seem to be tied together.

Can you better explain what you mean with this?

I have noticed that for me, periods of exhaustion tend to come together with constant hunger (in contradiction with supposedly higher leptin levels) and decreased ability to maintain stable blood sugar (with the tendency for blood sugar to drop too low). In this state, exercise, ie. increased glucose consumption, can easily set off hypoglycemia. I just had it happen today: cleaning my room while just coming out of a three week period of exhaustion, plus a drink made of blended fruits was enough. Fortunately this is a mild thing for me, but it makes me wonder what exactly is going on in the body.

 

[Ema]

insulin sensitivity and leptin sensitivity seem to be tied together.

Then there seems to be cycles within cycles that affect insulin and leptin such as prolactin, if too high can cause issues and seems to be counteracted by dopamine. Dopamine agonists are now being used for type 2 diabetes?

Estrogen dominance seems to be an issue in both men and women and can cause issues with regulating insulin/leptin.

In men low testosterone can reduce insulin sensitivity, so fixing this can help.

Im sure there are other different cycles that disrupt the insulin/leptin sensitivity, just a matter of finding the issues for the individual. Inflammation, nmda/glutamate, mitochondria, circadian rthym issues, adrenal fatigue etc. Many of us have more then 1 issue that needs fixing.

There seems to be fatty's and skinny's with cfs/me, i think for fatties like me losing weight could help fix alot of hormonal issues but have several of the above issues makes it alot harder then a typical person to lose and maintain their weigh. From my researching i think optimal dopamine can help fix several of the above issues and worth experimenting with.

I guess the body likes to be in balance and or bodies are screwed up especially hormonally??

Dr Kruse (again) says that fixing leptin resistance often fixes insulin resistance and that typical pharma interventions go about this all the wrong way and just make us lifelong consumers of such products.

I don't know why some of us gain and some of us can't gain. It doesn't make sense to me though there must be an explanation. I don't struggle with my weight at all (given a good diet and enjoyment of activity) when not ill. But I can't lose a pound when not in remission.

Here's another good article. I particularly like the title:

Dopamine: The Forgotten Felon in Type 2 Diabetes

http://www.eurekaselect.com/91165/article

 

[TigerLilea]

I get sooo hungry when tired, and tend to do binge eating.

I don't usually hear other people with CFS say this, but I have always had this problem. The more exhausted I am the more food I pack away in a day. It makes healthy eating very hard to do some times.

 

[MeSci]

Can you better explain what you mean with this?

I have noticed that for me, periods of exhaustion tend to come together with constant hunger (in contradiction with supposedly higher leptin levels) and decreased ability to maintain stable blood sugar (with the tendency for blood sugar to drop too low). In this state, exercise, ie. increased glucose consumption, can easily set off hypoglycemia. I just had it happen today: cleaning my room while just coming out of a three week period of exhaustion, plus a drink made of blended fruits was enough. Fortunately this is a mild thing for me, but it makes me wonder what exactly is going on in the body.

Excessive hunger is a PEM symptom for me. I theorise that it is something to do with a pH/gut floral imbalance. It was much worse before I started the leaky-gut diet. I suspect (but may be wrong) that the PEM includes effects of overgrowth of 'bad' gut bacteria/flora - perhaps sugar-loving/acid-producing ones - that somehow overstimulates appetite. Perhaps leptin and/or insulin are involved there. Someone should research this!

Now, even if the hunger involves a carb craving, I resist it and eat something healthier like nuts. At least that fills me up a bit and doesn't mess up the gut flora even more.

 

[MeSci]

Right for the resistance the African Mango would maybe help ?? I am about to buy it and give it a try

I don't know - sorry.

 

[heapsreal]

Can you better explain what you mean with this?

I have noticed that for me, periods of exhaustion tend to come together with constant hunger (in contradiction with supposedly higher leptin levels) and decreased ability to maintain stable blood sugar (with the tendency for blood sugar to drop too low). In this state, exercise, ie. increased glucose consumption, can easily set off hypoglycemia. I just had it happen today: cleaning my room while just coming out of a three week period of exhaustion, plus a drink made of blended fruits was enough. Fortunately this is a mild thing for me, but it makes me wonder what exactly is going on in the body.

If one Is insulin resistant then they are probably leptin resistant and similar treatments help both.

 

[SOC]

I don't usually hear other people with CFS say this, but I have always had this problem. The more exhausted I am the more food I pack away in a day. It makes healthy eating very hard to do some times.

I have a similar problem. When I'm exhausted and/or in PEM, I get REALLY hungry and am constantly fighting the desire to overeat on top of everything else. At one point, I tried eating (healthily, of course) when I was hungry on the theory that the hunger was a functional message from my body, but all I achieved was gaining weight. It never improved how I felt or shortened the PEM. So I'm back to eating a reasonable amount for my level of activity (not much) and resisting the hunger when I'm exhausted.

I also crave soft drinks when I'm unusually tired. My guess is my body is asking for sugar and caffeine to boost energy temporarily. I don't usually give in because there's always a payback later. Better to rest when I'm tired.

 

[heapsreal]

If i have a mung out and craving its generally at night for carbs. I put this down to maybe low serotonin as carbs/insulin are needed to help tryptophan convert to serotonin. Sometimes even after sleep meds i cant sleep and i eat some carbs and i then doze off. I will say that my diet is generally low in carbs and these carb cravings have declined with 5htp.

 

[rosie26]

I'm the opposite with PEM, the PEM inflammation triggers awful nausea in me and severe lack of appetite. All over body inflammation and weakness. The mouth feels more dry, takes effort to swallow as no desire to eat - exhaustion. When I am like this I use the Complan food replacement drinks. I also have noticed in these times that Lemonade fizzy drinks are excellent for hauling me slowly back up again. Otherwise I would languish a lot longer in these episodes. It's really unpleasant. I wish I was one of those who have an appetite in PEM as the weakness is just awful. Once I start improving again I eat and eat to try and make up.

A thought that just came to me and would be interesting to know - is how do others normally cope with stress - in some people it makes them eat more, in others it makes them not able to eat. I am just wondering if the physical symptoms of PEM have the same effect on people with ME. ?

Before ME, stress made me not want to eat. I have a ME friend who eats more when she is under stress.
I wonder if it is the same thing for physical illness stress. I am not talking about mental/emotional stress here. I am talking about the hard out effects of PEM, the physical toll (physical stress) it takes on the body.
Could this explain the opposite effects in an individual way.

Edit - I should add that D Ribose has helped lessen PEM a bit in the last 2 years ! It seems to decrease inflammation and made my PEM a bit less horrid. So grateful for wee bits!

 

[heapsreal]

The recent cfs thingy kamaroff video mentions dopamine down regulation in cfsme. I guess this is tied into the whole leptin issue.

 

[Nielk]

The recent cfs thingy kamaroff video mentions dopamine down regulation in cfsme. I guess this is tied into the whole leptin issue.

How?

 

[heapsreal]

How?

Dopamine seems to Improve insulin sensitivity and the drug cycloset is used for this as well as some antiaging doctors to improve leptin. Dopamine seems to also have an antagonistic effect on nmda/glutamate which can help lower inflammation which can also have a negative effect on insulin/leptin sensitivity.

Another thing that is mentioned about dopamine/cycloset is that if taken in the morning can help correct circadian rhythm issues which are also known to worsen insulin and leptin sensitivity. Probably the reason why shift workers are more prone to diabetes than non shift workers.

There seems to be cycles within cycles between hormones and neurotransmitters etc.

 

[MeSci]

I'm the opposite with PEM, the PEM inflammation triggers awful nausea in me and severe lack of appetite. All over body inflammation and weakness. The mouth feels more dry, takes effort to swallow as no desire to eat - exhaustion. When I am like this I use the Complan food replacement drinks. I also have noticed in these times that Lemonade fizzy drinks are excellent for hauling me slowly back up again. Otherwise I would languish a lot longer in these episodes. It's really unpleasant. I wish I was one of those who have an appetite in PEM as the weakness is just awful. Once I start improving again I eat and eat to try and make up.

A thought that just came to me and would be interesting to know - is how do others normally cope with stress - in some people it makes them eat more, in others it makes them not able to eat. I am just wondering if the physical symptoms of PEM have the same effect on people with ME. ?

Before ME, stress made me not want to eat. I have a ME friend who eats more when she is under stress.
I wonder if it is the same thing for physical illness stress. I am not talking about mental/emotional stress here. I am talking about the hard out effects of PEM, the physical toll (physical stress) it takes on the body.
Could this explain the opposite effects in an individual way.

Edit - I should add that D Ribose has helped lessen PEM a bit in the last 2 years ! It seems to decrease inflammation and made my PEM a bit less horrid. So grateful for wee bits!

I couldn't tolerate d-ribose - it made me horribly wired, hot and cold at the same time, and I felt as though I had a war going on inside me. Erica Verrillo quotes an ME researcher in her excellent e-book to the effect that a high proportion of people can't tolerate it.

But I do get nausea and loss of appetite when my PEM is bad. When it is mild I get more hungry; when it is moderate I get urgent hunger which progresses to nausea if I don't eat quickly. At the beginning, when I had no idea what was wrong, I progressed to retching and then vomiting every day, which was horrendous. I was exerting a hell of a lot then.

I hadn't thought before about the different effects on appetite depending on PEM severity. Interesting. Someone really should be doing detailed biochemical profiles of people before, during and after exertion. Then we would have a much better idea what is going on. It should be very revealing, and help us to avoid these effects.

Dry mouth I can relate to as well - also dry throat, so that uncoated tablets can be extremely hard to swallow at such times. This is another PEM symptom for me.

 

[rosie26]

@MeSci

Leptin is interesting. It explains the mystery of why I can't seem to put on weight over 60kg and keep it. And to think that it also is one of the many triggers of ME deterioration for me when I get near to 60kg I start getting deterioration symptoms and down I go again and I lose the weight I have gained. It certainly has kept me lean all throughout these 12 years. So if I am understanding correctly I must be *sensitive* to Leptin because it is controlling my weight quite strongly. And those who can't seem to lose weight are *resistant* to Leptin. ?

I used to think that the deterioration I experienced when my weight rose close to 60kg was caused by the extra exertion of having to carry around a bit more weight.

I am experiencing signs at the moment, of deterioration and it would be interesting to see what my weight is at moment. I haven't got any scales in the house but I will weight myself at a friends just down the road on Friday - if I make it there.

 

[rosie26]

Could potential leptin resistance explain an increased appetite? I am always hungry. I have tried paleo but was even more hungry so just try and eat with a balance of carbs, protein and a bit of fat with each meal. The constant hunger and being bedridden is piling on the weight

I would think it probably is what is making you hungry if you have leptin resistance. From what I have read about leptin it makes one feel satisfied, not hungry. So if you are resistant you don't get the signaling of feeling like you have eaten enough. Perhaps it is not as simple as this but hopefully someone who understands leptin more could explain.

 

[Nielk]

I don't understand what the connection is between leptin and ME/CFS. Certainly not everyone who has such a problem with leptin, develops ME/CFS?

 

[heapsreal]

ielk, post: 448532, member: 218"]I don't understand what the connection is between leptin and ME/CFS. Certainly not everyone who has such a problem with leptin, develops ME/CFS?[/quote]
I think It might have more to do with us aging quicker then healthy subjects and also the dysfunctional hormones we have so get many of these issues earlier in life the suppose to? This was mentioned in kamoroffs recent address of the cfsme meetings?????

 

[MeSci]

@MeSci

Leptin is interesting. It explains the mystery of why I can't seem to put on weight over 60kg and keep it. And to think that it also is one of the many triggers of ME deterioration for me when I get near to 60kg I start getting deterioration symptoms and down I go again and I lose the weight I have gained. It certainly has kept me lean all throughout these 12 years. So if I am understanding correctly I must be *sensitive* to Leptin because it is controlling my weight quite strongly. And those who can't seem to lose weight are *resistant* to Leptin. ?

Seems logical, but probably not the case in all people.