How do I go about finding the right specialist(s) to help?

[pleasebringmeluck]

There's something very wrong with my metabolism and I'm desperately trying to work out what it is and find a solution.

Essentially I am eating less than 2000 calories a week and am still 2 stone overweight. I cannot lose weight unless I eat 100 calories a day or less. If I eat 200 calories a day for months on end the fat remains. So I'm terrified of food because any weight I put on is close to impossible to lose and as you can imagine I gain weight pretty easily. I can gain up to a stone in a week just by eating what most people would consider a healthy diet. So I have stopped with the healthy diet. The consequences were too unhealthy and I'm back to eating like a mouse again.

I inherited some money a few years ago and have spent very little of it. I would like to use it to try to solve this problem once and for all (I have been seeing NHS doctors for years but most of them very clearly do not believe me and those who do or at least behave as if they do say they cannot help as all the tests always come back saying nothing's wrong.

I found a doctor who deals with rare obesity disorders and was really hoping she'd be able to help as she has experience of others like me who are barely eating but are nevertheless fat but it turns out she is mostly a research doctor and doesn't really do consultations. She is also very busy it seems so I don't want to write to her too often (I've already written twice).

Does anyone know how I might go about finding a top notch specialist doctor who would just stick with me. Who wouldn't give up after the standard tests came back showing nothing but would be like a health detective and keep trying to find a solution with me and trying new things? Or a scientist who might like to study me?

Does anyone attend obesity conferences or events? Who are the big names who are revered in the medical and scientific communities when it comes to this kind of thing (weight loss resistance or any kind of weight issue at all)? Could anyone give me any names as a starting point?

I am already in touch with a geneticist who I believe is very good but I'm wondering if there are others working in other fields who might be able to add something else (also open to hearing about other geneticists)...

Loads of people have reported the thread. And yet here it still is, encouraging people with disordered eating. In this case pointing out that what the OP describes is simply not possible (due to basic laws of physics), is the responsible thing to do whatever the rules on troll hunting.

Agree 100% @Climbingallthetrees

I'm amazed this thread is still standing, despite the reports. It's completely irresponsible.

@pleasebringmeluck

I tend to eat 100 calories a day 4 or 5 days a week and just eat a bit more on the days I'm drinking. I don't count calories from alcohol though as they don't seem to count for me. Which is the only reason I'm still sane. I am also never really hungry since starting the amitriptyline. I can eat 100 calories a day for 4 days in a row and not really feel much hunger beyond the psychological desire for the pleasure of eating.

You really have to count all calories from everything including alcohol or sauces or your squash etc to get a full picture of the calories you are consuming. A doctor to help you needs the entire full story. You can't say I'm eating 2000 calories a week and then later add another amount on top from the things you don't count because it will put them back to square one again.

At the very basic level a calorie is a calorie no matter where it comes from.
10 calories from lettuce is the same as 10 calories from bacon is the same as 10 calories from wine.

It's the other elements like processing or vitamins or fat etc that put food in separate "categories" so it's not as simple as only eat 1mars bar because it's the same calories in a huge salad for health obviously. But if you are only talking about calories separately from the other components of the things you ingest they all need to be counted.

Morning, OP,

This sounds pretty niche so we're going to move it over to our health boards for you in hopes someone there might have some advice.

@HebeMumsnet

Is this a joke?! That's an irresponsible thing to do. I have reported this post again.

Thank you NetStaller - I'll check out Dr John Stevens!

And thank you so much Mumsnet for not writing me off or telling me I'm either lying or mentally ill.

I'm going to bow out now as I wanted advice on medical specialists and I've got a few leads to follow - thank you so much to those who have believed me and helped. I'm also talking to a few doctors and researchers who also believe me as they've had other patients like me or have experienced something similar themselves.

To those of you who have decided I have some sort of psychiatric problem because you don't believe what I've told you is possible, I'd encourage you to either do more reading or just leave the topic alone. There's a decent amount of research showing that extreme weight loss resistance is perfectly possible if you're not blessed with the right biology and that alcohol calories do not produce the same effects as food calories for some people in some situations. Simply insisting that this isn't the case alongside a sceptical face emoji doesn't negate these scientific findings.

And just because some of you are so absolutely desperate to know how much alcohol I drink, at the moment it's the equivalent of one bottle of wine a week (although made up of some gin and some wine). But it's been at all sorts of levels at different times in my life. Sometimes vastly more, sometimes vastly less. It never makes any difference to my weight one way or the other.

And just to address one specific point from Ginkypig - who said

"A doctor to help you needs the entire full story. You can't say I'm eating 2000 calories a week and then later add another amount on top from the things you don't count because it will put them back to square one again."

Yes, I fully agree, which is why I've provided the doctors I've seen with a full written explanation of my calorie consumption, giving one total with alcohol and one without, explaining that I believe the one without to be more significant given alcohol doesn't affect my weight. In every case they just run some blood tests and tell me they can't help, hence this thread! But I have some new names and some new studies going forward so I have hope once again, if nothing else! Thank you once again to everyone who's believed me and helped!

I'm glad your doctors are getting the full complete picture please, it is imperative for whomever you are working with so they can work out what treatments may have an impact.

I can't offer better advice because I'm not an expert but I wanted you to get the best help!

There's a decent amount of research showing that extreme weight loss resistance is perfectly possible if you're not blessed with the right biology and that alcohol calories do not produce the same effects as food calories for some people in some situations. Simply insisting that this isn't the case alongside a sceptical face emoji doesn't negate these scientific findings.

Please can you point me to some of these papers? I am a scientist and am curious to read about the nature of these studies, not so much their findings (I don't disbelieve what you are saying) but whether they were peer reviewed, whether the findings are statistically significant, who they were funded by etc.

It's not about disbelieving you. Taking everything you say as gospel truth you're still choosing to exist on seaweed, sweeteners and alcohol rather than eat normally and put on some weight. That fear of weight gain has led you to make an insanely unhealthy and dangerous choice regarding your diet and alcohol intake. It is disordered to make the choices you have.

As Broomfondle said, this is not about disbelieving that what your are describing is your reality.

I would also be interested in some links to the research you are aware of.
Most people I deal with and who are struggling to lose or maintain a healthy weight have an unrealistic picture of how much/what they need to eat to have a healthy balanced diet.
What you are describing is not possible as others have pointed out better than I can.

What’s your blood sugar like? Am assuming you’ve had all that tested a lot.

How much sugar free squash are you having - not saying it could account for this level of weight gain/retention of course but apparently sweeteners can mess up your insulin response somehow.

I really hope you get the answers you need. 💐

Hrtft but - DP is a GP and he said look into faecal transfer. Sounds revolting but apparently they do it in capsule form.

www.bbc.co.uk/iplayer/episodes/m000m7ll/the-diagnosis-detectives