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)...

Amitriptyline does not mix well with alcohol, can cause weight gain or loss and interacts with some vitamins. Some of your weight will be body fluid, in what way do you believe you are retaining fluid. Do you have any swelling or puffiness anywhere.

If you put a stone on in a week there's no way it could be body fat in that time on those calories. There's got to be something else going on.

Climbingallthetrees it is definitely possible. It has been my life for almost 20 years now and there are documented medical conditions where extreme calorie restriction does not lead to any significant weight loss. I may have one of these or I may have something rarer or something that hasn't been discovered yet. But all sorts of things that were once thought impossible turned out not to be so when they were fully understood. My parents can vouch for my low intake as I lived with them in the early years that this was happening. My mum, who was a HCP, actually started coming with me to appointments and writing letters saying she had witnessed the calorie restriction after a number of doctors told me I was making it up.

I'm not eating when asleep. No food is every missing. My sleep disorder has never been diagnosed but I think it's a combination of insomnia and something called DSPS.

Can I just comment that being afraid of pregnancy may not be necessary - I was very aware that my metabolic rate increased during both my pregnancies (eg my husband usually is the one who needs to throw the quilt off the bed, that reversed). You might just be able to "reset" things somewhat if you do get pregnant. Though I absolutely agree you need to know that you can look after your health first if at all possible.

My metabolism is definitely carbohydrate sensitive (and my mother's even more so). I wonder what happens if you swap the crackers (and the alcohol) for an egg or chicken or something. Have you ever tried low carb / high fat?

No useful suggestions of where to look for help though, sorry.

What does your weight stabilise at on 1200 calories a day?

Ilovesausages I'm 38.

wowfudge I don't gain on the really low calorie days, I mean I gain if I eat over 1200 calories a day. It's definitely fat or at least mostly fat. I can see it and pinch it. The rolls get bigger!

CarelessSquid - thank you! I'll look at that test! I'm definitely not in any sort of anorexic mindset. I just don't want to get morbidly obese and it's a constant battle not to. I became anorexic originally simply because I was obese on a relatively low calorie diet to begin with and to get to a healthy weight I had to stop eating almost completely. I was the same size and weight as all of my friends who were all eating like horses!

Scotland - go to London for a medical trip.
I do it all the trip.
Worlds apart.

Time !

pythonesque I've heard of that - my mum had a friend who said pregnancy reset her metabolism completely and she's been able to eat whatever she wanted to since then but I don't think that happens to most people and I don't feel I can take the risk.

The seaweed thins aren't crackers - they're just flat pieces of dried seaweed. Bloody delicious actually and remarkably satisfying. Discovering them and the m+s 8 kcal sweets have brought some joy to my life! So I'm pretty much no carbs most of the time anyway but do eat wholemeal pita bread on my higher calorie days.

To any doubters here's the account of someone else with a rare obesity disorder - www.goos.org.uk/patients-and-families/personal-experiences/269-a-new-era.

She doesn't eat as little as me by the sounds of things but then she sounds as if she's much bigger while still eating very little. I don't know if I've got exactly the same thing but my hunch is I'd be her size if I ate what she is eating which is around the 1000kcal a day mark or less.

How/where did you get your BMR measured & what did it involve?

I got my RMR measured on the NHS although I can't remember what unit/department. I think I was lying down, maybe not completely flat and had a plastic helmet thing on or something. This was about 10 years ago though so I'm a bit hazy on the details. It might be worth getting it done again.

Marpan - I would! I need to find the right doctors though! And presumably just have to hope that any appointments I might book will get cancelled if we go into lockdown again!

It doesn't really fit for you. The onset at 9 really precludes genetic problems like that one.

It's more likely you have a hormone over/under production.

Although the sleep thing is interesting, have you ever tried working with your natural rhythm?

Working nights can make a massive difference to sleep disorders with dsps elements.

Cushing's is coming to mind although normally you'd have reached crisis point by now. Again it's rare enough in the UK some docs dont think of it.

Do you have patches of different skin in folds? Like darker or different feeling patches in your armpits elbow creases or neck folds?

Terrible reference I know but try watching an episode of House called Heavy if you can.

I appreciate its fictional drama but it has some medical facts.

That's what I thought CarelessSquid but there do seem to be some genetic conditions that don't manifest immediately. I came across one in my reading and it didn't fit me that well but it did make me think that I shouldn't rule anything genetic out. But the hormone thing sounds more plausible. I've had hormone tests done on the NHS multiple times. The problem is that I don't have a science background so I just have to take their word for it when they say they're comprehensive and everything comes back normal. I know that normal ranges can vary quite widely between countries and different countries test for different things which makes me think there probably is plenty to explore if I could find the right doctor with the right mindset.

I've looked into Cushings before and there are definitely parts of it that sound a bit like me but other parts that aren't. I could definitely ask a private doctor to do more tests.

I just found House/Heavy online - I'll go and watch it now!

Do you ever binge eat?

I dont think you should even be thinking about losing weight

100kcal a day is not going to contain enough protein, vitamins and minerals, it womt even contain enough carbs to fuel the brain. Theres no way a nutritionist has looked at a food diary of 100kcal a day and said the only thing you are deficient in is a nutrient found in white wine.

It is better to be overweight and eating some form of nutrients than a healthy weight but deficient in everything

Your body cannot magic up vitamins/minerals if you arent eating them they arent there. So you will have massive nutritional deficiencies and before investigating anything to do with your metabolism you need to go to your GP and get those looked at, the consequences could be really serious.

With the diet your body must be getting fuel from somewhere, its feasible you could have a slower metabolism than others but simple bodily functions take up calories, it is basic biology. Your body uses glucose to make energy, and it needs to come from somewhere - either food or your bodily fat. 200kcal is not going to provide enough energy for even a completely fucked up metabolism.

So either you are eating more than you think/telling us

Or

Your body is being fueled entirely by alcohol

Just for reference itsu seaweed thins contain 1.4g of protein per 24kcal serving

The average woman needs 46g of protein

So you are eating 2.5%of your daily protein allowance

Severe malnutrition can cause severe oedema, I am wondering if you have oedema rather than body fat? You will be severely malnourished

I must admit the right doctor is tricky. I was lucky my family doctor had known me since I was a couple of months old and agreed quickly things weren't right even though his tests were fine.

He referred me to the Endocrine specialist on the strength of a family history of diabetes even though it wasnt what I was presenting with.

The first specialist I saw was awful and at 19 I just didnt feel good about asking questions or explaining myself at all. I came out with a diagnosis and an awful lot of terror!

These days I go in with a notebook of questions and take notes.

I would suggest a phone appointment with your gp where you ask them to detail to you what they've ruled out and why, do the same with any specialists that you've seen and compile the list.Then you can work out where to go from there.

Get the thrive tests done yourself as well so you've got extra data. Ditch the nutritionist, good ones are wonderful but most are not and yours does not sound good.

I wouldnt necessarily go private yet but would suggest more referrals. Dont know if Scotland offer the option to choose where you're referred to?

What you are saying is just not physically possible.

Animals need energy in the form of food for all biological processes and mammals also convert a fair proportion of them into heat.

Unless you are miraculously breaking the laws of Physics (conservation of energy) you will be needing at least 1,200 calories per day for the basic biological processes, and that is a bare minimum.

So you are either kidding us or kidding yourself. How much do you drink? And calories in drink ‘count’ just the same as every other calorie.

Thanks newtb but I'm pretty sure it isn't a thyroid thing. But wouldn't rule anything out completely.

Thanks newtb - I don't think it's a thyroid issue but I won't rule anything out just yet.

What does your weight stabilise at on 1200 calories a day?

It stabilised at 11 stone for quite a while but then I would just have these bursts of weight gain, which lead to putting on a further 2.5 stone over a few years.

Ok so you are drinking gin and wine but how much? A bottle of wine is over 600 calories so it's definitely not nothing. Also, alcohol fucks with my sleep horribly even when not on any medication so there could be a link there for you.

I know we are all going on at you asking about how much you are drinking, but Occam's razor says that it's more likely that you are consuming more calories than you think, rather than your body breaching the first law of thermodynamics on a daily basis.

Ilovesausages no, not really, unless you consider 1200 a day binge eating - it feels like that to me but it wouldn't be to a normal person.

Chubbypigeon - they said the only thing I WASN'T deficient in was a nutrient found in wine. I'm more than aware this isn't healthy. That's why I've been trying to solve it for almost 25 years but I just get fobbed off by every doctor who doesn't seem to think it's that big a deal (or they just don't believe me).

And you might be right from a nutrition point of view but from a mental health point of view I can't cope with the nastiness and lack of respect that comes with being seriously overweight. I'm not someone who carries extra weight well. Some people can be bigger and look great but I'm not one of them. My mental health is immeasurably better eating less but obviously I want to find a solution that doesn't force me to choose.

Technological advances mean we can now carry out the same processes on vastly less energy. Don't you think that a similar thing could happen in the body? Some bodies are evolving to become more energy efficient. I'm just at the very extreme end. I'm not being fuelled entirely by alcohol because I've cut it out before and nothing happens.

Pretty sure it isn't oedema - I have it on my stomach, things, arms etc and it looks just like fat. Does oedema look like fat on your stomach?

I think I really want to just abandon the NHS altogether to be honest. I just want to start again with an expert and get all new tests but if I do anything on the NHS again I will try to take a notebook. There isn't usually much to note down. You usually just get told "nothing wrong!" in a cheery voice.