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)...

I'm seconding the Dietdoctor recommendation.

I also wonder who exactly you are counting your calories as 2000kcal/week longterm are not really compatible with life!

If you have had lots of conventional test carried and they are all normal, you are unlikely to have any kind of disorder. Having said that, there is fascinating research being carried out about the genetics of appetite/satiety and HOW we use whatever we eat.

If you have been eating the way your are describing for years and have not lost weight, you need to change your appropach. DietDoctor or some version of LCHF might be worth trying.

What is an average day? I can't even imagine

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.

There may be more calories in your alcohol than your entire food intake. I am surprised anyone can survive on 100 cals a day. What is a typical days food.

What are you eating thats 100kcal a day?

I dont understand how your bloods can come back normal because you must be deficient in nutrients. I dont understand how your body is functioning on that, even if you have some disorder that makes you gain weight theres no way realistically that could power your heart/brain. How can you have a normal ecg? How can you have normal obs?

I think an endocrinologist is your best bet, they might be able to refer you on to someone else if they come up with nothing

How much alcohol are you drinking?

What is a typical day's food?

Also can you read what the researxh doctor has published? Might give some ideas?

Have you had blood tests recently, are they always normal. Where are you getting vitamins, protein, carbohydrates and minerals from to sustain a healthy balance. There is no goodness in alcohol only sugar. How much alcohol do you drink, is it very strong.

Can you describe a typical week of what you eat and drink OP? Including the alcohol?

How are you not suffering from a deficiency if you are eating so little?

What do you eat in a day?

How much amitriptyline are you on?

Okay, definitely sounds like something strange is going on.

When you say you look like a house, how much weight did you actually put on after eating 1200 calories a day? Not to be nasty but if there isn’t a medical reason behind this, I wonder if there could be body dysmorphia at play. Maybe you think you’re bigger than you actually are etc.

I’m really short and can eat 1200 calories a day without gaining weight or exercising (maintenance calories), so if someone is taller than me it seems unusual that they would gain.

If not I highly recommend starting a journal? I think it would be useful to log what you eat/drink per day and daily/weekly weigh ins so you can show your GP evidence, if they haven’t been taking you seriously. Perhaps take photos too.

I’m surprised your GP hasn’t tested you for common deficiencies if they’re aware of how restrictive your diet is

Not much to add to the weight dilemma I'm afraid, but just because a Doctor wrote a paper on diet/metabolism they are probably not a medical Dr, but more likely a research doctor and maybe work in a university doing researcher.

There's a site called, I think, about thyroid with a patient avocate Mary Shomon. There's a section with recommended doctors. Gordon Skinner was one, but think he's died.

I've got, finally, a brilliant endocrinologist but unfortunately she's in Limoges.

Avoid Christie's- the bloke didn't even have the courtesy to look at me during the consultation just kept his head down, scribbling.

There's a book called Thyroid Power written by a Dr and his wife that has a detailed screening questionnaire for auto-immune disorders.

Good luck

Alcohol doesn't count .

You need to post what you're actually eating here. I'm sorry but I don't believe it's possibly for any adult to eat 100-200 calories a day and not be dead in a few months.

You do know calories are actually Kilocalories don't you?

I'm struggling to think what is 100 calories, even most tins of soup are over that. Cup of broth? Carrot sticks?

A glass of wine has over that.

You're eating the equivalent of less than a dry slice of toast every day and not losing weight? How do you not have extreme muscle wastage and malnutrition??

I get it OP I do - I have a v low metabolism and maintain an oversight BMI on around 1200 calories a day. Any more and I'll shoot into obese. But 100 calories a day? I can't begin to imagine.

I would pay to get your resting metabolic rate measured. Have a Google. I found one but in London.

How much do you weigh OP?

Op you need to post what your actually consuming

The average apple is 80 calories. 100g skinless chicken breast is 100 calories. A medium egg is around 65 calories. Must be boring as hell only eating 100 calories a day.

What specifically are you eating each day OP? Can you provide an example?

What do you mean alchohol doesn't count? You could be eating 1500 calories a day from booze and 200 on food! Alchohol is the most calorific thing apart from fat

Yes of course I do titchy. On a 100 calorie day I might eat 2 packets of seaweed thins (22 calories each) 3 Marks and Spencer low calorie butterscotch sweets (8kcal each) and then make the rest up out of raw mushrooms, small carrots and baby tomatoes, depending on what I feel like on the day. You can't have very many but you can have two or three. There is some research that has suggested that many people don't gain weight from alcohol in the same way they do from food but from talking to a lot of people it seems that this is indeed true for some but not for others.

I feel absolutely fine - I don't feel in any way unwell other than the psychological impact of this all. I take vitamins but I am obviously very worried about the lack of nutrients. I eat a lot of veg on my higher calorie days. I was anorexic in my teens although only because it was the only way to get to a healthy weight (I got called curvy even though my periods stopped for several years although I was curvy in a slim way iyswim). I ate 500 calories a day then, so more than most days now, and I was hungry all the time. I don't know why I rarely feel hungry now only that it's been like that since I started on the amitriptyline. Most people seem to find it makes them hungrier though so I'm unusual in that way.

I've been talking with all sorts of people online and corresponding with a few doctors and one did tell me that she has patients who can actually gain weight eating less than 600 calories a day. So it is possible and there are documented cases. There are also disorders where babies put on vast amounts of weight despite drinking no more breast milk than any other babies and they obviously aren't sneaking biscuits from the cupboards as one person who had this condition pointed out. There are conditions that seem to defy explanation and there always have been.