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)...

was anorexic in my teens although only because it was the only way to get to a healthy weight

See this makes me further think it could be a mental thing, sorry. Your view of healthy might still be skewed.

At this moment in time are you actually considered overweight for your height or not? What’s your BMI?

Op call Bupa and some private hospitals. Try the London bridge clinic and the London clinic and see if they can help. This sounds extreme and awful. Just Google and ring round until you find the right type of consultant. Unless an obesity / endo expert happens to come across this thread I'm not sure anyone can help if what you're saying is true.

You could always have blood tests in Scotland results can be sent elsewhere and telephone or video consultations can be done

I'm pretty sure it's not a thyroid thing. Thyroid tests always come back fine but one doctor did agree to try me on thyroid meds on the off chance they would help. They didn't do anything though.

I've had my RMR measured Sofa and Shirley and they said it was 1200 calories a day. That was what lead me to start eating at that level for a few years but I was sceptical and thought I'd gain weight and I did. I gained 3.5 stone (went from 10 stone to 13.5 stone and it has taken me years and years to get down to 12 again), with 1 stone going on in the first week despite increasing gradually as I felt ill eating more to begin with. I would be ok with this weight if it was associated with a healthy diet but it isn't and I also can't lose it without a herculean effort which is a huge problem as it means I can never really have a day off and just eat three meals. Although I'd love to.

You haven’t posted what you weigh. Who says you need to lose 2 stone? Is this based on your BMI or how you feel about yourself?

Do you have kids? Do they see you eating 100 calories a day?

So you'll drink nothing but water, have two packs of seaweed thins, 3 butterscotch sweets and 1.5 cherry tomatoes. And you can sustain that every day for weeks?

Not buying it sorry. I think you make up the calories elsewhere. Maybe you forget. Maybe you're drinking half a bottle of wine a day.

Hairthrowaway - yes, I'm 5t 4 and 12 stone so 2 stone overweight by the NHS calculator although some calculators are more liberal. I'd be ok at this weight if it were possible to lose easily but it isn't so I feel I can't risk pregnancy despite really wanting children. I wasn't anorexic because I wanted to be skinny. I just wanted to be slim and healthy looking and it took near starvation to achieve that for me. Although weirdly that near starvation diet is no longer leading to near starvation.

Sorry, but I'm calling bullsh*t. This can't possibly be true. If it is we could solve world hunger.

ChubbyPigeon yes, I have read a lot of it but she deals with the most common rare obesity diseases and most involve overeating due to ravenous appetite that is often there from birth. Parents report having to lock food up or their children breaking into their neighbours houses to steal food they feel so desperate for it. This isn't what I have obviously given my lack of appetite but I have read a few case studies with similarities in that even in children whose parents are able to control their food and restrict their calories severely, they remain overweight, even when exercising a lot. Again though most have this since birth but I was normal until I was 9 or so. I don't know what happened then.

Your diet is not giving your body any protein, minerals or carbohydrates, have you been referred to a dietitian. Do you think it would help to keep a honest and accurate food diary. Do you think your blood results would be normal if you had them done. Could you be retaining fluids and albumin that might seem like weight gain.

How much are you drinking op?

How do you not have extreme muscle wastage and malnutrition?? I don't know!!! None of it makes sense!

What's weird though, from the reading I've done, is that most doctors don't seem to believe in the concept of weight loss resistance but most sports scientists and personal trainers do. Most sports scientists seem to have plenty of examples of clients cutting and cutting and cutting while increasing their exercise but seeing no results. I think the difference is that most people don't cut as far as I have. I do have pretty strong will power and it may be that the fact that my medication is making me not feel hungry is making it easier for me to achieve, if achieve is the right word.

The NHS BMI calculator has 66kg as within the normal range for someone 5'4" tall. That's 10 stone 6lb. I know because I am that height and have lost a stone and a half this year.

@wowfudge

The NHS BMI calculator has 66kg as within the normal range for someone 5'4" tall. That's 10 stone 6lb. I know because I am that height and have lost a stone and a half this year.

I'm that height and 1kg less, I was 80kgs last Xmas!

Thank you Sofasogood1 - I'll give them a try although I've already seen a few BUPA doctors and endocrinologists in Scotland. One actually seemed to believe me (he was nearing retirement and implied he wouldn't have believed me had I come to him in his younger years but also implied he'd seen enough medical mysteries over the years that had been backed up by measurable results to realise that all sorts of weird things are possible.

Instead on focusing on losing weight or reading up about weight loss resistance I would be asking for a nutritional assessment. Your current eating plan is very poor and you shouldnt need to be taking vitamins. What is your idea of a healthy diet? Its not usually alcohol, a few raw veg and sugar free sweets.

I agree with that. It does sound as though you have a metabolic problem; it may not be anything serious and perhaps a small adjustment would make a big difference.

For a start, look at what you do eat regularly and what it is made of. Sometimes completely cutting out wheat products results in a good and steady weight loss after which it can be reintroduced but not regularly. That's just an example, it could be anything.

www.topdoctors.co.uk/doctor/endocrinology-diabetes-metabolism/obesity/

Ok so on a typical day you eat:

• 2 packs seaweed thins
• 3 butterscotch sweets
• vegetables - how much by weight?
• alcohol - how much and what kind? 2 vodka and slimline tonics will be different from two 250ml large glasses of wine

I came across the term "metabolic damage" which seems to be a newish area of research according to this article

4afsfit.com/metabolic-damage-part-1/

Interestingly it says that tests results always come back normal hence doctors concluding that their patients are lying. This seems to think you can cure it by gradually increasing calories in a very controlled way but I just don't really trust it to be true. I've tried other fixes based on eating more and the only result has been rapid weight gain.

@InDeoEstMeaFiducia - I was 79kg. I'm still not quite in the healthy BMI range, but I feel and look so much better now. I'm starting another gym weight loss programme at the weekend - really looking forward to it. I've eaten more than I had for ages since I joined the gym and lost weight.

Xiaoxiong - I might eat 2 or 3 raw mushrooms (medium to large) or 2 or 3 carrots or 5 mini tomatoes.

I drink gin and wine only but as I've said it doesn't have any impact on my weight at all. I've cut it out completely on 3 occasions for a month at a time when doing egg freezing and my weight remained the same despite my diet remaining the same. I've cut it out on an experimental basis when I was younger too although only for a week or two at a time and not changing my diet. I never lose any weight from eliminating it and never gain any weight when I add it back in. Interestingly a nutritionist I did see said the only nutrient I wasn't deficient in (this was based on food diaries iirc, and wasn't an actual blood test) was something that is found in white wine!

Good for you wowfudge - wish the gym worked for me. I've done up to 9 hours of aerobic exercise a week in the past but it never does anything and when I stop there's no effect either.

Since you have tried so many things and they haven’t worked out have you considered looking for a specialist abroad? The problem in the U.K. appears to be that if it is not life threatening or causing accute pain then you don’t really get the commitment to addressing the issue. Perhaps Greece or the US? Obviously the majority of consultations over the phone and a visit for testing. Not ideal but since you are struggling getting anywhere here...

I'm on 100mg amitriptyline wowfudge

Yes, RoseTintedAtuin, I'm very much open to a foreign specialist. I'm hoping the geneticist I'm talking to in this clinic might be able to help too but I'm not sure how much she can do if we don't find an actual genetic problem or if we do but it's not treatable. I have to believe that some test somewhere will throw something up though if we can just do ones that aren't routinely done.

None of this adds up, sorry.

I doubt that there is a significant physical illness being missed here.