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Original poster

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

163 replies

pleasebringmeluck · 13/08/2020 07:14

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)...

OP posts:
Original poster
pleasebringmeluck · 13/08/2020 23:35

Binterested - do you know how much your mum is eating?

OP posts:
Original poster
pleasebringmeluck · 13/08/2020 23:39

Xiaoxiong - it's more likely to you but I am me and I have been me for 20 years and I know for a fact I am not consuming more calories than I think. Why don't you believe me when I say I have cut out alcohol completely for extended periods of time and nothing happens? And that nothing happens when I add it back again. I have done this experiment 3 times recently for a month and maybe 5 or 6 times for a week or two at a time in my teens and twenties. I am getting energy. My body is just very very efficient at using it.

I have had the sleeping disorder since birth. While all the other babies in the maternity ward slept round the clock I just lay there with my eyes open the whole time. This was not caused by alcohol!

OP posts:
Xiaoxiong · 13/08/2020 23:41

I wonder if as preparation for going back to the GP and demanding to be taken seriously you should have someone follow you around for a couple of weeks and weigh and log everything that goes in your mouth. And I mean everything, food, booze, water, the lot. Then you will have some significant ammunition to demand a consultation with a specialist because if what you say is true you are going to have a lot of medics (and physicists, to be honest) very interested indeed.

Original poster
pleasebringmeluck · 13/08/2020 23:47

Larrygrylls - have you read any of the links I've posted? Not only is what I'm saying physically possible because it has been my life for 25 odd years but there are many others like me who eat less than 2100 calories a day and are not slim. There are doctors who treat these people and have identified illnesses that can cause this. No breaking of the laws of physics is necessary, we already know that people vary hugely in how much energy they burn and need and I am simply at the very extreme end of the scale. And read the science on alcohol calories. There's plenty of evidence to show that many of us simply are not affected from alcohol calories in the same way as food calories. This has been observed by scientists. See the NYT article I used a quote from for one such study but there are many more.

OP posts:
CarelessSquid07A · 13/08/2020 23:47

The problem with starting again is that you dont have a direction to start with really.

I'd say if you had the money go for America and pay for a specialist at the mayo clinic.

Because of the larger population as well as larger people generally (no offense intended) the Americans have more experience with endocrinology in general.

Original poster
pleasebringmeluck · 13/08/2020 23:50

Xiaoxiong - yes, I would be interested in doing something like that. I would love them to learn something. My parents can attest to my diet in my younger years and various boyfriends could attest to it in more recent years although I've never spent more than 4 or 5 days with any of them as I've never lived with any of them. I lived with my parents for 17 years though full time and then in summer holidays for 3 or 4 more years.

OP posts:
Original poster
pleasebringmeluck · 13/08/2020 23:58

Carelesssquid - I've heard of the Mayo clinic plenty of times over the years but didn't know anything about it until I googled it now so thanks for the suggestion. It looks like somewhere that might just have the right people in all in one place.

OP posts:
Xiaoxiong · 14/08/2020 00:13

I'm not disbelieving that when you say you cut alcohol out you don't lose weight. I'm just asking how much you are drinking, and what (you have already said gin and wine).

A lot of people have asked the same, not because we're assholes on the internet but because we're trying to help you make sense of what's going on to try and support your search for a specialist.

EarringsandLipstick · 14/08/2020 00:15

This thread is insane and highly irresponsible.

OP, what you describe is not possible.

I hope you might be able to access some help. I'm reporting this in the meantime.

Broomfondle · 14/08/2020 00:30

My opinion?
You don't need to travel the globe for some specialist in super rare metabolic disorders.
You need help for your eating disorder and alcohol use.
You are choosing the physical destruction of a highly restrictive diet and avoiding pregnancy over the fear of gaining weight.
You have said the only way you can stay sane/feel joy is with regular alcohol consumption.
Your body does not defy the law of physics. If you eat something that weighs 5g it is physically impossible for you to put on more than 5g. You can't create matter.
You probably need professional help to increase your calories, deal with the weight gain that comes with it, ease your disordered habits and thoughts around food and alcohol and then address a long-term, sustainable way of living on the other side of that.
I also think if you're going down a specialist route it should be for your sleep disorder and the only condition that needs ruling out for your weight is something like lipoedema.

I'd you need to gain a few stone and give up alcohol to eat some kind of a normal diet then do it. Do it with whatever support you need but carrying on as you are while looking for some reality-defying theory to justify it is not healthy, physically or mentally.

I will also be reporting this thread.

InDeoEstMeaFiducia · 14/08/2020 00:45

Wow. I have had dire insomnia since I was about 13. I have PTSD and major depression. My insomnia's been scary, but as a baby you never slept? That's incredible. 3.5mg of zopiclone works for me, but I can't get zop anymore anywhere, even though I'd taken that for years, same dose.

InDeoEstMeaFiducia · 14/08/2020 00:47

@EarringsandLipstick

This thread is insane and highly irresponsible.

OP, what you describe is not possible.

I hope you might be able to access some help. I'm reporting this in the meantime.

Yep!
ChubbyPigeon · 14/08/2020 01:46

Your not getting energy though OP

Its physically impossible. I dont know whether this thread is a way for you to discuss how little you can eat or what but you arent getting energy. The only calories you are consuming is alcohol

netstaller · 14/08/2020 07:16

You may have a thyroid disorder - go and see an endocrinologist who could recommend you for further tests. Dr John Stevens at Chelsea and Westminster is fantastic and also available privately

EarringsandLipstick · 14/08/2020 07:29

You may have a thyroid disorder

Nonsense.

There's no 'thyroid disorder' that ensures someone can stay alive on 100 calories a day, alongside the conveniently calorie-free alcohol OP consumes 🙄

I have hypothyroidism (underactive thyroid)

Posters need to stop feeding the OP's utterly disordered thinking.

VeggieSausageRoll · 14/08/2020 07:32

A lot of the phrases you use are eating disorder red flags. Please seek the correct medical and psychological help to get well, rather than chasing some weird diagnosis that doesn't exist.

earlydoors42 · 14/08/2020 07:33

You haven't said how much you drink on those 2-3 nights a week? How much is it?

TheOrigBrave · 14/08/2020 07:41

Reported. OP needs specialist help.
It is not possible to live on 100 cal a day.

Sierramike · 14/08/2020 07:48

@TheOrigBrave

Reported. OP needs specialist help. It is not possible to live on 100 cal a day.
Not for very long
wowfudge · 14/08/2020 08:04

How much alcohol do you drink in a typical week? You've been asked repeatedly, but don't answer this, you just dismiss the question by saying it doesn't count. Also some of your posts are making me think we don't have the whole picture - you put on weight, a stone in a week, when you eat over X calories a day and you only lose when you eat 100 calories a day. I can't work out what you actually are having when and it's this that makes it very difficult to understand. There must be an inbetween where you maintain weight without putting on more and you don't lose either. I haven't a clue what that is from your posts though.

Nestofvipers · 14/08/2020 08:22

@EarringsandLipstick
Thank you! This thread is as you say completely irresponsible and most of the advice on here is fuelling the idea that the OP should be chasing some ultra rare and non existent disorder.

@VeggieSausageRoll indeed.

Pacif1cDogwood · 14/08/2020 08:41

OP, I hope you will find the help you need.

This will unlikely come from chasing some obscure illness and I am glad others on this thread have highlighted this also.

Elbels · 14/08/2020 10:14

You've mentioned having anorexia in the past, I'd suggest that it's in the present? Have you had any counselling or therapy around disordered eating?

I agree with others - it is not possible for a human to survive on 100 calories a day and what nutrients in white wine are you talking about?

Climbingallthetrees · 14/08/2020 10:36

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wowfudge · 14/08/2020 10:44

If you have doubts about a poster you should report the post, not make comments like that.

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