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

(164 Posts)

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pleasebringmeluck Thu 13-Aug-20 07:14:01

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’s posts: |
pleasebringmeluck Thu 13-Aug-20 14:16:17

Anyone?

OP’s posts: |
PixellatedPixie Thu 13-Aug-20 14:17:56

I would definitely go and see an endocrinologist who specialises in diabetes and obesity. What area are you in?

ShirleyPhallus Thu 13-Aug-20 14:22:06

I don’t know masses about it but:

- 2000 calories a day is massive for a woman. An average height and build woman needs about 1500 calories a day
- you need a persistent calorie deficit to lose weight
- if you go too low, your body enters starvation mode and basically you won’t lose weight
- when you start to eat “normally” again you will immediately gain weight because you are now at an even bigger surplus

What you need to do is work out your resting metabolic rate and then a sensible calorie deficit from there

Exercise wise - avoid stuff like Pilates holding tins of beans and lift heavy weights, do HIIT and walk everywhere

You need to reset your diet mindset and metabolism. Avoid weight watchers and all kind of faddy diets like that

Lockdownseperation Thu 13-Aug-20 14:26:12

@pleasebringmeluck the OP says she is having 2000 calories a week.

doadeer Thu 13-Aug-20 14:28:03

2000 calories a week?!!

This sounds really dangerous.

I would speak to your GP and they can advise who can help as this doesn't sound healthy at all

SparklingLime Thu 13-Aug-20 14:32:22

I keep recommending them, but it’s the best source of sensible info I found: www.dietdoctor.com. Free first month membership means you can join their Facebook group and you could ask there. It’s international but quite USA-focussed, worth asking. Lots of useful videos on the website from Dr Fung and others on metabolism etc.

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wowfudge Thu 13-Aug-20 14:32:25

Starvation mode is a myth. People who are starving lose weight. The recommendation to avoid Pilates is bizarre.

When did you last eat normally OP and are you on any medication? If you are eating so little you will be deficient in many nutrients and at huge risk of osteoporosis, amongst other things. What do you drink on a daily basis?

ShirleyPhallus Thu 13-Aug-20 14:36:43

The recommendation to avoid Pilates is bizarre.

No it’s not. If it’s weight loss the OP is after it will make a very small difference. These threads are often full of people recommending to do Pilates once a week and some gentle walks and this will just not make a difference to weight loss.

I misread the bit that said 2000 calories a week!! Oh OP!

tectonicplates Thu 13-Aug-20 14:40:30

I wonder if it would be worth seeing a private dietician first, as they will often know of all the local doctors and obesity specialists etc, and/or other options that may be available to you.

Hairthrowaway Thu 13-Aug-20 14:43:33

So you lose weight if you eat 700 calories a week but when consuming 1400 weekly calories you either remain the same weight or gain a stone?

How much do you weigh to begin with?

How long have you been on this diet?

I think this is something you should address with your GP as if true, you most likely have other health issues. Whether that’s causing the weight issues, or as a result of the shock diet

wowfudge Thu 13-Aug-20 14:44:13

Weight loss is 80-90% down to diet rather than exercise.

If the OP really is consuming 2000 calories a week then there something else going on and it doesn't matter what exercise she does or doesn't do.

Hairthrowaway Thu 13-Aug-20 14:44:34

Also why are you relying on diet aloe rather than exercising?

Hairthrowaway Thu 13-Aug-20 14:44:54

Alone*

pleasebringmeluck Thu 13-Aug-20 15:57:52

Exercise has never resulted in any weight loss for me at all no matter how much I've done. There are studies that show that around 20% of the population get no benefit from exercise whatsoever, in terms of weight loss at least, and I'm one of them it would seem.

I've ate this amount for well over a decade although there was a period of a few years in the middle when I tried to increase my daily calorie intake to 1200 calories a day after I got my metabolism measured and they said I could eat this. I put on 3 stone on this intake though, a stone or so in the first week, and that was with regular fasting thereafter to lose weight when I could. I only fasted because eating less doesn't result in weight loss until I go down to 100 calories a day.

OP’s posts: |
pleasebringmeluck Thu 13-Aug-20 15:58:52

I'm in central Scotland. I've seen multiple endocrinologists and loads of GPs starting from about age 13 but the tests always come back normal and the either don't believe me or they just say there's nothing they can do to help.

OP’s posts: |
pleasebringmeluck Thu 13-Aug-20 15:59:40

Thank you SparklingLime I'll check that out!

OP’s posts: |
AuntieDolly Thu 13-Aug-20 16:04:01

I'm struggling sticking to 1200 calories per day. How are you doing 2000 per week?

pleasebringmeluck Thu 13-Aug-20 16:05:03

Wowfudge I am more than aware I am likely deficient in all sorts of things but eating healthily just leads to rapid and enormous weight gain so I've given up on that.

I drink zero sugar fruit squash and water mostly. I wouldn't be sane if it weren't for the fact I can have something sweet to get me through each day.

I'm on amitriptyline for a sleeping disorder and it has definitely made it harder to lose weight. I used to be able to lose weight if I cut to 500 calories a day but that stopped working in my early 20s, probably corresponding to starting on the ami but I can't come off it unless I can find an alternative as I just don't sleep at all without it and therefore can't work. I think it exacerbates the problem but is not the cause - I started putting on weight when I was 9 despite being a slim child and a few years later when I started trying to lose it on diets I found out that every diet on the market was higher in calories than I was eating to begin with. I gained on slimfast and on Rosemary Connelly among others despite following them to the rule.

I drink alcohol two or three times a week. Strangely I can drink any amount of alcohol without any affect on my weight at all but I don't drink excessively.

OP’s posts: |
pleasebringmeluck Thu 13-Aug-20 16:05:55

Thanks *tectonicplates" - I may look into private dieticians although I've seen NHS ones in the past without much success.

OP’s posts: |
pleasebringmeluck Thu 13-Aug-20 16:08:29

Hairthrowaway - no I don't lose anything unless I eat 100 calories a day. Even eating 200 calories a day for months on end does not result in weight loss. I just don't understand it but there do seem to be a small number of very rare conditions that can make weight loss all but impossible. I weigh 12 stone so not obese but 2 stone overweight by the NHS guidelines. The main issue is not being able to lose as I don't feel I can risk pregnancy. I can easily put in a stone a week eating what is considered to be a healthy diet and after 9 months I'd be the size of a house and unable to ever lose it.

OP’s posts: |
Binterested Thu 13-Aug-20 16:11:50

Watching. My mum is in the same boat. She is very very inactive due to health conditions but resting metabolism ought to be enough to burn off the few calories she does take on.

tectonicplates Thu 13-Aug-20 16:16:18

pleasebringmeluck

Thanks *tectonicplates" - I may look into private dieticians although I've seen NHS ones in the past without much success.

But with a private dietician you get to "shop around", look up lots of different ones and find a specialist who appeals to you etc. It's worth sending a few email/phone enquiries just to start off with. The NHS ones might have been "general" ones who weren't necessarily the best ones for you. You can literally contact four different private ones, see the tone of their replies and choose the one that appeals. That's what I did when looking for a physiotherapist for a certain injury I had, and I know a lot of people do that with counselling.

pleasebringmeluck Thu 13-Aug-20 16:30:55

Yes, that might be worth doing tectonic - it's certainly worth a shot.

OP’s posts: |
tectonicplates Thu 13-Aug-20 16:34:56

By the way, the research doctor you wrote to - did she not suggest someone you could go and see?

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