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)...

[quote wowfudge]@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.[/quote]
Good on you! Hope you lose more. I'm happy at this weight and it's easy to maintain. I'm very stocky (I was a competitive gymnast until I was in my 20s) and now I'm menopausal, it's harder to lose weight. I do lots of weight training but really enjoy long walks and yoga most of all, so I'm pleased with where I am. I'd really struggle to lose more weight (even at the peak of my fitness I was 55kgs) and the trade off to my personal happiness and lifestyle isn't worth it to me.

I take nortriptyline for migraine prevention, but a lower dose. Have you spoken to your GP about trying something else instead of you're concerned about the effect on your weight? Aerobic/cardio exercise isn't going to help you lose weight though it will make you fitter - interval weight training and a high protein diet builds lean muscle and means you burn more calories doing nothing than someone with less muscle mass. I was thinking I could only lose weight on low carb, more restricted calories, but that hasn't been the case. I felt fat and unattractive, dressed to blend into the background and that's all changed. I'm happy to wear sleeveless tops as I have really toned arms. Weight training changes your shape and tightens everything up.

Given that it onset at 9, it's likely to be a hormonal issue coinciding with puberty.

However bmi is not always the best measurement. If you are 12 stone and healthy then don't worry about it. A healthy diet is just as if not important in and at least 3 months before pregnancy.

Has your pituitary gland been investigated?

Also any scans to check for ovary cysts? Thin Pcos is a thing although you'd likely to have seen issues on standard blood tests with those.

I'm afraid it could be damage from your history of anorexia that can impact on functions long term. Have you had treatment for this?

I would pay for one of those online blood tests for everything and make sure you dont actually have deficiencies as it's not possible to make a judgement without that.

Liver function tests been done? With anything auto immune you should have inflammation markers and some doctors dismiss those if they think you've been ill lately.

Do you have any other issues? Cycles normal etc?

Just because alcohol means you dont put on weight does not mean you should use it as substitute calories!

Thank you jesstan! That looks like a great website. I may fire of a few more emails this evening!

Have you contacted Dr Mosley?

How do you control your hunger? You must have huge self control to consistently eat 100 calories a day. I will chew my arm by the end of the day! I can’t imagine how your body and brain isn’t hungry and fighting for food at this calorie level

Yeah, I haven't actually tried weight training wowfudge but I've often wondered if it might help. I can't really believe it would sort the whole thing out but it's probably worth a try.

I've asked about changing my sleep meds but had a frustrating experience. I saw a doctor who let me try something else but she said there were lots of other things that we could go on to try if it didn't work. It gave me so much hope. It didn't work but when I went back I think she was off and I got given another doctor. He said there was absolutely nothing else we could try and refused to believe me when I said the other doctor (who was more experienced) had said that there were. He refused to budge completely and I think the other doctor left or at least was never available again. I've been looking into private sleep clinics too but it's all so overwhelming researching such different areas at the same time and it's just your luck whether the person you get is sympathetic or not. Doctors seem to have wildly varying beliefs about more or less everything in my experience!

Hairthrowaway I didn't mean I look like a house now, I think I was meaning if I got pregnant and had to eat a "healthy" diet for 9 months I'd be the size of a house by the end of it given I can put on a stone a week by just eating what's deemed healthy.

But I am overweight - by 2 stone.

Hublott I don't really get hungry since I was put on the amitriptyline which I think I already said is seemingly odd as most people say it makes them ravenous. It's more the psychological side of things I struggle with - I want to enjoy healthy, nourishing and delicious food like everyone else!

But yeah, I have been considering contacting Dr Mosely. He has connections it would seem, to all sorts of world class scientists and seems to be open minded. He has had his mind changed by research over the years I've been watching his programmes.

I was around 10 stone before I did the few years eating at 1200 calories a day wowfudge, which yes, was a healthy weight, but that was after eating around 200 calories a day for 6 years or so. Now I weight 12 stone, having come down from 13.5 stone by the fasting. I just can't seem to make enough headway with the fasting though for it to be a permanent solution. I haven't lost anything this year at all.

Did you receive treatment for your anorexia when you were a teen? It doesn’t matter how damaged your metabolism is, the laws of physics mean that you cannot be maintaining being two stone overweight at 2000 calories a week. This is not possible. What sleep disorder do you have? Is it possible you are eating while asleep?

do you actually do any walking.
try to do normal exercise every day.
why don't you stop drinking alcohol.
i think maybe some of your docs thought you were in denial about what you actually consume, ie that it is an eating disorder that you refuse to recognise, so they cannot help you.
your attitudes do sound a little odd, re when you were anorexic; not doing it to be very skinny, just slim. isn't that what all anorexics think, say.
please be careful. go back to GP and just ask for help. don't try to self diagnose. just say please help me, i don't know what to do.
ive been listening to the carpenters recently, so sad. when karen was not starving herself, she passed away because her heart gave out. cumulative effect over many years. she was only 33. beautiful voice.

Carelesssquid - yes, quite probably. And yet they've done hormone tests multiple times and they always come back normal as do all the other tests, including blood tests.

I can't remember if my pituitary gland has been tested but I'd imagine it would have been if it's routine for this kind of thing on the NHS?

I haven't had any NHS scans for PCOS but don't have the symptoms. I've also frozen my eggs 3 times in the last few years and I'm thinking they might have picked up on it during the process? Or would they not be looking?

Never had any treatment for anorexia or subsequently but the problem was there before I was anorexic. In fact it's the reason I was anorexic. I only started eating at that level because I was told I should lose weight and all the standard diets (Slimfast, Rosemary Connolly etc) lead to weight gain. I cut down gradually until the weight started coming off but it didn't start coming off until 500 calories a day I don't think. I only wish I could lose eating that amount now!

I had a liver function test a while back and it was fine.

What is the online blood test? I'm going to do a genetic test professionally but is this what you mean?

My cycle is relatively normal. Quite short and sometimes painful but I don't think that's unusual.

What do you mean about not using alcohol as substitute calories? If I replace my alcohol calories with food I gain loads of weight so I can't do that. And if I cut it out completely there is very little joy in life!

Clamdango - I think I do retain fluids due to the amitriptyline but I also have rolls of fat. There is definitely plenty of it there - I can see it! I've never heard of albumin. I will google it.

I'm on an AD that's legendary for weight gain. I was one who lost weight on it (probably because it sorted out my sleep so I wasn't up all night boozing and feeding my face and then too sluggish to do any exercise and also I have major depression). But I have yet to hear of anyone actually piling on so much weight they can only eat 2000 calories a week (btw, you're consuming over that because alcohol has calories, they count).

I don't feel the need to drink at all now, so I don't.

I can't see how you'll have energy to weight train if you're only eating 100 cals/day.

The pituarary gland is sometimes missed by GPs,I had a hormonal tumour that wasnt picked up til an MRI.

This is the test I was suggesting, I would pay for the full lot and see what you get back. Include testosterone just in case.

thriva.co

They would've picked up cysts on egg collections so probably not that.

I meant that it would be better to eat food instead of drink the alcohol and put some weight back on. An apple for a glass of wine etc. While BMI can be a useful indicator it has some failings and doesnt work for some ethnic groups for example. Have you tried a body fat analysis? And waist measurement is also a better indication of health.

Some medications make you retain water terribly, your sleep medication sounds like one of them. What sort of sleep problem do you have? It's likely a symptom rather than independent.

There are quite a lot if hormonal things were Pregnancy sort of hits a reset button on the condition. Obviously not recommended necessarily but if you've had egg collections I'm assuming you've been cleared for pregnancy by the fertility team?

I'm afraid it does sounds very much like you've not recovered from an anorexic mindset even with a physical condition as well.

What's the family health history like?

The NHS website says for a 5ft4 person:

Recommended daily calorie intake:
1351 - 1737 kcal
To lose 1-2lbs a week stick to the lower end of the range.

This is with an Inactive Lifestyle. Personally I have found I need to be at the lower ene to lose weight and even then it sometimes plateaus, so 1200-1350 calories should lead to 1-2 pounds loss a week. If you are drinking 1-2 glasses of wine thats 160-320 calories. Its silly not to count these as your intake as calories are calories, even if you don't 'see' them they are energy. In fact the calories probably get converted into fat and stored around the liver so you are 'fat' on the inside. I'm only a bit overweight but my fat mass is terrible. All of your calories come from sugar, the body stores these. Personally I would come off the sleeping tablet and log what you eat for a fortnight then take it to a nutritionist.

How old are you OP? Apologies if you have said that already and I missed it.

I’ve done the Mosley Fast800 diet - 12 weeks at 800 cals a day. Lost loads. 4 week break then another 12 weeks and a bit more lost.

Now strongly recommended not to do more than 1 round due to metabolic damage. Jason Fung etc have published articles - if you are going to go very low cal you need at least 70g protein a day to avoid metabolic damage. It can take years to recover a good metabolism. If you’ve been very low cal for years yours is probably as bad as it is possible to get.

Intermittent fasting is the cure for a bad metabolism, apparently.

Oh, and your diet is high in artificial sweeteners OP which are not good for you either.

Have you tried measuring macros? I don't believe that it's just about calories in and out. I have been measuring macros and eating 2500 + calories a day along side hiit and weights and I am losing weight. Slowly but its coming off. I still have 5 stone to go. I have struggled with my weight all my life. I can put on over a stone in a 2 week period (holiday) easily. Losing weight just doesn't happen for me but following a measured macro based plan and just having large amounts of carbs after workouts seems to have worked.

By the way, your brain needs 300 calories a day to function. I’m not sure furling it mainly with alcohol is the best idea.

*fueling

You're around 1.5 stone overweight for your height, not two stone.

Exercise and fresh air can improve your sleep quality - worth trying resistance exercise/weight training and walking regularly for this alone.

Vavavoom - I gain weight at the rate of a stone a week if I eat above 1200 calories. There is no way I could eat the amount recommended for a normal person.

And I can't come off the sleeping pills as I can't function without them. I can't work without them. Believe me I've tried. I just go back to 2 or 3 hours sleep a night as standard and get very ill very quickly.

And To all those saying alcohol calories count this just isn't true for everyone and this has been observed by scientists. It's not just me. Here's a quote from a New York Times article outlining some research done:

"For example, weight gain was negligible in alcoholics who were given 2,000 calories of alcohol daily on top of the 2,500 calories from foods they consumed to maintain their weight. But when the same number of additional calories were fed as chocolate, a steady weight gain resulted."

This particular article seems to suggest this is only the case in heavy drinkers but I have read others that have found it's more dependent on the individual. And as I have said I have run this experiment on myself many many times for up to a month at a time and I am 100% sure without any shadow of a doubt that I do not gain weight from alcohol or lose it by eliminating it. And I am not going to eliminate it because it is the only thing keeping me sane. If you could derive almost no pleasure from food and every waking minutes of your life was spent thinking about trying not to eat and the only respite you got from this was by drinking wine or gin 2 or 3 nights a week then I can pretty much guarantee you would be drinking 2 or 3 nights a week too!