Hey all, going through a difficult time

[kaylz91]

Wondering if anyone can lend some support and or point me in the right direction, I was diagnosed in November last year but now I've kind of developed a fear of food and am scared to eat too much, at 5ft 5 my weight has now become incredibly low at xxg and my BMI is obviously underweight and scoring xx. I only eat around just over xg carbs a day and the DSN/ Dietician/ Nurses etc all want me to increase this dramatically before something terrible happens but the fear is so huge of my bs going haywire that its not just a case of eat more as I cant, my Hba1c is incredibly low at below level as of the other week, my DSN has referred me to the psychology department but I received a letter saying there was a waiting list and I may not receive the help for a while, I have an appointment with my consultant in 3 weeks time that my DSN and consultant agreed to bring forward due to the things going on as I wasn't due to see him until the end of the year/ start of next year, anyway any help would be greatly appreciated, thanks in advance x

 

[himtoo]

Hi there @kaylz91
really sorry to read that you are struggling.
I know a nice young lady that might offer some support -- @asortafairytale

there is also a great charity that could possibly help -- link here http://dwed.org.uk/

just sending a hug from one T1D to another [[[hug]]]

 

[kaylz91]

Thank you for replying I just don't know what to do people just keep getting frustrated at me and shouting at me to just eat more but they don't get that its not as easy as that for me, and the permanent feeling of being alone and having no one to talk to too x

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[Scott-C]

the fear is so huge of my bs going haywire that its not just a case of eat more as I cant

Sorry to hear that, kaylz.

The fear of food issue might take some time to sort out, but the weight loss issue is more pressing as a physical problem.

At the risk of stating the obvious, you're losing weight because you're burning more calories than you're eating.

So, even though you're wary of carbs at the moment, how would you feel about upping your calorie intake by eating more fat? Fat has twice the energy in it of carbs. Olives, nuts, avocados, bacon, mackerel, all high fat high calories so might help put weight on without you having to worry about carb content throwing readings out.

Or have you ever tried sprinkling some soy sauce over sunflower seeds and then toasting them under a grill? Sunflower seeds are mainly fat but also packed with minerals - very healthy and a good way of making up the sort of stuff you might be missing out on. I quite often grill a small bowl of them to snack on while watching a film.

Longer term, I'm not a low carber by any means, but it's relatively easy to have a decent meal that's not going to pose any major swing problems. For example, nice bowl of chicken broth full of veg, say, 20 or 25g maybe a slice of buttered toast to dip in it, say 15g the barley in the broth breaks down relatively slowly, the butter mitigates things too, followed up by some lamb chops with the fat on, then 200g of blackberries works out at, wait for it, a mere 10g, (and they're in season here too in Scotland!). None of that is going to mess with levels too much.

You've been dx'd relatively recently, so, although it's understandable that you're cautious about keeping stable levels, you still have plenty of room for making errors without anything bad happening to you. While it's never nice going out of range, complications tend to become an issue mainly when people just ignore levels for extended periods and we're talking months/years here - you'd be surprised by the number of people who run around at 15 to 20 for weeks on end. It doesn't sound to me like you're going to do that, but you've taken it to the other extreme. One approach might be for you to work through a range of foods and see which ones work for you. If some are unpredictable and you end up on a flyer in the teens, well, that's not a disaster - you've simply done a bit of experimentation, figured out that one doesn't work for you so scratch it off your list. The occasional flyer in the teens while working out which foods work really doesn't matter in the long term.

Best of luck!

 

[catapillar]

What is making you scared of eating @kaylz91 , is it the impact on your blood sugar? Are you using a CGM or libre? It might be wise to give that a break if it's contributing to your fear of eating.

Do you know what's got your hba1c incredibly low? Are you having hypos? Do you have good hypo awareness? In terms of increase in risk of complications, an increase in hba1c from 30 to 40 or 50 translates to virtually nil increase in risk of complications.

Would you consider seeing a psychiatrist privately if there is going to be a long waiting list to see one on the NHS?

Dr Leanne Hayward is a psychiatrist who has type 1 diabetes and experience in treating people with eating disorders. I don't know contact details, but she has a Twitter account - https://mobile.twitter.com/DrLMHayward I believe she may be taking on private patients with type 1.

 

[kaylz91]

Sorry to hear that, kaylz.

The fear of food issue might take some time to sort out, but the weight loss issue is more pressing as a physical problem.

At the risk of stating the obvious, you're losing weight because you're burning more calories than you're eating.

So, even though you're wary of carbs at the moment, how would you feel about upping your calorie intake by eating more fat? Fat has twice the energy in it of carbs. Olives, nuts, avocados, bacon, mackerel, all high fat high calories so might help put weight on without you having to worry about carb content throwing readings out.

Or have you ever tried sprinkling some soy sauce over sunflower seeds and then toasting them under a grill? Sunflower seeds are mainly fat but also packed with minerals - very healthy and a good way of making up the sort of stuff you might be missing out on. I quite often grill a small bowl of them to snack on while watching a film.

Longer term, I'm not a low carber by any means, but it's relatively easy to have a decent meal that's not going to pose any major swing problems. For example, nice bowl of chicken broth full of veg, say, 20 or 25g maybe a slice of buttered toast to dip in it, say 15g the barley in the broth breaks down relatively slowly, the butter mitigates things too, followed up by some lamb chops with the fat on, then 200g of blackberries works out at, wait for it, a mere 10g, (and they're in season here too in Scotland!). None of that is going to mess with levels too much.

You've been dx'd relatively recently, so, although it's understandable that you're cautious about keeping stable levels, you still have plenty of room for making errors without anything bad happening to you. While it's never nice going out of range, complications tend to become an issue mainly when people just ignore levels for extended periods and we're talking months/years here - you'd be surprised by the number of people who run around at 15 to 20 for weeks on end. It doesn't sound to me like you're going to do that, but you've taken it to the other extreme. One approach might be for you to work through a range of foods and see which ones work for you. If some are unpredictable and you end up on a flyer in the teens, well, that's not a disaster - you've simply done a bit of experimentation, figured out that one doesn't work for you so scratch it off your list. The occasional flyer in the teens while working out which foods work really doesn't matter in the long term.

Best of luck!

I'm in Scotland too! it has to do with complications already though as well, see if it wasn't bad enough i was diagnosed type 1 a week before my birthday in December I was also diagnosed with diabetic macular edema x

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[himtoo]

I'm in Scotland too! it has to do with complications already though as well, see if it wasn't bad enough i was diagnosed type 1 a week before my birthday in December I was also diagnosed with diabetic macular edema x

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awww @kaylz91 -- treatment for eyes is really advanced these days -- I have a macular odema in my left eye and it is getting treatment and regular visit to opthalmology -- keeping Bg's stable is a big help with this

have they said what their ( the medical peeps ) plan of action is for you ????

more hugs [[[hugs]]]

 

[kaylz91]

What is making you scared of eating @kaylz91 , is it the impact on your blood sugar? Are you using a CGM or libre? It might be wise to give that a break if it's contributing to your fear of eating.

Do you know what's got your hba1c incredibly low? Are you having hypos? Do you have good hypo awareness? In terms of increase in risk of complications, an increase in hba1c from 30 to 40 or 50 translates to virtually nil increase in risk of complications.

Would you consider seeing a psychiatrist privately if there is going to be a long waiting list to see one on the NHS?

Dr Leanne Hayward is a psychiatrist who has type 1 diabetes and experience in treating people with eating disorders. I don't know contact details, but she has a Twitter account - https://mobile.twitter.com/DrLMHayward I believe she may be taking on private patients with type 1.

The impact it 'may have' and no i don't use a cgm or a libre, I have had rather low waking levels for weeks now but I am reducing my tresiba, this sometimes causes odd results throughout the day as my DSN thinks I've dipped too low during the night then having a slight dump, I can't afford to go privately as I don't work at the moment so money is rather tight x

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[kaylz91]

awww @kaylz91 -- treatment for eyes is really advanced these days -- I have a macular odema in my left eye and it is getting treatment and regular visit to opthalmology -- keeping Bg's stable is a big help with this

have they said what their ( the medical peeps ) plan of action is for you ????

more hugs [[[hugs]]]

I've currently had injections done in both the eyes I had the course of 3 over the 3 months and I've had a few since that finished as it came back in each eye I had an appointment at ninewells about it the other week where I was given the news that they are currently bone dry and given an appointment for 3 months time unless I notice it come back again on which case I just have to call up, my control is relatively good but that doesn't seem to be helping my eyes at all my DSN describes the situation as VERY unlucky lol x

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[himtoo]

do you have false tears on your prescription ( carbomer ) or an ointment to assist ( lacrilube )

 

[azure]

@kaylz91 I understand how hard it must be for you. I think taking tiny steps is best. I agree with Scott that upping your fat is a good idea. I don't have problems eating but I do have a fast metabolism so eat a reasonable amount of fat to keep my weight stable.

I have whole milk, butter, Greek yoghurt, cheese, add olive oil to food, eat oily fish, snack on peanut butter. That helps a lot. Could you try all of those?

For the carbs, could you up them gradually. Say add 10g to a meal? You could choose a 'safe' known 10g. Then gradually add more.

 

[kaylz91]

@kaylz91 I understand how hard it must be for you. I think taking tiny steps is best. I agree with Scott that upping your fat is a good idea. I don't have problems eating but I do have a fast metabolism so eat a reasonable amount of fat to keep my weight stable.

I have whole milk, butter, Greek yoghurt, cheese, add olive oil to food, eat oily fish, snack on peanut butter. That helps a lot. Could you try all of those?

For the carbs, could you up them gradually. Say add 10g to a meal? You could choose a 'safe' known 10g. Then gradually add more.

That's what the dietician wants me to do but I find it so difficult to bring myself to do it and I dont have a variety of things I eat so that's a barrier too for breakfast I will have 26g carbs, lunch 34g and tea 25-26g I feel so weak and unable to function at times x

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[noblehead]

Hi @kaylz91

It looks like your DSN has got the ball rolling with your appointment to see a Psychiatrist and bringing forward your Consultants appointment, for support I would definitely get in touch with the DWED group as they seem like a nice bunch of people.

As for you being diagnosed with Macular Oedema at the same time, you have been unlucky but rest assured your in safe hands being treated under the Ophtmology Clinic, I've had retinopathy problems in the past and know exactly what your going through. Take care and good luck.

 

[catapillar]

The impact it 'may have' and no i don't use a cgm or a libre, I have had rather low waking levels for weeks now but I am reducing my tresiba, this sometimes causes odd results throughout the day as my DSN thinks I've dipped too low during the night then having a slight dump, I can't afford to go privately as I don't work at the moment so money is rather tight x

Night time hypos are seriously to be avoided. Especially ones that don't wake you up - which by the way does make questions about your hypo awareness rather more prominent, you should get woken up by a hypo,might you have good awareness. You know you can't drive if you don't have hypo awareness?

Have you heard of dead in bed syndrome? That's when a type 1 diabetic goes to bed and doesn't wake up due to a nocturnal hypo. So if you are so low that you are having nocturnal hypos that you aren't waking from you are swapping minimal risks of diabetic complications for risks of dying. Too low is to be avoided just as much as too high.

How much education / understanding of the risks and how they relate to post prandial spikes have you had? What do you consider "too high", I'm assuming it's seeing what you consider "too high" that makes you not want to eat. Have you experimented with pre bolusing to reduce post prandial spike? Have you experimented with macros to reduce post prandial spike? as well as giving you much needed more calories, adding fat to you meals should help to reduce the spike: it slows down the process of carbs in the meal turning into blood sugar rise so adding fat to your meals can create lower, gentler spikes.

 

[kaylz91]

Night time hypos are seriously to be avoided. Especially ones that don't wake you up - which by the way does make questions about your hypo awareness rather more prominent, you should get woken up by a hypo,might you have good awareness. You know you can't drive if you don't have hypo awareness?

Have you heard of dead in bed syndrome? That's when a type 1 diabetic goes to bed and doesn't wake up due to a nocturnal hypo. So if you are so low that you are having nocturnal hypos that you aren't waking from you are swapping minimal risks of diabetic complications for risks of dying. Too low is to be avoided just as much as too high.

How much education / understanding of the risks and how they relate to post prandial spikes have you had? What do you consider "too high", I'm assuming it's seeing what you consider "too high" that makes you not want to eat. Have you experimented with pre bolusing to reduce post prandial spike? Have you experimented with macros to reduce post prandial spike? as well as giving you much needed more calories, adding fat to you meals should help to reduce the spike: it slows down the process of carbs in the meal turning into blood sugar rise so adding fat to your meals can create lower, gentler spikes.

I know the risks of night time hypos that's why I'm currently in the process of trying to get my basal sorted to get my morning levels up I've been in the 5's the past few days but as I was 6.0 before bed last night I thought this is the ultimate test without a bed time biscuit and I woke to 4.3, I dont spike greatly as I do pre bolus, and I'm scared of there's too much fat in a meal that it will delay the carbs too much and end up spiking late x

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[Scott-C]

I'm in Scotland too! it has to do with complications already though as well, see if it wasn't bad enough i was diagnosed type 1 a week before my birthday in December I was also diagnosed with diabetic macular edema x

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Jeesh, you're not having much luck there, kid.

Not sure what the answer is other than take some comfort from the other posters who've had eye problems which have been sorted by some pretty **** clever docs.

This ain't the 1950s any more - there's a hell of a lot of tricks up those guy's sleeves nowadays.

 

[Mark_1]

As others have said I'd concentrate on adding fats or protein to your diet. Maybe you could start with adding a coffee with cream between meals as a first step.

 

[DCUKMod]

@kaylz91 Firstly, let me say that I'm not T1, so con't comment on your drugs regime at all, however, I can empathise with your nerves about making changes without too much certainty of what the impacts might be.

In terms of a CGM/Libre; have you considered asking your nurse or Consultant if you could have a trial of something; probably the Libre?

Utilising the Libre gives you so much more feedback than finger prick testing ever can, and could be very useful in bolstering your confidence in what you are or aren't doing.

Aside from being terminally curious, I firstly tried the Libre to garner some insight into those times when er simply can't be pricking our fingers. I wanted to know that I wasn't going off-track, over time.

If you were using one, you could experiment with your eating regimes and be able to see exactly what the impact of upping your fats/proteins, in real time.

After surgery, almost 2 years ago now, I lost weight, from a starting point of xxkg (BMI xx), and like you I really needed to add it back, but was worried about increasing my intake too much. It's not a load of fun eating more than we want to, but having to accept it as a daily/weekly task just to be done. However, using the Libre, I could see there was nothing too scary going on in the background.

It took me a couple of months to regain the couple of kilos I had lost, as my body was recovering from the surgery too, but it worked in the end. Just for completeness, what I did was just eat a bit more at every meal, then a few evenings a week, I'd have some berries and cream during the evening, where I never usually would, as I'm not a pudding person

Again, I wholly appreciate I'm not T1, but for me it was all about building and maintaining confidence levels both in what I was actually doing and the impacts on my whole body, not just on the readings on the scales.

I really hope you find something that will allow you to edge forward Kaylz. I know how annoying it can be when people say things like "Just eat a bit more. Boy, I'd love to be able to eat whatever I like, and try to put weight on". There were times when I could have throttled them!

 

[kaylz91]

@kaylz91 Firstly, let me say that I'm not T1, so con't comment on your drugs regime at all, however, I can empathise with your nerves about making changes without too much certainty of what the impacts might be.

In terms of a CGM/Libre; have you considered asking your nurse or Consultant if you could have a trial of something; probably the Libre?

Utilising the Libre gives you so much more feedback than finger prick testing ever can, and could be very useful in bolstering your confidence in what you are or aren't doing.

Aside from being terminally curious, I firstly tried the Libre to garner some insight into those times when er simply can't be pricking our fingers. I wanted to know that I wasn't going off-track, over time.

If you were using one, you could experiment with your eating regimes and be able to see exactly what the impact of upping your fats/proteins, in real time.

After surgery, almost 2 years ago now, I lost weight, from a starting point of 48kg (BMI 18.5), and like you I really needed to add it back, but was worried about increasing my intake too much. It's not a load of fun eating more than we want to, but having to accept it as a daily/weekly task just to be done. However, using the Libre, I could see there was nothing too scary going on in the background.

It took me a couple of months to regain the couple of kilos I had lost, as my body was recovering from the surgery too, but it worked in the end. Just for completeness, what I did was just eat a bit more at every meal, then a few evenings a week, I'd have some berries and cream during the evening, where I never usually would, as I'm not a pudding person

Again, I wholly appreciate I'm not T1, but for me it was all about building and maintaining confidence levels both in what I was actually doing and the impacts on my whole body, not just on the readings on the scales.

I really hope you find something that will allow you to edge forward Kaylz. I know how annoying it can be when people say things like "Just eat a bit more. Boy, I'd love to be able to eat whatever I like, and try to put weight on". There were times when I could have throttled them!

I test a lot I don't really want to be even more tempted to just be able to sit and scan, its not that I don't want to eat more I really do want to eat! It's just the utter fear of something going wrong x

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[DCUKMod]

I test a lot I don't really want to be even more tempted to just be able to sit and scan, its not that I don't want to eat more I really do want to eat! It's just the utter fear of something going wrong x

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Ah. That's a Catch 22 situation. In my world knowledge is power. Where we fear something going wrong or badly, the reality is rarely as bad as we tend to imagine it could be.

Are you still losing weight? I do hope you get things sorted.