Hba1c 171

[angelfacelou]

I've struggled for over a decade now with anorexia, binge eating, bulimia for the last 6ish years my diabulimia has got worse and worse. It has torn apart my mental health I now have diagnosis of
Cyclothymia (just below bipolar)
Borderline Personality Disorder
Depression

Managed to train to be a teacher but with my mental health I have not been able to complete my initial NQT year and haven't worked since May 2015.

My Hba1c has always been the highest my doctors have ever seen but when it came back as 171 last week I became a wee talking point at my surgery, the nurse called my care coordinator and either she did or my care coordinator rang the diabetes centre and my therapist and my psych was informed and appointment that was due in October was moved to the other day and looks as though everyone is now really worried.

But I have always confused everyone as I do not get ketones (if ever they are very very low so no impact) and have never been in DKA. I've arrived in a&e for a couple of things in the past year and their faces when they do BM and the sugar level is in the 40's or 50's but I'm perfectly fine and not acidotic is a picture of confusion.

All I really want is to be seen as really really really really sick not because I want attention but because I no longer want to be ill, I want energy, concentration, a future, a job, and to be here for my eight year old daughter as she grows up. If it was a visible illness I would be a total mess but as yet, I know they are coming but, I have no complications (although micro bleeds in eye are a sign) and do not end up in DKA and usually hold it together during my psych appointments so I am on a daily basis tearing my life apart and unable to stop.

I AM SO SCARED.

 

[catapillar]

Hi @angelfacelou its really brave of you to post so honestly.

I'm going to tag @jacqfromdwed as she may be able to contribute some useful contacts for you - http://dwed.org.uk

You say you hold it together in your psych appointments? But it might really help if you are able to be as open and candid there as you have been in your post. You could even try writing it all down and giving to your psychiatrist? They are obviously, rightly concerned about you and if they can have a better picture of what you are thinking, what your fears, are they might be able to better understand what is stopping you from looking after yourself like you obviously want to be able to, if they (and you) can get to grips with the "why" hopefully you can better work together to overcome it.

Sorry, this sound horrible, but it seems to me that they do see you as really really sick - you don't get an emergency MDT mental health meeting unless they are really taking things seriously. Help them to help you by being as open as you can be with them, are you keeping a diary to share with your psychiatrist?

It's brilliant and brave that you are determined to defeat it and accomplish all those wonderful goals.

 

[Seeker2016]

Hello,really sorry to hear about your situation. You might not be in DKA because you are not a type 1 or type 2 but LADA, or type 1.5. I don't know. Are you taking your medication- byi I which I mean insulin, that would bring high bloods down very quickly. Retinal bleeds need to be seen quickly as well. It sounds awful for you at the moment. What is your DSN actually advising you ?

 

[angelfacelou]

Hi @angelfacelou its really brave of you to post so honestly.

I'm going to tag @jacqfromdwed as she may be able to contribute some useful contacts for you - http://dwed.org.uk

You say you hold it together in your psych appointments? But it might really help if you are able to be as open and candid there as you have been in your post. You could even try writing it all down and giving to your psychiatrist? They are obviously, rightly concerned about you and if they can have a better picture of what you are thinking, what your fears, are they might be able to better understand what is stopping you from looking after yourself like you obviously want to be able to, if they (and you) can get to grips with the "why" hopefully you can better work together to overcome it.

Sorry, this sound horrible, but it seems to me that they do see you as really really sick - you don't get an emergency MDT mental health meeting unless they are really taking things seriously. Help them to help you by being as open as you can be with them, are you keeping a diary to share with your psychiatrist?

It's brilliant and brave that you are determined to defeat it and accomplish all those wonderful goals.

Thank you Catapillar,
All my professionals know me well but we are all stumped as obviously everything in recovery needs to come from me and I know what I need to do but something in my head just doesnt allow me and I've just got deeper and deeper into the diabulimia jungle.

I broke down totally this week in my appointment the worst I have ever been and psych thought I needed mental inpatient but crisis team came next day and they have said need to push for urgent push for eating disorder team which is local. I was declined access to it earlier in the year as I am receiving DBT through the complex needs team for my borderline personality disorder and not allowed to have both at once. So now got to see doctor and psych to get them to push through referral making sure they emphasise my diabetes.

It sounds so simple - take your insulin and eat normal food regularly.

 

[angelfacelou]

Hello,really sorry to hear about your situation. You might not be in DKA because you are not a type 1 or type 2 but LADA, or type 1.5. I don't know. Are you taking your medication- byi I which I mean insulin, that would bring high bloods down very quickly. Retinal bleeds need to be seen quickly as well. It sounds awful for you at the moment. What is your DSN actually advising you ?

Thank you. Yes I am a type 1, diagnosed in 1997. Insulin is the reason my hba1c is so high. I have an intense fear of it making me fat (ridiculous I know) and so I only ever take my Glargine at night.

I haven't seen a DSN in a while. Because I know what I should be doing there is nothing that has taken us any further. My head is so eating disorder twisted that I just can't control anything I can plan as much as I like but every day I destroy myself.

I will be making appointments on monday though with my doctor and the gp diabetic nurse though the crisis team advised me the other day to see if I can see the nurse at the GP every day at the moment to check in with my blood sugars to hopefully get me to keep on top of them as they are always above 31.1 so don't show on the machine. I don't think I can get any more down than I am.

 

[catapillar]

Well it's easier said than done. And you have to give yourself some credit for being so self aware - if you can see the glass there, that's positive that you will be able to figure out a way to smash through it.

Keeping pushing for the help you need and maybe get in touch with DWED (diabetics with eating disorders charity) they might be able to hel with tactics on how to get that support.

 

[angelfacelou]

Well it's easier said than done. And you have to give yourself some credit for being so self aware - if you can see the glass there, that's positive that you will be able to figure out a way to smash through it.

Keeping pushing for the help you need and maybe get in touch with DWED (diabetics with eating disorders charity) they might be able to hel with tactics on how to get that support.

I have heard of them before, shall go investigate further, thank you so much

 

[AndBreathe]

I've struggled for over a decade now with anorexia, binge eating, bulimia for the last 6ish years my diabulimia has got worse and worse. It has torn apart my mental health I now have diagnosis of
Cyclothymia (just below bipolar)
Borderline Personality Disorder
Depression

Managed to train to be a teacher but with my mental health I have not been able to complete my initial NQT year and haven't worked since May 2015.

My Hba1c has always been the highest my doctors have ever seen but when it came back as 171 last week I became a wee talking point at my surgery, the nurse called my care coordinator and either she did or my care coordinator rang the diabetes centre and my therapist and my psych was informed and appointment that was due in October was moved to the other day and looks as though everyone is now really worried.

But I have always confused everyone as I do not get ketones (if ever they are very very low so no impact) and have never been in DKA. I've arrived in a&e for a couple of things in the past year and their faces when they do BM and the sugar level is in the 40's or 50's but I'm perfectly fine and not acidotic is a picture of confusion.

All I really want is to be seen as really really really really sick not because I want attention but because I no longer want to be ill, I want energy, concentration, a future, a job, and to be here for my eight year old daughter as she grows up. If it was a visible illness I would be a total mess but as yet, I know they are coming but, I have no complications (although micro bleeds in eye are a sign) and do not end up in DKA and usually hold it together during my psych appointments so I am on a daily basis tearing my life apart and unable to stop.

I AM SO SCARED.

Hi there, and welcome to the forum.

I'm not T1, so I don't have to juggle insulin and all the other things T1s have to do, but I am someone who was seriously ill with an eating disorder in my late 20s.

All I really wanted to say that it is possible to recover from eating disorders an go on to thrive and live a full, fulfilled and successful life. I can say that with absolute confidence because I'm been there, fought the tough fight and go there. My disorder now seems like it happened in another lifetime (well, it's been 30 years), and certainly in terms of how I felt all those years ago and how I feel now, it might as well have been.

As you already know you're the one who has to do the yard yards, but they can be done and left in the past where they belong.

Hopefully one of the Diabulimia Section Mods will be along soon.

Really such good luck with it all.

 

[Seeker2016]

Also, and this may sound silly, and I absolutely understand where you're coming from, about weight gain with insulin, but why not just try a little insulin to begin with, to see if you can get the numbers down to below 30. It may sound patronising, but a slightly lower BG may make you feel a little better mentally. I really hope you get the help you need.

 

[angelfacelou]

Hi there, and welcome to the forum.

I'm not T1, so I don't have to juggle insulin and all the other things T1s have to do, but I am someone who was seriously ill with an eating disorder in my late 20s.

All I really wanted to say that it is possible to recover from eating disorders an go on to thrive and live a full, fulfilled and successful life. I can say that with absolute confidence because I'm been there, fought the tough fight and go there. My disorder now seems like it happened in another lifetime (well, it's been 30 years), and certainly in terms of how I felt all those years ago and how I feel now, it might as well have been.

As you already know you're the one who has to do the yard yards, but they can be done and left in the past where they belong.

Hopefully one of the Diabulimia Section Mods will be along soon.

Really such good luck with it all.

Thank you, I have wasted so much of my life and want to get it back, this positivity has made me smile

 

[angelfacelou]

Also, and this may sound silly, and I absolutely understand where you're coming from, about weight gain with insulin, but why not just try a little insulin to begin with, to see if you can get the numbers down to below 30. It may sound patronising, but a slightly lower BG may make you feel a little better mentally. I really hope you get the help you need.

I have tried to do this and was managing to do it at breakfast but then would maybe manage breakfast and lunch one day and then totally freak out and spiral even worse for next while.

I need to be rational and yes its not patronising at all, try to lower my BG so need the insulin

 

[AndBreathe]

Thank you, I have wasted so much of my life and want to get it back, this positivity has made me smile

OK, I do completely understand what you're saying, but, and it's quite a big and important but to me, I can honestly say that both my disorder and recovery were the making of me. Strange? Let's face it, you have to have a real streak of determination to have done as we have, albeit in different ways, and it will be the same determination, just deflected into a more positive direction that'll see you over the bumps on the road as you move forward to recovery.

I learned I could do absolutely anything I really, really wanted to. I just learned I wanted to focus on more positive things. Nothing is wasted. Nobody can buy determination or experience, and experiences make us what we are and what we become.

To have posted as you did in your original post shows courage. Use that courage to grasp something scary - the future.

 

[azure]

@angelfacelou Its hard to find the right words for all you're coping with. From what you're saying, it sounds like the Diabulimia is a huge part of your difficulties. People above are quite right in saying that high blood sugar makes you feel like rubbish. I find it makes me physically uncomfortable, irritable and just very drained. So feeling like that from the high BS has got to be making things harder for you. You're fighting a big battle on low reserves.

I've not yet moved this thread to the diabulimia section as its quiet there at the moment, and you're getting replies here. But maybe a read if that would help show you you're not alone.

I don't know what to suggest about you missing your mealtime insulin. Is it an option to take a proportion of it? So each meal take part of your dose for that meal? That way at least hopefully you'd get your BS down a little bit. Each tiny step you take is a positive thing. Be kind to yourself. Don't focus on your failures, think about the successes. You said you've taken your breakfast insulin sometimes. Well, look, there's one success right there. You're seeking help - I'd count that as a massive positive thing you can congratulate yourself for.

 

[angelfacelou]

@angelfacelou Its hard to find the right words for all you're coping with. From what you're saying, it sounds like the Diabulimia is a huge part of your difficulties. People above are quite right in saying that high blood sugar makes you feel like rubbish. I find it makes me physically uncomfortable, irritable and just very drained. So feeling like that from the high BS has got to be making things harder for you. You're fighting a big battle on low reserves.

I've not yer moved this thread to the a Diabulimia section as its quiet there at the moment, and you're getting replies here. But maybe a read if that would help show you you're not alone.

I don't know what to suggest about you missing your mealtime insulin. Is it an option to take a proportion of it? So each meal take part of your dose for that meal? That way at least hopefully you'd get your BS down a little bit. Each tiny step you take is a positive thing. Be kind to yourself. Don't focus on your failures, think about the successes. You said you've taken your breakfast insulin sometimes. Well, look, there's one success right there. You're seeking help - I'd count that as a massive positive thing you can congratulate yourself for.

Oh goodness i thought I had posted in the diabulimia section. Really sorry.

Taking a proportion at meal times I don't know if would do much as I binge and purge and get my sugars so so high. Am hoping the doctors and nurses this week when I speak to them may be able to help me with a support plan of some kind as know I need to be seen by someone constantly. If I didn't have my daughter I would be seeing if a medical inpatient at least to get my sugars stable for a few days and try to mentally kick start me was possible. But on the same note, getting normal sugars straight away after years of hba1c's well over 100 would probably not be a great idea.

 

[azure]

No need to be sorry at all

Before I was diagnosed with Type 1, I was hungry all time. I couldn't understand why. I felt like all the food I was eating was evaporating before it got to my stomach. The consultant later explained it was the high BS that was causing that hunger. I imagine that makes the binging worse because you're getting messed up hormonal signals too from the high BS.

You're right that it's probably more sensible to get your sugars down slowly after being so high. That's going to take a lot of input and support for you. I hope the doctors you speak to this week can get together a multi-team approach for you and give you all the support you need. I really feel for you.

P.S - your thread is in Diabulima now. @jacqfromdwed shoukd be along when she can to give her advice.

 

[angelfacelou]

No need to be sorry at all

Before I was diagnosed with Type 1, I was hungry all time. I couldn't understand why. I felt like all the food I was eating was evaporating before it got to my stomach. The consultant later explained it was the high BS that was causing that hunger. I imagine that makes the binging worse because you're getting messed up hormonal signals too from the high BS.

You're right that it's probably more sensible to get your sugars down slowly after being so high. That's going to take a lot of input and support for you. I hope the doctors you speak to this week can get together a multi-team approach for you and give you all the support you need. I really feel for you.

P.S - your thread is in Diabulima now. @jacqfromdwed shoukd be along when she can to give her advice.

Thank you.

I've begged for multi team input for ages this week has been the first week the different teams have all had a panic and called each other so fingers crossed.

 

[AndBreathe]

Thank you.

I've begged for multi team input for ages this week has been the first week the different teams have all had a panic and called each other so fingers crossed.

Hi @angelfacelou , I just wondered how you might be doing, a couple of days on, and if you'd managed to make any appointments with your team.

I'm rooting for you!

 

[angelfacelou]

Thank you @AndBreathe. I had an intense DBT session yesterday morning and managed a good day. Also saw a diabetic nurse who is going to see me weekly or as this week twice a week and said if I need more regular then can also arrange.

It is the first time in months I've managed a day and am just holding on today and yesterday was the first time in well over a year I did my insulin at each meal.

Am petrified and using my mindfulness and DBT skills is like he'll as rather than blocking all my feelings and emotions with binge purging and insulin ommission I have to feel everything but am managing to use them.

 

[AndBreathe]

Thank you @AndBreathe. I had an intense DBT session yesterday morning and managed a good day. Also saw a diabetic nurse who is going to see me weekly or as this week twice a week and said if I need more regular then can also arrange.

It is the first time in months I've managed a day and am just holding on today and yesterday was the first time in well over a year I did my insulin at each meal.

Am petrified and using my mindfulness and DBT skills is like he'll as rather than blocking all my feelings and emotions with binge purging and insulin ommission I have to feel everything but am managing to use them.

Excellent news!

Keep fighting the good fight angelfacelou, and keep taking the support. Everyone, and I mean everyone needs support from time to time. It's just sometimes we need more and sometimes quite specialist help than others.

I really am rooting for you.

 

[angelfacelou]

Thank you. X