Does it get better?

[azure]

I don't think it's a waiting list. That hospital are incompetent I'm every interaction I've had with them.

The GP did say she could prescribe it and said 'buuuut..' and shrugged her shoulders. No idea what that means. I guess it's 'we'd like to see the results to be certain'.

I get the impression that because of my phobia she'd rather they deal with that side of things. I don't know if I should cry, scream or bang my head off something. It's so infuriating. And this is the only hospital I can deal with apparently. Despite the city having about 5 of them. It is the closest I'll say that much. I might actually move house just to put me in range of a better hospital. How ridiculous I'd even have to think that.

Depending on the hospitals, there may be one with a bigger diabetes department than the others. All I can suggest is that you speak to the GP politely but firmly and push to get insulin as soon as possible if you need it.

Your phobia sounds a kind of double phobia - both the needle phobia and things under your skin. I've not heard of the second of those, but I would hope hypnosis would help you.

I find the more you think about something, the worse it gets. All the anticipation, all the thinking about what's going to happen or what you're going to do (ie an injection) makes things a thousand times worse. I think this is one case where thinking about things too much is utterly counter-productive. Usually mental preparation is good eg preparing for a job interview, etc, but for a needle phobia I personally find it completely unhelpful.

 

[Mynameiskez]

I have a pump and although there's a tiny plastic cannula in my skin (really small, really narrow) I don't feel it at all and in fact would have to feel around to find exactly where it is. It is totally unnoticeable. The cannula is replaced every two or three days. I do mine manually but there are inserters where you just put a device on your skin and click the button. Don't rule pumps out until you've tried injections and found out more information about them

I have big scars and scabs all over my face and arms because I can't abide the thought of something being under my skin. I appreciate your kind words but the thought of a pump is worse than a needle in my mind.

 

[azure]

I have big scars and scabs all over my face and arms because I can't abide the thought of something being under my skin. I appreciate your kind words but the thought of a pump is worse than a needle in my mind.

Well, at least you've made one positive decision A needle is definitely very quick. I'd also point out that although many people here use a basal/bolus regime, which is 4 injections a day, there's also a regime with only two a day (it has a mix of insulins and cuts your injection number in half).

I feel for you. This must all add an extra level of stress on top of the diabetes.

 

[Daibell]

Hi. A few things. Your GP can prescribe insulin as well as the hospital but perhaps he/she doesn't want to conflict with the hospital. What was you last HBa1C and what are your typical 2 hour post meal readings. LADA can come on at widely varying rates from very fast going into DKA and then A&E or like mine taking around 10 years to gradually get worse, and still, is although I've now been on insulin or 4 years. Have a look at the NICE diabetes pathways document on the web as it shows at what HBa1c levels you should be having tablets and then moving to insulin. In summary your last HBa1C should probably be the deciding factor assuming you don't have much excess weight and are already on more than one tablet type. If you have excess weight and not ona low-carb diet then that is the first stop before insulin.

 

[Mynameiskez]

Thank you Azure.

Just had a very emotionally charged conversation with someone at the hospital diabetes clinic. She's now saying the test results aren't important (so why have I been waiting over a month for them) and she thinks it's t2 not 1.5 and I'm booked in for insulin on Monday.

The whole process from start to finish has been a nightmare with different 'experts' contradicting each other, being told one thing then another, waiting, waiting, lost and discarded samples etc. In all of this it amazes me that no one has checked for ketones or even mentioned them once.

I'm not sure if it's the condition or the system that's bringing me down more.

There is light at the end of the tunnel at least. Another hypnosis session booked for tomorrow.

 

[Mynameiskez]

Hi. A few things. Your GP can prescribe insulin as well as the hospital but perhaps he/she doesn't want to conflict with the hospital. What was you last HBa1C and what are your typical 2 hour post meal readings. LADA can come on at widely varying rates from very fast going into DKA and then A&E or like mine taking around 10 years to gradually get worse, and still, is although I've now been on insulin or 4 years. Have a look at the NICE diabetes pathways document on the web as it shows at what HBa1c levels you should be having tablets and then moving to insulin. In summary your last HBa1C should probably be the deciding factor assuming you don't have much excess weight and are already on more than one tablet type. If you have excess weight and not ona low-carb diet then that is the first stop before insulin.

Hi. A few things. Your GP can prescribe insulin as well as the hospital but perhaps he/she doesn't want to conflict with the hospital. What was you last HBa1C and what are your typical 2 hour post meal readings. LADA can come on at widely varying rates from very fast going into DKA and then A&E or like mine taking around 10 years to gradually get worse, and still, is although I've now been on insulin or 4 years. Have a look at the NICE diabetes pathways document on the web as it shows at what HBa1c levels you should be having tablets and then moving to insulin. In summary your last HBa1C should probably be the deciding factor assuming you don't have much excess weight and are already on more than one tablet type. If you have excess weight and not ona low-carb diet then that is the first stop before insulin.

Am now booked in for insulin on Monday but being told it's t2 not LADA despite there being no test results yet - because I'm not rapidly losing weight. I am losing a little but not dramatic which is suprising given that I'm inactive all day and eating out of boredom.

Currently on a lot of tablets 3 types max dosee metformin - have been for 3 years but only regulate levels with very strict low carb and low fruit intake. Not a diet I can sustain with my usually very busy lifestyle. Plus no carbs = no energy.

Last HBA1C was above 80. Just under a stone overweight.

 

[Prem51]

Oddly the link goes to a thread by a lady asking for first time advice thinking she might have the big d.

Will check website though

I don't know why link isn't working now, it did when I previewed it.
I checked and the last part of the link isn't shown now. So this should work:
www.diabetes.co.uk/forum/threads/needle-free-injector.116710/

@miszu also posted ane earlier thread which gives info about the costs of the insujet:
www.diabetes.co.uk/forum/threads/anyone-familiar-with-insujet.116078/#post-1381277

nb if these links don't work just enter 'insujet' into the search box in top right corner and you should find the threads.

 

[Mynameiskez]

Many thanks

 

[DaftThoughts]

Thanks for tagging me @Diakat.

Am now booked in for insulin on Monday but being told it's t2 not LADA despite there being no test results yet - because I'm not rapidly losing weight. I am losing a little but not dramatic which is suprising given that I'm inactive all day and eating out of boredom.

That's bullcrap and they know it. I weigh 275lbs (19.5 st) and I am LADA, I had been gaining after my initial "T2 prediabetic" diagnosis around 2012, and confirmed LADA in 2014 after the tests. I never lost weight due to my diabetes because it was caught early, but that didn't change the fact my GAD came out positive. I recommend you ignore what people think and wait for the factual test results and base your diagnosis on that.

I can feel the depression sneaking back in as it's like my whole attitude to life has changed for the worst. I've always been ambitious and driven by achievement. Now I see myself stuck on the sofa for life, hiding away and doing very little. I feel lazy and hate myself for it. I struggle to even read a book for longer than 15 minutes. It's ridiculous.

I've had chronic depression and anxiety since I was 15, 10 years before diagnosis. It's important to understand that what you're feeling isn't a reflection of who you are as a person or what you're capable of, but the symptoms of a disease. You wouldn't fault a chancer patient for being unable to do anything due to their condition and treatment, why would you blame yourself for being in the same boat? Not having the physical or mental energy to do things doesn't make you lazy, it makes you exhausted from a legitimate illness. It's very easy to blame yourself, but I urge you to try and reframe these thoughts.

The whole process from start to finish has been a nightmare with different 'experts' contradicting each other, being told one thing then another, waiting, waiting, lost and discarded samples etc. In all of this it amazes me that no one has checked for ketones or even mentioned them once.

I'm not sure if it's the condition or the system that's bringing me down more.

It's probably the system making things worse. It took me, a diagnosed type LADA, 6 months to finally move to my requested insulin regime. The meds were putting me through a little hell with poor control and weight gain, but nobody wanted to hear what I said and tried to push different meds on me that I never wanted. The system can be grueling no matter where you live, but fighting for what you need is worth it. Nobody wants to inject and deal with needles, but I feel physically and mentally so much better now that I have regained a sense of control that I'd do it all over again in a heartbeat!

I don't have much experience with needle phobia. My anxiety gave me a hard time with my first 2-3 days of injecting when I started basal insulin once daily (that was 6 months before I switched fully to insulin). We tend to make it a lot worse in our heads than it really is. Easy to say, but it's true! If I wasn't looking at my pen I'd often not even know I was injecting at all, it's that painless for most shots.

My bottom line in this all is, that we understand and you're absolutely not alone. Whenever things get bad for you, we'll be here to offer you advice and a listening ear. I don't know if you're already seeing someone, but I recommend giving a psychologist a try to help you with your depression. Cognitive treatments can be very effective by giving you tools to cope with your emotions and feelings, and changing your perspective to help you reframe the situations you're in. (By reframing, I mean things like turning "Oh no I have to start injections and I'm terrified" into "It's not going to be a fun time but I'll feel so much better once I have my health back under control, let's do this!")

Also never downplay the legitimacy of your feelings. Just because 'others have it worse' doesn't mean your feelings and thoughts don't matter. Your issues are as legitimate as anyone else's. You deserve the best treatment possible. You deserve to be heard and comforted. You deserve to talk about what's going on. Don't let depression tell you otherwise!

 

[Mynameiskez]

Thanks for tagging me @Diakat.


That's bullcrap and they know it. I weigh 275lbs (19.5 st) and I am LADA, I had been gaining after my initial "T2 prediabetic" diagnosis around 2012, and confirmed LADA in 2014 after the tests. I never lost weight due to my diabetes because it was caught early, but that didn't change the fact my GAD came out positive. I recommend you ignore what people think and wait for the factual test results and base your diagnosis on that.


I've had chronic depression and anxiety since I was 15, 10 years before diagnosis. It's important to understand that what you're feeling isn't a reflection of who you are as a person or what you're capable of, but the symptoms of a disease. You wouldn't fault a chancer patient for being unable to do anything due to their condition and treatment, why would you blame yourself for being in the same boat? Not having the physical or mental energy to do things doesn't make you lazy, it makes you exhausted from a legitimate illness. It's very easy to blame yourself, but I urge you to try and reframe these thoughts.


It's probably the system making things worse. It took me, a diagnosed type LADA, 6 months to finally move to my requested insulin regime. The meds were putting me through a little hell with poor control and weight gain, but nobody wanted to hear what I said and tried to push different meds on me that I never wanted. The system can be grueling no matter where you live, but fighting for what you need is worth it. Nobody wants to inject and deal with needles, but I feel physically and mentally so much better now that I have regained a sense of control that I'd do it all over again in a heartbeat!

I don't have much experience with needle phobia. My anxiety gave me a hard time with my first 2-3 days of injecting when I started basal insulin once daily (that was 6 months before I switched fully to insulin). We tend to make it a lot worse in our heads than it really is. Easy to say, but it's true! If I wasn't looking at my pen I'd often not even know I was injecting at all, it's that painless for most shots.

My bottom line in this all is, that we understand and you're absolutely not alone. Whenever things get bad for you, we'll be here to offer you advice and a listening ear. I don't know if you're already seeing someone, but I recommend giving a psychologist a try to help you with your depression. Cognitive treatments can be very effective by giving you tools to cope with your emotions and feelings, and changing your perspective to help you reframe the situations you're in. (By reframing, I mean things like turning "Oh no I have to start injections and I'm terrified" into "It's not going to be a fun time but I'll feel so much better once I have my health back under control, let's do this!")

Also never downplay the legitimacy of your feelings. Just because 'others have it worse' doesn't mean your feelings and thoughts don't matter. Your issues are as legitimate as anyone else's. You deserve the best treatment possible. You deserve to be heard and comforted. You deserve to talk about what's going on. Don't let depression tell you otherwise!

Oh my gosh. I cried reading this. Not in a bad way. But because you have been so kind with your words.
It's horrible to know we have to go through this but all the same nice to know I'm not alone and that I'm not crazy.

It's a big worry that the hospital on every count have messed things up and it's them I'm relying on for my treatment. I've seriously started looking into moving areas so I can access another hospital. Ridiculous isn't it.

I've got a friend with LADA who is coming with me to my appointment too. So far I've always been alone and I think that contributes to my being fobbed off so much.

I absolutely agree the test results are vital. I'm on max dose metformin plus sitagliptin and canoglifazil and still my blood sugars were 15.4 this morning. I had one orange, 2 plumbs and a small portion of blueberries spaced throughout the day. Orange in the morning. Plumbs around 4 and berries before bed. How is that too much fruit? **** I love fruit. Carbs were tough to give up but fruit!!! We are conditioned from birth to eat fruit and that it's good for us. My dietician that I saw in my first 6 months from original diagnosis said fruit was fine as long as I spaced out the portions like I have.

Either way I do agree that insulin is needed - but I don't want to be taking meds I don't need. Canaglifazin can cause kidney issues on top of what a diabetic usually risks. Metformin stomach issues as we all know.

I'm getting better with the thought of needles since they told me there are push button pens that work like the finger pricker - and the insujet posted above. Going for my second hypnosis session today and one more on Sunday before insulin day on Monday. He's been getting me to think of all today he positive things that have happened in the past week or so. Quite a challenge but I have noticed an improvement once i force myself. It's a good excersise.

I did have CBT and EMDR for anxiety and depression last year. I used my insurance at work to go private as the NHS still 2 years later didn't even get me counselling. I was on the waiting list but heard nothing. Clearly it's something you have to nag to get.

I'm going to see how I get on with the insulin and if I can get some quality of life back. Have been signed off another month. So I hope to use that time to catch up on study and get back into an exercise routine. Assuming the insulin will enable this. I feel lucky to have been granted that time to be honest.

The consultant I will send Monday asked me to keep a record of my morning reading and a reading 2 hours after a main meal. I've decided to also record everything I eat and my morning weight too.

To be honest I don't find it that tough to lose upto 3lbs a day and oddly more on days I don't exercise. But eating out of boredom at the mo so know I have a high cal intake. I can Polish off a whole pack of walnuts and not blink an eye. Also eating a lot of full fat Greek yoghurt. 3 slices of bacon in the morning. Sometimes more bacon before bed. Better fat than carb right now. Plus I can tell by the errrrm scent I make (trying to be polite here) that I am producing keytones. But then my diet is akin the the ketogenic diet.

It really upset me the way that the consultant said 'unmanaged diabetes' that's always the attitude. Meds arent working - it must be your fault. For such a prevalent condition the health service we receive leaves such a lot to be desired.

Thanks again for your kind words and support. It's really brightened my mood and has helped a lot. Xxx

 

[Daibell]

Hi again. I hope you get some clarification shortly and insist on seeing your blood test results. You have come across what many of us have found that there is a lot of ignorance amongst the medics with regard to diagnosis and treatment. That includes DUK (not this site) when it comes to late onset T1. A positive GAD is a very strong indicator of T1 but which may never come on or may come on very slowly (the honeymoon period) or very fast; that is one cause of confusion. A negative GAD does not disprove T1 either as GAD antibodies are only one cause of T1. The c-peptide test is very useful. A low reading means you need insulin and you may well be in Ketosis and losing weight as the body can't burn/store carbs; you will be a T1. A high reading implies insulin resistance which normally goes together with excess weight; you will be a T2. You can occasionally have both types!

 

[Mynameiskez]

Hi again. I hope you get some clarification shortly and insist on seeing your blood test results. You have come across what many of us have found that there is a lot of ignorance amongst the medics with regard to diagnosis and treatment. That includes DUK (not this site) when it comes to late onset T1. A positive GAD is a very strong indicator of T1 but which may never come on or may come on very slowly (the honeymoon period) or very fast; that is one cause of confusion. A negative GAD does not disprove T1 either as GAD antibodies are only one cause of T1. The c-peptide test is very useful. A low reading means you need insulin and you may well be in Ketosis and losing weight as the body can't burn/store carbs; you will be a T1. A high reading implies insulin resistance which normally goes together with excess weight; you will be a T2. You can occasionally have both types!

Thank you. I will indeed press for the results and report back.

Just come out of 2nd hypnosis session and am pleased to say I feel much more positive about everything right now. Onwards and upwards.

Very glad I chose to connect with you all. I'm honestly overwhelmed with the kindness and support found here. You should all feel proud of how you have reached out to me. Thank you xx

 

[Lynmi]

Mynameiskez

I was tired before my diagnoses was changed to LADA not to the extent that you describe, but everything felt heavy, my legs would feel like I had weights strapped to my ankles when I walked up the stairs. This improved rapidly once I started on long acting insulin in December. So hopefully once you get sorted you will start to get your energy back. Good luck

 

[DaftThoughts]

Oh my gosh. I cried reading this. Not in a bad way. But because you have been so kind with your words.
It's horrible to know we have to go through this but all the same nice to know I'm not alone and that I'm not crazy.

It's a big worry that the hospital on every count have messed things up and it's them I'm relying on for my treatment. I've seriously started looking into moving areas so I can access another hospital. Ridiculous isn't it.

I've got a friend with LADA who is coming with me to my appointment too. So far I've always been alone and I think that contributes to my being fobbed off so much.

I absolutely agree the test results are vital. I'm on max dose metformin plus sitagliptin and canoglifazil and still my blood sugars were 15.4 this morning. I had one orange, 2 plumbs and a small portion of blueberries spaced throughout the day. Orange in the morning. Plumbs around 4 and berries before bed. How is that too much fruit? **** I love fruit. Carbs were tough to give up but fruit!!! We are conditioned from birth to eat fruit and that it's good for us. My dietician that I saw in my first 6 months from original diagnosis said fruit was fine as long as I spaced out the portions like I have.

Either way I do agree that insulin is needed - but I don't want to be taking meds I don't need. Canaglifazin can cause kidney issues on top of what a diabetic usually risks. Metformin stomach issues as we all know.

I'm getting better with the thought of needles since they told me there are push button pens that work like the finger pricker - and the insujet posted above. Going for my second hypnosis session today and one more on Sunday before insulin day on Monday. He's been getting me to think of all today he positive things that have happened in the past week or so. Quite a challenge but I have noticed an improvement once i force myself. It's a good excersise.

I did have CBT and EMDR for anxiety and depression last year. I used my insurance at work to go private as the NHS still 2 years later didn't even get me counselling. I was on the waiting list but heard nothing. Clearly it's something you have to nag to get.

I'm going to see how I get on with the insulin and if I can get some quality of life back. Have been signed off another month. So I hope to use that time to catch up on study and get back into an exercise routine. Assuming the insulin will enable this. I feel lucky to have been granted that time to be honest.

The consultant I will send Monday asked me to keep a record of my morning reading and a reading 2 hours after a main meal. I've decided to also record everything I eat and my morning weight too.

To be honest I don't find it that tough to lose upto 3lbs a day and oddly more on days I don't exercise. But eating out of boredom at the mo so know I have a high cal intake. I can Polish off a whole pack of walnuts and not blink an eye. Also eating a lot of full fat Greek yoghurt. 3 slices of bacon in the morning. Sometimes more bacon before bed. Better fat than carb right now. Plus I can tell by the errrrm scent I make (trying to be polite here) that I am producing keytones. But then my diet is akin the the ketogenic diet.

It really upset me the way that the consultant said 'unmanaged diabetes' that's always the attitude. Meds arent working - it must be your fault. For such a prevalent condition the health service we receive leaves such a lot to be desired.

Thanks again for your kind words and support. It's really brightened my mood and has helped a lot. Xxx

I'm very glad my post was so helpful to you. You're more than welcome to message me privately if you ever want to chat about stuff!

 

[Mynameiskez]

Mynameiskez

I was tired before my diagnoses was changed to LADA not to the extent that you describe, but everything felt heavy, my legs would feel like I had weights strapped to my ankles when I walked up the stairs. This improved rapidly once I started on long acting insulin in December. So hopefully once you get sorted you will start to get your energy back. Good luck

That's very reassuring - thank you.

 

[Mynameiskez]

I'm very glad my post was so helpful to you. You're more than welcome to message me privately if you ever want to chat about stuff!

Thank you daft (great name). It means a lot.

I'm booked in for insulin on Monday!!! Eeep but yey!!!

Feeling loads better after yesterday's hypnosis and having all this kind support.

 

[Mynameiskez]

Update.

My GAD results are back. I'm told they are 342.9. This is somewhat abstract to me at the moment. I take it this means I'm definitely LADA.

 

[Jamesuk9]

As I understand it, presence of antibodies indicates T1/LADA positive.

 

[Mynameiskez]

As I understand it, presence of antibodies indicates T1/LADA positive.

Indeed this is my understanding too.

Looking for confirmation and maybe if someone can help me understand what the numbers mean a bit more. I think upto 100 is normal from what I can gather. But how high is high. A scale of 1000, 5000, 10000?
300 could be hugely above normal or just slightly depending on the scale.

I know positive is positive and I'm definitely glad to know for certain now, but I'm a pain for wanting to understand things fully. Especially as I've been messed about so much.

 

[cz_dave]

Looking for confirmation and maybe if someone can help me understand what the numbers mean a bit more. I think upto 100 is normal from what I can gather. But how high is high. A scale of 1000, 5000, 10000?
300 could be hugely above normal or just slightly depending on the scale.

I know positive is positive and I'm definitely glad to know for certain now, but I'm a pain for wanting to understand things fully. Especially as I've been messed about so much.

Exactly. Positive is positive. I think the negative is below 10.