Really struggling

[vicky1974]

Hi everyone. I’ve posted a couple of times and you’ve all been so helpful. I’m really struggling though.

Recent diagnosis of type 1 diabetes at 50. (4 weeks) Spent 6 days in hospital with DKA. Currently 22 units lantus and 8 units Novorapid. Diabeties nurses were meant to call today but didn’t.

My sugars are just so high. Libre sensor is 14.4 on average and time in range is 3%. Estimated A1C is 92mmol. I’m eating a healthy diet, limited carbs and walking the dog twice a day. I just feel awful. Ketones 0.5.

I’m confused, tired and my blurry vision is awful. Can’t see to drive, family think I’m home and alls well, they just don’t understand. Can’t work, never been ill in my life. It’s really getting me down. Called Gp for a sick note and he said I should be back at work by now?

How long will it be before things improve? I’ve been told to increase lantus by 2 units a week and it’s making no difference. Nor does a 2 unit correction dose. My best reading was 9.7 and that was once in 4 weeks. 16.2 every day when I get up. Not sure I can cope.

 

[saffron15]

@vicky1974 as you can see I am type 2 so cannot offer advice as to how to treat type 1. However I remember the shock of my diagnosis in July and the stress of not knowing what to do next. I think the stress meant I wasn't good at taking in information. I am retired so don't have the extra layer of working out how I can still work effectively. I do hope you have reasonable employers and good colleagues. 6 days in hospital and then diagnosis must have been draining. Until I read about Theresa Mays diagnosis with type 1 I had assumed if you didn't have it by your late 20s you were safe. Having joined this forum I realise what a huge variety of journeys we have had. As many type 1s are diagnosed as children or adolescents they have had to work but the technology and treatment has improved.

I am sure you will get excellent advice and tips from other members. Diabetes UK has got a helpline which may be useful for you. I phoned them when I was first diagnosed. GPs want to encourage people back to work but the best encouragement is to feel confident in managing your new world

 

[Inka]

Give the diabetes nurses a call tomorrow @vicky1974 They might suggest more insulin. Bear in mind that diabetic ketoacidosis is a big thing to recover from. I didn’t feel right for a few weeks. I was very tired and just felt rough.

Are you able to post your Libre chart here? When you did your 2 units correction dose, what was your blood sugar and how long was it since you’d eaten?

 

[mashedupmatt]

Hi @vicky1974 - sorry to hear you are struggling - your BG will come down over time - it is all a matter of getting your Basal Insulin (Lantus, in your case) right to start with so that you are not starting on a high number before taking eating etc. into account - the good news is that your Ketones are fine - 0.5 is classed as "neglible" - I wouldn't get too hung up on the numbers from your Libre too, particularly so soon after diagnosis - they will be high whilst you get your dosages right and too much information can cause more stress (and higher BG as a result) - you are being given the right advice as to increasing your basal dosage by 2 units (which is roughly a 10% increase - it can be dangerous to increase it too quickly) but your numbers do suggest to me that this needs to be more - Definitely perservere in speaking to your Diabetes Nurse tomorrow - I feel your pain, as do many others here, no doubt - it will get easier though, I promise

 

[vicky1974]

@vicky1974 as you can see I am type 2 so cannot offer advice as to how to treat type 1. However I remember the shock of my diagnosis in July and the stress of not knowing what to do next. I think the stress meant I wasn't good at taking in information. I am retired so don't have the extra layer of working out how I can still work effectively. I do hope you have reasonable employers and good colleagues. 6 days in hospital and then diagnosis must have been draining. Until I read about Theresa Mays diagnosis with type 1 I had assumed if you didn't have it by your late 20s you were safe. Having joined this forum I realise what a huge variety of journeys we have had. As many type 1s are diagnosed as children or adolescents they have had to work but the technology and treatment has improved.

I am sure you will get excellent advice and tips from other members. Diabetes UK has got a helpline which may be useful for you. I phoned them when I was first diagnosed. GPs want to encourage people back to work but the best encouragement is to feel confident in managing your new world

Thank you

 

[vicky1974]

Give the diabetes nurses a call tomorrow @vicky1974 They might suggest more insulin. Bear in mind that diabetic ketoacidosis is a big thing to recover from. I didn’t feel right for a few weeks. I was very tired and just felt rough.

Are you able to post your Libre chart here? When you did your 2 units correction dose, what was your blood sugar and how long was it since you’d eaten?

Thanks, I’ll call tomorrow. I’ll try and post my chart. My blood sugar was 16.5 after an hour of 2 units it was 15.7

 

[vicky1974]

Hi @vicky1974 - sorry to hear you are struggling - your BG will come down over time - it is all a matter of getting your Basal Insulin (Lantus, in your case) right to start with so that you are not starting on a high number before taking eating etc. into account - the good news is that your Ketones are fine - 0.5 is classed as "neglible" - I wouldn't get too hung up on the numbers from your Libre too, particularly so soon after diagnosis - they will be high whilst you get your dosages right and too much information can cause more stress (and higher BG as a result) - you are being given the right advice as to increasing your basal dosage by 2 units (which is roughly a 10% increase - it can be dangerous to increase it too quickly) but your numbers do suggest to me that this needs to be more - Definitely perservere in speaking to your Diabetes Nurse tomorrow - I feel your pain, as do many others here, no doubt - it will get easier though, I promise

Thank you

 

[vicky1974]

Thanks, I’ll call tomorrow. I’ll try and post my chart. My blood sugar was 16.5 after an hour of 2 units it was 15.7

 

[vicky1974]

Hi @vicky1974 - sorry to hear you are struggling - your BG will come down over time - it is all a matter of getting your Basal Insulin (Lantus, in your case) right to start with so that you are not starting on a high number before taking eating etc. into account - the good news is that your Ketones are fine - 0.5 is classed as "neglible" - I wouldn't get too hung up on the numbers from your Libre too, particularly so soon after diagnosis - they will be high whilst you get your dosages right and too much information can cause more stress (and higher BG as a result) - you are being given the right advice as to increasing your basal dosage by 2 units (which is roughly a 10% increase - it can be dangerous to increase it too quickly) but your numbers do suggest to me that this needs to be more - Definitely perservere in speaking to your Diabetes Nurse tomorrow - I feel your pain, as do many others here, no doubt - it will get easier though, I promise

I just feel so awful and it feels like everyday is getting worse.

 

[mashedupmatt]

I just feel so awful and it feels like everyday is getting worse.

I'm sure we've all experienced times where it may seem all of a lost cause (I know I have) but once you have your dosages right it does definitely become easier - try not to focus on the numbers too much at this early stage (they will make you more anxious, which can negatively affect your BG) - I notice from your Time in Range Chart you have uploaded this is only 6 days of data - and you've only just got over DKA so looking at these numbers will obviously make you more worried (so try not to look at them!) - Your Ketones are fine, so just focus on getting your basal insulin right, with the help of your Diabetes Nurses - and you have a fabulous support team on this forum, who are all rooting for you - It is hard, but you will get through it

 

[Woodywoodpecker]

I just feel so awful and it feels like everyday is getting worse.

Ow Vicky you can do this

Hi everyone. I’ve posted a couple of times and you’ve all been so helpful. I’m really struggling though.

Recent diagnosis of type 1 diabetes at 50. (4 weeks) Spent 6 days in hospital with DKA. Currently 22 units lantus and 8 units Novorapid. Diabeties nurses were meant to call today but didn’t.

My sugars are just so high. Libre sensor is 14.4 on average and time in range is 3%. Estimated A1C is 92mmol. I’m eating a healthy diet, limited carbs and walking the dog twice a day. I just feel awful. Ketones 0.5.

I’m confused, tired and my blurry vision is awful. Can’t see to drive, family think I’m home and alls well, they just don’t understand. Can’t work, never been ill in my life. It’s really getting me down. Called Gp for a sick note and he said I should be back at work by now?

How long will it be before things improve? I’ve been told to increase lantus by 2 units a week and it’s making no difference. Nor does a 2 unit correction dose. My best reading was 9.7 and that was once in 4 weeks. 16.2 every day when I get up. Not sure I can cope.

vicky you can do this, it just takes time 4 weeks not long. I was an absolute mess in the beginning, same as you tired confused blurry vision and overthinking everything. I was off my work 9 weeks, could not see to work or drive. When I went back to work done phased return couple off hours a day, then slowly increased it. I had 6 week course at hospital, they went through everything with me, then doctor every couple off months, have you not been offered this I’m in Scotland, don’t know what happens in other areas. Tiredness and vision will improve but also takes time. Vicky u have got this

 

[Ivostas66]

Hi @vicky1974. Sending virtual hugs. Like you I was a late onset diagnosis; 42 when I was rushed to hospital with extremely high blood glucose and countless other nasty symptoms.

I felt like my world had ended and had a long hard cry at 5am in the hospital loo. Went to my bed, dressed, packed and kept asking, "So, when do I go home?" I was adamant that this condition was not going to beat me, but looking back it's much more challenging than a simple statement like that.

It probably doesn't seem like it at this stage, but it does get better. A few things to think about:

The hospital consultant was very honest with me when I was discharged and he said I should not return to work until I had a grip on injecting, testing blood glucose and keytone levels and was feeling strong enough. I had lost over a stone in weight prior to hospitalisation and a lot was muscle mass. I had to constantly pester my GP for fit notes, but I knew there was no way I could work (teach) until I was strong enough. I think that if you make it abundantly clear that you cannot work in your current condition then they may well change their tune.

You mentioned blurred vision. Prior to diagnosis, I was short sighted (-4). In the weeks prior to diagnosis, when I was DKA, it improved to -2. It took a long time (at least 4 weeks) to return to -4. The glucose floating around in my blood was causing my lenses to swell and reduce my 'shortsightedness' which is what is likely happening to you. It will improve, but will take time.

It will get better. We are all here for each other so just reach out if you need anything.

 

[Inka]

Thanks, I’ll call tomorrow. I’ll try and post my chart. My blood sugar was 16.5 after an hour of 2 units it was 15.7

If your blood sugar is over 13 (ish) you’ll probably find it takes longer to start coming down after a correction, eg 2.5 or 3hrs, so I wouldn’t expect to see much, if any, movement after an hour.

 

[Inka]

Can you post a day’s chart from the Libre - that is, the graph showing your blood sugar over 12 or 24hrs @vicky1974 ?

 

[vicky1974]

Hi @vicky1974 - sorry to hear you are struggling - your BG will come down over time - it is all a matter of getting your Basal Insulin (Lantus, in your case) right to start with so that you are not starting on a high number before taking eating etc. into account - the good news is that your Ketones are fine - 0.5 is classed as "neglible" - I wouldn't get too hung up on the numbers from your Libre too, particularly so soon after diagnosis - they will be high whilst you get your dosages right and too much information can cause more stress (and higher BG as a result) - you are being given the right advice as to increasing your basal dosage by 2 units (which is roughly a 10% increase - it can be dangerous to increase it too quickly) but your numbers do suggest to me that this needs to be more - Definitely perservere in speaking to your Diabetes Nurse tomorrow - I feel your pain, as do many others here, no doubt - it will get easier though, I promise

Thank you

 

[vicky1974]

Ow Vicky you can do this

vicky you can do this, it just takes time 4 weeks not long. I was an absolute mess in the beginning, same as you tired confused blurry vision and overthinking everything. I was off my work 9 weeks, could not see to work or drive. When I went back to work done phased return couple off hours a day, then slowly increased it. I had 6 week course at hospital, they went through everything with me, then doctor every couple off months, have you not been offered this I’m in Scotland, don’t know what happens in other areas. Tiredness and vision will improve but also takes time. Vicky u have got this

Thank you so much ❤️

 

[vicky1974]

Hi @vicky1974. Sending virtual hugs. Like you I was a late onset diagnosis; 42 when I was rushed to hospital with extremely high blood glucose and countless other nasty symptoms.

I felt like my world had ended and had a long hard cry at 5am in the hospital loo. Went to my bed, dressed, packed and kept asking, "So, when do I go home?" I was adamant that this condition was not going to beat me, but looking back it's much more challenging than a simple statement like that.

It probably doesn't seem like it at this stage, but it does get better. A few things to think about:

The hospital consultant was very honest with me when I was discharged and he said I should not return to work until I had a grip on injecting, testing blood glucose and keytone levels and was feeling strong enough. I had lost over a stone in weight prior to hospitalisation and a lot was muscle mass. I had to constantly pester my GP for fit notes, but I knew there was no way I could work (teach) until I was strong enough. I think that if you make it abundantly clear that you cannot work in your current condition then they may well change their tune.

You mentioned blurred vision. Prior to diagnosis, I was short sighted (-4). In the weeks prior to diagnosis, when I was DKA, it improved to -2. It took a long time (at least 4 weeks) to return to -4. The glucose floating around in my blood was causing my lenses to swell and reduce my 'shortsightedness' which is what is likely happening to you. It will improve, but will take time.

It will get better. We are all here for each other so just reach out if you need anything.

Thank you for your great advice. It’s so hard isn’t it? I’m used to working full time and feel I’ll never get back to it. The blurred vision is getting me down. I know you’re right and it will get better, just feels so far away. Sorry to hear you’ve been through so much too

 

[vicky1974]

Thank you everyone. This forum really is great, you are all so helpful. Not sure I can reply as seems to be a glitch but I really do appreciate everyone’s help

 

[goodybags]

Hi @vicky1974 so glad you found the forum
OK so I am T2 myself but there are so many of us that through the advice & shared experiences of others on here have received the much needed support to get Diabetes under control

hopefully you get hold of the DSN tomorrow and as @mashedupmatt was advising it will be a case of getting the insulin dose right for you.

You were saying your GP was trying to rush you back to work, what kind of work do you do ?

 

[trophywench]

I agree, took my eyes nearly 8 weeks to get normal focus back again, even though my BG was generally usually lower than yours - certainly knew what hypos were.

Nobody else seems to have stressed this point but I really don't believe your GP is fit for this purpose hence the suggestion to ring your hospital Diabetes Specialist Nurse asap is excellent. They really do carry more than a bit of weight with GP surgeries!