Update - 1 month since diagnosis

Anthony_H

Member
Messages
24
Type of diabetes
Type 1
So since my unexpected diagnosis on 24th August, life with diabetes has been interesting, somewhat frustrating at times, extremely informative (to the point of borderline overload) and humbling in many respects. The good news is that, with the exceptional help I’ve received from the specialist staff at the hospital as well as my G.P’s, we are making good progress.

I’ve read a number of posts where people have obviously not received anywhere close to the help I’ve experienced during my first month with diabetes and my heart genuinely goes out to them. I’m a reasonably intelligent guy but I am under no illusion that I would have really, really struggled without the knowledge and experience so evident in my treatment thus far.

It’s not been easy, particularly when my eye sight became extremely blurry just a few days into my treatment. This, just at the time when you’re handed a folder full of information about your new condition followed by books and even more literature, and testing devices, and the desire to browse the internet for more information and read forums etc, etc.....but you can’t because you’re eye sight is failing you....aaargh!!!

My sight is returning back to normal now, as predicted, and my knowledge of diabetes is increasing on a daily basis with much of the information coming from this website and its members knowledge and experiences......so thank you to all who have contributed to the website during its lifetime. Your comments really help us newbies in particular.

My treatment specialists are in the Strathmore diabetes clinic which is ideally placed up the very first corridor after the main entrance and shopping area within NHS Ninewells hospital and medical school in Dundee. It’s about 27 miles from our home in Angus and is one of the largest hospitals in Scotland.

I’ll try to write a quick summary of the appointments I’ve attended since I first found out I was diabetic.

9th August - GP at local clinic suggests I have blood tests as I have symptoms of diabetes.

18th August - blood tests taken by nurse at local clinic.

22nd August - phone call from clinic to arrange an appointment to speak with my GP about the results of my blood tests. 5 minutes

24th August - GP tells me I am definitely diabetic. Does a finger prick test to confirm. Phones hospital there and then to arrange for me to attend for a consultation the following day (though he did want me to go the same day) - 60 minutes total time

25th August - Into hospital via the AMU ward where I was seen by a nurse within 10 minutes who took further blood samples, another nurse who did an ECG test and then a doctor confirming my GP’s correct diagnosis. I was subsequently sent to the diabetic clinic to have a consultation with Dr ‘Craig’ for around 45 minutes which was immediately followed with an intense introduction to blood glucose and Ketone testing and the process required for injecting insulin,with immediate effect, by specialist nurse ‘Paul’ who had also been present and inputting during the earlier doctors consultation.
5.5 hours total time at the hospital (of which only about 20 minutes of that was sat waiting for someone to attend to me.....and I only fell asleep once!!) Given novorapid pen, lantus pen, needles, pricked, Freestyle meter, test strips, sharpy box, A4 folder of info to read, including a introduction to diabetes book. Agreed initial doses of 4 novorapid 3 x daily and 12 units of Lantus 1 x daily. First blood tests and injections done with Paul’s supervision.

28th August - phone call from Paul asking how things had gone over the weekend. After telling him my blood test results I was told to increase the dosages to 6 units Novorapid x 3 daily and 14 units Lantus I x daily. 15 minutes

30th August - hospital appointment with Paul where dosages were increased to 6 + 6 + 8 units Novorapid and 16 units Lantus. Introduced to the Novopen 5 with digital readout showing last dose after discussing my concerns about the potential to under or overdose if I experience a narcolepsy sleep attack during the testing and injecting process. Not a fix but best available option at this time.
Introduced to specialist dietitian Jill and given a ‘carb & calorie book’ and in-house produced food, beverage, carb, BG and dosage daily diary to complete following each self administered process. 1.5-2 hrs total time.

6th September - hospital appointment where I am introduced to specialist nurse ‘Lesley’ who will take over from where Paul left off.
Another chat with Jill mainly to talk about good and not so good food stuffs and a basic introduction to carb counting individual meals and how a personal insulin unit ratio is the ultimate target we are aiming to achieve, how it can change during the various parts of the day and how activity and other things can change the body’s insulin dependency both upwards and downwards. A lot for my brain to absorb!! Lantus goes up to 18 daily units.
1 hour total.

8th September - hospital appointment with Lesley. Can’t remember......system overload!! Introduced to dietician no 2, Elaine. Similar story and frustrated as we didn’t appear to progress from my last meeting with Jill. Left feeling anxious and quite down but understanding that the staff must combine their efforts to each individuals needs, intelligence and ability to best do their job thoroughly and correctly and at a controlled speed.
Novorapid 8,6 & 6 plus an additional 3 units if I have a late supper which was previously my normal routine. Lantus upped to 20units.
About 1.5 hrs total

12th September- missed telephone call from Lesley who left a voice mail for me to phone back. I did but she wasn’t available. I didn’t repeat.

15th September - telephone call from Lesley for an update of test results and dosages. Fixed dosage Novorapid remains 8,6,6 plus 3 additional if I have supper. Lantus increased to 22 units x 1 daily injection.

19th September - hospital appointment with Lesley and dietician no 3, Elinor. Lesley introduced me to my new meter, an Accu-chek Aviva Expert and base settings set up with help from Lesley. From now on, Novorapid dosages are to be taken as required throughout the day and, common sense applied, as directed by the Aviva meter after BG tests, carb values, meal times and physical / mental status have been inputted. Still continuing to write a diary also so as to include details of the food and beverages consumed, which the meter doesn’t detail. Also need to continue to use the Freestyle meter for Ketone tests.
Introduced to dietician Elinor who calculates ratios for breakfast, lunch and dinner times based upon my written diary notes. Lesley joins the discussion and inputted conservative time blocked ratios that allow for some inconsistencies are inputted into the Aviva meter settings. 1:10 breakfast, 1:15 lunch and dinner. Correction injections as advised by the meter or self if unsure of accuracy of inputs or meter advise. Also introduced to the Glucogen hypo kit....wife appears very excited at the prospect of using it on me which frankly concerns me as she’s a farmers daughter who was brought up injecting three quarter tonne bulls !! Lantus now up to 24 units.
About 1.5 hours total.

22nd September - telephone call from Lesley asking for blood test results and my general well-being. Lantus dose increased to 26 daily units. Novorapid units per day totalling between 27-34.

26th September - telephone call from Lesley asking for latest blood test results and condition of my general well-being. Lantus upped to 28 units daily. Novorapid units remaining about the same, 27-34. Last two days have BG tests to be much more stable than any time prior and 80-90 % of them within current tolerances set of between 6 - 12.
Time block dosage ratios are agreed to be tightened to 1:10 breakfast, 1:12 lunch and dinner. Correction injections if and when necessary at the same time block ratios. Lantus increased to 28 units once daily.

29th September- telephone call from Lesley asking for blood test results and my general well-being. Lantus remains at 28 units daily. Novorapid also very similar to previous. Getting closer to a definitive blend of ratios?

Next appointment is tomorrow where Lesley is hoping to have me begin my trial of the Libre BG test system currently not available on prescription through the NHS though I noted a post from a member suggesting it may be available on the NHS from November.

I have a further appointment due on 13th with Prof. ‘Rory’ who’s specialist area is experimental diabetes treatments among others so that should be an interesting chat. I also have an appointment with Dr ‘Deborah’ who is a clinical physician scheduled for 2nd November. I have no idea what that will entail but looking forward to learning more.

After my latest visit to see my GP last Friday, she has agreed to refer me to one of the neurologists at Ninewells hospital to discuss my narcolepsy and cataplexy condition further and the concerns I’ve previously raised with the diabetes team regarding my increased risk of mis dialling dosages due to my 3-4 x daily narcolepsy attacks which, FYI, has a very similar symptom list to a person experiencing a hypo..... sweating, confusion, dizziness, unaware of surroundings etc etc.
I’m hoping it can be a main topic of conversation when I meet the professor in a couple of weeks time where I hope to discuss the pros and cons associated with a pump as opposed to pen injections and hopefully get the two hospital departments speaking together to best formulate as good a workable safe guard as possible for me, particularly as I get more used to everything and, as a result, potentially more complacent.

I hope this is a good incite in what you can and should expect from a good NHS team. I’m so thankful for their continuing help and support as I adapt to my latest chronic condition.

Regards, Anthony
 

lou258

Well-Known Member
Messages
73
Type of diabetes
Type 1
Treatment type
Insulin
Great to hear you have such good support. Think I’m also very lucky here in West Yorkshire - have a hospital with a diabetes centre 15mins from my house and excellent nurse/dietician - and also spoke to the research nurses here who work on various trials/studies etc. Altho one of my gps saw me the day before I was admitted to icu with acute dka and didn’t spot it - the hospital care has been great :)
 

Anthony_H

Member
Messages
24
Type of diabetes
Type 1
Great to hear you have such good support. Think I’m also very lucky here in West Yorkshire - have a hospital with a diabetes centre 15mins from my house and excellent nurse/dietician - and also spoke to the research nurses here who work on various trials/studies etc. Altho one of my gps saw me the day before I was admitted to icu with acute dka and didn’t spot it - the hospital care has been great :)

Glad to hear that Lou. You’re obviously being helped by angels.....after all, it is gods country .....and Tha can always rely on t’Yorkshire folk to see thee rate....I’ve been in Scotland for over twenty years now but I’m a Barnsley lad at heart.
 
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Juicyj

Expert
Retired Moderator
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9,016
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Pump
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Hypos, rude people, ignorance and grey days.
Hello @Anthony_H Thanks for your update, and to hear the support you've received has been so good. My favourite saying is 'knowledge is power'.. helps enormously with becoming an expert :)
 

Biggles2

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Messages
324
Hi @Anthony_H , and welcome to the forum! Kudos on all you have achieved so far; your attention to detail will serve you well as you manage this disease moving forward. Your NHS care team sounds top notch - in terms of medical management and in providing education and support as you start managing your diabetes. You have also found your way to this forum - that is wonderful because you will always find support and encouragement from others who share this condition. And you will inspire others too, I suspect!
 

lou258

Well-Known Member
Messages
73
Type of diabetes
Type 1
Treatment type
Insulin
Glad to hear that Lou. You’re obviously being helped by angels.....after all, it is gods country .....and Tha can always rely on t’Yorkshire folk to see thee rate....I’ve been in Scotland for over twenty years now but I’m a Barnsley lad at heart.

This actually made me chuckle out loud whilst feeling lousy from flu jab - thanks! Much needed!
 

Ixarix

Well-Known Member
Messages
350
Type of diabetes
Type 2
Treatment type
Insulin
Nice to hear your doing well. I was recently diagnosed a few weeks ago, though in my case I wound up having a crash course with a stay in the hospital. My vision kind of improved for a while after I left the hospital. I always have worn glasses for distance. But for about a week my vision was fine without my glasses. However my eyes seem to have settled down and I'm back to wearing glasses.

I as well have a good support network around me. My family doctor has been really good. His practice is part of large medical team which includes a diabetic nurse who I've already seen. Plus a nutritionist who I will see Thursday. Also, through sheer good fortune, when I was in the hospital, an endocrinologist was working in the CCU. She was able to evaluate me there and arrange for a follow up appointment.

I think getting the proper support from the start makes a huge difference going forward. I find I'm much more calm about it, and what I have to do to stay healthy. Also, finding this site and being able to share experiences has been helpful as well. I can't imagine going through this without all this support.
 

Anthony_H

Member
Messages
24
Type of diabetes
Type 1
I think getting the proper support from the start makes a huge difference going forward. I find I'm much more calm about it, and what I have to do to stay healthy. Also, finding this site and being able to share experiences has been helpful as well. I can't imagine going through this without all this support.

Absolutely agree with you wholeheartedly
 
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Anthony_H

Member
Messages
24
Type of diabetes
Type 1
Hi @Anthony_H , and welcome to the forum! Kudos on all you have achieved so far; your attention to detail will serve you well as you manage this disease moving forward. Your NHS care team sounds top notch - in terms of medical management and in providing education and support as you start managing your diabetes. You have also found your way to this forum - that is wonderful because you will always find support and encouragement from others who share this condition. And you will inspire others too, I suspect!

Hi Biggles2 and thank you for your reply and kind welcome. I was recommended this site by specialist nurse Paul during my first hospital visit. He said it was THE site to visit....and he was right....hhhumff......again!! Lol
 
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SKB_9

Member
Messages
22
Type of diabetes
Type 1
Treatment type
Insulin
This is great news, I am glad to see you have such a lot of support. I have to say I feel a little disappointed in my own team's approach to managing my diagnosis. I've been diagnosed 4 months and while I can relate to the initial diagnostic appointments and the three intensive 'this is insulin' sessions which were excellent and very positive, I haven't had much since. There has not been a dietician at my clinic (until now, I'm hoping to be referred at my nurse apt next week) and I haven't had any follow up calls from the nurses.

I should say I have been repeatedly told I should call them if I have a question but I don't know what I should be asking, I feel like they want something more specific than "I've got T1 diabetes how can I get rid of it" which is on repeat in my head. I'm taking my agreed doses and testing regularly as I've been told but I feel like I've been left to get on with it really.

Anyway I don't know what I want from writing this, I guess I just feel a bit sorry for myself. But maybe it's helpful for some newbies to hear that if they aren't getting the full package they aren't alone! Maybe I need to move to Dundee :)
 

therower

Well-Known Member
Messages
3,922
Type of diabetes
Type 1
Treatment type
Insulin
Hi @Anthony_H . Welcome to the forum. That's one hell of a post. If I'd have started a post that long at 9.39 this morning I'd still be " typing" now:):):).
Seems that you've made a great start to T1 life, along with NHS back up.
Acceptance of the condition is key, positivity is your best friend and embracing the condition with the sole purpose of using it to make you a stronger, better person is the best way to go. ( my opinions only )
Good luck.
 

Anthony_H

Member
Messages
24
Type of diabetes
Type 1
This is great news, I am glad to see you have such a lot of support. I have to say I feel a little disappointed in my own team's approach to managing my diagnosis. I've been diagnosed 4 months and while I can relate to the initial diagnostic appointments and the three intensive 'this is insulin' sessions which were excellent and very positive, I haven't had much since. There has not been a dietician at my clinic (until now, I'm hoping to be referred at my nurse apt next week) and I haven't had any follow up calls from the nurses.

I should say I have been repeatedly told I should call them if I have a question but I don't know what I should be asking, I feel like they want something more specific than "I've got T1 diabetes how can I get rid of it" which is on repeat in my head. I'm taking my agreed doses and testing regularly as I've been told but I feel like I've been left to get on with it really.

Anyway I don't know what I want from writing this, I guess I just feel a bit sorry for myself. But maybe it's helpful for some newbies to hear that if they aren't getting the full package they aren't alone! Maybe I need to move to Dundee :)

Hi SKB
I’m really sorry to hear you feel your experience of the treatment you’ve received has been a way down on what I’ve experienced.

Really, the reason I wrote the post was to show how thorough my treatment has been so others like yourself can gauge whether or not you’ve been getting an equally good treatment process or whether you could see gaps.

The fact you haven’t yet seen a dietician yet given that carbs and food stuffs in general play such a big part in our treatment is not only surprising but unfair IMO. I had a half hour with Jill during my 2nd visit, and easily less than a week following my diagnosis and walked out with a carbs and calcs book to get me straight into the process, along with a diary for writing down my food intake details in.

If I were you I’d seriously consider printing this post and taking it into your specialist nurse during your next appointment and ask why you aren’t getting the same help. The likely answer may be they are under staffed but that certainly isn’t the case up here. A lot of the staff working with me are brought in from outward lying hospitals where the population demand only requires a clinic one or two days a week. The rest of the time is spent in the larger hospitals where demand is greater and whilst they would prefer one base, I certainly haven’t felt any anxiety from them towards my treatment needs. Far from it in fact.

I was diagnosed with narcolepsy and cataplexy in 2008. I had private medical insurance at the time and consequently had a rapid appointment schedule once referred. However, once diagnosed, the consultant basically said there’s no cure and nothing further he can do so take these pills and come back in a year to keep DVLA happy as I was still commuting at the time. There was no NHS help thereafter and although my GP would be interested in talking about my growing problems with the conditions as things got progressively worse, there was no other person on their patient list with the same condition, I.e; the6 simply didn’t have any other experience to base my treatment on.

It ultimately took me 8 years before I got a balance of meds’ which could control both conditions to as best as I could expect given their opposite med requirements of stimulation for narcolepsy and what can probably best be described as a calming sedative for cataplexy. My daily intake has had to quadruple during the last 9 years and that was down to self experimentation rather than expert guidance through knowledge. By week two of my diabetes treatment I must admit I was beginning to feel pretty angry towards the abandonment of help I had to deal and struggle so much with, with respect to my other illnesses

Following my recent positive treatment experiences, I last week got my GP to refer me for consultation to the neurological ward of the same hospital in Dundee after I went in to see her specifically to discuss my ying yang experiences. She fully understood and agreed a referral was overdue so hopefully my pushing for help will improve my well-being one way or another, even if it’s simply piece of mind that I’m at the best level of compromise I could be.

Push for help and keep at them. You don’t deserve any less.
 
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Anthony_H

Member
Messages
24
Type of diabetes
Type 1
Hi @Anthony_H . Welcome to the forum. That's one hell of a post. If I'd have started a post that long at 9.39 this morning I'd still be " typing" now:):):).
Seems that you've made a great start to T1 life, along with NHS back up.
Acceptance of the condition is key, positivity is your best friend and embracing the condition with the sole purpose of using it to make you a stronger, better person is the best way to go. ( my opinions only )
Good luck.

My experiences of having narcolepsy and cataplexy and what can happen when the medication isn’t sufficient to cope has made me appreciate how important medicine is and that not taking them seriously simply isn’t an option.

Everyone has heard of diabetes though, like me prior to August, few people without the condition really appreciate how sensitive our bodies are to insulin and how important our medication routine is.

Most people have heard of narcolepsy and it’s been more and more visible on TV over the past few years.

Very few people have heard of cataplexy and fewer understand it. I am constantly amazed by how many health professionals have never heard of it never mind seen it’s disabling and paralysing effects first hand. I can go from looking and feeling physically normal one minute to having complete and total body paralysis for up to 6 minutes, whilst still conscious..... and I remember the whole lot which is really, really scary.

So when I got diagnosed with diabetes, even though it was a surprise, I knew from the start that you can’t afford to mess about with things like this. So from day one I’ve had no problem accepting the fact I am now diabetic knowing that’s all I can do and get on with learning the processes involved as best and as quickly as I can.
 
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Anthony_H

Member
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24
Type of diabetes
Type 1
This actually made me chuckle out loud whilst feeling lousy from flu jab - thanks! Much needed!

Lou258 ..Just remembered ..... I’m also booked in for my first ever flu jab on the 17th at the GP’s after being advised by Lesley to have one. She also said I should get a pneumonia jab at the same time so any chance you can write me something to chuckle at then as I’m anticipating a double case of lousyness following those two jabs...?
 
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lou258

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73
Type of diabetes
Type 1
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Insulin
Lou258 ..Just remembered ..... I’m also booked in for my first ever flu jab on the 17th at the GP’s after being advised by Lesley to have one. She also said I should get a pneumonia jab at the same time so any chance you can write me something to chuckle at then as I’m anticipating a double case of lousyness following those two jabs...?

I’ll pop it in my diary ;) I had both - I think it’s the flu jab that’s done me in tho. Think if I was at 100% I’d have handled it better but being newly diagnosed too think the body is still recouping ....
 
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Anthony_H

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24
Type of diabetes
Type 1
I’ll pop it in my diary ;) I had both - I think it’s the flu jab that’s done me in tho. Think if I was at 100% I’d have handled it better but being newly diagnosed too think the body is still recouping ....

Great....something else new for me to look forward to
 
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Anthony_H

Member
Messages
24
Type of diabetes
Type 1
Great way to start Tuesday morning..... late waking up today due to having a narcolepsy related night time of insomnia so didn’t take my first BG test until 6.10am.....that’s about 2 hours later than I normally get up.
Wow!! ..... my lowest test reading yet....5.9 !!

“Ah,...Thank you very much” (in the style of Elvis obviously,...!!?)

8.45am back up but only to 8.7 pre meal of 36g carbs with 4 units Novorapid.

So, and including the two tests this morning, In the past 3 days since 5.15 am on Saturday morning I’ve had a BG test range of 5.9-12.9 from a total of 24 tests. That’s an average of 9.6 which I’m chuffed to bits with tbh. Just 3 weeks ago I was averaging mid twenties!