Type 1 My story so far, am I really Type 1

[scarfmad]

Hello,
This is my story so far my name is Julie and I am 52, I wondered if anyone could give me any advice.
May this year got diagnosed with T 2 and was given Ziclaseg 30 mg, went back a couple of weeks later as I felt no better and was sleeping about 10 hours a day, if not sleeping just drinking water. The nurse had a word with the doctor and decided as my BG readings were in the high 20's I was T 1, I came away with appointment to see the nurse that dealt with Type 1.
In the mean time my mom was popping in to see me and make me some food, good job really as she found me in bed and I didn't know who she was, so I ended up in A&E and remained in hospital for a week and I am very lucky to be here so the doctor said.
I was taking Lantus morning and night but now only take it in the mornings, I take Novo Rapid with meals and with some snacks like apples, I am not on very high doses Lantus 8 units and Novo Rapid ratio breakfast 1 to 5, lunch 1 to 7, evening meal 1 to 8 and snacks 1 to 10. Most evenings my readings before bed are high but I always wake up with fairly good reading, like last night was 16.8 and then woke up and it was 5.1, I had 3 units of Novo Rapid at 7 pm and that was it till the following morning.
Also Sunday night I had a sandwich for my tea the phone rang, it is the first time ever I had forgotten to take my insulin so before bed reading was 8.8 which is my lowest reading at night and woke up to 4.7............. the last insulin I took that day was at 2.40 pm. I had been busy that day as I was doing an antique fair, but even so I would have thought the readings would have been higher.
I have to say Diabetes seems to have taken over my life, I have spent a lot of time reading about it I am careful about what I eat, I suppose now I look at food differently it is more how many units I will have to inject to eat it. I tend to stick to similar foods breakfast is always 30 grams of Bran flakes and 200 ml of almond milk and a tablespoon of Chia seeds, lunch 1 slice of soya and linseed bread with chicken and dinner fish or chicken and about 6 or 7 different vegetables.
The doctors in the hospital said it is unusual someone of my age to get diagnosed with diabetes, also I have no family members that are diabetic. Since being diagnosed it seems to have opened a can of worms, as I really didn't have any health issues before.

I have also found that you can become obsessive with trying to get BG perfect, I think I have got to do my best and except it.

I look at the forum everyday and I know a lot of you are very knowledgeable.

Thanks in advance for your time in reading this, sorry it is so long.

 

[himtoo]

Hi @scarfmad
welcome to the forum !!

as you have only been diagnosed pretty recently ( approx 5 months )
you could still be sporadically producing some of your own insulin ( honeymoon period ) , which makes it harder to keep blood sugars in range.

You should try and keep in good contact with your care team for support too.

I would recommend you getting the book -- Think Like A Pancreas.

 

[noblehead]

Hi @scarfmad and welcome to the forum

We have members on the forum who were diagnosed with type 1 in the 50's so your not alone here, with regards to your evening bg levels have a word with your DSN and show them your bg diary and hopefully they'll advise further.

 

[scarfmad]

Thanks for your reply, I saw my diabetic nurse last week but she said just stick with what you are doing and I will see you in 2 months time. The dietitian rings me once a week and keeps altering my ratio for insulin.

 

[azure]

Welcome @scarfmad

Yes, it's surprising how many adults are diagnosed with Type 1, sometimes even at a much older age than you'd expect.

I agree with the comments about the honeymoon period. When I was first diagnosed I was only on 1 unit of long acting insulin and my sugars could be quite erratic. It can be a stressful time because things seem to vary from day to day.

If you're consistently having higher sugars in the evening, it may be worth speaking to your DSN about adjusting your ratio for your evening meal.

Don't worry. It can be overwhelming to,start with. But once you get familiar with how it works and learn more, then it does become easier I second the recommendation of Think Like A Pancreas. It's a great book that I still look at years after diagnosis.

 

[scarfmad]

Hi @scarfmad
welcome to the forum !!

as you have only been diagnosed pretty recently ( approx 5 months )
you could still be sporadically producing some of your own insulin ( honeymoon period ) , which makes it harder to keep blood sugars in range.

You should try and keep in good contact with your care team for support too.

I would recommend you getting the book -- Think Like A Pancreas.

Thanks very much, I did look at the book with a view to buying it.

 

[Seeker2016]

Julie, I was diagnosed at 45, and it seems that its all I ever think about these days. I find it terribly stressful, but all the posts on the forum reassure me that it gets better. I am more willing to believe them since the posters have lived with it a long time, certainly longer than you or me. I do hope it gets better for you.

 

[scarfmad]

Julie, I was diagnosed at 45, and it seems that its all I ever think about these days. I find it terribly stressful, but all the posts on the forum reassure me that it gets better. I am more willing to believe them since the posters have lived with it a long time, certainly longer than you or me. I do hope it gets better for you.

I hope it continues to get better for you, I am dealing with it day by day and I am reading as much as I can as well as looking on here. What I find difficult is there are no set rules, so it is a case of being armed with the right information I suppose. The last few months have just been filled with everything to do with diabetes, like everyone else.
Thanks for the reply.

 

[Pete_FMT]

Hi Julie
I was diagnosed type 1 3 weeks ago at the age of 45. I'm fit, healthy and not overweight (pretty trim now that my undiagnosed type 1 dropped a stone off me!). Having good days and bad days (today not good as went hyper for no good reason!!!!). Anyway I found think like a pancreas great help, helping to give hints as to what some of the rules might be. Also this forum is great, particularly in my low moods, like today, in reminding me that I'm not alone and things will get better. Hope you manage to balance your bg well soon. I know exactly how you feel.

 

[scarfmad]

Hi Julie
I was diagnosed type 1 3 weeks ago at the age of 45. I'm fit, healthy and not overweight (pretty trim now that my undiagnosed type 1 dropped a stone off me!). Having good days and bad days (today not good as went hyper for no good reason!!!!). Anyway I found think like a pancreas great help, helping to give hints as to what some of the rules might be. Also this forum is great, particularly in my low moods, like today, in reminding me that I'm not alone and things will get better. Hope you manage to balance your bg well soon. I know exactly how you feel.

Hi Pete,
Thanks for the reply, I have just ordered the book off Amazon so that will be something else to digest. I have had a few hypos but I am fortunate as I get the sweating and shakes and that very odd feeling, so I can act quite quickly. My moods have changed a lot but my DN says "it is your age Julie" so that doesn't really make you feel much better. As I said in my post I hardly had any problems before this, when I read this forum I do realize how fortunate I really am compared to a lot of diabetics, but there are some days probably like you that you don't feel fortunate.
I do miss the odd take away, but I wouldn't dare to guess the carbs in it.
Hoping you have more good days than bad days.

 

[Neohdiver]

Hello,
This is my story so far my name is Julie and I am 52, I wondered if anyone could give me any advice.
May this year got diagnosed with T 2 and was given Ziclaseg 30 mg, went back a couple of weeks later as I felt no better and was sleeping about 10 hours a day, if not sleeping just drinking water. The nurse had a word with the doctor and decided as my BG readings were in the high 20's I was T 1, I came away with appointment to see the nurse that dealt with Type 1.

I don;t think you can distinguish between T1 and T2 based on the level of your BG readings. If you are uncertain that the diagnosis is correct, you might ask them to do a test for GAD antibodies - that is the test I've seen most frequently used to distinguish between the two - and they can have identical presentations. (Althought if the incident when your mom found you and took you to the hospital was diabetic ketoacidosis, that's a pretty good indication the diagnosis is correct.)

 

[Pete_FMT]

Generally good days thanks, but really see the mood swings on the bad ones that match bg pretty well. The 'carbs and cals' app has been pretty good for carb estimating and have had a couple of Chinese takeaways, the odd glass of red wine (lower carbs than white) and an occasional beer since being diagnosed - after all you have to have a few sensible treats. The book will help you to understand how to do that. Best of luck with your blood sugar journey. Pete

 

[scarfmad]

I don;t think you can distinguish between T1 and T2 based on the level of your BG readings. If you are uncertain that the diagnosis is correct, you might ask them to do a test for GAD antibodies - that is the test I've seen most frequently used to distinguish between the two - and they can have identical presentations. (Althought if the incident when your mom found you and took you to the hospital was diabetic ketoacidosis, that's a pretty good indication the diagnosis is correct.)

Hello,
Thanks for your reply, yes it was diabetic ketoacidosis that was stated on my discharge paperwork. Perhaps it is wishful thinking.
All the best
Julie

 

[scarfmad]

Generally good days thanks, but really see the mood swings on the bad ones that match bg pretty well. The 'carbs and cals' app has been pretty good for carb estimating and have had a couple of Chinese takeaways, the odd glass of red wine (lower carbs than white) and an occasional beer since being diagnosed - after all you have to have a few sensible treats. The book will help you to understand how to do that. Best of luck with your blood sugar journey. Pete

Thanks very much and I wish you all the very best.

 

[Daibell]

Hi. The Dr was wrong - T1 diabetes in middle age is quite common it's just that the medics (and DUK) don't understand that and place everyone in the T2 group. I was diagnosed at age 60 with 'T2' but am actually a Late onset T1. The important thing is to ensure your Basal balance is right before you adjust your Bolus ratio. It may well be that it is right already. I inject my Basal late at night and was told, sensibly, to check that my morning fasting was between 5 and 7. I also find as a rough guide that if I don't eat for at least a few hours during the day and my blood sugar drifts up or down a lot then my Basal may need a tweak. The meter check just before a meal and 2-3 hours after a meal should guide you on the Bolus ratio.

 

[Deleted Account]

There is a belief that most people with Type 1 diabetes are diagnosed as "children or young adults". However, recent research (see https://blogs.diabetes.org.uk/?p=5184) shows that 57% are diagnosed aged 20 or older and over 12% diagnosed aged 50 and above. This myth (not helped by calling type 1 "Juvenile Diabetes") seems to be very difficult to bust.
I was diagnosed in my 30s and have been frustrated by the lack of support for newly diagnosed type1 adults - there's lots of information about getting assistance for your children at school (which there should be) but very little about car insurance and paying (or rather not paying) for prescriptions if you are treated with insulin.
It is difficult thing to get your head around whatever age but ignoring the things that newly diagnosed adults have lived with for many years and are likely to change is not helpful.

Apologies @scarfmad for ranting on your post. I really wanted to say that you are not alone. There will be some challenges but there are plenty of us who live with type 1 as adults (including those diagnosed as children) who just get on with our lives.

Personally, I am grateful I was diagnosed later in life so I was able to go through my formative years with only the usual teenage anxes (sp?) and have the maturity to fight against the complications diabetes can bring.

 

[notria]

Hi, I was wrongly diagnosed as T2 at age 54 and now T1 at age 56. This later diagnosis was based on the GAD test which I insisted on as I didn't fir the T2 profile. Not on insulin yet as metformin and very low carb diet is doing the trick.

You are not alone. Get a continuous blood sugar monitor such as the Freestyle Libre (if only for a month) to discover what different foods do to YOUR blood sugar.

 

[scarfmad]

There is a belief that most people with Type 1 diabetes are diagnosed as "children or young adults". However, recent research (see https://blogs.diabetes.org.uk/?p=5184) shows that 57% are diagnosed aged 20 or older and over 12% diagnosed aged 50 and above. This myth (not helped by calling type 1 "Juvenile Diabetes") seems to be very difficult to bust.
I was diagnosed in my 30s and have been frustrated by the lack of support for newly diagnosed type1 adults - there's lots of information about getting assistance for your children at school (which there should be) but very little about car insurance and paying (or rather not paying) for prescriptions if you are treated with insulin.
It is difficult thing to get your head around whatever age but ignoring the things that newly diagnosed adults have lived with for many years and are likely to change is not helpful.

Apologies @scarfmad for ranting on your post. I really wanted to say that you are not alone. There will be some challenges but there are plenty of us who live with type 1 as adults (including those diagnosed as children) who just get on with our lives.

Personally, I am grateful I was diagnosed later in life so I was able to go through my formative years with only the usual teenage anxes (sp?) and have the maturity to fight against the complications diabetes can bring.

Hello,
You carry on ranting I don't mind, as soon as I was diagnosed I got stuck in with finding out as much information I can. Because I am the only person that can help myself so I just deal with it day to day. I look at this website everyday for information, as I said in an earlier reply I class myself very fortunate when you read some peoples posts.
Thanks for your reply.

 

[carog]

Hi very similar position to yourself, diagnosed in Dec 2014 at age 51, emergency hospital admission with DKA. Many people I came across in health care assumed I had been T1 for an age and I couldn't shift that view, so no one started from basics with me. People would breeze into my hospital room and say eg great news you are out of DKA (I was glad it was great news but didn't know why) or your BG is xx (at that point I couldn't even work out what BG stood for let alone know whether it was a good or bad number).

Took an age to see anyone for any help with insulin doses and adjustment initially. As I am sure you have found online forums etc are really great, generally speaking everyone is supportive and you can learn a lot from them. I found in the early days (now know it to be the honeymoon period) I could drop 10 mmol in 20 minutes no one really explained anything to me and I remember thinking how can I ever aim to keep between 4 and 7 when I can go down 3 times that band in 20 mins!! All very scary and lots of sleepless nights in the beginning but it does get better - honey moon only lasted about 3 months (so at least the going from 6 to 26 and back to 4 etc all in an hour stops).

Like others have said there doesn't appear to be any real plan for inducting those diagnosed as an adult in what they need to know. To tell you to count carbs and adjust your insulin from day one and then tell you, you can't get any "education" in this new way of life until you have been at it for 6 months still seems to me to be madness. As someone mentioned above Freestyle Libre is great to give you some insight into what is going on and the specific effect of foods and insulin. The DAFNE course which I am now doing seems like it would be really good much sooner after diagnose, so try and get booked in for that (my problem is that I have developed "bad habits" - to stay sane and alive and feel that now I am being asked to throw the few things that do work to some degree out of the window ..).

Two years on diabetes still takes up far too much much of my time one way or another but I too am grateful I got it in later life and when technology makes it easier to manage. Now the rapid rises and falls in "BG" have stopped I feel much better, still get mountains but now slow descents which don't cause the same level of feeling rubbish. Hope various posts on here have helped to some degree, keep reading, talking and posting and it will get easier.