Dont know why I am here really, just need to be

[KindaScared]

Hi

Sorry this is long and I am sorry I dont write well

I have made a new name to post this, why? I am not really sure, I suppose I am embarrassed to be failing, I havent posted on a forum for years as I felt like I knew everything, I have been Type 2 for about 6/7 years, I was diagnosed in the mid 20s mmol and went to work on that, I lost alot of weight and excercised, I went low carb and "cured" myself, the past few years however I have kind fallen off the fanatical wagon and started to live more normally or perhaps sustainably, I eat cereal for breaky, normally blueberry wheats as the dogs likes them and he gets a few lol, I never eat sugar or sweets things, no chocolate, crisps, cakes or biscuits etc. I basically eat quite well, my main meals tend to be steak or spaghetti bolognaise or meat and veg etc. just normal food but without the sweet treats or puddings, this is all very fine for me, I dont miss sugary stuff at all, it all feels very normal, I have put on a bit of weight but no where near where I was in at Diagnosis and I would be happy to live life like this but....

My bloods are pretty crappy, I tend not to test as it just makes me feel bad, I am never below 12mmol I can not eat for 10 hours and be 18mmol, when I do eat I can go up to 25, for example I tested 2 hours after my cereal today and it was 19.7mmol, I know this is too high and it does worry, My dad died at 67 of a heart attack and I dont want to go the same way, I really need to pay my mortgage before I die so the family isnt left in debt lol

I have an infection on the edge of my toenail that hasnt healed in weeks so I went to see the nurse yesterday and this is the scarey part, she gave me antibods for the toe, no worries there but she has made an appointment for me to see the speciallist on Friday about starting on insulin (insert appropriate emoji lol)

I currently take X4 Metformin and X1 Saxagliptin (spelling?) I also take blood pressure meds

She has said the Insulin was the way to go and the specialist person I think is going to show me what to do

Can i refuse to take it? should I refuse to take it? I drive alot for my job, will that be ok?

I kind of feel like if I went crazy low carb again I may be able to lower bloods but I would have to be 30g a day or it wont work, can I face that again? is that better than insulin?

She has done a GAD blood test and sent it off but im pretty sure I am type 2

Sorry for this post, I have all this stuff spinning around in my head and had to get it out

Thankyou

 

[stephknits]

Hi kinda, so glad you felt able to post on the forum. It doesn't sound like you have come off the waggon at all, like you say, you are eating a more long-term sustainable diet. I realise insulin sounds scary, but it would make a huge difference to your blood sugars and in turn you will feel so much better.
I was wrongly diagnosed type 2 and went around with high bs for 9 months, and felt rubbish all the time. Starting on insulin was a revelation! I live in the middle of nowhere and drive every day. Whilst you do have to be a bit careful and be prepared with hypo treatments and test before you drive, it is fine. I would give it a go, if you really can't cope, you can always re evaluate the situation. Also are they thinking of mixed insulin or Multiple Daily Injections?

 

[KindaScared]

Hi Steph

Thankyou for replying

I will be honest my brain kind of fuzzed over when she said the word insulin but I think she said we would maybe start off with a once or twice a day injection and see how that goes, if that is even a thing? I watched a video on injecting today, I expected the injection to be like the flu jab little thing but it was like an actual injection which surprised me, sorry I know that sounds silly, you have made me feel a little more positive about it though, it sounds like its not all bad.

Thankyou

 

[Mark T]

Insulin isn't the end of the world and it will bring your BG's down and make you feel better.

You can still drive with insulin, I recall there are some category limitations (coaches, buses, large HGV's) - but many things are ok. My father used to drive 7.5 tonne lorries on insulin.

 

[everydayupsanddowns]

Hello @KindaScared

Welcome to the forum! Great to have you here to share your experiences, worries and successes.

Sounds like you worked really hard to tackle your elevated BG levels before, but in a way that didn't really suit you, or that you didn't find sustainable long term.

I'm really pleased that the nurse has sent off a GAD test, which *might* help to clarify your category (though they are far from simple yes or no results - especially after 6-7 years). Reading your story I did immediately wonder if you were late onset slow-burning T1 (LADA) where the function of the pancreas diminishes over a long period and makes easy classification a bit tricky. Having said that there seem to be upwards of 70 different diabetes types now categorised so it is often a complex matter to distinguish who fits where.

It sounds like you find the idea of insulin quite frightening. But don't worry. If your pancreas has begul to flag (whichever type you are!) then supporting it with a little external insulin makes a lot of sense. Multiple Daily Injections would be the more flexible option IMO, they might suggest just adding in a mix or basal (background) but from what you describe I wonder if you need a more complete insulin replacement - even if your pancreas is still able to help out a little at the moment.

Lots of experienced T2 and T1 insulin jugglers here to help you get to grips with it, and your clinic may have an education course or series of one-to-one sessions they can refer you to to help you get started.

 

[KindaScared]

Thankyou for your replies

Broadly I always thought that type 1 meant pancreas meant beta cells had failed and you didnt produce insulin so needed to inject, where as type 2 meant you still produced insulin but your body coudnt use it properly to extract glucose from the blood, im very confused by the cross over, the nurse did say my pancreas wasnt doing its job and the insulin would help it out which sounds like what you have said above, so assuming I am not type 1 (I am assuming this because she tested my pee and said there was no sign of keytones) then there could be a somewhere in between? pancreas is not producing enough insulin? or could it be that my body has got really bad at dealing with the glucose, therefore the extra insulin would flood the system and force it to get rid of the sugar?

Sorry does this all sound dumb?

 

[Ralph-YK]

Hello Kinda. I'm sorry you have found it difficult to manage longer term. Finding a long term diet can be a problem.
There's only a little advice I can give. Unfortunately you probably know it already.
Instead of ultra low carb, would slightly lower to medium low carbs be any help.
Self testing. Repeated high figures can be scary. However, self testing can be used to help adjust diet. How do you fell about bacon or eggs for breakfast?

 

[Ralph-YK]

Broadly I always thought that type 1 meant pancreas meant beta cells had failed and you didnt produce insulin so needed to inject, where as type 2 meant you still produced insulin but your body coudnt use it properly to extract glucose from the blood,

That's my understanding.

the nurse did say my pancreas wasnt doing its job and the insulin would help it out

I believe that for some T2, the pancreas can struggle to produce insulin. This would be for different reasons than T1.

 

[KindaScared]

I am not frightened of the actual injections, i'm frightened of the thought of injecting stuff into me when I don't know what i'm doing, how you work out how much and when, how could I do it when i'm out.

This sounds ridiculous talkng about this to people that have had to do this for years, i'm just being a wuss, sorry

 

[KindaScared]

Thankyou for replies

yes the bacon and eggs is yummy but at 5am when I get up, I couldn't face it, when I was very low carb I used to eat natural greek yogurt with berries which I loved, I have recently tried this but it does very little if anything to lower my numbers, I think I need to go ultra low for it to work and I am not sure I can face it, although maybe I just need a slap round the face, trouble is I am going back this friday and that does not give me much time to start it and see any good effects, I just dont think I could bring myself to do it again, some aspects of the diet I loved but I am on the road a lot and found that quite tricky, I used to get quite irritated by people that taIked like I am now talking, this is embarrasing!

 

[everydayupsanddowns]

Thankyou for your replies

Broadly I always thought that type 1 meant pancreas meant beta cells had failed and you didnt produce insulin so needed to inject, where as type 2 meant you still produced insulin but your body coudnt use it properly to extract glucose from the blood, im very confused by the cross over, the nurse did say my pancreas wasnt doing its job and the insulin would help it out which sounds like what you have said above, so assuming I am not type 1 (I am assuming this because she tested my pee and said there was no sign of keytones) then there could be a somewhere in between? pancreas is not producing enough insulin? or could it be that my body has got really bad at dealing with the glucose, therefore the extra insulin would flood the system and force it to get rid of the sugar?

Sorry does this all sound dumb?

Not at all! I think that's how I understand it too. In (classic) T1 the immune system begins to attack the beta cells in the pancreas and after a certain number have been destroyed the body can no longer metabolise carbohydrate (and cope with glucagon ourput from the liver) BGs rise, symptoms develop and T1 is diagnosed. The newly Dx T1 then often has a 'honeymoon period' where their pancreas still helps out a little, but more or less then need total insulin replacement. In some T1s (even after 60-70 years) there are still signs of internal insulin production and autoimmune antibodies, so there are some cases where beta cells seem to be continually produced and destroyed. But in other cases (more commonly in those diagnosed earlier in childhood I think) the beta cells all get blitzed and the autoimmune antibodies disappear.

Typically in T2 it seems to be insulin resistance. More and more insulin needs to be produced as the body can't use it properly. In some of these cases the beta cells seem to burn out in time and injected insulin is needed, but often in significantly higher doses than a T1 would usually see as there is still resistance to the injected insulin.

LADA (sometimes called T1.5) appears in adulthood and my understanding is that the betacells are destroyed by autoimmune processes, but much more slowly.

I also saw a presentation this year by a Dr from the states who said that one of the confusing things for clinicians is that since more people are carrying extra weight, it is no longer as simple as more weight = T2, skinny people = T1. While weight loss is sometimes a symptom of T1, the diagnosis landscape has got more complcated in recent years.

The lack of ketones might be an important factor though, and the GAD test should help.

 

[KindaScared]

Thank you Mike

 

[trophywench]

Give me an insulin pen 'jab' any day over a flu jab - the first one uses an extremely thin needle only 4 or 5mm long whereas the flu jab used a thicker, longer needle.

The pen looks bigger, true - but the amount you actually need to inject at any one time is teeny. You just get more of it 'in the package' because we need to use it long-term, is all.

 

[Ljc]

Hi Kinda, welcome to the forum.
Imo it’s not only vital that our diet must be sustainable long term it needs to be enjoyable too.

I’m speaking as a T2 on insulin. Please don’t be scared of it , it’s helped my control enormously and I feel oh so much better in myself, you will too !!!

Long story short 🙂
I started of on Metformin, it worked well for years, then not so well .
Gliclazide was next, I was soon on maximum dose with little joy.
Eventually I went onto to MDI (multiple daily injections) it’s a long acting (basal) Insulin , given once or twice a day plus a Rapid (bolus) Insulin for mealtimes

Yes MDI does mean more injections but speaking personally imo it’s far more flexible than the mixed insulin’s
It means I don’t have to eat if I don’t want to, I can have meals anytime I wish and if I’m eating out , being naughty etc I can cover the extra carbs with a bit more bolus insulin.
I have little knowledge of mixed insulin’s but have heard/read that they are not so flexible.

Personally I wouldn’t dream of using public/restaurant toilets to test or inject in ,too many germs for my liking but I know some people don’t feel comfy injecting very discretely at the table.

Our needles are very small mine are only 4mm in length, it’s nothing like a proper injection or a flu jab.

If you do need to go on insulin (I call it my go juice ) don’t panic ok, the nurse will guide you through the basics , we too can help explain things your unsure of, reassure etc. The people here helped me enormously when I first went onto MDI.

Imo Whatever type of diabetes we have, the most important thing is to be on the treatment that works well for us.
Another is, our diet shouldn’t be so restrictive that we can’t sustain it .

If you should join our happy band of Insulin junkies, remember you are not alone we’re only a text away and our shoulders are broad and strong
xxx

 

[Lisa66]

I am not frightened of the actual injections, i'm frightened of the thought of injecting stuff into me when I don't know what i'm doing, how you work out how much and when, how could I do it when i'm out.

This sounds ridiculous talkng about this to people that have had to do this for years, i'm just being a wuss, sorry

Hi @KindaScared

Others have addressed the technical stuff, so phew. I just wanted to say there is absolutely no need to feel embarrassed. Diabetes throws curve balls to all of us from time to time, it's just the nature of the beast, we just have to readjust how we deal with it. Being anxious doesn't help with our control either, so we go round in circles there.

It's not ridiculous to feel scared of something new, it's just natural, you're human! Any thing new can be scary...diabetes related or not.

If you are put on insulin you won't be sent home without all the information and support you will need. Sounds like you already monitor your own blood sugars, so there'll be a bit more of that so everyone can see how you get on. Your nurse sounds like she's on the ball. Let them know exactly how you feel, go armed with a pencil and paper and list of all the questions and concerns you have, no matter how small or silly you may think they are...they are important to you. Remember your team will work WITH you and aren't there to judge you...they're there to help you get to where you need to be.

Hopefully whatever new plan you are given will help you to feel better and more positive very soon, but don't be disheartened if it doesn't happen over
night...there'll probably be a bit of tweaking but you'll get there! As @stephknits says, starting insulin was a revelation.🙂

 

[KindaScared]

Wow guys, I need to change the title of this thread to "I am here because you are all so very kind and reassuring"

I cant stop thinking about this, feels like being diagnosed again

Thank you so much!!

 

[KindaScared]

The plot thickens lol

I received a text asking me to call doctors, I called, the receptionist said the doctor needs to call you regarding your blood results, he will call tomorrow after 11am, I had HBA1c and GAD yesterday, I know the GAD takes 3 weeks (nurse said) so I assume its HBA1c, I asked if she could tell me the number and she said the doctor will explain everything tomorrow, am I in my rights to go to the surgery and ask for my results? its only up the road from my house and I am kind of anxious to hear the number, anyone know if thats ok to do please?

 

[everydayupsanddowns]

Yes absolutely @KindaScared - you can go and ask for a printout if the results for your own records. My surgery ask a small charge for this (20p per sheet).

 

[christophe]

Wow guys, I need to change the title of this thread to "I am here because you are all so very kind and reassuring"

I cant stop thinking about this, feels like being diagnosed again

Thank you so much!!

KindaScared from kindamuddlingalong..
The insulin injection scenario was like a bomb going off in my world but without a background of thinking about my food and what it all meant.. the how much and when questions resolve themselves over time but you have a background of thinking about your carbs and your own personal reaction to them. The insulin is another figure in the equation, at least you know a couple of the other figures!. . my thing below that says needles and numbers, I hated them both.. still do I guess but instead of avoiding I have to use them to my advantage.
The single biggest help was finding out from others what it all means, and that was on these pages.. you are already a couple of steps forward..

 

[Ljc]

The plot thickens lol

I received a text asking me to call doctors, I called, the receptionist said the doctor needs to call you regarding your blood results, he will call tomorrow after 11am, I had HBA1c and GAD yesterday, I know the GAD takes 3 weeks (nurse said) so I assume its HBA1c, I asked if she could tell me the number and she said the doctor will explain everything tomorrow, am I in my rights to go to the surgery and ask for my results? its only up the road from my house and I am kind of anxious to hear the number, anyone know if thats ok to do please?

It’s pperfectly understandable that your worried and you need to know the results of the test, I would be the same ! However if I were you I’d hang on till the GP phones, though your fingernails are likely to be bitten down to the quicks.
Please let us know how you get on.