Newly diagnosed with type 1 [emoji20]

[Abz abdul]

Hey everyone just been diagnosed with type 1 diabetes at the end of June and finding it really hard and depressing. I had the symptoms couple of weeks before I was admitted to hospital, symptoms included severe thirst, didn’t want to get out of bed, pain in the kidney area etc. I know I should’ve checked in earlier but wasn’t the hospital type and thought the symptoms were just a man flu coming on. Eventually my partner had to call an Ambulance and I went in with DKA and a blood clot on my left kidney and type 1 diabetes which I later found out anyways to cut a long story short I was discharged a couple of weeks ago and don’t think the support is enough or maybe I don’t knw where to find it. The diabetes centre just give u a bunch of booklets n send u on ur way and the GP don’t knw what they’re doing half the time. Just want some advice on where I can go or what to do, even if it’s just some place where people go to and talk about their life’s and how it’s changed dramatically (in my case) who have similar illnesses. Thanks tke cre ppl

 

[Diakat]

Hi @Abz abdul
Here is a good place to start.
Yep it’s a total mess up mentally at first, and having DKA is tough on you physically but it does all get better.
I’m going to tag some T1s to say hi. @Jaylee @Knikki @therower @porl69

 

[Prem51]

Welcome to the forum @Abz abdul. I'm Type 2 so I don't know much about Type 1 but there are a lot of T1s on here who will be able to give you advice and support.

 

[Muneeb]

Hey everyone just been diagnosed with type 1 diabetes at the end of June and finding it really hard and depressing. I had the symptoms couple of weeks before I was admitted to hospital, symptoms included severe thirst, didn’t want to get out of bed, pain in the kidney area etc. I know I should’ve checked in earlier but wasn’t the hospital type and thought the symptoms were just a man flu coming on. Eventually my partner had to call an Ambulance and I went in with DKA and a blood clot on my left kidney and type 1 diabetes which I later found out anyways to cut a long story short I was discharged a couple of weeks ago and don’t think the support is enough or maybe I don’t knw where to find it. The diabetes centre just give u a bunch of booklets n send u on ur way and the GP don’t knw what they’re doing half the time. Just want some advice on where I can go or what to do, even if it’s just some place where people go to and talk about their life’s and how it’s changed dramatically (in my case) who have similar illnesses. Thanks tke cre ppl

Welcome to the forum, you really couldn't have come to a better online forum to discuss and learn from.

I've been type 1 diabetic for going on 20 years, was diagnosed at 8, similarly by going into DKA. TBH I was too young to fully understand the implications of diabetes and my parents managed it through the majority of my teenage years. However the more I started to learn about it, the more confident I became. To now where I manage it extremely well without most people knowing I even have diabetes.

It has never stopped me from doing anything I wanted, went to uni, graduated with excellent results, work in the profession I wanted. I know it may seem overwhelming at first, but give it time, don't try and overindulge.

I'm not sure what treatment you have been put on or whether you are still in the honeymoon phase, but you want to focus on getting the medication right and keeping your glucose levels as close as possible to normal range, the rest will fall into place.

If you have any questions please feel free to ask.

 

[Route 66]

Hey everyone just been diagnosed with type 1 diabetes at the end of June and finding it really hard and depressing.

Welcome to the Club.

So sorry you are feeling so low at the moment. We have all been there and still are some days. It will start to get better as they/you start to manage your symptoms.

Hope things start to improve soon for you.

 

[porl69]

Hello @Abz abdul and welcome to the forum from another long timer (just the 48 years for me)

 

[Abz abdul]

Thanks everyone for your reply’s really appreciate it, @Muneeb yes I’m on novarapid insulin 3 times a day and I think the other ones called toujaeo or something and that is every 24 hours. I’ve just finished my course of antibiotics and still on long term blood thinner medication. Is it normal for my body to feel weak and for my arms and legs too? Stomach also feels so soar and painful from putting needles in from the insulin. Walking is even a mission now as my legs can’t hack it anyways seems like I have to live with it and start to learn how to deal with it rather then thinking why is it me etc...... My GP said that I was lucky to come out of the hospital alive as my condition was seriously bad when I went in. Thanks ppl

 

[KesLouise]

Hello it’s tough isn’t it? Had a recent diagnosis myself and finding it difficult to adjust. The forum seems to be a great place to connect with people and get good advice. I hope you start to feel emotionally better soon, totally get how you feel

 

[JAT1]

Welcome from another type 1, diagnosed little over 1 year ago. There's alot to learn about carbs, carb counting, controlling blood sugar, matching insulin to food intake but it gets easier and easier as time goes on. If you grab your skin and lift it so that about 1 inch of it is squeezed between your fingers and inject there, you may not even feel the injections. That works for me.

 

[Robinredbreast]

Hi and welcome to the forum. It can be a bit of a shock at first, with a lot to take in too, but you will get there. There are a few of us with quite a few years under our belts and living life to the fullest, I even had my daughter at aged 42 1/2 years, that was my proudest diabetes moment ever
Take care

 

[therower]

@Abz abdul . Welcome to the forum. Type 1 diabetes....definitely life changing.
It gets easier and becomes fairly easy to control and have a great life. Testament to that is obvious from some of the esteemed posters above. For what it’s worth I can offer 28yrs to the mix.
As you can probably see, a lot of focus is on diet. Carbs in , insulin in and trying to keep your BS in a certain place.
As you have already pointed out, diagnosis can be depressing. Type 1 diabetes is a very clever little rascal in that it not only affects us physically but given the chance can hit us hard mentally.
For me, acceptance from day one has been key. If you can accept being type 1 you’re half way there.
For me living with diabetes is 80% mental/ emotional, 15% medication and 5% just winging it and not worrying.
Good luck and any questions just ask us.

 

[Jaylee]

Hi @Abz abdul ,

Welcome to the forum.

I've been T1 fer a long time. Take any information in bite sized chunks. Feel free to ask anything.

Life ain't "game over." Just a slightly different set of rules thrown into the lid of the box..

 

[Daibell]

Hi and welcome. You need to ascertain who will be managing you i.e. the hospital or the GP. It is often the hospital when on insulin but my surgery manages me and my nurse is excellent. As a diabetic you should be given a full review at least once a year and as you are new it should probably every 3 months for a while. The review should include a blood test which you need to arrange a week or so before the review. Have you been told how to carb-count the Novorapid to match the amount injected for the carbs you eat? You should have this explained within the next few weeks if not already. You may also need to adjust the Basal (24/hr) insulin. The important thing now is to agree who is a manging you and agree the next review date.

 

[Colin Crowhurst]

As a similar newly diagnosed I totally agree with all the points made before, and would add a couple of (hopefully) relevant points of my own.
1. Don't expect perfect results, just watch the trend and it will keep moving hopefully downwards!
2. Don't forget to enjoy yourself, its not THAT life-limiting!
3. Expect the occasional bad day and don't panic things happen and sometimes the body responds differently than we expect!
4. Tell people, they will invariably be supportive when they know what is happening.

Feel free to drop me a message anytime always happy to reply; the only stupid question is the one you don't ask!

 

[Route 66]

Thanks everyone for your reply’s really appreciate it, @Muneeb yes I’m on novarapid insulin 3 times a day and I think the other ones called toujaeo or something and that is every 24 hours. I’ve just finished my course of antibiotics and still on long term blood thinner medication. Is it normal for my body to feel weak and for my arms and legs too? Stomach also feels so soar and painful from putting needles in from the insulin. Walking is even a mission now as my legs can’t hack it anyways seems like I have to live with it and start to learn how to deal with it rather then thinking why is it me etc...... My GP said that I was lucky to come out of the hospital alive as my condition was seriously bad when I went in. Thanks ppl

Just be gentle with yourself. As well as your physical symptoms, you have to accept this emotionally. You will go through a lot of ups and downs. Feeling tired and weak and aches and pains s just one of the many symptoms that most of us have experienced at the beginning. Remember that your blood sugars have probably been high for a long while. As you bring them down, things will improve.

Your stomach will get sore and bruised by the daily injections, but over time I found that it does get better. It is not the nicest of things, but just think how it is helping you. Hopefully they may not be forever.

Good luck on the start of your journey. You have found the right place to get support and ask any questions.

 

[Muneeb]

Thanks everyone for your reply’s really appreciate it, @Muneeb yes I’m on novarapid insulin 3 times a day and I think the other ones called toujaeo or something and that is every 24 hours. I’ve just finished my course of antibiotics and still on long term blood thinner medication. Is it normal for my body to feel weak and for my arms and legs too? Stomach also feels so soar and painful from putting needles in from the insulin. Walking is even a mission now as my legs can’t hack it anyways seems like I have to live with it and start to learn how to deal with it rather then thinking why is it me etc...... My GP said that I was lucky to come out of the hospital alive as my condition was seriously bad when I went in. Thanks ppl

Don't worry it will only get better. Aches and pains can be as a result of what you have experienced, but these will hopefully go away as better control is achieved.

Novorapid (bolus) insulin and Toujeou (basal) insulin are common insulin's which a lot of people use. Generally novorapid is used based on carbohydrate counting for meals, so you take x amount of units for y amount of carbs (this is different for most people so its a bit of trial and error). Whereas basal is used to basically overcome the general glucose release by the liver. But before you can carb count you need to ensure the basal insulin is correct by doing a fasting basal test (it should remain relatively constant over a period of time without food or other influences).

Once you have the basal right, the bolus is just adjusted depending on what you eat, but if you are still in your honeymoon period (i.e still producing some insulin) its best to talk to your DSN as they may have other ways of controlling it at the moment.

In regards to soarness, I overused my stomach for many years and failed to change needles and ended up with lipohypertrophy (fat deposists) that is very hard to get rid of, if at all. This can lead to erratic insulin absorption as well as not looking great. The best thing is to make sure you are rotating injection sites with a new needle every time, you can use your legs, buttocks and arms as well as your stomach for injections (just bare in mind that insulin is absorbed at different rates depending on injection site - but this shouldn't be a major concern for you at this stage).

Remember its a marathon not a sprint, the more time you put in now to understand and improve control, the easier it becomes over time. Even after 20 years I'm still hit with stuff that gets me down, we can't control diabetes perfectly because the means we have aren't perfect, we can only aim to be the best we can.

 

[Route 66]

Injection site should not be sore and bruised.
If this is happening...
- check you are using the smallest available needles
- punch in you need to (few people do)
- change needles every time
- rotate your sites
- if you still have problems, talk to your diabetes team.

Thanks for the good advice Helen.

I have been on the injections since end of May, and I am using BD Viva 4mm needles. Can you get smaller?

I found that for the first 6-8 weeks, they caused yellow bruises around the tummy and over the three months that I have been on it, they cause small hard lumps sometimes. I spoke with DN at one of the fornightly reviews and she said it was quite normal. Should I not be experiencing this?

I use a fresh needle every time and rotate the site every time.

I must admit that I put the needle in slowly and gently rather than punch in. Maybe this could be the problem. I will take your advice and give it a try.

Many Thanks again.

 

[Abz abdul]

Thank you very much, everyone’s advice will really help me in the coming future.

 

[Route 66]

Hi Helen

Many thanks for some sound advice.

Have you tried pinching before injecting. This used to be the advice when needles were longer (they were 8mm when I started) and I was told I didn't need to pinch with the smaller needles. However, I found I did and this helped me a lot.

I will try this

I would get some bruises if I hit a blood vessel when I injected. This was not every time and it was not painful ... just not ideal if I wanted to wear a bikini.

I will try to avoid a bikini


I definitely did not experience any hard lumps. I understand this is possible when you are injecting larger amounts of insulin but my doses are relatively small. The OP is newly diagnosed T1 so likely to be in the honeymoon peeriod so on small doses of insulin.

I am on 26 Units AM and 16 Units PM

I believe injecting slowly is the advice rather than fast. I think this gives the insulin time to absorb.
If you expeerience problems with larger doses (e.g. basal dose), I know some people split their dose into two injections so they are not injecting as much insulin into a single site.

I noticed you also mentioned aches and pains are likely because "blood sugars have probably been high for a while". Type 1 symptoms come on very fast. Therefore, someone just diagnosed with type 1 is not likely to have had high blood sugars for some time.
However, I find high blood sugars, even for a short time, will exaggerate any aches, pains, sniffs, coughs, etc. It has nothing to do with how long they have been high - for me, feeling an old sport injury is a sign I didn't take enough insulin with my last meal and I need a correction dose.[/QUOTE]

Thanks for the great tips. Hopefully I am being phased off insulin and on tablets in 3/4 weeks time and that day can't come quick enough. My heart goes out to those who have been injecting for many years.

 

[VashtiB]

Welcome to the forum- I'm new and a type 2 so no useful advice except to hang around on this forum and take advantage of the knowledge and experience of those here that are are willing to share and those that are willing to listen when you need to vent.