Type 1 Newly diagnosed, struggling to cope and regulate blood sugar

[DanayB]

Hi everyone,

My name is Dannia, I'm 25 and recently been diagnosed with Diabetes. May 2019 is exactly 1 year since I have been diagnosed. I have a family history of Diabetes as my father had type 1 and passed away aged 35 from the repercussions of uncontrolled diabetes. Before his death he suffered immensely, he became anorexic, blind and paralysed.

When I was diagnosed May 2018 I had hard time accepting it as a lot of my father's suffering and illness came back to memory and I was convinced that would be my faith. I suffer from depression and due to the diagnosis my depression worsened. I was diagnosed with type 2 despite my family's history with diabetes. I did the Dafne class and was put on Metformin. There was A LOT of glucose in my blood. My HBA1C was 170. I started the Metformin but reacted really badly to it. I had side effects of throwing up, nausea, trembling hands, tiredness etc. I couldn't keep anything down and I kept losing weight to the point where I was underweight and having muscle pains as well as my vision blurring etc.

I communicated all of this with my doctor who instead just put the dosage of metformin up. It wasn't until 4 months later that I fainted and had to go hospital where I discovered I had build up Ketones in my blood. I was put on a drip to get insulin in my body. After being on insulin for only about a week a lot started to change and improve in my health. The doctor that cared for me at the hospital digged deeper and so did I into my family history of diabetes and I discovered that my dad's father side of family ALL had traits of diabetes.

Since then I have been trying my best to get used to the new diagnosis of TYPE 1. I have a massive fear of needles, I still cry when I get my blood taken. So injecting myself daily has been one of the biggest struggles, I stand there for ages with the needle scared to do it. Also testing my sugar levels has also been a struggle as I have really skinny fingers and they are red and bruised constantly. I have been trying to get onto the diabetes course at the hospital but there never is any available dates and I work as a teacher so I cannot afford to miss one week of work to attend the class. I still haven't been taught how to carb count all they said was to download an app 'carbs and cals' which is great but no help because I don't know what I am doing. My blood sugar is still massively high from numbers 17 - 25 sometimes 26 sometimes even 32.

Although I have put weight on and there has been some improvements I'm still struggling.

Please help!! Any tips?

Thank you

 

[Juicyj]

Hello and welcome @DanayB

There's alot for you to deal with there, with the memories of your father and the struggle with your own diagnosis and fear of needles.

My advice is pretty simple, it's to take one day at a time, don't dwell in the past and what happened to your dad, lots of type 1's control their diabetes and live complication free. The fear of needles will improve, I had my own anxieties with needles but have moved on so much now that it's a minor discomfort now, I use distraction techniques, so focusing on a clock, singing a song etc, it works. Please also don't fixate on the future either, live in the present and do what you can do.

A good online course is https://www.bertieonline.org.uk/ to get your head round carbs.

Can you get a libre sensor on prescription ? As a teacher it's ideal as you are using a flash sensor so don't have to stop to test, so will help with anxiety about what your glucose levels are doing during the day, not as accurate as a meter but it's incredibly useful for spotting patterns which will help with your insulin management.

In regards to anxiety, try some meditation or exercise to calm yourself, CALM is a good app on the phone to do a 5 minute meditation and will help alot.

The weight and blood glucose levels will come right in time, however your team should be supporting you with insulin adjustments so please speak to them to get some support, try and get an email address for your diabetes nurse, if you use Diaconnect on your phone then you can email your readings direct and get support in managing your doses.

It will take to come right, please have some faith, happy to chat on PM too, I know how it feels to be where you are right now, so you're in the right place for support

 

[DCUKMod]

@DanayB - Are you under the care of a main hospital? Do you have regular access to your diabetes team there?

 

[Fairygodmother]

Hi there @DanayB, my you’ve been through some turmoil and I’m pleased you’ve been recognised as T1, not T2. Sound ironic? I know you don’t want to be any T at all but at least you’re now getting insulin so the only way is up.
Like @Knikki, I’ve been T1 for many years, 49 of them, and, like knikki, no complications, so it’s possible to have a long T1 life.
I’m assuming that because you mention Daphne you’re in the U.K., correct me if I’m wrong. But if I’m right then you should be allowed time off work to do the Daphne course - have a look at the DDA and the Equalities Act.
Needle fear’s not nice. Pester your team for the Tickle Flex that knikki mentions?
And Juicyj’s advice to take one day at a time is good. Try not to stress.
It’s also a good move to keep a timechart that details your blood sugar results, how much insulin you inject and the carb value of the food you eat. You can get carbs and Cals as an app and a set of scales that weighs grams helps. You can also use the nutrition information on foods - it might me worth taking a packed lunch or bought sandwiches etc to work while you do this. Like many things to do with T1 it takes a bit more time but the health benefits are more than worth the effort.
When you next see your diabetes team, and I hope you’ve got a follow up appointment booked, show them the chart. It’s what they’ll use to work out the insulin doses for food and for general living that best suit you.
Don’t panic! It’s early days. Most of us have had the rough first steps to get to grips with and most of us have gone on to lead cheerful lives.
I’m really sad that your father didn’t have the tools and support that are available now .
And hugs!
If you want to do a bit of reading about T1 then maybe have a look at Gary Scheiner’s ‘Think Like a Pancreas’.

 

[kitedoc]

Hi @DanayB, it is a shock, and you have already seen the worst that diabetes can do. From my experience, not as professional advice or opinion, just as someone who knows some of the ways health services and health professionals think ( need prodding to do so)
Thoughts for urgent troubles:
ONE: look up self-injectors, devices to fire the needle into your skin with syringe -attached AND get one ASAP
so that you can obtain however many insulin shots you need, to stay alive and get this beastie called TID
settled better, the Tickleflex mentioned above by @Knikki is one You need to inject insulin so ask, implore, demand, do whatever to get that device asap.

TWO: Grab and hold onto an even remotely competent doctor until he or she provides you with an effective insulin regime ( i cannot see once a day working well enough, can you? This is life and death, depression be blowed - use every assertive muscle and thought - fling ketoacidosis at them, push for a better deal. The blood sugar levels (BSLs) you mention are quite dangerously high from my reading of them. Health services are obligated to provide 'patient-centred care', use that buzzword as often as you need, patients rights, dangers of ketoacidosis. - until you are being taken seriously

THREE: consider eating regularly but moderately, maybe three meals per day, so that it is easier to match insulin to food. That is regular suggestion are per most initial diet guidelines. The bertieonline course gets around the waiting for some course in the future.

FOUR: ensure you are provided or pay for a blood glucose meter which reads ( with different strips)( both BSLs and ketones
That way you can better feedback to your purloined doctor what is happening

FIVE: call in supports, partner, friends, family to help, ask us anything, as often as you need to. Some of us live in the Northern Hemisphere, others in the Southern one so someone is likely yo be looking at the site at any time over each 24 hiurs. Politeness in posting is less of a concern than getting a message on line. Each if us can ge pt their beauty sleep later.
and as @Kniiki has done, he is pulling out all the stops and reserves to help you. No question, thought or idea is too daft, and in thevearly days one's memory is often not perfect so re-ask, ask anything again.

SIX: keep things as uncomplicated as you can, Libre devices, this or that course can wait until you are out of
danger, and also depression and other health issues can then be addressed more easily.

Know that treatments and undersrptandunf if T1D have improved over the years - @Knikki is doing fine after 53 years and me after 52 years on insulin - and you have the opportunity to live a great life and not suffer like your Dad.

Hold onto that as you stridevthru the first while: step at a time.

 

[Jazz97]

Hi @DanayB
As knikki said, I'm also recently diagnosed. Only three weeks in fact! I also have a phobia of needles, and at first it was taking me 30-90 minutes to.do the injection. I found that after this happening a fee times I decided that it wasnt worth getting so worked up about it, and that it would only make me feel worse. It's still not easy to inject, but it's definitely getting better. I tried the tickleflex as well, and would say give it a go. In the end I decided not to use it, but I know there are people on the forum who do.
I've been in contact with my nurse on almost all weekdays as they're still trying to get my dosages right, and my levels are still going quite high at times, including one unfortunate moment on Sunday when I went to 25 after some evil marmalade!
If you're not in contact with a diabeties nurse, then see if you can get in touch and tell them what's bothering you and about your high blood sugar. It could be that they want to change your dose if you're on a fixed dose at the moment. Also, if you feel like your dose isn't big enough for what you're about to eat, then dont be afraid to adjust it a little. Just be sure to keep an eye on it from going too low, that's what I've been doing.
As for your fingers, I would say at least ask about the libre, because you never know. I often struggle to get enough blood out to test, and ove now been told I can have one in a few weeks!
Also, I know this is super hard, but try not to stress about it too much. Seriously, I know that's hard, because I'm constantly stressing, but I also know that it will only make my blood sugar go up even more.
The only other thing I could suggest is cutting carbs down a little. And I love carbs, and it's the last thing I want to do myself, but if you're willing to make a change like that, then I know a lot of people have success in keeping their blood sugars down on a low carb diet. It doesn't even have to be a low carb diet, I've just been swapping out some items, for example, eating protein bread which is low in carbs, cauliflower rice instead of normal rice, etc. Try snacking on low carb high fat foods, as that will help with weight gain (I'm trying to put weight back on). So things like cheese and pork scratchings have been my go to.
I think if you can go on the DAFNE course, then do. I'm going to be doing it as soon as I can. I've only been told I cant for now because of the honeymoon period, where after insulin treatment starts, the pancreas can often start producing some insulin for a short time before stopping again.

I hope this has helped somewhat. I've taken a lot of advice from people on here who have had T1 for years, and a lot of it has been really helpful and put my mind at rest.

I hope things start looking up for you

 

[LooperCat]

Hi and welcome! Not got time to reply properly as I’m currently a teacher as well and don’t have much of a break between lessons - but your work does have certain responsibilities to you with a T1 diagnosis. We’re covered under the Equalities Act, and they have to allow you to take care of your diabetes. Got to run, not sure where my next classroom is (I do supply), but I’ll try to come back with something useful later x

 

[EllieM]

Thanks @Knikki for the shout. Welcome to the forums @DanayB, there are lots of T1s here to offer you moral support and help. Though I'm very sorry that you're one of the 38% of diagnosed as an adult T1s who get an initial T2 misdiagnosis (it's mind boggling how ignorant some doctors still are), I can assure you that your father's experience is very atypical (my T1 mother lived till she was 78 and would have lived longer if she hadn't spent most of her adult life smoking). And like @Fairygodmother I've been T1 for 49 years and have no official complications other than on again off again background retinopathy in my eyes (which hasn't so far needed treatment or affected my vision).

Is it better to be T1 than T2? Yes and no. On the plus side, you're not carbohydrate intolerant so in the long term you'll have much more freedom with your diet, as you can inject the right amount of insulin for your food. Also, you should get taken more seriously by the medical profession (ie you can get seen by a consultant rather than a GP who knows very little about diabetes. Plus, most importantly, you can now get the correct treatment for your illness so you should start to feel a lot better once you get your insulin regime sorted. On the minus side, you're going to have to learn to live with injections and blood tests. All I can say is that many people are needle phobic and most people get over it eventually. (Personally, I never watch when I'm having blood taken at the hospital ).

I know it's a well-used comment, but T1 is a marathon not a sprint. It'll take a while to get the hang of it, and it's the long term control that matters, not short term issues.

My blood sugar is still massively high from numbers 17 - 25 sometimes 26 sometimes even 32.

Do you have someone you can contact from your team? They may well want to bring those sugars down gradually (it's safer for organs like your eyes) but those figures are still alarmingly high. You've already had one diabetic ketoacidosis (DKA) event: it would be best for you not to have another and in normal circumstances they are completely avoidable. Don't hesitate to ask your team for help: that is their job and you are entitled to get every bit of help that they can possibly give you.

I'm sorry you've been hit like this. I can only imagine how upset you must be feeling. But try to remember that this is an illness that can be lived with, and there are very few things that it prevents you from doing. (Yes, astronaut is out, but you could always become prime minister. )