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Type 1 diagnosis...Well, this sucks

H

halph

Member
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10
Hello everyone, nice to meet you all. I was Diagnosed 2 days ago at the age of 39 having had some bloods taken. Sent to hospital and was 21 and immediately put on insulin, right there and then to bring me down.

It really took the call from gp for penny to drop on the signs I’m diabetic, lost mass on chest and arms the past few weeks, have felt a little fatigued in afternoon video calls at work and drinking/peeing tons (I drink lots anyway so that perhaps didn’t signal alarm bells)

I’m a very active sports player and coach so this diagnosis is going to come with some real changes to my training regime and diet which is what I find myself thinking about most.

no doubt everyone has felt the same as me, walking in that clinic, half a slap you in the face with a diagnosis which knocks you for six and next you are shown how to jab needles in your backside, and the thoughts of “this is your life now” finishing off the slap that really wakes you up to what is happening.

Im feeling a real mix of emotions these past few days and got a lot of comfort from reading some of the posts here.

I felt I needed to join just to mainly be able to seek advice on how to get best performance from my sessions while using insulin and carbs.

I’ve seen there are quite a fair few athletes in here so hopefully I’ll gain some really good advice.

Again nice to meet you all, I’m wounded with this news, but thankful that it’s came so late in life and I got to enjoy all those reeses peanut butter cups without needing insulin so far in life. ( Every cloud) other positives I hear insulin is slightly anabolic, so hopefully some gains are coming eh?
 
I highly recommend checking out runsweet.co.uk.
A site dedicated to Type 1 diabetes and sport.
This forum can be useful but its focus is more type 2 and diet.

The thing to remember is we are all different, different exercise has different impact to our blood sugars, it takes trial and error and don't expect to days to be the same. But it is very possible.
 
I’d recommend looking into the work of Dr Ian Lake - he has type 1 diabetes and has done a lot of work around sport, including participation in this challenge event:
 

Hi there. Well that sounds like it all happened very quickly. I am quite surprised that they have told you definitively it's 'type 1' after only 2 days as most of us diagnosed as adults have had to go through a fair few tests and weeks of uncertainty based on a mixture of medical ignorance (ie, we are not children) and presentation (ie, are we overweight, if so they go for type 2 and if we're slim, they um and ah for a bit and if we're lucky we get some more specific tests).

I say this not to alarm you or to gainsay what you have been told, but do you know whether they did any other tests, such as a C Peptide to measure your own insulin production, if any, or any antibody tests? Although they have given you insulin straight off, that could be because your levels were very high and it was a fast way to bring them down. I was in your position on diagnosis, other than age I did not fit the so called type 2 profile so they actually did those extra tests. Yes, I turned out to be type 1 but Consultants at the time (prior to the tests) said although they were putting me on insulin immediately to bring my levels down, they were going to wait for the results of the test as I could still be a type 2. If that was the case I could then come off the insulin and be treated as a type 2. You are unusual in that they have said immediately 'type 1', normally they say 'type 2' and then change their diagnosis further along the line (sometimes!), if you are thinking it's type 1 JUST because they have put you on insulin then that may not be the actual case which is why I would make sure exactly WHAT conclusion they have come to and why.

It is imperative that you (and they) are satisfied you have been diagnosed correctly, apologies if all the above has been done already but if not and it depends on how they've initially come to their conclusion, then I would insist on those other tests.

Welcome by the way! x
 
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Hi,

Welcome to the forum.

What insulin/s have you been prescribed?

I'll tag in @NicoleC1971 who does the fitness thing. To say hello.
 
Nice to meet you too!
Hope the adjustment phase is going well. Sounds like you're finding a few positives in this and if you think back to other daunting challenges you've faced with trepidation this one isn't the end of days though it would have been 100 years ago (discovery and isolation of insulin by Banting and Best ).
I have been diabetic for 40 years and the tech continues to improve (insulin pumps, pens, human insulin and flash glucose monitoring versus glass syringes and urine testing) though a cure is illusive given we have no idea why our autoimmune systems went rogue. I do believe that it has made me a lot more health conscious and determined but of course it has been a challenge too. I have managed a couple of marathons and work full time as a personal trainer. It hasn't been a problem though I cannot ignore the basics. Also have had 3 kids and that was a lot harder than the job on my diabetes!
I do know a lot of type 1 s who seemed to go through a sort of grief phase whereas those diagnosed in childhood can't recall not being diabetic. You won't be alone if you feel sad, angry, frustrated and the forum is a great place for a rant! Also take up any offer of carb counting courses etc if only to meet people in the same diabetic boat as you.

Depending on the kind of person you are re research I will second the recommendations and add Adam Brown's book (free or from Amazon) Bright Spots and Landmines as it contains practical ways to think about exercise and blood sugars.
https://www.amazon.co.uk/Bright-Spots-Landmines-Diabetes-Someone/dp/069286153X
I think bodybuilders used to use/abuse insulin to bulk up but for a type 1 the main obstacle to building muscle is going to be high blood sugars so I don't think you're going to get ripped overnight. Sorry.
 
KK123 said:
Hi there. Well that sounds like it all happened very quickly. I am quite surprised that they have told you definitively it's 'type 1' after only 2 days
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Our experiences seem to vary. I was diagnosed Type 1 in my 30s with no question about type 2. The type was confirmed on the day of my diagnosis.
My diagnosis was delayed because the first doc told me I had a UTI but that was general incompetence rather than anything diabetes related.
 

Hi there, I was in my 50s so I'm sure the actual age must come into it too. I think that overall it just shows how many factors and sets of circumstances are looked at, and dependent upon which GP or Consultant is in front of you they come to a sometimes immediate, conclusion. I really think that they should do all the tests available when anybody is diagnosed but of course I know that's a money issue. I am positive that if I had been overweight they would have sent me off as a type 2 as they did 3 years prior to diagnosis when they said I was 'pre diabetic', again back then I was thin as a rake etc and didn't fit the so called profile but NO further tests done. I wonder why they are happy to look at a 30yr old and say 'type 1' with no further tests in some cases or immediate further tests in others and so on. It really seems like the luck of the draw which is very wrong. As for anyone overweight it's even worse when they jump to conclusions based solely on weight.
 
Hi and welcome. I suspect with your weight loss and age, T1 is the correct diagnosis but the two T1 tests should still have been done. In general you need to keep the carbs down but for sport you can use more as it will be used rather than stored as fat. Have proteins and fats rather than carbs. Some say T1s can eat anything as long as they inject enough. Well in my case I certainly can't. You meter will tell you what works for you. If you can afford it do consider the Libre 2 system in the longer term to manage your BS.
 
I was younger and had weight loss and am type 2, so those tests to confirm have hopefully been done as misdiagnosed T2 is rare but I'm sure can happen (thinking there was someone on forums but can't quite remember)
 
Thanks for the message and warm welcome, yes they eluded to pretty much what you said about getting me on insulin to bring me down and get rid of ketones but “further tests” were needed later down line to determine 100%, which sound as though they are the ones you mentioned.
The nurse in diabetic unit did say the signs points towards type 1 due to my weight and lifestyle but type 2 couldn’t be ruled out.

funnily enough the gp in surgery had said it was likely type 2 and said to collect metaformin and await response from their diabetes team Monday (tomorrow).

Worried in being fobbed off I phoned diabetes unit who had said that was the wrong advice and should have tested for ketones, which is where I’ve ended up on insulin immediately and informed I’m likely type 1.

I will ask more about these tests tomorrow and hopefully get some answers.
 
Andydragon said:
I was younger and had weight loss and am type 2, so those tests to confirm have hopefully been done as misdiagnosed T2 is rare but I'm sure can happen (thinking there was someone on forums but can't quite remember)
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Hiya, I’ll make sure I ask tomorrow about the tests to confirm T1 or 2. the diabetic nurse said that metaformin wouldn’t have helped me get my bloods down and wanted to get the lantus into me immediately for the weekend. I’m sure something was said about waiting weeks for confirmation but my head was spinning and all over with the fact I was about to get injected lol. honestly cannot thank everyone enough, just having a community to discuss this with feels like a massive weight lifted.
 
Sounds like you have a lot to take in and some competing info from the professionals but it is important to get the right diagnosis and there are different options depending but getting your bloods managed is an important first step

Regardless of type,there is support on here to help
 
I really liked the title you used : type-1-diagnosis-well-this-sucks'. Clearly an honest, immediate response to what has happened to you. After 56 years I agree totally. I was diagnosed aged 10, but I can still remember the other kids in my hospital ward having ice cream as their desert at lunchtime, while I was given yet another apple. I was given an apple or orange every day. Fortunately, things have moved on. You will become your own expert on your own diabetes, though it will take some time. I just thought I would wish you luck. It's a steep learning curve, but you will get where you want to be. Just be careful and always have glucose / fast-acting carbs with you. All possible good wishes.
 
I was diagnosed aged 2, and was also in hospital aged 10 and like you @JMK1954 I well remember the longing for ice cream as desert like the other children on the ward. You were slightly more fortunate though, as I got no desert at all
 
Diagnosis

1.1.1 Diagnose type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia, bearing in mind that people with type 1 diabetes typically (but not always) have 1 or more of:

ketosis

rapid weight loss

age of onset below 50 years

body mass index (BMI) below 25 kg/m2

personal and/or family history of autoimmune disease. [2015]

1.1.2 Do not discount a diagnosis of type 1 diabetes if an adult presents with a BMI of 25 kg/m2 or above or is aged 50 years or above. [2015]

1.1.3 Do not measure C‑peptide and/or diabetes‑specific autoantibody titres routinely to confirm type 1 diabetes in adults. [2015]

Just to point out that the nice guidelines do not require the tests if the diagnosing practitioner is pretty sure it is type 1.
 

Hi halph, your story is exactly like mine! It sounds like they are on the ball given what you have said. When I went to my GP to begin with it was her who did the finger prick test (sky high) and started talking immediately about metformin and wrote a prescription. As an afterthought she did a ketone test just as I was leaving, then went into a panic, snatched the prescription back and whizzed me off to hospital. The first insulin injection (from a drip) dropped me like a stone, then they force fed me toast and up it went, then more insulin and down it went! Anyway, the Consultant did say most likely type 1 but wanted to rule out type 2. If it does get confirmed as type 1, well at least you know. If you are anything like me, I spent the first few weeks fondly dreaming of putting it into remission (if type 2) but it was not to be. It's really important to know either way of course. x
 
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It's interesting isn't it because we know that apple would probably have had more of an effect on your glucose levels than the ice cream.
 
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