Type 1 diagnosis...Well, this sucks

[KK123]

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

I wonder what would make them 'pretty sure' other than a child sitting before them. I think that's half the problem, not so many years ago they just said anyone not a child is 'type 2 or type 2 on insulin' which was a catchall situation. Beyond that declaration you would never actually know who was actually not a 'type 2 on insulin' but a type 1, especially when the view was (is) 'once diagnosed it's progressive anyway so it matters not if you are mistakenly placed on insulin, you'll all get to that point regardless of type'. I wonder whether there is any other life changing disease that seems to get diagnosed in such a casual manner.

 

[Clairewills123]

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 was diagnosed with type one and two
In February this year was immediately put on insulin slow release and four metformin after numerous tests and blood tests I’ve have finally had a diagnosis of lada autoimmune and also an auto immune
Thyroid condition now on slow release (smeglee)on morning and fiasp meal times carb counting I’ve gotta say it’s life changing my life revolves round food and bloods and injecting so I wish you luck

 

[HSSS]

I was diagnosed with type one and two
In February this year was immediately put on insulin slow release and four metformin after numerous tests and blood tests I’ve have finally had a diagnosis of lada autoimmune and also an auto immune
Thyroid condition now on slow release (smeglee)on morning and fiasp meal times carb counting I’ve gotta say it’s life changing my life revolves round food and bloods and injecting so I wish you luck

Out of curiosity how and why did they decide you have both type 1 and type 2?

or did they ditch the type 2 possibility once they decided on LADA, a form of type 1.

 

[halph]

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

thanks for this reply, yes feels as though I’m just hoping for t2 so I can make

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

little update to this, they carried out the c peptide test as stated (made a complete mess of my arm drawing bloods). The specialist nurse did say given presentation it’s likely we are looking at type 1 so I expect the worst case scenario. Already limiting my carbs as of now. It absolutely sucks now, find myself having random emotional meltdowns.

 

[KK123]

thanks for this reply, yes feels as though I’m just hoping for t2 so I can make

little update to this, they carried out the c peptide test as stated (made a complete mess of my arm drawing bloods). The specialist nurse did say given presentation it’s likely we are looking at type 1 so I expect the worst case scenario. Already limiting my carbs as of now. It absolutely sucks now, find myself having random emotional meltdowns.

Hi Halph, thanks for letting us know. Yeah, it does suck. It actually feels like a bereavement in a way, for a 'carefree' life that has suddenly changed. If it's any consolation at all though, you DO get used to it and actually, food wise you end up with a little more freedom than a type 2 managing themselves on diet only. It's good that they are checking you out thoroughly and right from the start as many individuals get written off as a type 2 when in actual fact they are type 1s and need insulin straight off. Please come back to us when your results come back (or at ANY time) as there is loads of experience on this site for all types of diabetes. x

 

[Clairewills123]

Out of curiosity how and why did they decide you have both type 1 and type 2?

or did they ditch the type 2 possibility once they decided on LADA, a form of type 1.

They ditched type two as soon as it was confirmed lada

 

[HomerSimpson]

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?

The good news about being T1 is you can still enjoy sweet foods like cakes, biscuits etc. You just need to give yourself the right amount of insulin.

The only things to avoid (in my opinion) are: pop and juice. This is because they are super fast. Insulin takes time to kick in; it’s all about timing.

You can certainly drink these when you are hypo, but never drink them just for pleasure.

 

[Antje77]

You just need to give yourself the right amount of insulin.

For some it works like this. For others it's close to impossible to dose for cakes and biscuits without spiking high. By all means, try and see how it works out, and even if it doesn't work perfectly for you, indulge every once in a while!
But for many of us it's easier to go a bit slower on the very high carb stuff

 

[Clairewills123]

They ditched type two as soon as it was confirmed lada

Yes took metformin off me and gave me fiasp insulin which I’m not happy with excessive weight gain still massive spikes in readings like 14.0 2hours after 3.5 and I just keep getting told we’ll do 1 unit for 15g carbs if that don’t work 1unit for 20g I don’t even eat that much carbs

 

[Hertfordshiremum]

Yes took metformin off me and gave me fiasp insulin which I’m not happy with excessive weight gain still massive spikes in readings like 14.0 2hours after 3.5 and I just keep getting told we’ll do 1 unit for 15g carbs if that don’t work 1unit for 20g I don’t even eat that much carbs

I had a similar range at the beginning, keep a food diary. I find I just can’t eat rice, pasta bread couscous … very occasionally I will have one small potato that’s my limit. However there are some great cookbooks and actually I don’t miss these things now

 

[Clairewills123]

I don’t eat much carbs tbf anyway the excessive weight gain has come from insulin fiasp I was fine on metformin trying to get a face to face appointment still with a diabetic nurse or consultant is no existed I’ve put a stone on witching 4 weeks since the introduction of fiasp

 

[Jaylee]

I don’t eat much carbs tbf anyway the excessive weight gain has come from insulin fiasp I was fine on metformin trying to get a face to face appointment still with a diabetic nurse or consultant is no existed I’ve put a stone on witching 4 weeks since the introduction of fiasp

Hi,

Did you mention on another topic regarding thyroid issues?
Was that side of things looked into..?

 

[ema_jane81]

I was also 39 at age of diagnosis (type1) and am just 4 months in. It also came out of the blue, I exercise a lot and was feeling well. I am paying for a libre2 which helps me to keep exercising and sticking where i can to low carb. It turned my world around completely for a while and am still blown away by it all!

 

[Clairewills123]

Hi,

Did you mention on another topic regarding thyroid issues?
Was that side of things looked into..?

It’s still on going the thyroid it’s autoimmune disorder too it’s fluctuating massively monthly I know this has a influence on my sugars