Late diagnosis Type 1

[Leisl]

Hi.

I was diagnosed as Type1 in August last year having been admitted to hospital with DKA (no symptoms other than excessive thirst), aged 47.

I was in for 3 days, sent home with basal and fast acting insulin and an A4 leaflet and left to fend for myself. After having a complete meltdown I was finally given an "urgent" appointment in December where I was told I was type 2. Consultant then called in in March and said I was Type 1. You can't make it up!

I am still under the "care" of the hospital not the GP. I am self funding Dexcom as I would be dead otherwise. Injecting up to 12 times a day as I still have no control. A good day for me is about 12 but usually much higher. When I drop, I drop quickly and hypo 2-3 times a week going to 1.9 ish quite regularly.

As you can tell, my diabetes journey so far has not been a barrel of laughs. Currently waiting for yet another "urgent" appointment..

I was diagnosed with metastatic melanoma in 2018 but latest 3 month scan is NED following immunotherapy. My oncology pathway is far superior to diabetes. The support and action is second to none, the diabetic clinical support is shocking to say the least.

That said, I am fit and well. I walk miles with the dogs, work full time and am very active, kayaking, walking, volunteering etc.

If you have got this far......hello! 🙂

 

[Robin]

Hello, and welcome to the forum. Your care so far sounds about as useful as mine was. Misdiagnosed as Type 2 at age 51, rediagnosed Type 1, shown how to inject insulin and sent on my way, left to get on with it, etc etc. Maybe I didn’t kick up enough fuss at the time, and pestering the hospital would have got me more input, but I decided I was going to need to educate myself.
Have you been offered a carb counting course? Or have you taught yourself to count carbs? I did the BERTIE online course which helped a lot, I think there’s a link to it on the Newbies page, I also bought a book called Think like a Pancreas, by Gary Scheiner, and there is also a book by Ragnar Hanas written with children and adolescents in mind, but people swear by it for any age.
You shouldn’t be having to self fund a dexcom. The NICE guidelines have just been updated, and all people with Type 1 should be able to access a continuous glucose monitor. This is something you definitely should pester your hospital about. It took me months, but in the end, I got one prescribed, (that was before the guidelines made it easier).

Edit. The links are all here, second post down. Plus other useful stuff,

Useful links for people new to diabetes

These links provide useful information, particularly to those newly-diagnosed. You can also browse the Recommended Books and Links sections for further information :) Contents: Type 1 Section Insulin Pumps Section Type 2 Section General Help and Information Section Complications and screening...

forum.diabetes.org.uk

 

[Abida DUK]

Hi @Leisl - a warm welcome to the forum!

I'm so sorry to hear about your experience during your diabetes diagnosis and thank you for sharing this with us. We have a very knowledgeable and supportive community on the forum, so please don't hesitate to ask any questions in this thread. I agree with @Robin that you should enquire about getting a glucose monitor on prescription rather than being self-funded as the guidelines have been updated, and please do have a look at the link shared as well.

Also, if you would like to chat more about this one-to-one, please call our Helpline on 0345 123 2399 Mon-Fri 9am-6pm, where an advisor would be happy to help, or if you'd prefer to write in please send an email to helpline@diabetes.org.uk 🙂

 

[rebrascora]

Hi Leisl and welcome from me too.

I'm another late starter with Type 1, diagnosed 3 years ago and like others here, started off with a Type 2 diagnosis until they did the appropriate tests and confirmed Type 1.... I also self funded Libre before managing to get it on prescription, so I would encourage you to push for that.

Unfortunately the diabetes clinic staff at the hospitals are really struggling to cope due to the huge increase in workload from Covid. It is looking like Covid is triggering cases as well as causing significant difficulty for diabetics being admitted to hospital with Covid. General nursing staff have very little understanding of insulin doses and how to balance things so the DSNs and consultants have been trying to cover the Covid patients on the wards as well as the existing clinic patients and the newly diagnosed. When I spoke to my consultant in Feb he was really quite depressed about how many complaints they were receiving but said himself he could understand it .... they just can't manage the increased workload.

That said, your situation is shocking and sadly you are not alone in your situation. It is just perhaps a shame that you didn't find the forum sooner as it is a goldmine of information, knowledge, experience and practical tips from people who have been there and got the Tshirt. I have learned 90% of what I know from other members of the forum and experimenting on myself and I have gained really good control from the advice here, so I hope we can help you too.

Would you like to tell us which insulins they have started you on and what sort of doses?

If you are struggling with the BG rollercoaster then it is likely your basal insulin dose(s) are the problem. Getting your basal dose correct is a "dark art" in my opinion and needs regular reassessment and tweaking but everything else (almost) makes sense once you get that right. It is the basis of good diabetes management and your Dexcom should be an enormous help in getting that better tuned to your body's needs. Understanding how each insulin works and what it is supposed to do and the profile of release is important because it is not just the dose but the timing of it which is hugely important.

If you can give us more info about your insulins and the problems you are facing, we can hopefully help you to unpick the muddle and start to get things more straight. It is also important to have realistic expectation and one of the things that I remember clearly was getting concerned because I had 2 hypos in a fortnight as I expected that it might be a once or twice a year event. I posted on here about it and one member replied saying that she often had 2 a day. That was really reassuring to me. I currently average just under 1 a day but my diabetes management is very good, so whilst they are to be avoided, they do happen to some people a lot more frequently than others..... and as a result they become much easier to deal with to the point that they are mostly no more than an inconvenience to me now and I am very confident in dealing with them. There is a huge range of what is "normal" with diabetes and you have to find a place within that range where you are comfortable and try not to judge yourself by other people's results.... just do the best you can and try to become the expert in "your diabetes".

Finally, I just want to say that it does get a lot easier but you will get spells of turbulence and then better control. Just when you feel like you have got it cracked, the goal posts move and you have to figure out new strategies to suit the new game play. Human bodies are messy biological systems and there are at least 42 factors which impact Blood Glucose levels, food, exercise and medication being the main players but many of the other things like hormones and ambient temp and illness and season are well beyond your control, so you have to accept that perfect control is impossible and good management is the best you can hope for.

 

[everydayupsanddowns]

Welcome to the forum @Leisl

Goodness, what a muddled start you’ve had to your career as a part time pancreas impersonator (the pay is dreadful, but the benefits, including ‘survival’, are well worth having )

I second @robin’s suggestions of TLAP and Ragnar Hanas’s T1 book. Both written in an accessible style, and cover a lot of very useful and practical stuff.

A diagnosis with T1 can be overwhelming, and it’s one of the steepest learning curves you’ll ever come across.

Give yourself time to slide into this. It can be so tempting to try to fix everything all at once, and to pounce on every number your meter or CGM gives you, but I’m reminded of a blog post I wrote years ago about speedboats and oil tankers.

The tools we have to manage diabetes can feel like that at times. An awful lot of ‘nothing happening’ while you fret and stew… and then WHOOSH!! everything, unstoppably, all at once.

I find this particularly with trace-watching on Dexcom. It can be SO tempting to double-react, with a rising or falling trace, only to store up trouble for myself.

One of the best clinical trial outcomes on the records for a large group of T1s used fairly primitive insulins (by modern standards) and no CGM. It was the DAFNE pilot / early trials, 2x basal and 3x meal injections and NO CORRECTING in between. Correction doses were added to the next meal - so only when the previous dose had completely run it’s course.

I would struggle to have that discipline, but often I force myself only to correct ‘down’ with enough insulin to aim to get me to 9 (which is what the text books say I should have been at maximum after a meal.

12x injections a day feels like there must be something up with your basic framework - and/or your ‘honeymoon phase’ is helping out with random splurges of insulin when you least expect it.

Have you come across the idea of basal testing?

Might be worth chucking some time and strips at seeing if your basal is just holding levels steady behind the scenes, and nothing more?

A big welcome to the forum, and keep asking questions!

 

[SB2015]

Welcome to the forum @Leisl from another late starter with T1 (aged 53).

So much to learn very quickly at the start and it sounds like you have had some muddled support. Good to read that you are using the Dexcom. It may be that you can get this funded now, or access to the Libre Sensors which seem to be more readily available.

As you learn more about making adjustments to your doses you may find that you are able to get your levels more under control. Have you been taught (or found out how) to carb count , and also how to match your insulin dose at each meal to these numbers.

When I first got sensors I was surprised at the spikes that I had after each meal. I found that the data from my sensor helped me to make adjustments to
- the timing of my bolus injections
- the amount of carbs in each meal that worked for me
- eliminate some specific foods which were very ‘spikey’ for me (whilst not for others)

There is loads of experience to tap into on here, which has helped me to find a way through this that works for me. Whatever questions arise, just ask.nothing is considered silly on here.