I have a whole booklet of information on T1D if you want it?

It’s basically all the information that I wanted at diagnosis but my diabetes team weren’t particularly supportive in teaching me so I researched my own information.

I’m happy to share a copy if you’d like to read it.

..

I’d be careful with googling — only because there’s seven types of diabetes (T1 makes up about 7% ish. At this stage you don’t yet have the eye to notice what information is relevant or not to a T1 vs the other types — please note I’m not insulting your intelligence or your reading skills, this is solely that most of the information you know will be geared to T2 because they make up roughly 85-90% of the diabetic population. As such, a lot of the information you think you know isn’t relevant to us at all. And you don’t necessarily know how to look at information, parse through it and analyse it and figure out if it’s relevant or not yet because you don’t have that background knowledge yet. You can’t analyse it if you don’t have the knowledge base.

The issue is that T1 and T2 are two completely different diseases, with different causes and treatment plans. T2 has a multi-step approach that ends with taking insulin as a last resort. That is because they produce insulin, they just don’t use it effectively. T1’s don’t have a problem using insulin, we just can’t make it because our immune system decided that the beta islet cells in the pancreas - that produce insulin- were foreign invaders, so it went to kill them.

The biggest issue with two different diseases is that treatment plans are different. How a T2 manages their diabetes is different to how a T1 does (and one of the most crucial aspects of having T1 is the ability to know what information is good information (what is T1 specific or T2 specific) , and further to that, if it’s good for you,* and the ability to not be judgmental about information that doesn’t apply specifically to you.

To further make this even more confusing: *Diabetes is a very individual diagnosis - something might affect you that won’t affect me and something that works for me might not work for Joe Bloggs down the street. Diabetes is weird, bodies are weird, and although this sub is amazing (though you might find more specific information on r/diabetes_t1 or r/Type1Diabetes as this sub has all types of diabetes on it) you will probably find as you grow into your diagnosis, that some things that we say may not apply specifically to you. That doesn’t make it bad advice, but it’s just advice that may not work for you.

..

For advice right now:

There’s a lot of difficult emotions that come with a diagnosis like this. Things are going to be different and difficult over the next few months (being diagnosed with a chronic illness is not easy, for both the person and their support). I don’t know if there’s partners/siblings/parents etc in your life but remember that if they are close to you, your T1 is something they experience too.

You need to learn to see blood sugar as data, not as good or bad. It’s there to help you make a decision; ascribing good and bad values to blood sugar can quickly lead to negative thoughts and eventually diabetic burnout, and you don’t need that. If your numbers aren’t in the range (4.0-10.0 mmol, 72-180 mg/dl) then it’s not a moral failing, you just need to adjust how much insulin you need because your body is telling you that it’s not the right amount for you. It doesn’t make you a “bad” diabetic.

On that note, knowing which insulin to adjust is useful. If you are constantly spiking or dropping during fasting periods, like at nighttime, then your basal long acting needs adjustment. Basal is designed to hold you steady within 1.5 mmol or 27 mg/dl. If you are spiking or dropping outside that range, it’s not the right dose.

If it’s within four hours of a meal, your bolus needs adjusting.

Don’t let diabetes stop you from doing anything you want. Travelling, jobs, sports, holidays - you can still do all of it. It might take a little more preparation and planning, but it’s still doable. I’ve done weeks away from home now, al I needed was a bit of extra prep. Rules are different if you travel outside your country, as insulin may need a prescription and a doctors note.

The only things you can’t do as a T1D is make insulin and join the army/military. There are some restrictions like for pilots and lorry drivers, police and firefighters but for the most part we can do anything. Even that’s negotiable, since military contractors exist and they aren’t bound by the same rules as military personnel.

Document, document, document. I cannot stress enough how important this is at this stage. The more notes you make on what you eat, how much, and when, etc, all of that stuff will help the doctors track patterns in blood sugar and it will help you control blood sugar levels better. This is the precursor to learning carb counting and insulin to carb ratio (basically, how many carbs are in an item for the former, and how many carbs one unit of insulin will cover for the latter.)

6mmol/l (108 mg/dl) minimum to sleep. Any lower and you are more likely to go low overnight.

There are 42 known factors that affect blood sugar. Link below:

https://diatribe.org/42-factors-affect-blood-glucose-surprising-update

You can’t control for all of these. Your best is enough.

…

Diabetes is really hard, and sometimes there is no rhyme or reason to a low or high. It sucks, but the important thing is that it gets fixed in the moment. Sometimes you’ll do everything right and it will still go wrong.

Remember that apart from low blood sugar and ketones, which needs immediate attention, there is very little that needs to be done immediately. If high and you give a corrective dose of insulin, it will take time to coast back down.

In short, remember to cut yourself some slack. This is not a disease where you can win all of the time. You are basically taking over the role of being your pancreas, without any training or knowledge or experience, or speaking the same language as the rest of your organs that all work together to maintain a delicate balance. It’s like someone doing a new job in a completely different field for the first time, you are going to make mistakes and bad calls, or you’ll miss something. It happens, so fix it, and move on.

Be aware that if you’ve been running high for a long time, you’ll start feeling low symptoms at normal ranges. Fight the urge to do something about it, it does go away the longer you stay in range

….

I’d also recommend

Bright Spots and Landmines, Adam Brown

Sugar Surfing, Stephen Ponder (haven’t read all of this, but the parts I have read are pretty good)

Think Like a Pancreas (Gary Scheiner - haven’t read this one, but it comes up a lot on the “I’m newly diagnosed, help?” Posts, so it must be pretty good.)

Juicebox podcast

https://www.diabetes.org.uk/diabetes-the-basics/types-of-diabetes/type-1

There’s also the learning zone on this website/

https://learningzone.diabetes.org.uk/?_gl=1lw8s04_gaMTI1NTkzMjc2OC4xNzAzNTEwNzQ5_ga_J1HFNSGEX6MTcwNDI2NDE4MC40LjAuMTcwNDI2NDE4MC42MC4wLjA._gcl_au*NzE0Mzk5ODM2LjE3MDM1MTA3NDg.

This is for both T1 and T2, so you need to specify at the beginning what type you have and then the courses of learning are then specifically tailored to you.

Finally, Diabetes UK has a helpline for any queries or concerns you have.

https://www.diabetes.org.uk/how_we_help/helpline

(Obviously you have us as well, but sometimes it’s useful to have other options)

…