Hi and welcome.
Sorry you have to be here but so pleased you have found us as there is a huge wealth of knowledge and lived experience of all forms of diabetes hereon the forum and it is very comforting and reassuring as well as informative to compare notes with others and learn a few practical tips and strategies to help you manage things better..... and yes, it will get better and it can be quite a rollercoaster even for most of us who are Type 1 let alone complete pancy removal Type 3c which brings increased levels of complication.
Firstly and most importantly, are you on Creon or some other Pancreatic Enzyme Replacement Treatment (PERT)? If not then that may be a big part of your problem, but I find it hard to imagine you could go 9 weeks without it. If your body can't digest the carbs in your food because you don't have the enzymes to do so, then your food will release less glucose than it should and your NovoRapid doses will be wrong, causing hypos. In fact it may be that even if you are on Creon or other PERT that perhaps the doses of it are not correct, so unpredictable levels of glucose are being released from your food.
Great that you have Libre, but it is really important that you understand its quirks and limitations as that alone can lead you to over treat hypos and then end up high and once you are on that BG rollercoaster it is hard to get off and your levels swing up and down and that alone makes you feel rubbish and anxious and out of control.
The key things to know with Libre are that
1. They are susceptible to what we call "Compression Lows" where if you apply heavy pressure to the sensor like lying on it in bed during your sleep, it can cause a false low and alarm. If you get a low alarm anytime and you don't feel obviously hypo, double check it with a finger prick before treating. this leads onto the second point....
2. Never rely on Libre to check your recovery from a hypo because it will almost always lead to you over treating a hypo which will mean your levels then go far too high. After you have confirmed you are hypo with a finger prick and taken the appropriate 15g carbs (3 jelly babies or 4 glucose tablets or whatever your chosen treatment is) wait 15mins and then recheck with a finger prick. At this time, Libre will almost always show your levels have dropped lower which would tempt you to eat more fast acting carbs, when a finger prick will usually show your levels as coming back up and no more fast carbs are needed. This is due to the fact that Libre reads interstitial fluid rather than blood and is one of the few times when the algorithm used by Libre to try to make up the lag between blood glucose and interstitial fluid, fails quite significantly, because it continues to extrapolate the previous downward trend for about 20 mins after you take the hypo treatment and will not usually catch up to the real reading for about 30 mins, so finger pricking when treating a hypo is really important.
As regards hypo treatments, it is VERY EASY to over treat hypos, partly because you can feel ravenously hungry and partly out of panic because hypos are scary and partly because you perhaps haven't yet learned how much is enough.
The guidance for treating a hypo is 15g of fast acting carbs, wait 15 mins and retest (with a finger prick). If levels have come up above 4 you may then want to have 10-15g of slower acting carbs to help stabilize things, but if levels haven't come back up, you don't do that but take another 15g of fast acting carbs and keep retesting after 15 more mins until it does come back up above 4 and then have the slower carbs like a digestive biscuit or a slice of toast with peanut butter or whatever.
We are all different in how our bodies respond and gradually we have to work out the best strategy for our body. In my case 15g of fast acting carbs is usually too much and I only need 5 or 10 (1 or 2 jelly babies) depending upon how low I am and I almost never need the follow up slow acting carbs, but that is just what I have learned about my body from treating hypos and seeing that high rebound. What helped me was knowing that 5g of fast acting carbs raises my BG levels by about 1.5 mmols, so if I am on 3.5, 1JB will take me up to about 5mmols and 2 will get me to about 6.5, so unless I have got my carb calculations very wrong or done a lot of exercise, I don't need any more than that and if I took the full 3 JBs plus a biscuit I would be in double figures, so learning what my boduy needs to get me back to a nice mid range BG has been key and no nurse can tell you that, it is just what you gradually learn.
However preventing hypos is so much easier now we have Libre and other CGM so it might be worth setting your low alarm a bit higher to give you warning or an impending low, so that you can head it off at the pass. I believe the low alarm on Libre can be set as high as 5.6 and with you having no pancy that might be a good level to set it at least initially. I have my low level set at 4.5 and for my body I can still head off a hypo almost every time with a jelly baby or too even if it is dropping fast. If you have it set at 5.6, you don't need to act when it goes off, but monitor and take action if it continues to drop. Just a very small amount of carbs like a dried apricot, a single prune or a dried fig or date or half a digestive can just nudge it back up again. Having different amounts of carbs and slower or faster ones for different situations is key to this skill of preventing a hypo before it happens.
An important point to mention with regard to treating hypos and may be particularly pertinent with your total lack of pancy is that chewing very well or swilling your chosen hypo treatment around in your mouth will be more effective than a couple of chews and swallowing. There are enzymes in your mouth which can break down sugar into glucose and the cells inside you mouth (cheek walls and gums) are able to absorb the glucose and get it straight into your blood stream and of course your mouth is closer to the brain than your stomach, so getting as much absorption of the glucose in your mouth is really helpful in treating a hypo more speedily. Of course most people think that it needs to get to the stomach to be digested and particularly as hypos make you panic, you are usually inclined to have a couple of chews and swallow it down, but taking time to chew it well and move it around in your mouth before swallowing will have a more efficient and speedy recovery. For this reason, liquids like orange juice or full sugar coke can be faster than a solid treatment like JBs or tablets because they don't need chewing to release the glucose.
Final thing is that exercise can have a dramatic effect on BG levels, particularly in the first couple of hours after injecting bolus (meal time) insulin. and the effects of exercise can last for 48 hours, making you more sensitive to insulin and hence more prone to hypos. Exercise is not just running or playing sport or going to the gym though, it is any activity like walking and housework and gardening and other DIY jobs too, especially if the weather is hot. Learning how to adjust your insulin or BG levels for activity, be it planned or unplanned is an important skill to learn, but again, it is largely trial and error. My body is particularly prone to nocturnal hypos after I have had an exertive day, so I need to reduce my overnight basal (long acting) insulin if I have been very active and adjust it back up if I have been more sedentary. Other people have more problems with hypoing whilst they are active but not so sensitive through the night.
Good diabetes management is about doing lots of very careful experimentation on your self to see how your body responds to various situations, look for similar trends rather than assume a one off result is right and adjust your diabetes management to suit. Diabetes is highly individual and our lifestyles and menus are all different and only we live with our diabetes, so we have to become the expert by learning how our body responds. A nurse who sees us for half an hour twice a year or whatever really cannot know that we hypoed 3 weeks ago because we spent all day assembling and fitting some bedroom furniture or pruning our fruit trees or cutting the hedge or running around after grandchildren, so whilst they make a best guess on doses and insulin t carb ratios there are so many other things which can affect those results that they can only ever be a best guess by someone who wasn't living in our body that day or the previous day to know why it happened.
This may all sound really complicated but just like learning to drive a car, it gradually just becomes an automatic process for most of the everyday stuff, where you take into account multiple factors before you dial up and inject your insulin. Part of it becomes intuitive and part actual calculation and part of it is just winging it and being prepared for any scenario to keep yourself safe, particularly preventing and being prepared to treat hypos by having a graded response depending upon the circumstances, without over treating.
It still amazes me that 1 single jelly baby can make such a significant difference to my levels.... especially when I consider how many sweets I used to eat pre-diagnosis and how much insulin my body must have been producing to cover them.
The pancreas really is an amazing little organ and sadly, it is only when you have lost it or it isn't able to function properly and you have to take over that roll manually, that you truly appreciate just how amazing it was.
