Anyone have any ideas?

Hello, this is my first post here, I've been searching for answers for so long now that I think asking the community directly could help me. This may be a long post, so please bare with me.

I am currently 25 years old. Almost four years ago I was diagnosed with type 1 diabetes after presenting with the classic symptoms and a blood sugar approaching 30mmol. For three and a half years I was treated with insulin, albeit very little amounts (3 units of fast acting for a curry etc). All throughout these three years my A1C was perfect. The nurses were all very impressed with me, even though I didn't actually need to do much to keep my levels within range. Hypos were a constant problem. Last summer, after struggling with hypos near constantly, with the guidance of my endo team I came off insulin entirely. My sugar levels stayed normal. They rise after a meal (within normal ranges) then go down again and settle somewhere between 4.0 and 6.0. So I am producing my own insulin. They did an antibody test - it came back negative. They told me though this doesn't totally rule out type 1.

I still have no official diagnosis.

I also frequently go low during exercise. But I am not sure if I am too low or not, as all of my knowledge in regards to blood sugars relate to it in conjunction with T1. Today for example, I ate 2 crumpets and walked two miles, but I had to sit down at one point because I felt funny, and checked my BS which was 3.8. Naturally, after living with "type 1" for a prolonged period of time, these numbers scared me so I had a few dextrose tablets which fixed the issue. One of my main worries is that if I didnt treat these lows, they would keep dropping. Whether or not they would though is still a mystery because I am too anxious NOT to treat these lows.

After receiving no real answers as to what was actually going on with me, I became a terrible hypochondriac. I worried obsessively about pancreatic cancer etc. Was there anything wrong with me? Am I even diabetic? I must be because I go low...To alleviate my worries my endo team ordered a fecal elastese test and a full abdominal CT scan. To my relief, both tests came back clear.

And that's where I am now. My anxiety is bad when it comes to leaving the house, I worry that my sugars are going to drop and I'm going to faint in public. I just feel quite alone, and a bit hopeless. I suppose its because I have no real diagnosis. It took me a long time to come to terms with my T1 diagnosis, and now it seems that I'm not even T1. In fact, they dont seem to really know what's going on with me, but something has to be, right?

I know there isnt a clearly defined question here. I guess what I'm asking here is has anybody had a similar experience to me? I feel quite alone in this struggle, and it would be nice to know others have been through or are going through something similar.

Thank you for reading.

Thanks for all the input guys. Today I did a little experiment, though it was absolutely hair raising to say the least. I checked my bloods and I was at 3.9mmol. I decided to go to the shops, taking sugar with me of course. I hadn't eaten properly today either, so I knew my levels would go down. On the way back I got all the hypo symptoms, but I held off on taking any sugar (if things got serious I would have) and the anxiety was intense. I felt like I was going to collapse, but I kept on. I got back to my house shaking with a heartrate through the roof, checked my sugars expecting to see a truly gruesome number, but it was 5.8. Checked again five mins later, 6.4.

I cannot tell you how much of a relief this is. I am completely sure I had a hypo, I've had enough of them by this point to recognise them. But what was miraculous was how quickly the ****** feeling went away. I feel a lot more in control now, I was becoming borderline agoraphobic.

I have an appointment with the nurse on the 2nd of Nov (a new one this time, i moved to another city for uni) but she has all my details and hopefully will listen to me.

The odyssey continues.