Every diabetes is different

Even though I might be the only person in the world having these symptoms, on the off chance that it will help someone, somewhere out there, let me share how the first four years of my diabetes went.

I was diagnosed in 2009 with an HbA1C of 11.2 and fbs of 258. The doctors thought it was LADA, and in my first antibody test I tested slightly positive, while my second one, six months later, turned out negative. I was put on long-acting insulin straight away (5 units), but my pancreas recovered just enough so that I was taken off it again. In February 2010, I started a low carb diet, mainly with the help of Jenny Ruhl's website, bloodsugar101. I was obsessed with food for a good year or so, couldn't talk about anything else with either friends or strangers. During that first period, I also was kicked out of two hospitals for doing the low carb diet, since diabetologists here in Italy insist patients get 50% of their calories from carbs, and won't treat you if you don't follow that diet (and inject lots of insulin). I found a good diabetelogist in my home country, Germany - recommended by TuDiabetes admin Holger Schmeken, thank you! - and have been left alone by Italian doctors since.

Every summer, my fasting blood sugars would rise to levels that were of concern to me - I would be completely freaked out every time, and then by the next summer, think nothing of it... In the summer of 2010, it was 120, the next summer I don't remember, in 2012 it was 140 and this summer it was between 160 and 180. After the summer, things would usually get better, but we are now in October and mine are still more often then not around 180, so today, I asked my doctor to prescribe insulin, which she did. In 2013, my HbA1C also for the first time went over 6, and the bloodwork I got done last week showed 7.2. Measuring my bs over the course of the day shows that my curve is that of a classic ADA "prediabetic" patient (where 180 is absolutely acceptable...).

That last blood/urine test also threw up some other issues: my urea was very high, which comes from all the gluconeogenesis that my liver is doing. My theory is that my diabetes is mainly related to stress, and one of the things that the stress hormones, cortisol and adrenalin, do, is to get the liver to produce emergency sugar to be dumped into the bloodstream. Since I eat hardly any carbs, the liver doesn't have any stored glucose and has to produce it all by itself. It does that using the protein that I add, about 100g per meal. In fact, my liver has become so good at transforming protein into glucose that a protein-rich meal (e.g. a 250g steak) will get me to 180 or over (not my normal post-prandial values) for hours, as opposed to a carb spike which lasts shorter. And I can still see the impact in my fasting bs the next morning. Cortisol may also induce additional insulin resistance, and digestive problems like heartburn (see below for an alternative explanation).

As a result of the constant "too high" bs of the last year, in January, I got carpal tunnel syndrome, which I have not been able to get rid of anymore. I blamed my new iPhone for it, but according to Jenny Ruhl, this is the beginning of the nerve damage that high bs create, so it's really high time that I get those bs down - hoping it's not too late and the carpal tunnel syndrome is still reversable.

Another symptom that I attribute to the high bs is that my stomach almost always feels full - I wouldn't need to eat if it weren't for the appetite that I (always) have: my brain still thinks about food most of the time although I don't talk about it as much anymore. This stomach problem may or may not be a first sign of delayed stomach emptying and slow movement of food through the digestive tract (gastroparesis), caused by high bs damaging the vagus nerve. It may also be due to high cortisol (see above). It started about a year ago. Something that started this spring is that at least once every few days, I have episodes of heart racing, and sometimes I wake up at night from it. The vagus nerve is also responsible for the regulation of the heart beat. Heart racing could also be due to high levels of cortisol. All of this should disappear once the insulin starts its action and my bs come back to normal - or it will turn out that the cortisol really is to blame, at which point... I'm not sure what I'll do.

What makes me think that it's the bs and not the cortisol, though, is that all of the above occur only once bloodsugars start to stay somewhere over 140-160 for a few hours each day, so I am able to link these symptoms back to the summer of 2012 when they first started doing so. I am quite surprised how quickly things have deteriorated in my body - I did all the basic checks when I was first diagnosed in 2009 and there was nothing wrong with my body.

Looking back on how my diabetes has developed, I have no regrets. I tried to convince my diabetologist in December 2012 to prescribe insulin, but he told me to wait since my values weren't bad enough yet. He gave me fast-acting insulin to correct an occasional value over 160, but I was too afraid to do that since I'd never used that sort of insulin before.

There was also a psychological reason: I myself very much feared starting insulin, and fought tooth and nail not to have to in the early days. Only after this summer did I start to consider it a serious, positive alternative, after having tried homeopathy until August. I also had been thinking for some time that if I could only get the stress in my life under control, I would have normal bs again. Only recently did I stop kidding myself: my stress levels will not get better, and although I can keep trying, in the meantime my body will destroy itself with high bs. By the way, regular exercise has done nothing to keep bs down - I walk briskly for thirty minutes twice a day, five times a week.

Let me add that in every "passage" described above, the TuDiabetes community has been hugely helpful. Most of the time, the only thing I needed was to know that the community was there, and that I could "passively" consult the knowledge available from its members. With this latest passage, from no insulin to Lantus, I will try to add something that I have been reluctant to do: ask for help when I can't solve a problem myself. I may not need to do that, but if I do, I will push myself to throw the question out to you - however stupid I think it is! I know you will not laugh, and throw emotional support and knowledge back at me - thank you.

Why didn’t they put you on insulin from the start with a 258 fasting blood sugar level?

One minor correction: the merrits of running this site solely belongs to the TuDiabetes Admins that I was never a member of. But I try to promote TuDiabetes.org where ever I can.

One problem with the diagnosis of Lada is that it depends on positive testing. There are multiple tests available and of course they produce false negatives and false positives as well. In your current situation the C-peptide test would be very telling I think. Perhaps this is something to ask for at your next visit to your endos. C-Peptide is part of the natural insulin production. The lower the C-Peptide level the less of your insulin production is left. Although it will not change much for your treatment protocol (perhaps it will reveal that the Metformin is not that useful).

Please do not be so pessimisstic about your future. Many people live for 1/2 year with the development of full-blown T1. Then the first two years they are better in control while honeymooning. After that the control often deteriorates and it takes some months to catch up with the new development. What you feel now are the effects of elevated blood glucose. Most likely your electrolytes are out of balance and your triglycerine levels are too high. This will have the neurological side effects you feel right now. But the good news is that most likely this will go away with improved glucose control.

With your liver I share your statements. But I think that the liver will learn to reduce its output once a higher level of carbs is available again. It might take some time but the process is just an adaptation to a new nutritional situation. Perhaps you should introduce rapid insulin too to speed this process up. Your current low carbing is just cloaking that you need insulin for every meal. Give in to what your body needs. You will see that your mood will improve again.

Hi kelvin72, they did, they put me on 5 units of Lantus right away, but they soon took me off it again. I'm grateful that I have had the Lantus experience already and know what's coming my way now that I am starting it again.

Dear Holger, Danke für's Mutmachen! There are so many possibilities for why and how things are wrong, any additional option is always welcome. My tryglicerides are fine (just checked last week) and I add as much salt to my diet as I can but my doctor is not into having those values checked regularly. Do you think when I show up for my appointment on December 30 at 8:30, I can just ask the lab for an additional C-Peptide test? Or do I have to call Pohlmeier again to ask in advance?

I dont't think I'm ready for rapid insulin just yet... it took me at least half a year to mentally prepare for Lantus, and the preparation for rapid insulin started last night with reading the first chapter of "Think like a Pancreas" (brand new edition!), but I'm just not there yet psychologically.

Really looking forward to starting Lantus now, though! I get it from the pharmacy a few hours ago, it's sitting in my fridge now and I'll give myself the first shot Friday night (Pohlmeier suggested I start over the weekend). Thanks again for sharing your knowledge and for your support. All the best!

I think you should discuss the c-peptide test first because it might be expensive if payed out of pocket. On the other hand the result might be needed to convince yourself that you are truely in need of full insulin coverage (which is my opinion).

In a way this was much easier for me. When I was diagnosed in 1987 it was a question of life an death - at least it felt this way. I had burned all my fatty tissue, was full in ketoacedosis and was quickly fading away. After starting with shots it took some days to realize that things are slowly returning to normal. Even in my bad diabetes days this is something to remember: Insulin is life!

You in contrast can try to hold on to your old life. In fact you have for quite a while. But is this really as it has been before? You can barely eat carbs, you feel like crap and deep inside you know that things already have changed and there is no way back. Now I say that it is time to give in. You might loose your old easier life but you will get something back with full insulin coverage. Something like strength, optimism and an excellent statistical prognosis. It is indeed that excellent that most T2 patients would swap any time if this would be possible for them. The first years it will be hard to adjust. But remember Darwin: "It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change". In 5 years you will think that your new normal is just 5% different from your previous normal. With the years this number will get smaller and smaller. This is easier written than done I know - and it is sad. But I and many others on this site have been there too.

Thank you, I'll think about it :-)