Anyone have any ideas?

[HessianHerman]

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.

 

[EllieM]

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.

Plenty of non diabetics can go that low before meals or after exercise, feeling shaky with hunger. As you say, because you don't know why your body is behaving the way it is, you are anxious. And of course a glucometer reading of 3.8 can correspond to a true reading of between 3.4 and 4.2, due to the inaccuracies of glucometers.... In practice, you'd have to go down to the 2s before falling unconscious (plenty of experience of watching falling bgs when I accidentally overdosed on insulin), but I can understand your fear. And as a non diabetic, if taking a glucose tablet makes your funny feeling go away, why not do it?

I really feel for you in not having a diagnosis, though honestly possibly not being T1 is a gift that many of us would wish to receive. Have they tested for c-peptide as well as antibodies? (IT measures your insulin production). Though it is possible that you are just on an incredibly long honeymoon, I suppose.

Good luck, and welcome to the forums.

 

[MarkMunday]

... 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. ...
Thank you for reading.

You need to insist on a proper diagnosis. The antibody panel of tests being negative would pretty much rule out T1 diabetes. From the low blood glucose symptoms, it could be reactive hypoglycemia. Do these hypos occur after carby meals, like crumpets?

In any case, rest assured that blood glucose will not keep on going down. Especially as you are not injecting insulin. When blood glucose drops below 4 a stress response starts. The consequence is glucose from liver glycogen entering the blood stream, which s why people who have hypos often end up with very high blood glucose. So no need to get anxious.

 

[DCUKMod]

You need to insist on a proper diagnosis. The antibody panel of tests being negative would pretty much rule out T1 diabetes. From the low blood glucose symptoms, it could be reactive hypoglycemia. Do these hypos occur after carby meals, like crumpets?

In any case, rest assured that blood glucose will not keep on going down. Especially as you are not injecting insulin. When blood glucose drops below 4 a stress response starts. The consequence is glucose from liver glycogen entering the blood stream, which s why people who have hypos often end up with very high blood glucose. So no need to get anxious.

Mark, I'm sorry, but I don't agree that the absence of antibodies rules out T1. All it means is there are no antibodies present, in the sample, at the time of testing:

https://www.racgp.org.au/afp/2015/a...tes mellitus results,at the time of diagnosis.

https://www.diabetes.co.uk/gad-antibody-test.html

Differing papers cite differing levels of sero-negative T1, but 20% is about the average of what I have read.

 

[oldgreymare]

I think you need to ask for GAD & related antibodies test to be redone, plus add a c-peptide test if not already administered. Both are simple blood draw tests, but can take a few days for the results to be reported back to your health team (and hopefully then you - ask for results and official interpretation!!). These will help clarify whether you are genuinely T1, pancreatic beta cells possibly failing, etc. That said beta cells can exhibit "fatigue" with high insulin resistance characteristic of T2...short answer keep pestering for more analysis - if you can manage without artificial exogenous insulins that would be great, but lots more investigation needed?

 

[bulkbiker]

I must be because I go low

Not in the slightest.. 3.8 is likely perfectly normal without any medication.
Diabetes is a condition of hyperglycemia not hypoglycemia (those are other conditions).
Have you ever had a c-peptide test to check your endogenous insulin production?
Sounds like a classic case of misdiagnosis

 

[HessianHerman]

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.

 

[Flora123]

Mark, I'm sorry, but I don't agree that the absence of antibodies rules out T1. All it means is there are no antibodies present, in the sample, at the time of testing:

https://www.racgp.org.au/afp/2015/a...tes mellitus results,at the time of diagnosis.

https://www.diabetes.co.uk/gad-antibody-test.html

Differing papers cite differing levels of sero-negative T1, but 20% is about the average of what I have read.

My endo said the other day that 20% show no antibodies.

 

[Kalkie]

A friend of mine has POTS and what she describes is very similar to what you have described. It seems it can also be accompanied by low blood sugar. I wonder if that’s something worth investigating?