Stress and confusion over Type 1 - or maybe 2!

M

Mhcrawford0

Member
Messages
9
I was diagnosed with Type 1 10 months ago. I presented having lost weight, was very tired, ketones in urine, fasting BG 14-15. I had just trained for an run a 1/2 marathon, and despite having a minor belly bulge had been in pretty good health and fitness previously - thus doctors assumed type 1.

I have been on insulin for 10 months now and all well (Hba1c 6.4 & 5.8). But on Tuesday a new doctor said that he thought maybe I was type 2 as my GAD antibody test was negative. I was shocked and so spoke to my nurse who said she and the consultant knew the GAD test had been negative ages ago and the consultant had said that he though it was a false negative and I was definitely type 1. Apparently the c-peptide test was not done!

I thought I would experiment and so yesterday I stopped taking insulin. After breakfast (20g carbs) I went up to 12.9, but this came down to 7.1 before lunch (I would normally have been 4.5 ish on insulin). After 150g of carbs at dinner (a big one I know) I came down to 9.8 before bed. This morning I have no synthetic insulin left in me and after abreakfast of 63g I was only 6.2 before lunch, although I had been 10.1 2 hours after breakfast. My fasting level was 7.1 (so diabetic but only just).

Since I must be producing my own insulin, I am now wondering if I am Type 2 and still producing but resistant, or Type 1 and honeymooning?

Could the insulin use have preserved some beta cell function, and me stopping insulin now started up natural production again? If my BG levels have been as they are without insulin does that not then mean that I am Type 1 and honeymooning? My logic being that if I was type 2 and insulin resistant then they would have gone up to what they were at diagnosis, my insulin resistance presumably being the same if not worse than before (I have put on 6lbs on the insulin). And the fact that they have come down surely suggests some increased, if not entirely normal pancreatic function?

I have booked an appointment with my GP/Diabetic specialist and intend to demand a c-peptide test. Is it true that if my c-peptides are high then I must be type 2 and if they are low then I must be type 1?

In the meantime I am not sure about what to do about my insulin. Will I be able to take a lot less (evidence surely of type 1)? And will reverting to old levels just result in huge hypos?

Any personal experience of similar situations, help, advice, answers and so on would be much appreciated. I had just about managed to get my head round having type 1 and now I am stressed out enormously at this new uncertainty. I remember the doctor at the time (who was adamant that I had type 1) said my diabetes would be in flux for the first few years - just not flux between the two types!
 
SamJB

SamJB

Well-Known Member
Messages
1,857
Type of diabetes
Type 1
Treatment type
Pump
Are you doing much exercise? When you exercise your body produces hormones that makes your cells more absorbent so you need less insulin.

I'd still take insulin if I were you, at least until you've discussed this with your consultant.

Could be that you are still in your honeymoon period which means that your pancreas is still producing insulin for a while before finally giving up.

Either way, definitely worth speaking to your consultant.
 
jddukes

jddukes

Well-Known Member
Messages
83
Type of diabetes
Type 1
Treatment type
Insulin
Hi there,

What Sam says is good advice. It might be worth doing a c-peptide analysis however bear in mind the presence of c-peptide does not exclude T1 diabetes. T1 diabetes is not the complete loss of beta-cell function (i.e. insulin production) but a loss to mean proper BG control is affected. Various T1's will retain some insulin production for many years, potentially, albeit at a lower level than necessary for normal BG levels. Therefore the presence or absence of c-peptide is not enough to determine - however in T2 c-peptide is RAISED, as more preproinsulin is being produced. So still probably worth testing for.

How old are you? How often do you exercise?

J
 
PhilT

PhilT

Well-Known Member
Messages
94
Type of diabetes
Family member
Treatment type
Diet only
Write to the consultant, you'll probably get a considered and well expressed answer that will be more use than trying to remember a hurried conversation.
 
M

Mhcrawford0

Member
Messages
9
Update

I have spoken to my nurse and am going in to see her to have bloods done again for a c-peptide and re-run of other tests. I stopped injecting insulin over a week ago and amazingly my numbers were pretty good - between 7.5-8.2 after meals and between 4.5-6.5 before meals. These held for a while but have started to rise about a week and a half later.

Last week 110g for dinner came down to 7.6 after 2 hours (with a 5m run the previous day). This week 75g for dinner came down to 12.1 3 hours later (with a 10m run the previous day). So certainly on the rise. I have also lost 2lbs in the last 2 and a half weeks and am eating incredibly healthily and exercising as usual.

So it does not seem to me that insulin resistance (as suggested by the doctor) can make any sense for this pattern. If my pancreas was constantly in overdrive then surely as soon as I stopped insulin it would have raised levels, and then remained steady - not steady for a while and then this dramatic rise? Or is it type 2 but with reduced beta cell function as well? Does that mean metformin will work for me or will I definitely need insulin?

Ah the questions!

MC
 
elaine77

elaine77

Well-Known Member
Messages
561
I think you're right that if you had resistance (type 2) then your levels wouldn't have sneaked up like that, it sounds like maybe you are in the honeymoon period and producing enough insulin to cope with your current diet. If tis is the case then Metformin would probably help as it makes your body more receptive to the insulin that you do produce. I think it's good they are doing the blood tests again, including the c-peptide as you will have high levels of insulin production if you a type 2 so it should answer that question straight away. Type1 or even 1.5 as they told me I am is a bit more confusing, they still don't know what to categorise me as even though I tested positive for GAD65 antibodies because, apparently, you can have GAD65 antibodies in type 2 diabetes too (around a third of type 2 patients have them according to my consultant). Maybe they missed something in the last tests - keep us posted :)


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
S

smidge

Well-Known Member
Messages
1,761
Type of diabetes
LADA
Treatment type
Insulin
Hey Martin!

Sounds like LADA to me. That's what I have and when I first went onto insulin it gave my pancreas a new lease of life and I could go 2 or 3 days without insulin before my levels started to rise. Then I'd take another couple of units basal and I'd be OK for 2 or 3 days again. I was on a low-carb diet and was clearly producing enough insulin to cope with that as long as i supplemented it with a couple of units basal every few days. Nearly 4 years on, I'm still on pretty low doses of basal and bolus, but I do have to take basal every day and bolus with every meal (even no-carb meals). I definitely produce less of my own insulin now (as confirmed when I forgot a basal jab a couple of months back and my BGs rose to 14 overnight), but I do still produce some. My diabetes progression has been slow and steady rather than any sort of cliff edge - apparently that's typical of LADA's progression whereas Type 1s in the honeymoon phase usually go over a cliff edge one day when their honeymoon ends and need to increase doses immediately. I tested positive for GAD antibodies at quite a high level according to my consultant (and two other forms of anti-body that I can't remember) - I was diagnosed LADA on the basis of that, and the progression of my condition seems to confirm the diagnosis is accurate. I guess the results of your c-peptide test combined with a GAD test and the speed of the progression of your condition will get you a diagnosis eventually.

Smidge
 
Top Bottom