In limbo - what to do when diabetes type is uncertain?

[everydayupsanddowns]

We has an interesting side discussion to a thread recently where people were sharing resources they wished they had been directed towards at the beginning of their diabetes journey, and especially if they had to wait (sometimes a lengthy period) while the exact nature of their diabetes type was confirmed.

Unfortunately some people are left in ‘limbo’ like this with not very much guidance on what to eat (or be cautious about eating).

Are there resources or overviews you have found helpful?

 

[Inka]

I think it would depend on the meds the person is on. What would be helpful would for people to be given a general meal plan with carb amounts whatever meds they’re on, but I’ve not seen any general resources for that because it depends to some extent on the individual as well as their meds.

I do think some of the type testing is just for confirmation - that is, that the type is pretty much assumed from age/weight/symptoms/ketones, etc, but tests are done to be certain. In those cases, I’d hope that the person was given guidance but just reminded that the type wasn’t yet confirmed.

 

[Sara Grice]

Good place to tell my story

It was caurght my a routine bloodtest in my case.
my diabeties type was uncertain for over a month when we had to wait for test results to come back. I didn't have symptoms of DK (witch can happen in type 2 but is less common) and had a family history of type 2 (my dad and my grandad) and am overweight with not the best diet. so my doctor booked me in for a antibody test to figure out the type but we both agreed it's most likely type 2 so he put me on metformin, no insulin and told me to watch about of carbs I ate. Was ment to get the results within a week but sadly something went wrong down the line (the doctor even phoned be to apologise about the wait) and so when the test came back type 1 it was a shock, but learning that one autoimmune disease normaly means you are at risk of others made it make a bit more sense sinse I have celiac disease and thyroid issues aswell

dunno how much I can add though as I was never put on any insulin and wasn't admitted to hospital like alot of people are before diagnosis. So I was never bad enough to be put on insulin when presumably type 2, and I'm glad I wasn't as thst sounds like the easiest way into a hypo lol

So yeah doctors can make guesses to the type, and I'm sure they are mostly right, but I'm my case it wasn't

 

[SB2015]

My limbo was very short lived as I ended up in DKA. Looking back I can see that I was showing symptoms of T1 but had no idea about any of it at that time. Sadly when I was admitted to hospital on the Wednesday thinking I had had a heart attack, they asked me if I was diabetic but I said no, so no one tested for it. A simple BG might have set things in motion, however I was sent home and told to see GP for further tests. The loss of 1 1/2 stone in one week, led a locum to test glucose levels and do an HbA1c on a Friday afternoon. He assumed I was T2 told me to get another appointment to review results the following week. Friends told me I looked horribly ill that weekend. By Tuesday I was in DKA and the Gad Antibody test was done in hospital which confirmed T1.

I think had I been told more about diabetes and ketones as well as given testing kit for BG and ketones I could have picked it up earlier and gone to A&E before going into DKA. However it was all a bit quick and perhaps I should have seen a doctor earlier but the tendency is to just keep going and I was getting 250 students prepared and checking their work placements at the time - stressed and tired.

 

[JimG]

I was not in limbo. I was diagnosed as type 2. How you tell the difference between the two types, the antibody test, was a complete mystery to me then. I did ask how the GP could tell the difference but can't remember the answer in detail but it was along the lines of symptoms, age, family history etc. I've rechecked my records at the GP and can see no signs of such a test being done in 2009. The GP had written "Single result but symptomatic and so able to code". I do remember him saying that we would try metformin and diet to see how we (i.e. I) got on. As it turned out, this worked. Was I lucky or was the GP experienced enough to be able to tell from the symptoms? I always liked and trusted the GP and so would like to believe the latter.

 

[everydayupsanddowns]

I did ask how the GP could tell the difference but can't remember the answer in detail but it was along the lines of symptoms, age, family history etc.

Yes that’s what I’ve learned - it’s really the clinical presentation that’s the best indication. Partly because antibody checks can give false negatives and false positives, as can cPeptide. So really it’s the nature of the presentation that gives the clearest information.

But, of course, this does require the person distinguishing to think slightly beyond child=T1 and adult=T2.

And over the years we’ve had various members who seem to fall very much between types, and have a form of diabetes that’s very hard to fit into the standard boxes.

 

[helli]

If we are talking stories, I was diagnosed with Type 1 in my mid-30s. There was never a discussion of type 2. The diagnosis was "you're too slim to have type 2 so it must be Type 1".
Thankfully, this was right and I had no uncertainty but it seemed very unscientific.

With none of the uncertainty, I needed none of the uncertainty tools. So my thoughts are purely theoretical based on discussions on the forum.
There seems to be two approaches
- treat as Type 1 with low fixed doses of insulin
- treat as type 2 with Metformin.
Occasionally, Glicazide is mentioned but this seems to be controversial because (to my untrained mind) it works by encouraging extra insulin production. This can be troublesome if you have Type 1 so your pancreas is unable to produce insulin and such a drug will put extra stress on it.

If the uncertainty was my introduction to diabetes, I would want to know which questions to ask or what information I should expect. For example
- how will they decide?
- how long will the uncertainty last?
- what, if any adaptation should I make to my diet?
- what symptoms should I expect and what symptoms are most worrying?
- do I need to inform any authorities like DVLA, employer, insurance?
- is there anything I should avoid (e.g. holiday) until I the uncertainty is over?

 

[saffron15]

I was diagnosed type 2 last year. I had thought my annual blood test to review high BP was tested each year but they stopped bothering when they stopped urine tests. I was overweight and went from getting up to pee once sometimes twice in the night then in January last year there were occasions when I almost didn't get sufficient warning but it wasn't on a regular basis. I suspected I was diabetic but told myself they were testing and would contact me. My cousins wife 5 days younger than me died of a diabetic related heart attack last February. Still I did nothing. Had my blood test in May and was contacted about creeping cholestral. I asked about diabetes test. Had not been done. Have now discovered had an hba1c in 2014 was 40 not told and not repeated. Had a test at my request. It was 69. HCP expressed surprise I seemed shocked. I changed my diet even though he said needed second test to confirm. Next month it was 64. It didn't occur to me I would be type 1. I have uveitis which is an autoimmune condition ( cause unknown) and hospital tested for diabetes in 2008. I don't know result except I wasn't diabetic. I have no relatives with diabetes. I found being diagnosed stressful enough without the worry of being type 1. I told my slim sister and she has been tested and isn't. I've not seen a Doctor. I think type 2s just get on with it.
As far as resources, there is an nhs website in found last year based in New Forest that I wish I had seen when first diagnosed. It has links to lots of websites with videos and information.
A week after second test I found the Diabetes helpline and they were great.

Diabetes & Metabolic Health | New Forest PCN

newforestpcn.co.uk