Morning Guzzler.Hello and welcome to the forum. Tagging @daisy1 for the info pack offered to all newcomers.
It must be very confusing and stressful a time for you. Sorry I can't help with your numbers as I am T2 but members with 1.5 and T1 will be along shortly to offer advice. Meanwhile, have you been given any medication for your condition?
Have a wander around the forum and ask as many questions as you like.
Hello all, first post here and doing so in the hope of receiving some advice / guidance I would appreciate if able to help.
Was diagnosed as having diabetes with an Hba1c of 10.7% last month there. Never experienced any outward symptoms as the amount of water I have always drank could explain the urination. Due to my age and the fact I was (and always have been) a normal BMI I was diagnosed as likely having LADA type 1.5. Obviously I was horrified at first but having researched (endlessly) I had slowly started to come round to accepting things and seeing it as relatively straightforward compared to some of the other illnesses and conditions people suffer from across the globe. However there still remains doubt about my diagnosis and I don’t feel satisfied that the medical staff I’ve been dealt with know exactly what they are doing. I don’t doubt I’ve developed some form of Diabates but the recent blood tests I have had carried out have done nothing it confuse me!
I am based in russia and my partner has to do all the translating and so on so I have been unable to ask the questions I really want to ask. This whole **** is putting a pretty heavy strain on things between ourselves but that’s another matter ...
My blood results showed the following results - which place a degree of doubt in my mind that I am type 1.5 / on the path to type 1. If anyone can shed some light or context to these I would massively appreciate it.
C-Peptide (fasting) - 1.63 ng/ml (539pmol)
Insulin (fasting) - 5.7 u/ml
Neither of those two results points either way to type 1 or 2 I guess. My antibodies which were done last week all came back as negative. I was tested for 3 different ones and I think - via google translate - they were as follows:
Insulin antibodies- 3.9 IU/ml (ref. 0-10ml)
Beta Cells Pancreatic - 0.26 (ref <0.95)
GAD antibodies - 0.6 IU/ml (ref <1)
Which would indicate I’m likely not LADA or type 1. All very confusing and I am losing my wits over being in russia and not being able to speak to someone in plain English about it! Going back to UK in a couple weeks so will hopefully get chance to understand things better then.
Thanks in advance
John
Hi,Blimey @nyalam - It's never great to have a diagnosis in a place where communication isn't easy. What were the circumstances of your diagnosis? Had you been unwell, or were the bloods drawn as a general check-up?
Do none of the medics you are engaging with speak English? Perhaps you could ask for some sort of translator to be provided by the hospital/clinic next time you are there. I appreciate you aren't in the UK, but the NHS has some decent support schemes in place for those for whom English isn't their mother tongue.
I'm sure it does all sound bewildering for you at the moment, but it sounds like it could be useful for you to write some notes, listing your concerns and questions, for using at your next appointment. That way, it's harder to forget something, and it could make things a bit simpler for your partner, if she still needs to be translating, as she would at least have some forewarning of the questions you want to ask and the topics you need to cover.
Whatever your diagnosis, it takes a while for the dust to settle and some form of "new normal" to descend on things. For most folks going onto insulin, it takes a while for their regime to settle and for dosing to be properly understood.
In UK, you would be offered an education course, covering all sorts of "stuff", but it also affords you the opportunity to meet other people diagnosed with diabetes, which can be really useful.
When you say you're coming back to the UK in a couple of weeks, is that on holiday, or are youreturning for the foreseeable future? Either way, it makes sense to get a GP appointment in the calendar now, to avoid any delays when you get home.
If you have online access to your surgery, you could maybe make the appointment that way (although for mine, if I'm overseas, I need to use a VPN), or maybe you could put a call in, or ask a relative to make an appointment for you. The past thing you need is to get home, then find you can't get an appointment for 3 or 4 weeks.
But I had obviously steeled myself as being a Lada and eventual type 1 - now with the latest antibodies results that seems a lot less likely. I don’t seem particularly insulin resistant either given my perfectly normal fasting insulin levels and slightly low normal fasting c-pep levels.
Hi,
Nah it was just something I had always had in back of mind as I couldn’t remember last time I had checked blood sugars and whilst outwardly healthy and fit I did consume a bar of chocolate a day and maybe a couple pizza (takeaway) a month for watching football etc on tv. Also a big bread eater. No family history of diabetes - type 1 or 2 - but a coworker had her blood glucose kit in school and I had a check. After a glutinous weekend involving eating out in a Georgian restaurant Saturday, a Dominos Sunday and Monday a breakfast of Armenian cheese and herb bread, irn bru (yes can get it here too!) and a couple squares of chocolate after getting to work it was 16.something. Very high indeed - and as stated my Hba1c was 10.7 so I was running high for a while without any noticeable symptoms other than urination which I put down to the fact I only really drink water (and lots of it) with irn bru and cola when eating out / on weekends.
I reckon as I was never overweight on BMI or suffered health issues I may have been running high for years due to my questionable diet choices as they never showed to any great extent other than a bit of podge in belly - but in mid-30s again this isn’t uncommon.
The gf is Russian as I said so she’s been a great help in translating and helping me get treatment and meds etc ... but there’s only so much she can do and as I said earlier this is putting quite a serious strain on relationship as both of us are getting frustrated and tearing our hair out at the condition - and at times I’m struggling to take it all in. I do have questions etc to ask but other than recommendations on diet there’s not been much forthcoming.
I work here as a teacher so I’m home for 2/3 weeks only. Already have a docs appointment set up for the day after I’m back but know full well that it may take some time to referred to a diabetes nurse / specialist. May take the hit and go private - we’lll see.
Thankfully the insulin (Lantus) and glucofage is at such a low dosage just now it’s been pretty seamless and manageable by cutting out the sugars and going to gym a couple days week extra. But I had obviously steeled myself as being a Lada and eventual type 1 - now with the latest antibodies results that seems a lot less likely. I don’t seem particularly insulin resistant either given my perfectly normal fasting insulin levels and slightly low normal fasting c-pep levels.
Diabetes doesn’t seem to be well understood here in russia even tho it is in the top 10 countries of new cases being diagnosed each year. Private care here is expensive for normal Russians and many can’t afford. I reckon the amount of alcohol problems one sees here and lower than normal life expectancy coupled with people incapacitated with missing limbs could be a cause of the lack of diabetes knowledge and access to education and care.
Cheers for the advice
John
Thanks for information Geoff, will keep an open mind on things until I get definitive clarification either way - however I also read that some diabetics can be stuck in a limbo region between type 1 and 2! There’s also the possibility I’ve developed MODY as well .... it’s a minefield.An antibody test can't prove you're not LADA. It can only show that 75% of LADAs are so. The remaining 25% of LADAs will 'fail' the antibody test. Insulin resistance is classically associated with Type 2, so my guess is that you ARE LADA. LADAs have a honeymoon period lasting from a few months to a few years before their pancreas seriously diminishes insulin production. I lasted just over 4 years before going onto insulin, probably thanks to adopting a low carb diet from the beginning.
Здравствуйте
Geoff
Outwith the c-pep and the antibodies are there any other definitive measures to prove LADA either way - or is it a case of monitoring them over the course of the next year to see if they drop?
Again thanks for sharing your experiences on the journey you’ve had ... it’s another example of how hard diabates can be to nail down!Since LADA is an autoimmune type of diabetes, meaning your own immune system is destroying your insulin producing beta cells, I think the presence of antibodies is necessary for the correct diagnosis of LADA. There are several antibody tests, besides GAD, that your GP can perform. That withstanding, beta cell burnout can happen in T2 diabetics, and a fatty pancreas can cause dysfunction, which may cause a T2 diabetic to require insulin. I went for 20 years misdiagnosed as a T2, when actually I was a slow developing LADA. It was so frustrating because I was doing everything right dietwise. I started out low carb, then when that didn’t work for long, I went lower carb, eventually on a very strict ketogenic diet with fasting. I lost over 65 pounds and have kept it off for almost 5 years...but, as soon as I thought I put T2 diabetes into remission, my blood glucose would start creeping up again. It didn’t make sense!! My fasting insulin was normal, my C-peptide was low-normal (if I was a T2, these numbers would most likely be elevated). It wasn’t until I asked my GP for the antibody tests to rule out LADA that I discovered my GAD antibodies were sky high!! I was bummed at first, having to start insulin, but now that my BG is beautiful and running in the normal range, I’m actually relieved to discover the missing puzzle piece that finally makes everything in my long struggle make sense.
Yep Daibell this sounds like it could be a mirror of what I’m going through just now - not only GAD but the other two main antibodies used to test for type 1 were also negative yet if I wasn’t using 6 units of basal per day I think my blood glucose would be much less easier to control and spike more after eating - something which I guess type 2s usually have more control over than Lada going into type 1s.Hi. I've been down the same route. My GAD was negative but my c-peptide was right near the bottom of the normal range and I believe that I was still coming out of the honeymoon period after many years. I suspect that a c-peptide test now would show me below the minimum 'normal' range. My blood sugar control with my insulin has become more critical with increased Bolus ratios. So, as others have said (and so does NICE), that the GAD test can be inconclusive with the c-peptide being more useful as knowing your insulin level is more important than knowing the cause of it being low. This then helps the right treatment i.e. insulin which I was initially refused as I was classed by default as T2. So if you are reasonably slim and having difficulty controlling your blood sugar with various tablets such as Gliclazide and having a LC diet then you are most probably LADA and needing insulin.
Hi. I think all you can do at present is to see how your HBA1C goes over the coming months/years and if it increases then have another c-peptide test done? At least you are now on insulin which is a good treatment even if T2 and not LADA and a Bolus can always be added to provide optimal control. I suspect a non-diabetic would be somewhere mid-range with a c-peptide test as the body should be producing 'normal' insulin levels and not high (T2) or low (T1/LADA)Yep Daibell this sounds like it could be a mirror of what I’m going through just now - not only GAD but the other two main antibodies used to test for type 1 were also negative yet if I wasn’t using 6 units of basal per day I think my blood glucose would be much less easier to control and spike more after eating - something which I guess type 2s usually have more control over than Lada going into type 1s.
I’ve been trying to watch carefully what I eat, but as a mentioned earlier in thread a piece of millionaires shortbread had me up around 10 2 hours after! I know the 6 units basal I currently take aren’t meant to level out post meal spikes but still it showed that my blood sugars are too out of control for me not have insulin.
My C-peptide being 1.63 ng/ml whilst fasting wouldn’t appear to be really low normal either - but you reckon that’s it on the way to being so? Out of interest would you have any idea what the fasting c-pep of a non-diabetic person would be?
Cheers
John
Was at doctor today and that’s basically what we discussed - through interpretationHi. I think all you can do at present is to see how your HBA1C goes over the coming months/years and if it increases then have another c-peptide test done? At least you are now on insulin which is a good treatment even if T2 and not LADA and a Bolus can always be added to provide optimal control. I suspect a non-diabetic would be somewhere mid-range with a c-peptide test as the body should be producing 'normal' insulin levels and not high (T2) or low (T1/LADA)
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