Thankyou for you reply, it’s so good to hear from you! I have had pancreas and everything else checked and everything is clear! I was diagnosed last August after a routine blood test and told I was being treated as type 2, I didn’t see a consultant until December who told me I was type 1! I had been buying the libre myself until that point. Nobody has explained why this has happened and as far as I’m aware, it hasn’t been investigated as to why it’s happened?
I’m not aware of having a GAD or C peptide test, if I have, no one has told me?
I have requested to speak to the consultant and hopefully he will phone me in the next couple of days.
Thanks again to you and leadinglights for your input, I am so grateful
Hello
@barrie,
Commiserations! It's bad enough getting a diagnosis of diabetes that is then changed - and now you are left in further uncertainty! To all intents and purposes you have been told you have diabetes, but no longer clear what you should be doing to look after yourself! I really hope the experts get back to you promptly.
I suspect none of us can offer much more wisdom or insight into how you should proceed, until you get further clarity. You need to known whether you are making ample insulin, but your body is resisting that insulin (hence T2, c.90% of all folks with diabetes) or your insulin production is impaired by the auto-immune condition that steadily kills off your insulin production capacity (hence T1, c.10% of the diabetic community). As
@rebrascora has said there are other reasons why you can stop making insulin because of some other physical damage to your pancreas (such as pancreatitis, steroid excesses or even as in my own case surgical removal of my panc'y to thwart pancreatic cancer); but all of these other reasons together account for far less than 1% of those diagnosed with diabetes; confusingly - sometimes that <1% is appropriately diagnosed as T3c (but could be any flavour of T3 a-k) - but (also confusingly) that <1% is frequently not diagnosed as T3something but lazily attributed to T2 or T1: when it is blatantly NOT insulin resistance (=T2) NOR an auto-immune circumstance (=T1).
Even with the right diagnosis from the outset, diabetes is confusing, complicated and contradictory so you are in a wretched position right now. Two suggestions I would make is stay calm (at least your predicament is recognised) and stay alert - taking careful (written) note of things you might now be told by the medical experts. I suspect most of us felt pretty overwhelmed when we each got our initial (and correct) diagnosis and then struggled to absorb and remember everything we might have been told; if you are subsequently still in any doubt, don't hesitate to ask for things to be repeated or put in writing. AND ask for any letters or reports to be copied to you personally (not just sent to your GP) by both post and email; then you can read it all as many times as you might need!
My other thought is while you will clearly want to do anything that keeps you alive and safe - just be aware that it can be possible to "mask" your underlying symptoms, thereby leading to further misdiagnosis. For example if you dramatically change your diet, eg cut out all carbs in the expectation or hope that your diabetes might go away ..... you can not only create a scenario of major change to your metabolism and possible damage to fine blood vessels, but create misleading interpretation of how your body is managing glucose (or more accurately not managing it because it is temporarily not there!). Personally, I would want the experts to assess me in my "normal" state (whatever that is).
You mention earlier that you've had 3 or 4 hypos daily. Are those hypos confirmed by finger pricks and did you actually feel hypo symptoms? It is possible that Libre can tell you that you are hypo, when the readings from Libre are not necessarily accurate. Libre is brilliant for its trend arrows; for reassurance when Libre readings are somewhere mid range; and for helping you identify food or circumstances that cause BG spikes (which you might be able to avoid in the future). But Libre (and all other CGMs) can have limitations. The tech is great to have but it can go wrong and is not necessarily very accurate; not least because Libre is telling you what your sub-cutaneous or interstitial blood glucose is - but that interstitial reading lags actual blood glucose. As you go towards true hypo, Libre might not tell you until after that hypo has already started. Also once you've treated that hypo, Libre might be telling you that you are still hypo or even lower - when your hypo recovery is actually underway. That can then lead to you 'over-treating your hypo', leading to an excessive rebound and getting you onto the roller coaster of hypo to hyper and back again.
Anyway, you've already got lots to keep you frazzled and dazzled!! Good luck and hoping you get a prompt update.
