Isn’t everyone covered in the UK??
He could be one of those ketosis-prone Flatbush diabetics . . . so not necessarily.
Well, don’t be wishing for something you don’t want. I consider US health care to be really quite poor and corrupted by business interests. I’ve never gotten a good diagnosis and had poor treatment, I’ve had lots of money removed from my pocket and time wasted with little in return. Virtually all my progress in managing my condition has been through my own efforts. Insurance in the US can make things very difficult. In the end, I’ve decided that an exact diagnosis does not matter as long as I get a treatment that works. So I am a bit confused about your unhappiness. You have insulin and you have a pump. If you are actually a type 2, you might find that oral medications “help” your condition. But frankly, you have yet to achieve an A1c under 7% with insulin and pumping. Why do you think oral medications will get you anywhere near that level of control?
I’m just confused about your unhappiness. I’ve never gotten a good diagnosis, type 2 medications never worked for me. After nearly three years of asking my doctors for insulin I had to obtain insulin on my own and start insulin therapy. At this point in time, I can’t get modern insulins like Humalog and there is no chance I can get a pump. I guess the grass really does look greener on the other side of the fence (or is that the ocean).
Im a little confused by your reply, I have never mentioned oral medications. I first started with Oral medications, lasted 2-3 weeks on them and then ended up in DKA so was switched to Insulin.
My A1c is 6.5 Ij ust havent updated my status yet.
My unhappyness comes from not knowing , having a virtually no diagnosis, yes I have insulin and an insulin pump, guess what, I pay for it! well the pump anyway, I do not get that free. So trust me, the grass is certainly not green over here! (we recently had it removed and concrete put down! )
I was pissed off last night, in a down mood with my diabetes, struggling to get my number correct all day, Im allowed down days, as are anyone!
I would emphatically disagree with OP about the state of the grass here in the UK.
I think we are extremely lucky and well looked after. You only have to spend a few minutes on this site reading the horror stories of what goes on in countries without a national health system. Yes we pay for it through our taxes but at least we get something back, something life-giving and utterly necessary, something that people in other situations have to fight hard for.
Yes, it’s hard to get your local healthcare trust to fund your pump. But one could, in extremis, live without a pump. ALL other diabetes essentials are FREE to the insulin-using patient.
OP, like you I went into DKA and was put on insulin immediately. The hospital told me ‘it doesn’t matter what type you are, the correct treatment is insulin’. The truth is my diabetes is so off the wall, even they don’t know what type I am. Though they did succeed in not losing my antibody tests! But the hospital was right - because we don’t have to deal with evil insurance companies, it does not matter what type you are as long as you are getting the right treatment. And it sounds like you are.
The only thing that would help me improve my diabetes management is a CGM but this is considered a ‘luxury’ which I would have to fund myself. I can live with that. Especially as I’m given free, unlimited test strips.
Not having to worry about where my essential diabetes supplies comes from is a huge huge relief to me, and it is incredibly empowering to have the tools I need to manage a horrible disease I did not ask for.
You can run GAD 65 over and over again. What they told you makes no sense. Insist on a GAD 65. If you do NOT have the antibodies then you are T2 and maybe you can come off the insulin and be ok with good diet – but your body isn’t going to start producing more insulin. It’s going to produce what it produces. Chances are over time that production could decrease but it’s not going to increase. T2 is insulin resistance. What could happen is that you get to a healthier point with your eating that your cells are more receptive to the insulin you do produce so you don’t need the extra. But you should have a cpeptide test run too to see if you are still producing enough insulin on your own to function without the extra. That is a super over similified explanation by the way – but it essentially captures your option if you are T2. If you have the antibodies you are T1. Whether you are LADA depends on how old you are when you get it. I’m assuming that you are adult onset so that means your T1 would group you with LADAs (or type 1.5). The only distinction there is WHEN you will need to go on insulin. If you are LADA, you may have some residual insulin production where you could delay a bit (but there is a school of thought that LADA’s should go on insulin even while they are still producing some). Ultimately as a T1 (or LADA) you will stop producing insulin at all and you will need to take insulin.
I’m sorry you are pissed. I have certainly been pissed over the same problem of not being able to get a proper diagnosis. Diabetes is a complex condition. The tests for T1 are the antibody panel to detect an autoimmune attack and the c-peptide test. Even the most detailed testing does not necessarily confirm or deny a diagnosis of autoimmune T1. Consider these facts
- Only 85-90% of T1 patients test positive for any antibody (there are actually four antibody tests)
- 20% of T2 patients test positive for antibodies but are not considered T1.
- A non trivial number of non-diabetics test positive for antibodies but never progress to ever needing insulin
And the other test for being a T1, the c-peptide test simply measures how much insulin you are still producing. Well, it is pretty clear you aren't producing much insulin. I had the test, I'm low. They can give you all the tests and still you may know nothing.
I do appreciate how much not knowing can bother you. It has bothered me. I've just gotten to the point where I just don't care anymore. I've had to accept a specific diagnosis really does not matter. What really matters is getting proper treatment. And that is why I started insulin last December on my own. So I feel for you and we all have our down days.
If they put you on a pump straightaway and they aren’t worried about GAD65 results etc. then it’s very likely that you’re an “obvious T1”.
I’ve never had GAD65 or C-peptide tests run. I showed up in DKA coma as a kid. So I’m one of the “obvious T1’s”. Except that T1 wasn’t the term when I was diagnosed, it was “juvenile diabetes”. Well, I’m no longer so juvenile (the thinning and increasingly grey hair ought to be a clue!) but it’s still T1.
Many docs and insurance company procedures today put a lot of emphasis on lab tests (and you see this in the questions that you are being peppered with here) but some cases are just so obvious that there’s no need to run a battery of tests (which themselves are sometimes inconclusive, especially when taken out of context of a simple physical exam and history).
Many/most of the obvious T1’s have a honeymoon in the months/few years after diagnosis where insulin requirement drops and indeed it may be possible to go without insulin for a while, knowing that it’s only a temporary honeymoon.
I think it’s great that you’re getting appropriate treatment (insulin, especially a pump!) without having to run the gauntlet of C-peptide/GAD65/etc. that some here insist must be done to “prove you’re a T1”.
Ok, it seems like I have upset some people on here, and that was honestly not my intention.
Yes in the UK our health care is good! we do get insulin for free, test strips depends on where you live! I have to fight to get more than 50 a month! and I use insulin! go figure!? but I get atleast 50 free a month. I am on an Insulin pump because I paid for it, and I pay its on going costs, as because I have no class of diabetes I have no chance in hell of the NHS funding one.
I do feel that if I knew my type I would know if I ever had the chance of coming off Insulin. I was extremely insulin risistant, using about 100 units per day, now I use a total of 20-30 units of insulin a day so my IR has either gone, or dropped massively. I know that to some people, diabetes is diabetes, it is just what it is and I completely understand that, but where I live, my PCT gives no education or virtually any support for anyone as a T2, so I have to fight and pay for everything I get! I wanted to be taught carb counting so I could stop shooting blindly, was told sorry we dont know your type, you cant have it, I had to go private and pay for that, I understand that alot of other people have most likely had to do this too, and its not fair, but yes I once again realise that maybe I and other diabetics in the UK are lucky, we do get free insulin if nothing else (some of us).
I also was quite depressed last night (sorry, not clinicly depressed, well not yet anyway, but was feeling extremely sorry for myself and I guess that came across in my typing, so I apologise for that also)
I don’t think you have upset anyone! No worries. Diabetes is a bummer - we all have down days.
As an insulin user you’re entitled to a medical exemption certificate that gets you free prescriptions. Is it possible to ask your GP to increase the number of strips you get? I don’t think it is a postcode lottery thing, more a GP lottery thing. I have heard some GPs are more supportive than others. If yours isn’t, maybe it is time to change GP.
Are you being looked after by a hospital diabetes department? I am thinking you should, since you had the joy of DKA?
You should definitely track down a definite answer on your antibody tests and then go from there. But you have to be prepared for the answer either way. If you have antibodies and are officially T1, then insulin will be your friend for the rest of your life. Which doesn’t sound like the answer you want to hear. But if the antibody test is negative, you get the T2 label - and as you already know, that means less support for stuff like carb counting. And that doesn’t sound like the answer you want to hear either.
In the meantime at least take comfort in having the tools to manage this crap disease - not just the insulin but also the needles, the lancets, the sharpsafe, the tropical-Hawaiian-sunset flavour hypogels…