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Type one or two?

Discussion in 'Newly Diagnosed' started by rub3z, Feb 6, 2019.

  1. rub3z

    rub3z · Newbie

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    Hi guys!
    So i'm a 24 year old and I've recently been diagnosed.
    So, I know only tests can really provide a definite answer...but I thought I might ask for your opinions because i'm so confused!

    I stayed in hospital around December 20th last year with DKA a HBA1C of 13.7% and a fasting blood sugar of around 18, and ketones were at 3. Before this, I decided to get tested for diabetes as I had lost 20kg over around 3-6 months without really having to try, was always needing to pee, super thirsty all the time (you know all the usual symptoms). I have only just been able to see an endo today, I was told by my educator, my two hospital doctors, my nurses in hospital that I had type one. It never crossed my mind that I might be type two? But now my endo is sending me for tests 'incase it is type two', he said if it is he will take me off insulin and put me onto tablets. That kind of scares me because I'm currently on 12u of Lantus each night and around 6u of novorapid before each meal (depending on carb intake etc). I honey mooned for like a month and now my educat or thinks i'm not because my levels were so easy to control at first and now I find myself struggling to get my levels below 12 sometimes- and my diet hasn't changed I've been super healthy since diagnosis (I started out on 10u lantus and 2 units novorapid but had to up it to try and control this). I kind of had accepted my diagnosis and now I feel a bit thrown by my endo? He said that type one is usually diagnosed in childhood, which I knew but I also thought it could be diagnosed into adulthood as well? I just feel like i'm not really being listened to, and he's going against what everyone else has said. Has anyone else had something similar happen? I just feel a bit thrown and confused now. I feel like my insulin has literally brought me back to life, I can sleep a full night without needing to pee like I have energy, I feel fairly normal again (apart from the highs and lows lol). I'm scared based on one test result he's just going to take me off my insulin? Seems a bit drastic!

    Thanks!
     
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  2. HSSS

    HSSS Type 2 · Well-Known Member

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    Hi, welcome to the forum. As you rightly say we in here can not diagnose you and at least you’re having the relevant tests to be sure which it is. Take a good look around some of the other sub groups too. Lots of knowledge and experience in here for sure

    It does indeed look to me a novice when it come to type 1 that is the more likely but I’m sure others much more knowledgeable in such things will be along soon. Sadly even amongst professionals there is disagreement and a lack of current knowledge in some. If you do turn out to be type 2 then don’t despair at a change of medication. Indeed as a type two there are lifestyle and diet changes (low carb) that may help, perhaps enormously, that aren’t always options for type 1’s in the same way. Try and hold out for the test results and once you have all the information then make plans from there. Perhaps he’s just being thorough (a good thing) but not expressing himself clearly enough to not concern you.
     
  3. Rokaab

    Rokaab Type 1 · Well-Known Member

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    That is what they all used to believe, however now many adults get diagnosed with T1, including such people as Theresa May, ie. its just an outdated belief by your endo.
    Just because you're having problems controlling it with insulin does not mean you're not T1 - I know mine wasn't well controlled for donkeys years (admittedly there's a lot better tech available now and for a good while I just wasn't taking care of myself, even so it doesn't always play fair even when you are doing your best)

    And as @HSSS says you just need to wait for the results. whilst we could guess it probably wont help :)
     
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    #3 Rokaab, Feb 6, 2019 at 10:59 AM
    Last edited: Feb 6, 2019
  4. PeterHud

    PeterHud Type 2 · Active Member

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    Hi am welcome to the forum where great help is here.

    I am T1 recently diagnosed and I am 55 and no others in family have diabetes so saying you cannot get it when older is wrong.

    You had the same symptoms as me. Weeing alot. Bad night sleep. Drinking alot. Loosing weight

    Like you said insulin makes you better. Same here I feel tons better. Don't weeee as much don't drink during the night and sleep tons better

    At first they didn't know if I was T1 or T2 they did loads of blood tests CT scan etc etc so if they ask you to do this then it's for a reason.

    Were those readings in hospital ? If so I wouldn't be too alarmed as mine were hospital food in a diabetic ward was sugar high. Yes I know sounds crazy but once I left hospital mine have gone to a manageable range.

    Keep us updated on your journey
     
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  5. porl69

    porl69 Type 1 · Well-Known Member

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    Type 1 can come on at any age, looks like your endo is living in the past! All I can say is wait for the tests to come back and see what type you are. Any guesses off here would be purely guesses and may not help at all. Good luck and keep us updated
     
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  6. SimonCrox

    SimonCrox · Well-Known Member

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    Glad that you are feeling better on insulin.
    On this forum, one is not allowed to give diagnoses (but I would totally agree with your conclusions from your symptoms, and DKA) and I would rarely criticise another healthcare professional cos we don't always know the full story.

    T1DM and age of onset - this is more common in young people eg teenagers, but once one gets to 30, one still gets T1DM arising and this same rate holds into 80's - so you are young, but even if you were 80, you could still get T1DM.

    There is a subtype of T2DM that presents with DKA (ketosis prone T2DM), but these folk are generally Afro-caribbean (although does occur in other ethnic groups), and the person looks like a Type 2 diabetic person ie family history of diabetes, overweight (although overweight folk can still get T1DM), and older than you. I think that this variety is unlikely in you. It doesn't hurt to test, and it will totally clarify the situation.

    But the classical symptoms, marked weight loss and DKA would make most people agree with your and the other healthcare professionals' diagnosis

    Best wishes
     
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  7. Deleted Account

    Deleted Account · Guest

    Sorry to read of the trouble you are having and the ignorance of your endo.

    I have mentioned many times on this forum about the study a couple of years ago which concluded more than 50% of people with type 1 diabetes were diagnosed over the age of 20 so this perception that it is "usually diagnosed in childhood" is a load of hogwash (that was the politest word I could think of).
     
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  8. Daibell

    Daibell LADA · Master

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    I think you need to get a new endo. From what you say you are almost certainly T1. To go away from insulin back to tablets when insulin is needed and doing the job would be bizarre. Note that although a GAD test may be negative but that doesn't prove T2 as viruses etc can cause beta cell death. A c-peptide is the more useful test. I'm fairly certain my LADA was due to a virus and I met another woman recently who also developed LADA following a viral attack. In 5-10 years time the idea that a few antibody types are the only cause of beta cell death and hence define 'T1' will be consigned to history.
     
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  9. Circuspony

    Circuspony Type 1 · Well-Known Member

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    I was diagnosed T1 at the age of 43 with no family history. I suspect the tests are for antibodies. If they come back positive then you are definitely T1 but even if negative you can still be T1 - & I think your symptoms and response to insulin would suggest you are.
     
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  10. EllieM

    EllieM Type 1 · Well-Known Member

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    I was diagnosed in 1970 when there were only 3 recognised forms of diabetes: T1, T2 and gestational. In those days, the young and thin got T1, the old and fat got T2 and the pregnant got gestational. And the T1/T2 ratio was about 50-50. But even then it was recognised that you could get T1 up to the age of 30.... So I really don't understand how an endocrinologist could say that the OP was too old for T1 at 24: that's never been the case....

    And though we can't diagnose, I agree that the OP's symptoms sound like classic T1.

    To give credit to the endo though, they are probably just trying to cover all their bases. There are plenty of misdiagnosed T1s/T2s posting on these boards, it doesn't hurt to do due diligence at the beginning to make sure that @rub3z gets the right treatment.
     
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  11. rub3z

    rub3z · Newbie

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    Thanks so much for your replies guys! Sorry I haven't been responding, this is my first time using this forum and I couldn't work out how to get back onto it (oops). I just read all your responses and really appreciate your input.
    So, bit of an update! My endo won't see me again until September?? Which is super annoying to me. I get hes a specialist but i'm going to try and find another one on my own so I can be seen sooner.
    I tested positive in the GAD antibody test, I went to see my GP for those. Apparently someone should be below 5 and my number was like 234, so she said the chances of me ever coming off insulin are super low, she also said endo needs to confirm but shes pretty confident i'm type one.

    My C peptide test was uploaded onto this gov health portal and it's 0.45 nmol/L, which is in the normal ranges of 0.2-0.9. But, my next question is if I am honey mooning (i'm a bit unsure if I am, but things seem pretty easy again in terms of keeping levels down) wouldn't my c peptide test still be within normal ranges, because I would still be producing some insulin?

    My endo also did a fasting insulin serum test and that came back quite high at 16! Supposed to be 12. But he said this test wouldn't really matter because it would take into account the insulin i'm injecting? So really unsure as to why I even did that one. Just waiting on another antibody test result to be uploaded now, but until I find another endo i'm playing doctor google at the moment and trying to understand them as best I can.

    Also, I did call my educator (shes lovely and they work in the same clinic) and tell her about how I was a bit frustrated not knowing what was going on. She said my endo just transferred from working at a childrens hospital so is still learning. My endo then called me because he must have heard I was confused, he said hes fine not seeing me until September because with my BG levels I obviously need insulin and he knows I can't come off it. So that left me even more confused, because it was different to what he told me during the appointment. Anyway, trying not to dwell on it (as much as I can) and just focus on keeping my levels in range :).
     
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  12. rub3z

    rub3z · Newbie

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    Hi Peter!
    Those readings were in hospital yes. The hospital food was crazy lol, my dietitian came into see me and everything she said I shouldn't eat they had fed me. It also took them a day to get me onto insulin so my sugars wouldn't come down! My educator was shocked they didn't have me on it and got me onto it straight away because they kept feeding me potato and were wondering why my sugars wouldn't come down haha. My levels are pretty good now too! I eat pretty healthy but yes the highest i'll go now is about 12 and that's only after a meal, my insulin brings it back down after two hours. I'm on twenty units of lantus now though! Educator put me up because fasting sugars were always high still. That's kept it in control now :)
     
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  13. rub3z

    rub3z · Newbie

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    Yep I was pretty shocked when he said it because hes also quite young so I didn't really expect such an outdated statement from him! Felt like a slap in the face when literally everyone (including google lol) have told me that you can get it at any age. Made me doubt it a bit though because obviously hes a specialist and I have some level of trust in what he says, but a totally false statement.
     
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