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Could I be LADA?

Discussion in 'Type 1.5/LADA Diabetes' started by Burlsygirl, Aug 24, 2017.

  1. Burlsygirl

    Burlsygirl Type 2 · Member

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    Diagnosed with type 2 diabetes in Feb after losing over 2 stone in weight (now 9st9) in just a few weeks. Blood sugar 35 when diagnosed and hba1c 123.
    Now on metformin, gliclazide and empagliflozin (sorry about spelling!!)
    Had 'normal' blood readings finally at end of July but tested a couple of times recently when feeling odd and randomly tested around 10 which is too high really!!
    Have added another glic at lunchtime and booked doctors appt but just really wondering if anyone else has experienced this and what the future may hold...!?
    Tried to keep as brief as possible!!

    Sent from my HUAWEI VNS-L31 using Diabetes.co.uk Forum mobile app
     
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  2. GrantGam

    GrantGam Type 1 · Well-Known Member

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    I find rapid weight loss somewhat of an atypical symptom to what a GP and endocrinologist would normally associate with T2 diabetes.

    Request a GAD antibodies test and C-peptide test. They're you're best markers of being T1 or not.
     
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  3. Burlsygirl

    Burlsygirl Type 2 · Member

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    Thank you!
     
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  4. Kristin251

    Kristin251 LADA · Expert

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    Sudden severe weight loss is a huge indicator for type 1 ( lada).
    Get those tests. You might have to fight. For some reason docs don't like doing them but sudden weight loss mandates them
     
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  5. Devitt81

    Devitt81 LADA · Member

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    Hi

    I went to the drs a couple of months ago due to a sudden weight loss of 3st over 6m. My fasting blood was 17 so i was referred to the clinic as an emergency referral.
    After a month on metformin and gliclozide my bloods are between 4-9 which is great.
    I've had a check up today and the consultant has said that the carried out the above tests when I was there last and it shows I have LADA and it's common for people over 30 to be misdiagnosed with type 2. I've been told
    at some point my tablets will not work well and my glucose levels will shoot back up and at this point i will need insulin.
    My consultant is great and I would definitely ask them to do the tests on you.
    Lisa x
     
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  6. azure

    azure Type 1 · Expert

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    @Devitt81 Your avatar is still showing you as Type 2. You can change that to Type 1/LADA by editing your profile :)

    Don't worry if insulin is suggested sooner rather than later. Some studies have shown it can preserve any remsining beta cells for longer and is preferable to other medication.

    We have a number of Type 1/LADAs here and a fair number were initially misdiagnosed like you were. It's a pity there's not better awareness that Type 1 can develop at any age.
     
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  7. Daibell

    Daibell LADA · Master

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    Hi. Yes, you have a good consultant there so keep hold of him/her. I'm one of those mis-diagnosed and still listed on my notes as T2 but on insulin for 5 years now. Don't worry about insulin as it's easy if a nuisance at times. Yes, don't stay on all the tablets for too long but it sounds like your consultant will swap you when needed.
     
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  8. chrisy62

    chrisy62 LADA · Newbie

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    It seems the reason for not testing is that the test cost twice as much as the normal hb1c, and a lot of NICE areas won't pay for them. It took three years for me to be finally tested, and found I was LADA, they changed my meds and now my readings have come back to normal. Still can't loose this final couple of stone I would like too. Doc said it's catch 22 as the insulin fights to keep your weight up, not sure how true this is but I don't let it worry me as long as I feel healthy and results come back ok I'm happy.
     
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  9. Ixarix

    Ixarix Type 2 · Well-Known Member

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    This sounds like me too. I experienced rapid weight lose recently. I lost about 30 pounds over about eight months. About two or three weeks ago I'd been to visit my doctor. During this visit he told me I was diabetic and initially we were going to treat it as type 2. But the following day I was feeling really lousy so I went to the hospital and they wounded up keeping me there for a week. My sugars were pretty high, and things were really out of whack. So I was put on an insulin iv, and saline iv to help flush out my system. I'm not sure what tests I was given, but too my good fortune the endocrinologist was working in the critical care unit as the doctor on staff while I was in there. She was able to examine me there, I'll be seeing at the end of the month. Hopefully she'll clarify things. Now I'm currently classed a type one. I'm now on insulin (lentus at night) metforman at meals. I feel much better now and I think I may be gaining some weight back.
     
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  10. RFSMarch

    RFSMarch Type 2 · Well-Known Member

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    I lost about a stone and a half in 3 months and after being diagnosed as Type 2 (and specifically asking if I was Type 1) since then things have stabilised well for me. Good that the hospital reacted so quickly to your condition and kept you in for the week, and I think at least moving you to Type 1 and treating with insulin (from what I read anyway) is a step in the right direction if you do turn out to be LADA.

    Keep us up to date as to what the review at the end of the month says as it may help others. I suspect as I stabilised, my weight has stayed steady since the diagnosis and that my bloods have come right down with a few tweaks to diet and exercising more, I suspect I was correctly diagnosed as Type 2, but will certainly now keep an eye on my levels, AND my weight and how I feel a lot more.

    All the best for your journey.
     
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  11. elaine77

    elaine77 · Well-Known Member

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    I had gestational diabetes in 2010 when I was slim, pregnant and 23 years old. I was told it went away after I had my baby. Fast forward 2 years and I had all of the symptoms back so off I pop to my GP aged 25 with a BMI of 23 who takes one look at me and tells me I’m too young and too slim to be diabetic.

    Did a BG meter test and blood was 15.4mmol;
    did a urine ketone test and it was bright purple;
    Referred to consultant who did blood tests and found cpeptide was at the very bottom of ‘normal’ range and that I had GAD anti bodies.
    Told me I was type 1.5/LADA gave me metformin and told me to control BG with diet and metformin.

    Fast forward another two years to 2014 and BG has gone right up;
    I lost 2 stone in 6 months;
    Ketones back up in urine.

    Went back to the consultant who started me on Humulin mixed insulin.

    Fast forward to last month when I go back to consultant as I don’t think mixed insulin is cutting it as hba1c wen right up to 70.

    Consultant puts me on basal/bonus regime;
    Tells me I’m a type 2 diabetic with insulin lack;
    Doubles my metformin dosage!!

    I’ve had no bloods done for the cpeptide or the GAD antibodies since 2012 and now all of a sudden I’m a type 2 diabetic!!??

    I’ve now asked for a referral to a different hospital for a second opinion because it’s ridiculous how many people could be sitting there completely misdiagnosed and skewing the statistics the nhs love to roll out!
     
  12. Circuspony

    Circuspony Type 1 · Well-Known Member

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    Also misdiagnosed as Type 2 - despite weight loss, ketones in urine etc.

    Consultant in A&E was horrified because by the time I got there 10 days after seeing my GP my BG was so high that none of their portable monitors would read it. Apparently if you present with ketones then the GP should assume type 1 (no matter your age or weight) and refer to A&E / Diabetes team for treatment.

    Late onset type one is not well recognised. I even had a triage nurse when I went for an x-ray tell me that I couldn't have been diagnosed as type 1 as it was a disease of children, not middle aged women.

    Push back on your GP. Insist on antibody tests and a referral. The sooner you get on insulin the quicker your remaining beta cells are protected.
     
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  13. davestretty

    davestretty · Member

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    Developed diabetes in 2007, tired, no energy, thirst, weeing but no weight loss at all (BMI 35). No tests other than hba1c carried out. Tried diet- no effect, tried metformin - little effect, gliclazide - little effect, Byetta - no effect (very sick for a month so taken off), Victoza - no effect (6 months before stopped due to side effects). All this over a period of three years with weight stable.

    Finally referred to hospital and put on Levemir (basal) in about 2011(with Victoza) which was improved hba1c slightly but also caused some hypos due to high dose (120 units/day) Still no blood tests done. Put on Novorapid and Levemir in 2013, dosage around 25 units Novorapid at meals and 120 units levemir day/night. Better hba1c but more prone to hypos (very dependent on food/insulin/ and particularly exercise balance - started gym and swim) Also put on about 15kg (2.5 stone) within 2 months of starting Novorapid! Dietician then told me to use less insulin which of course made hba1c rise. Very insulin resistant, very exercise dependent, very difficult to control.

    So to 2017. Still exercising, still using Levemir/Novorapid (60 novo 120 leve per day), now using metformin as well, still having occasional hypos but now much less hypo aware, still no energy and falling asleep, Hba1c now up to ~7.5-8.5. Finally in Nov 17 persuaded GP to carry out anti GAD blood test. You guessed it, measured anti GAD 1750 (max should be <5U/ml) so finally diagnosed as LADA/T1 with extreme insulin resistance.

    Already suffering diabetes related problems. If I'd been tested and started on insulin much earlier I might be healthier now. BTW never been sent on to any of the courses to help manage diabetes either. Treatment by hospital consultant was actually worse than GP and diabetes nurse.

    Still exercising (gym/swim 3 times a week), BMI now 41, never lost any weight at all despite exercise and diet changes (sorry lost a stone when I was really sick on byetta due to dehydration but put it back on as soon as I stopped injecting it)
    Was I let down?
     
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    #13 davestretty, Feb 9, 2018 at 5:15 PM
    Last edited: Feb 9, 2018
  14. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    Yes!
     
  15. davestretty

    davestretty · Member

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    yes but what can I do about it. I can't turn the clock back and I will probably be more damaged and die earlier due to misdiagnosis.
     
  16. Seacrow

    Seacrow LADA · Well-Known Member

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    Oh wow, you could be my twin. Same drug reactions (you stuck with Byetta for a month !!?, I quit after two shots), same slow increase of insulin resistance, totally unable to lose weight, and the icing on the cake, first referral to an abysmally **** consultant. Also beginning with diabetic-related problems, but I'm 17 years in, so....

    First thing you have to do is get yourself a diabetic team that YOU are happy with. Your GP can refer you to any hospital diabetes department that you are willing to travel to, so shop around, find a good consultant (word of mouth or web reviews etc.) and get referred there. If you're happy with your gp and nurse that's good, otherwise, again, shop around. My doctors surgery has one gp who is extra interested in diabetes and willingly takes all diabetic transfer patients. Some places you get a choice of who does the diabetic eye screening and some you don't. Oh, and ask your consultant to cc you on all letters to your gp - amazing what you find out that way.

    Never listen to a dietician. Mine told me to eat more carbs and reduce insulin too. I asked her if she also recommended alcohol to patients with liver failure, and got kicked out of the clinic.

    You have to be in charge of your treatment. If you want to go on a dafne/desmond type course, you have to demand that from a doctor.

    Most important, though, regardless of past damage, you need to stop more damage being done. Keep your blood glucose within limits. Test and test again (I can't believe I'm saying this, I hate testing, it hurts and its messy). You might want to consider if a pump would be helpful, I found the ability to change basal rates for different levels of exercise made a huge difference - something to discuss with a good consultant.

    Good luck.
     
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  17. SueJB

    SueJB Type 1 · Well-Known Member

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    Hi, I still wonder about my diagnosis and if it's correct. I'd lost 17k over 2 years which was fine by me. It was when I started glugging water like it was going out of fashion I thought about diabetes. To hospital saline drip. Had to go as an outpatient for 2 days, arm drained of blood... well that's how it seemed to me. Turns out they weren't sure what I was HbA1c 118, ketones 2.4 but finally went down to 0.5 after 3 days. They decided to treat it/me aggressively and straight on to Levemir twice daily and Novorapid bolus. The Levemir was originally 4 units, then went to 5 and I've now decided on 3. So I'm really surprised at the number of units you have. I haven't had a GAD test or c-peptide but think because of your experience I should push for them. All I know is that despite not eating many carbs generally 50-75 and calories of 1000, I'm putting on weight, 7k in 6months. The dietician wasn't that helpful, DSN just wanted to look at my stats and gave no information and the consultant covered the same ground as the DSN. I just wonder do I really need this fat making hormone called insulin!!!!
     
  18. Alison Campbell

    Alison Campbell Prediabetes · Well-Known Member

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  19. SueJB

    SueJB Type 1 · Well-Known Member

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    To be honest, I don't know how diabetes is diagnosed so as no one has said "because of such and such data/statistics, we can say you're T1 or possibly T2" I don't know if they did a GAD test or not or how the results are measured. Do you know?
     
  20. Alison Campbell

    Alison Campbell Prediabetes · Well-Known Member

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    I thought matters were pretty clear from your other thread but asked an experienced type 1 to comment hoping it would be helpful to you https://www.diabetes.co.uk/forum/threads/bamboozled.134882/#post-1686235

    Perhaps discussing these test results from the research project with your Consultant would be the best way forward.

    I'm just an interested amateur. My grandmother had type 1 and my Dad has LADA. I'm pretty certain I have type 2 but not completely. Loads of information on the forum, website and further.

    https://www.diabetes.co.uk/gad-antibody-test.html

    http://www.practicaldiabetes.com/wp-content/uploads/sites/29/2017/07/TT-Misra_P.pdf

    http://www.southend.nhs.uk/pathology-handbook/test-directory/test-directory-g-index/gad-antibodies/
     
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