So here's a heart attack for all the good LADAs....

[phoenix]

You're far from alone.
I was going to say that it's almost 10 years since I was diagnosed actually it was in 2004 so it will be 11 years in April. It was just before my 53rd birthday . I went straight onto insulin and wasn't misdiagnosed This was only because I'd misdiagnosed myself 3 years before and tried to control with diet and exercise for 3 years.
I spent 10 days in hospital (not in the UK) I hated it but I now realise how helpful that was in helping with acceptance and how to cope with insulin in a safe environment.
It really does get easier, carb counting becomes automatic and you get very good at estimating . Learning to adjust insulin becomes more simple when you know how your body reacts to different types of foods, exercise (and lack of it) etc ; keeping good records at the beginning is a hassle but well worth it in the end.
I feel very well and have been able to live a very full and active life. In fact I've probably done more than I would have done, just to prove that I can. I was determined that I wasn't going to let either increasing age or diabetes stop me. (2 marathons; very slow but I finished, several 100km of long distance footpaths, skiing even had a go at rockclimbing; ) I don't always get it right , I do more often now than at the beginning though (probably have a bit less insulin of my own now which I find makes control easier,.) Hypo rather than hyperglycaemia has probably been more problematic for me but I've never needed help or what I would consider a really serious hypo
I've found exercise is really important but you really don't need to do that much!. What I think is important is to decide what type of lifestyle you want to lead and do it. Learn the skills to control your diabetes so that it doesn't stop you because unfortunately if you don't take that control then can restrict you .

 

[Ian DP]

Hi karen
I was 58 when diagnosed T2 (my 1st ever stay in hospital), never been overweight, then 3 months later reclassified T1 LADA (via a phone call from the UK whilst I was in Australia). It takes a while to come to terms with it all. For me, the more I have learned about it the more able I feel I can cope with it.

My advice is to troll through loads of these forum posts, read, educate and understand as much as you can, never fully believing one post until you read similar posts with similar observations. What works for one person does not always work for another, but it seems that when multiple people say something works around 90% of the time it works for me too, and thus worth trying.

Eg. Most of us find a low carb and high(ish) fat diet helps.

I would say that 90% of my diabetic knowledge has originated from this forum.... Whether this is books to read, web site links or food ideas, the members of this forum have it all..... Keep searching and reading.

 

[Frankie-A]

Hi everyone. I was admitted to hospital last may with a temperature of 41, after 5 days of iv fluids n ab's i was allowed to go home but they then dropped a bombshell by announcing that i was t2 diabetic. I'd had bg levels of 13 the whole time i was in there apparently, so as a slim 53yr old i was shocked! They showed me how to test my bg gave me gliclazide and sent me home. I was on gliclazide for a ciuple of months then started having hypos all the time, which i found extremely scary. I was told to stop the pills and had to go for a gad. Yep, I'm lada, my first thought was what the hell is that and why me! October 2013 i was put on very low dose of novorapid and given my background insulin all ready for when i will eventually need it! I've tried it but not regularly. I had hypos all the time. I needed help and wasn't getting any from my gp. I sat trawling for apps that might help, like carb calculators etc but I have to say the most amazing one i found was an insulin calculator, it was brilliant, it took the guesswork out of how much insulin i should take according to what i was about to eat, it even told me how much to take just to correct my bg levels. But... I HATED this happening to me, i felt like i had totally lost control of my life and every minute and everything was ruled by my diabetes. I drove myself insane reading everything trying to understand all about lada. I don't even know anyone that's diabetic! Insulin made me put on weight because i was eating more. I have had "issues" with food and putting on weight for yrs. So i stopped injecting and buried my head in the sand. To be this age and have to totally change my non eating habits was impossible. I even stopped testing my bg. I knew i had to try something so recently asked my gp to try me on metformin, omg what a mistake, being so harsh on the stomach is the probable explanation as to why i am now recovering from a flare up of colitis (another autoimmune desease) which has led me to you! I read on fb at 4am when sleep eluded me, about a miracle cure for diabetes, i have spent hrs reading everything i could find and have come to the conclusion that it's all a scam, but I'm not sure after all these hrs how i found this forum but i did! I have read everything you guys have said to Elaine77 and her issues regarding insulin and i THANK BUDDA i did! Laying here in my sick bed having a pity party for one it has woken me up into accepting what i must do, i must start using my insulin and permanently this time! especially now i am on a high dose of steriods which have sent my bg rocketing! No more ostrich impersonations from me. Reading all your comments have been so enlightening and i somehow felt less alone in the lada world. I wish I'd found you sooner. ..

Welcome Karen and all the best. It sounds to me like you've made a number of very good decisions - like finding out more about LADA, using insulin, tying insulin dose with your carb intake, etc.
In terms of how we think about things, rather than taking the view that my life is ruled by diabetes, I prefer to think that I am now in control of my health, whereas I wasn't before. I didn't take my health that seriously, not in terms of what I was putting in my body. Now I'm in charge, though. (This sounds too preachy by far, but it's how it's happened.)

 

[Cherryred]

Hi Karen.. I am new here too. I just wanted to say welcome and you are not alone.

 

[jangodog]

elaine77, i had the same thoughts as your some month ago about insulin/needles i hate needles, but
trust me you will get used to it once you see how much better your life suddenly will be with insulin

Listen to all of us and do your selve that favor the sooner the better

 

[Karen88]

Hi Karen.. I am new here too. I just wanted to say welcome and you are not alone.

Hi. Welcome to you too. . I definitely don't feel alone any more. Just wanted to say a big Thankyou to everyone that's responded, today i did the sensible thing and re-started taking my insulin, i couldn't work out the amount of carbs in my home made risotto concoction so i just waited a while, did my bg then used my insulin calc app to tell me how much i needed to inject to correct it. Baby steps....

 

[academicdiabetic]

Hi guys,

So, as many of u know, I was diagnosed with LADA in December 2012 and put onto Metformin. This is what has happened so far:

December 2012: HbA1C - 84 - put onto 2x 500mg Metformin a day (after refusing to continue with glic)
February 2013: Hba1C - 49 - no change to meds
June 2013: HBa1c - 46 - no change to meds, discharged from consultant care and left with my GP surgery
November 2013 HBa1c - 49 - no change in meds

Levels started to creep up in January 2014 to the point where I wasn't happy with it so went back for an early HBa1c:

January 2014: HBa1c - 54 - no change in meds and told to leave it until July unless creeping up. Levels were creeping up so not happy and went back early.
May 2014: HBa1c - 63 - not happy with this but still no change in meds and worried about increasing levels. Told DSN this and she said come back August.
August 2014 and my HBa1C was 86 which is higher than when I was diagnosed!! Told to increase meds by one Metformin a day!!

Levels are currently between 10mmol and 20mmol all day regardless of what I eat or don't eat and I'm not happy so I'm considering asking to be referred back to my consultant as I'm not happy with the way my diabetes has been managed since I was switched back to the doctors. I've had no dietary information or research information and they have still got me down as type 2 diabetic on their system! When confronted about this and the fact it is affecting statistics and research and is false, the DSN said:
"you need to be careful putting that u are type 1 as it changes everything and you're not on insulin so you can get away with it for longer. Plus, the system would constantly ask why we haven't prescribed you insulin if ur type 1. There's loads of tablets we can try yet before we consider insulin."
So now I'm in a situation where I'm very worried about my levels and don't know what to do. For the record, my BMI is now 20 and not only did I test positive and high for GAD autoantibodies but my sister has recently been diagnosed with coeliac which is also an autoimmune condition so there is no doubt in my mind that I have autoimmune diabetes.

Fed up and wish they would find a cure! Or stop punishing insulin users.... Or just anything would be helpful!

Hi guys,

So, as many of u know, I was diagnosed with LADA in December 2012 and put onto Metformin. This is what has happened so far:

December 2012: HbA1C - 84 - put onto 2x 500mg Metformin a day (after refusing to continue with glic)
February 2013: Hba1C - 49 - no change to meds
June 2013: HBa1c - 46 - no change to meds, discharged from consultant care and left with my GP surgery
November 2013 HBa1c - 49 - no change in meds

Levels started to creep up in January 2014 to the point where I wasn't happy with it so went back for an early HBa1c:

January 2014: HBa1c - 54 - no change in meds and told to leave it until July unless creeping up. Levels were creeping up so not happy and went back early.
May 2014: HBa1c - 63 - not happy with this but still no change in meds and worried about increasing levels. Told DSN this and she said come back August.
August 2014 and my HBa1C was 86 which is higher than when I was diagnosed!! Told to increase meds by one Metformin a day!!

Levels are currently between 10mmol and 20mmol all day regardless of what I eat or don't eat and I'm not happy so I'm considering asking to be referred back to my consultant as I'm not happy with the way my diabetes has been managed since I was switched back to the doctors. I've had no dietary information or research information and they have still got me down as type 2 diabetic on their system! When confronted about this and the fact it is affecting statistics and research and is false, the DSN said:
"you need to be careful putting that u are type 1 as it changes everything and you're not on insulin so you can get away with it for longer. Plus, the system would constantly ask why we haven't prescribed you insulin if ur type 1. There's loads of tablets we can try yet before we consider insulin."
So now I'm in a situation where I'm very worried about my levels and don't know what to do. For the record, my BMI is now 20 and not only did I test positive and high for GAD autoantibodies but my sister has recently been diagnosed with coeliac which is also an autoimmune condition so there is no doubt in my mind that I have autoimmune diabetes.

Fed up and wish they would find a cure! Or stop punishing insulin users.... Or just anything would be helpful!

 

[academicdiabetic]

Hi Elaine,

Note that I am not a medic, but I have been doing medical research for 30 years and know the diabetes literature well (enlightened self-interest!). I have also been through much the same expereinces as you. On the basis of both here are some thoughts:

There is very little point (assuming that you DO have an autoimmune form of diabetes) in you taking the non-insulin medications you talk about. They will do nothing of value for your condition and may harm you.

On average, people with an autominnume form of diabetes can survive 8 years before tending to die from ketoacidosis if they don't take insulin. Now, when I was diagnosed with LADA I also decided not to go onto insulin (nor did I take the orher medications for the above reaons), I am still very glad that I did not take insulin for the period in question, as exogenous insulin is itself harmful and also causes many of the supposed side effects 'of diaabetes'. This having been said, after five years of increasing blood sugars I did collapse from ketoacidosis and was in intensive care for four days. From this point I have had to take insulin and it has caused side-effects and I would stop it in a second if I could, but on the other hand, I am alive.

So, the reality is that insulin is bad, LADA is also bad. It is a no win scenario. Sorry! I wsh you the best of luck with whatever you decide to do.

 

[LucySW]

... as exogenous insulin is itself harmful and also causes many of the supposed side effects 'of diaabetes'.

As that's quite a shocking statement of something I've not seen before, could you please substantiate it? Before you are buried under an avalanche of angry autoimmune diabetics, that is.

 

[Butterflykeri]

As that's quite a shocking statement of something I've not seen before, could you please substantiate it? Before you are buried under an avalanche of angry autoimmune diabetics, that is.

......just found out I'm an autoimmune diabetic.....what's this about?

 

[Alanp35]

Lol
Means you're LADA, latent autoimmune diabetes in adulthood.
There's quite a few of us around,and load on info and support on here.

 

[jeanodon]

How do they differentiate between T2 and LADA

 

[Butterflykeri]

I meant the bit about insulin causing effects of diabetes.....since I will be on insulin therapy for the rest of my life I'm alarmed to see someone saying it has bad effects!

 

[phoenix]

I meant the bit about insulin causing effects of diabetes.....since I will be on insulin therapy for the rest of my life I'm alarmed to see someone saying it has bad effects!

It saves your life, if you have insufficient insulin you will eventually get high ketones leading to acidic blood. If this is untreated it causes coma and death. This is what happened before the discovery of insulin, less than 100 years ago.
Fortunately there are now people who have lived for more than 75 years on insulin and have neither complications nor a greatly impaired lifestyle.
I haven't been taking it for anything like that long but in 10 years the only complication (side effect ) I have had is hypoglycema and I have never had a hypo that I couldn't relatively easily deal with by myself.
(oh, I've just thought of another one, except with some hypos(not all), I rarely feel hunger nowadays but this seems to be an odd one, I have never seen anyone else mention it)

 

[LucySW]

Hi Elaine,

Note that I am not a medic, but I have been doing medical research for 30 years and know the diabetes literature well (enlightened self-interest!). I have also been through much the same expereinces as you. On the basis of both here are some thoughts:

There is very little point (assuming that you DO have an autoimmune form of diabetes) in you taking the non-insulin medications you talk about. They will do nothing of value for your condition and may harm you.

On average, people with an autominnume form of diabetes can survive 8 years before tending to die from ketoacidosis if they don't take insulin. Now, when I was diagnosed with LADA I also decided not to go onto insulin (nor did I take the orher medications for the above reaons), I am still very glad that I did not take insulin for the period in question, as exogenous insulin is itself harmful and also causes many of the supposed side effects 'of diaabetes'. This having been said, after five years of increasing blood sugars I did collapse from ketoacidosis and was in intensive care for four days. From this point I have had to take insulin and it has caused side-effects and I would stop it in a second if I could, but on the other hand, I am alive.

So, the reality is that insulin is bad, LADA is also bad. It is a no win scenario. Sorry! I wsh you the best of luck with whatever you decide to do.

@academicdiabetic, These remarks about the insulin that we all have to take are alarmist and a bit antisocial. Perhaps you are right: I don't know - I haven't got there yet in my reading. But they will frighten and worry people who are new to insulin, and they've already frightened and worried me. So could you perhaps take these comments on the perils of insulin to a new thread, for example the Insulin forum? Then you can pursue the topic and we will be able to choose whether we read about it.

LucySW

 

[smidge]

Hi Lucy,

Please don't be alarmed. Unfortunately all drugs have risks and undesired consequences - insulin is no exception to this. This is why we should only use medication when the risks of not using it outweigh the risks of doing so. With Type 1 diabetes, the balance is clear and stark - use insulin or die. With LADA, the balance is not so clear in the early stages. However, on balance, insulin is a good drug and I believe worth the risk for most LADAs - certainly at a point in the illness, the balance of risk becomes as stark as for a Type 1.

For Type 2s, it is a far greyer area. The human body is not designed to have an excess of insulin. Insulin is supposed to be released as a result of rising BG, get used and disappear - it is a very tightly-controlled closed loop system. For very many Type 2s, they already have an excess of insulin in their blood to go along with an excess of glucose - because they are insulin resistant and so are producing insulin but not using it effectively. This build-up of insulin in the blood is damaging. It causes many of the metabolic conditions often seen as part of diabetes e.g. high blood pressure, high cholesterol etc which in turn increase risks such as heart attacks and strokes. It also contributes greatly to the laying on of fat and makes it very difficult to lose weight. So, adding injected insulin to this situation is unlikely to end well.

The answer is to reduce these risks for all diabetics. Only use insulin when it is essential to do so i.e. for those with insufficient insulin production and use the minimum amount necessary. The way to achieve this, as many of us know, is to reduce carb intake to enable any natural insulin production to work effectively and to minimise the requirement for injected insulin. This is beneficial for all diabetics regardless of type.

Insulin is a great and relatively safe drug when used appropriately and when used iintelligently, but it is still a drug and it does still have associated risks.

Smidge

 

[Karen88]

@academicdiabetic, These remarks about the insulin that we all have to take are alarmist and a bit antisocial. Perhaps you are right: I don't know - I haven't got there yet in my reading. But they will frighten and worry people who are new to insulin, and they've already frightened and worried me. So could you perhaps take these comments on the perils of insulin to a new thread, for example the Insulin forum? Then you can pursue the topic and we will be able to choose whether we read about it.

LucySW

I too am absolutely terrified after reading this! Especially as i am currently taking large quantities of steriods and therefore having to use alot of insulin just to get my bg back down, not very successfully i might add. It was scaremongering like this that made me bury my head in the sand and refused to do anything about my diabetes when i was first diagnosed as LADA 12 months ago! I was just beginning to come to terms with it and decide to do everything i needed to do in order to take control of it and now i feel totally depressed again!

 

[phoenix]

Please don't be Karen, this is just one persons statement .
There are very many people on here who do very well with insulin including people who have taken it for 50 years or more. It is difficult getting the balance when you have to take steroids but there are again people who do this successfully including for example one long term T1 with Addison's who has to do this.
High glucose levels are dangerous, whatever the type of diabetes. In those with little or no insulin of their own, whatever the cause and whatever the label their diabetes has the pragmatic answer is to replace it with the same hormone.
This has been done since 1921 .
In principle, it's no different to having to supplement/ replace thyroxine if you don't have enough of that (and I'm jolly glad I can do that too since the long term consequences of hypothyroid aren't exactly great)

 

[LucySW]

I meant the bit about insulin causing effects of diabetes.....since I will be on insulin therapy for the rest of my life I'm alarmed to see someone saying it has bad effects!

Hi Keri,

I think this is exaggerated - especially as we have no choice about taking insulin. Hi, and I'm sure you'll find this forum helpful and useful. I was going to say, a propos suddenly finding yourself in at the deep end - take lots of deep breaths, and read, read, read, that's what I recommend. I read Dr Bernstein http://www.amazon.co.uk/gp/aw/d/B00FOQS66U/ref=mp_s_a_1_1?qid=1416694236&sr=8-1&pi=AC_SX110_SY165 and, if you're taking insulin, Gary Scheiner http://www.amazon.co.uk/gp/aw/d/0738215147/ref=mp_s_a_1_1?qid=1416694334&sr=8-1&pi=AC_SY200_QL40 . The first gives you a very thorough understanding of what the problem is and how to minimise it, the second is a detailed practical guide to how to get insulin right. And give yourself time to take things in the fifth time. I also found Jenny Ruhl's book about low carb diets (http://www.amazon.co.uk/gp/aw/d/0964711656/ref=mp_s_a_1_3?qid=1416694894&sr=8-3&pi=AC_SY200_QL40 ) useful (even tho she's a Type 2), because she explains the whole digestion/metabolism thing completely clearly. Once you understand how that system works, you'll be better able to make decisions about diet. Which is important. I found that the more I read and understood, the more manageable it got.

 

[academicdiabetic]

As that's quite a shocking statement of something I've not seen before, could you please substantiate it? Before you are buried under an avalanche of angry autoimmune diabetics, that is.