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

[elaine77]

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!

 

[equipoise]

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 -- it's not quite clear from your post whether you are refusing other meds, or whether the doctors are just not prescribing them. Have you asked to be put on insulin?

 

[Heathenlass]

So you have been seeing a Diabetic Nurse ( a practise nurse that deals with diabetics as part of general care) , not a part of the diabetic clinic team ?

Your rising BG levels and HbA1c sounds rather alarming and it's obvious you are concerned. I think it may be a good idea to ask for a referral to the consultant again , and at the very least speak to your GP

Signy

 

[jack412]

the only thing i'm pretty sure of is that an extra metformin is going to do next to nothing to a BG 20. time to see a Dr

 

[Alanp35]

You need to request blood test for possibility of LADA. Sounds like whatever period you have enjoyed has come to an end. Get some expert help a s a p.

 

[elaine77]

I've already had the bloods done and know I'm LADA, the consultant did it back in 2012 and yes just a DSN, not been to any clinics or anything and I seem to know more about my condition than both the DSN and the diabetes GP who continuously say "oh ur a very rare case" when clearly I'm not as this forum is testament to how many people are actually LADA.

I refused only glic as it made me feel ill and did nothing for my BS but also, I can't imagine sulfonylureas will help me as they work by making the pancreas work harder and produce more insulin but my pancreas can't as I don't have enough beta cells to do it in the first place and so I worry that sulfonylureas are just guna burn out my poor remaining cells even quicker!

With regard to insulin, no I don't want to take it, I really hate injections (even testing my blood I hate) and don't want to have to deal with restrictions on my driving license and massively inflated insurance premiums and all the rest of the trouble that insulin brings but I'm not so naive that I don't know that insulin is inevitable - I know that it is.

The reason I haven't requested to go onto insulin is because I actually see the point of why my consultant didn't want me to go onto it in the first place. He said that, because I am still producing insulin but just not enough, putting me on insulin will just cause me more problems by way of hypos because, if I'm producing some insulin but no one knows how much, then how am I supposed to know how much to inject? He said that introducing the risk of hypos would not be a good idea but this was last year, he probably doesn't know anything about what's happened to my levels since...

 

[mo53]

What does LADA stand for please?

 

[noblehead]

But we are talking about nearly 2 years later Elaine and things have moved on, injecting insulin is quite easy once you get use to it. As for driving, yes you will be on a restricted licence but with luck you will get a 3 year licence if the DVLA are happy with things, injecting insulin doesn't increase premiums so don't worry about that. Get seen asap and ask for a referral over to your hospital diabetes clinic.

 

[elaine77]

I meant insurances for travelling and on mortgages etc... For life cover, and life insurance too, just so much hassle for the sake of maybe one or two injections a day (this is all they think il need). I will ask to be referred back to my consultant and hopefully they will do it...

 

[noblehead]

What does LADA stand for please?

Latent Autoimmune Diabetes of Adulthood

 

[mo53]

Thank you

 

[phoenix]

Elaine, given you know that you have had tests showing that you have autoimmune diabetes then you would have to disclose that to any new insurer, whether or not the question was on a form, else they may use this to reject future claims .Any full medical for insurance would also take note of your HbA1c. I wish it weren't the case but that's what happens.

When I was diagnosed and went straight onto insulin I had quite a lot of hypos.. ( going onto insulin from the start is absolutely normal protocol here and I'm actually glad it is) The hypos weren't insurmountable and I learned to cope with them. Remember we so often read of the worst case scenario hypos which I've not had in almost 10 years rather than the the day to day ones
.
In the end it is overall glucose control that is important and the sort of levels you are having at the moment are not good for you. If insulin will help then make use of it.
We have other members on here that have gradually transitioned to insulin, maybe using a small amount of basal and then adding in a bolus (some vice versa)
Go back and see the specialist and see what he says. As you say he will not be aware of your recent higher levels.

 

[Ian DP]

Hi Elaine,
Good to see you back on the forum.
In my opinion, you need to start taking insulin, and the sooner the better...... To be honest I think you must start taking it, there is so much evidence that high BG levels kill off beta cells (and you have high BG levels) and currently you are destroying your few remaining beta cells..... Start taking insulin and you will be able to keep some of your beta cells, which will help keep the amount of insulin you need To a minimum.

I know how you feel about driving and driving licence, but you need to put your health first...... The longer you delay going on insulin, the fewer insulin beta cells you will have remaining.

Sorry, but that's my opinion..... Not what you want to hear I know.

 

[paul-1976]

I'm sorry Elaine but starting Insulin is definitely your best bet-As soon as I knew I was LADA and not type 2 and when all other drugs failed-I went onto a basal insulin combined with a LCHF diet-2 years down the line I'm still on a basal insulin only and doing alright BG wise...The pens and 4mm needles are less painful than the Lancet device used for testing TBH and I kept my Licence no problem,albeit for 3 years and I lost my C1 and D1 category's but that's a small price to pay rather than knocking your pancreas on the head until the last minute and then a multiple daily injection regime of Basal and Bolus injections will no doubt be inevitable.
Bg's as high as yours should not be allowed to continue for your own future health.

Good luck.

Paul

 

[elaine77]

I don't buy into the notion that insulin helps preserve beta cells to be honest and my consultant said there isn't any medical evidence for it either. He also said beta cells can actually regenerate but they do it much slower then the autoimmune attack and so it's pretty useless really in the face of the attack.

The immune system is attacking the cells regardless and they're guna be destroyed eventually anyway and to be honest it's probably easier to control BS levels when u aren't producing any insulin at all rather than having to guess what your body will produce and then adding what you think is the right amount to top it up.

I think my consultant wanted to wait for this deterioration to make the transition to insulin safer by reducing the hypo risk because the less insulin I'm producing, the lower the margin of error for injecting. At least that sounds like what he was getting at in retrospect...

I don't think he will think levels of 10-20mmol is acceptable even if my DSN doesn't seem bothered by it and so he might well suggest insulin...if the GP will actually refer me that is.

 

[Ian DP]

I don't buy into the notion that insulin helps preserve beta cells to be honest and my consultant said there isn't any medical evidence for it either. He also said beta cells can actually regenerate

There is indeed some evidence that beta cells can regenerate.... But all the evidence I have seen points to low blood sugar levels being required.

I can completely empathise with not wishing to take insulin..... But insulin is not a medication... We LADA / T1s can not make sufficient quantities of it, so injecting is the next most natural thing.

My dsn and consultant have agreed / support me taking insulin as soon as my BG levels reach 7.0, and have given me an insulin pen accordingly.... But I so strongly believe in needing low (normal) blood sugar levels that at my next diabetic appointment I will be asking for 1/2 unit insulin pens / syringe so that I can start even earlier, at around 6.0 levels.... That means I loose / have to reapply for my C1 driving licence... Yep, but I feel I have to put my health first.

 

[Daibell]

Hi. You certainly need to go onto insulin and find another DSN; 1 extra Met per day is quite absurd. As you are GAD positive it was only a question of time before insulin was/is needed and with those sugar levels you need insulin now. I went thru a similar process and am still listed as T2 and was initially refused insulin but when my HBa1C went to 8.3% I was offered it. Fortunately my DSN quickly offered me Basal/Bolus and I have quite good control (HBa1C 6.5%) and never had a hypo but near it a few times. Yes, insulin is bit of a nuisance when eating out or driving but the fact that you finally have complete control is so much better than tablets that don't work any more.

 

[noblehead]

I don't think he will think levels of 10-20mmol is acceptable even if my DSN doesn't seem bothered by it and so he might well suggest insulin...if the GP will actually refer me that is.

That shouldn't be a problem, just insist that you are referred over.to the hospital clinic, they are more specialised in dealing with such matters than your average gp practice.

 

[elaine77]

Yes my GP practice is practically medieval! They still keep paper records and you have to order prescriptions in person! Guess that's what happens when you live in a sleepy village lol

 

[noblehead]

Yes my GP practice is practically medieval! They still keep paper records and you have to order prescriptions in person! Guess that's what happens when you live in a sleepy village lol

Still in the dark ages

Best that you do ask for a referral Elaine, I promise you starting on insulin isn't the end of the world and you will gt use to it, at first it can be daunting but it all falls into place after a few weeks/months.