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

mrman

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I was diagnosed type 1 from the outset, and started insulin on what I would now consider to be a high dose, but was very quickly adjusting downwards. now think lada (my own diagnosis lol) just because in the afternoons I require the lowest amounts of basal my pump can do and only 1 unit of qa per 20 carbs. This is during the laziest part of my work day, although I do realise exercise has a 24 hr effect. my advice would be don't ask to be referred back to consultant, rather demand it, if they refuse, speak with your consultants secretary asking for a call back from him/her. with your current levels and knowing your lada, , possibly small doses to.start. Whether that be a 1 or twice a day background insulin, or no background and small doses of qa, or a combo of the both. In a way, your levels once you start insulin will determine that, but really do think (and I think you do from what you've wrote) need a chat with your consultant. just for the record, I firmly believe if I hadn't of started insulin when I did (dka aside) I would now be on bigger doses. goid luck with it.

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elaine77

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I think it's just my age why I'm so upset about it... I've just finished my degree and am getting ready for my career so I can buy my house etc etc and then insulin is guna come along and ruin everything... I wouldn't mind if I was like.. 50 or something as all of those things (a career, mortgage, life insurance) etc.. would all be in place... Not to mention the bone of contention that is my hubby being rather upset we can't have another baby as the risks are just massive... It could have given me another decade at lease, **** immune system!
 

noblehead

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I think it's just my age why I'm so upset about it... I've just finished my degree and am getting ready for my career so I can buy my house etc etc and then insulin is guna come along and ruin everything... I wouldn't mind if I was like.. 50 or something as all of those things (a career, mortgage, life insurance) etc.. would all be in place... Not to mention the bone of contention that is my hubby being rather upset we can't have another baby as the risks are just massive... It could have given me another decade at lease, **** immune system!

Congratulations on getting your degree :)

As for insurance, do shop around for the best policy and price, some insurance firms do specialise in dealing with conditions like diabetes so it's worth spending some time on the net searching. As for having another baby, there's been quite a lot of posts recently discussing pregnancy and you'll be encouraged by what's been said, being on insulin doesn't stop you from having babies.
 

elaine77

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It's the risks...they're huge and my son was 9lb 11oz and had congenital hypothyroidism (gone now) which I just know was because of the GD...I think that pregnancy is what triggered the immune response in the first place to be honest... So many awful stories about stillbirths, placenta ruptures...not to mention how high my levels are at the minute.... Just think its ****** timing :-(
 

LucySW

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Elaine,

I really get where you're coming from re wishing it would all go away and eff off. But dear girl, this is your entire health we're talking about. You mustn't put up with BS 10-20. It's dangerous. It's terribly bad for you.

Honestly, insulin isn't so bad - and the sooner you start, the lower and simpler the dose. It's painless and quick - I'm LADA too and have starved myself down to good BS, but not good enough and I feel speed is of the essence, so I take basal insulin once a day at night. It's painless and convenient and the insulin pen lives in a pocket in my bag. And as Phoenix says, legally, now that you are diagnosed LADA, you already have all the insurance/driving licence hassles anyway, because you're on record as a Type 1.

Your DSN sounds moronic, and she is putting your health and your future in doubt. Please, please insist on seeing the consultant ASAP. You're a Type 1 diabetic and levels of BS this high put you at risk of DKA - say that, they're terrified of DKA. (They never seem to worry about avoiding the hyperglycaemia damage. It doesn't cause them a medical emergency - only you.)

Good luck, but good luck *quickly* !

Lucy
 
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elaine77

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They don't have me down as type 1 they have me down as type 2 as it suits their "systems" better... Just goes to show that we really can't trust any of these statistics the government are always spouting because the systems have false information on them to start with..
"80% of diabetics are type 2 diabetics"
Really?? Not too sure now to be honest.....

Also, I have ketostix so I can always test for ketones to be on the safe side... My consultant gave them to me at diagnosis.
 

-Artemis-

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@elaine77 I'm LADA and went to the ends of the earth trying to keep from taking insulin - I was so, so desperate not to take it that I ate crazy foods for 18 months and it still wasn't enough - I was convinced I was doing the right thing but looking back I really don't know how I did it.

Once my blood sugars started sitting in the 10's to 15's when all I was eating was nuts and green leaves I knew I had to start insulin - I'd always said I was trying to stay off insulin for the best health - and there was no way I could say what I was doing was still the best.

I'm only two months into taking insulin - and I'm not going to pretend it's all rosy and brilliant - cos it's not. I get very frightened at times because I live alone and I'm terrified of hypos.

BUT

The freedom insulin has given me is such a huge weight off my shoulders; one I hadn't realised I was carrying so much before.

I'm not going mad on what I'm eating now because I still think that lower carb is better for me - but I do allow myself the odd thing with sugar or higher carbs in now - whereas before I knew the price for that would be days of high numbers. I can't tell you what a relief not having to panic about being stuck up in a ten, or higher, is.

Also - re the uncertaintity - I'm not sure if it's cos I left it so late to take insulin - but there's been almost no massive variety in what my numbers are doing... Like you, I was afraid that not knowing if my pancreas would chuck out random amounts of insulin would be a nightmare - but aside from my cycle making two weeks quite different to the other two weeks (but which there's still a definite pattern I can predict) then - touch wood - I kinda know what my numbers are going to do, when... so don't be super frightened of that - just try it and see.

Lastly - re babies - I don't think there's no possibility of having a baby. It's a personal choice, obviously - but its something I've spoken about with my Prof (Professor Dayan if you want to look him up - he's well respected in the t1 community). Anyway - he says that the risks are not high so long as control in pregnancy is good. Which of course, when taking insulin, is easier. During your first pregnancy I'm guessing you weren't on insulin - so your GD was hard to control? I'm just throwing that into the mix to try alleviate your fears - Prof told me that in fact, its better to try for a baby asap, now I'm on insulin - as if y pancreas is still producing some of it's own insulin then blood sugars will be easier to manage. Plus research shows that the longer someone is diabetic, the greater the problems in pregnancy - but even that said, there are LOTS of t1's who've been t1 since children, who have perfectly healthy babies - as I said - the biggest factor is keeping good blood sugars in pregnancy - which of course insulin helps greatly with.

Anyway - just thought I'd share - as I was in pretty much precisely your shoes three months ago too... x
 
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Ian DP

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My experience with the NHS is that the dr's and dsn's will only give advise that complies with NHS policy. They will not and (understandably) can not give advice against NHS policy..... However, tell them what you want to do, and justify the reasons why (eg low carb, small dose insulin to get lower and healthier BG levels etc.) and my experience is, they will help you..... But you need to advise them of YOUR plan, and what YOU want, otherwise the only help you get will be within the NHS guidelines..... Which most of us on here know are wrong..... It's not dr's and nurses fault, it is the 16 man policy team, who mostly are sponsored by drug and cereal companies.
 
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LucySW

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Are ketostix useful? You'll test positive for ketones anyway if you're restricting carbs, but those ketones are harmless. I suppose, just watch for a rise?
 

Ian DP

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My understanding is ketones are dangerous with high BG levels (above 10), but good when low carbing with low BG levels. When your BG levels are above 10 you need to frequently check for ketones.
 
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Spiker

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Elaine if you are running BG 10-20 constantly you need to be doing ketone tests daily. If ketones are still negative that means your pancreas is fighting the ketones and meanwhile the blood glucose is going to hell. Every day you run your BG that high you are accumulating damage that will last a lifetime. And you are exhausting your remaining beta cell function needlessly, without gaining any benefit for the loss.

Your best bet to have a baby would be to go on insulin immediately, while you still have some beta cell function to help with the fine tuning. You should have a better pregnancy on insulin than you did with GD.

You know that your official classification is wrong. You know that you are LADA (like me, like many of us). You know that a LADA is a type of T1 and insulin treatment is inevitable. I am sorry that is a hard bridge for you to cross, but delaying is just harming yourself. :-(
 
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smidge

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Hey Elaine!

Sorry things are progressing so much. As the others have said (and in your heart you know) it is time to start the next chapter of your diabetes book.

When LADA hits the downward slope it can run away very quickly. The less insulin you are producing, the higher your BG will go for extended periods. The damage this causes is immense and in itself will speed your journey down that slope.

You must get back to a consultant - it took me 3 months to get back to see one having initially been discharged back to the care of Nurse Numpty. I would never let them discharge me again!

You have options, but at the very least you should have some rapid-acting in the fridge. The next time you have a cold or a bit of an infection, you might find it simply overwhelms your body's ability to cope and you'll find yourself in hospital with DKA - it really can happen that suddenly.

I guess my view on this was - right, I'm diabetic, scared of needles and terrified of insulin. I can either get used to it gradually in my own time while it's not essential or I can wait for a medical emergency and learn to deal with it in a crisis. I made my choice and I haven't regretted it. You now need to make your choice.

Good luck Elaine.

Smidge
 
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elaine77

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I got my referral through and it's for October 13th..not immediately but better than three months I guess.. Shall see what he says when I get there...
 
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Ian DP

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I got my referral through and it's for October 13th..not immediately but better than three months I guess.. Shall see what he says when I get there...
That's good. In the mean time, in my opinion, you need to prepare yourself so you can justify to them why YOU want to go on insulin.
For example:-
* You want to lower your BG levels to minimise long term diabetic related complications
* you want to have another baby, so need lower BG levels to minimise pregnancy complications (even if you do not want another baby)
* You want to preserve your few remaining insulin making beta cells for as long as possible, and that lots of evidence indicates that low BG levels preserve beta cells.
* if you feel your energy levels are low, feel tired etc. say you feel that lower BG levels will help / overcome these problems
* I am sure there are probably some more you might think of..

I know it's hard. But this is what I did at my last diabetic hospital consultation, and I admit I had a few tears as I pleaded my case, but I knew deep down it was what was best.... even though my BG levels are currently below NHS recommendations.... I want to keep them that way, and know that, long term, the only way I can do this is with insulin...... And I know you know this too.

I am no doctor, nor an expert, but I am 100% convinced that low BG levels will help preserve your few remaining beta cells. From the posts you made a few months ago, I think you know this too...... Don't let them fob you off for another 3 months. You need to tell them YOU want insulin.
 
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elaine77

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I don't want to go onto insulin so I'm not going to try and convince him I do. I am going to explain that my levels are not acceptable and ask him what he can give me that will get them down to acceptable levels and to be honest I don't think there is anything he could suggest but insulin.

My consultant has already told me there is no medical evidence that starting insulin preserves any beta cells for any length of time and it was also corroborated by two different endocrine consultants at two different hospitals too so I don't think he would buy that if I said that anyway and my husband saying he would like another baby isn't the same as me agreeing lol we already have 2 children so it's not something I would risk my/a baby's health for.

With regards to this Bernstein stuff and levels recommended by this dude...I can't help but worry that the levels he is suggesting are far too low and far too dangerous for people who are insulin dependent and injecting regularly, the hypo risk would be immense and hypos look worse on your medical record than raised BS does..they also kill you quicker! So I don't totally buy what he recommends. I do for people who are diet and tablet controlled but I'm pretty sure consultants won't recommend those levels for people injecting insulin, I'm sure the NICE guidelines are significantly higher than what he suggests they should be..

I think he will put me onto insulin because I can't see anything else dropping my levels by more than 8mmol which is what it needs to come down by at the least...I'm just annoyed they didn't take me seriously at the surgery when I said it was starting to creep too high. I'm also guna be really annoyed at having a restricted driving license but when I contact the DVLA to tell them that I am now using insulin I am also going to raise the issue of sulfonylureas and tell them that if they don't treat insulin and sulfonylurea users the same I will be seeking advice about health and safety and discrimination! Haha! It's only fair after all....
 
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elaine77

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Paul...my Hba1c speaks for itself...I do not need to go in there demanding insulin and acting like I know more about his job than he does.. It's clear my levels are dangerous and unacceptable and so he will prescribe as necessary... In all honesty I think, due to the fact there is no proper medical evidence of insulin preserving beta cells, the consultant made the right decision at diagnosis NOT to put me onto insulin as the hypo risk and the hypos I would probably still be having would have been dangerous and unnecessary. The GP surgeries leave a lot to be desired but the consultants generally do what's in the best interests of the health of a patient and they know when something is dangerous and unacceptable. I'm pretty sure insulin will be the solution in this case...
 

Ian DP

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Hi Elaine,

Thing have changed since feb this year when you said:-

'The last week or so my morning fasting levels have risen from 7-8mmol to 9-10mmol and my post prandials have risen from 6-8mmol to 8-10mmol.... I fear more cells have now been killed and maybe it is time to have the "chat" with my consultant regarding insulin'.

High BG levels still kill beta cells.... and cause other health issues.
 
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elaine77

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High BS levels don't kill beta cells directly, rather high BS levels can draw attention to the beta cells which are working crazy overtime, making the antibodies attack them on a greater scale.... Or at least this is the most accepted possibility according to the consultants. Also, just because high BS may possibly cause accelerated beta cell destruction doesn't mean insulin will preserve them necessarily. There is no evidence for either of these theories... I also never said it was the BS that killed the cells...I just said they had obviously been killed...(by the immune system.)

The truth is they have no idea what affects the rate of beta cell destruction in LADA or why it's not an all out immediate obliteration and all research carried out has not given consistent or significant results so everything out there is little more than speculation... Hence why the important thing is BS levels and that my levels are not acceptable and need brought down and it's probably only insulin that will bring it down so that's what will probably be prescribed when I go back in October and I am prepared for it...I think
 
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