Newly diagnosed LADA

[SarahRuth]

Hi,

My name is Sarah, I'm 29 and was diagnosed as LADA 6 weeks ago. I am currently taking one Metformin with my evening meal and that is it for now. I have had a few hypos which my consultant thinks is my body once again becoming sensitive to its own insulin. My brother is type 1 and has been since childhood so I have some basic knowledge of T1 diabetes however I do feel a little out of my depth. I was initially diagnosed as I went to my local pharmacy having recognised T1 symptoms, when tested my BG levels were 26.9!! However they are now within the range of 4-8 pre meal with diet control and one Metformin in an evening. My diabetic nurse has told me that my GADS were strongly positive and this makes me LADA how ever she herself doesn't seem all that clued up on LADA. I haven't even seen my consultant yet as all conversations are happening via my diabetic nurse. I see my consultant next week and I am wondering what kind of questions I should be asking?
I do want to stay off insulin as long as possible, is there a way to do this?
Also I am losing rapid amounts of weight,
I am slightly overweight (loose size 14) but I am losing between 1-2lb a week, my diet has changed but I'm still eating a fair amount. Is this normal?! Any help or advice would be so welcome. Thanks in advance. Sarah xx

 

[Ian DP]

Hi Sarah,
I have been LADA for over 18 months now, and not on insulin. The key is to keep your BG levels in the normal range, which many believe will keep your few remaining insulin beta cells alive longer. I have been told that 90% of my beta cells have died, but that with a low carb diet my insulin needs are low and thus I can still manage with just 10% of my beta cells. I have been following Dr Bernstein's solution book for over a year now, he recommends a strict very low carb, high fat diet and exercise. It is working for me. You can download a few chapters of his book for free on kindle, or purchase for around £5 on kindle or iBooks. Being LADA means that we will eventually need insulin. I have an insulin pen in my fridge in readiness, likely I will need it when I get a virus / ill. Eating more fat will help put weight on, I had this problem a year ago. Now eating lots of double cream, coconut oil, butter, fatty meats cheese and fatty fish. Don't worry about hypos, I have seen a couple of 3.2s. It's the high BG levels we need to worry about. Have a read on this LADA forum. You will probably find more advise here than from your consultant I am afraid, as they don't seem to recommend low carbs.... But in my opinion, low carbs is the only way you will be able to hold off insulin use.

 

[SarahRuth]

Thanks Ian. Yes I have been told that I need to be eating plenty of carbs however even with my limited knowledge of diabetes that seemed odd to me. I will certainly download the book from ITunes. I have been reading lots about c peptide levels and antibody levels. Should I be asking what mine are? I seem to of been given very little info so far ....

 

[Ian DP]

You could ask for a c-peptide. I did, but my consultant said I was obviously producing some insulin so testing would not prove or change anything. I would ask if metformin is really worth taking. My consultant said it would do no harm, but no good either, so I stopped. You could ask for some insulin, to keep in the fridge, ready for use should you need it. Best would be a half unit pen. In my opinion the best thing you can do is read Dr Bernstein book..... He in my opinion is the expert.

 

[SarahRuth]

I know that I've had the c-peptide and was told that I'm still producing good levels of insulins but I don't know what the levels were but then on the other hand I was told that I was testing very strongly positive for the antibodies which alongside a T1 brother apparently make a definitive LADA diagnosis? I'm very confused but will certainly read the book. Thank you for your help Ian it is massively appreciated.

 

[Ian DP]

With high GAD levels you are, like me, a T1. But because you are still producing some insulin you are, like me, a T1 in the honeymoon period, which many call LADA. A couple of weeks ago I had a half an appointment with my consultant, he could not emphasis enough that I am a T1 in the honeymoon period, I don't think he mention LADA at all.... Some Drs do, some don't. What he also stressed is that I need to go on insulin as soon as my BG levels start to rise as this will preserve as many insulin making beta cells as possible for a good many years, all be it at a deminishing rate. You can still be a T1 in the honeymoon period on insulin. We are lucky, we are not quite there yet. Apart from eating very low carbs, and exercising, In my opinion there is nothing more you or your Dr can do. If losing weight, go out of your way to eat lots of fat. A bullet proof coffee with 30g coconut oil and 30 g butter (I have a cream top with it as well) will help you sustain weight, I have been doing this every morning for over a year now.

 

[Daibell]

Hi. I went thru a similar period when I was diagnosed 10 years ago. I was told I was T2 (by guesswork) but it was obviously slow onset T1. Losing weight is normal with LADA due to the lower beta cell output. Just keep the carbs down (the NHS advice given to you was seriously bad) and have enough proteins and fat to keep you full. The meter as always will guide you. LADA can come on at widely varying rates as mine did. Gliclazide can help for a while as it did for me early on but then failed to stimulate the pancreas even on full dose. Yes, Metformin won't do any harm and will be of minimal value. It is likely that you will need to move onto insulin eventually as I have done. It's no big deal if a bit of a nuisance. Ask for the Gliclazide as it may help delay the need for insulin. The low carb diet will also delay the insulin. I had a c-peptide and GAD done privately. My c-peptide was near the bottom which confirmed my need for insulin. My GAD was negative so my pancreatic failure could be one of the other causes so it's Late onset T1 rather than LADA. It's 'good' that you know the route you are on.

 

[SarahRuth]

Thank you for your replies. So late onset type 1 and LADA are not the same?
I'm looking forward to seeing my consultant as I've got so many questions. I've only seen my diabetic nurse once since diagnosis which I don't think is great. I have spoken to her several times by telephone but they just assume that as my brother is T1 I know what I'm doing which to an extent is true but there is still a lot I don't know!!

 

[Fido78]

Thank you for your replies. So late onset type 1 and LADA are not the same?
I'm looking forward to seeing my consultant as I've got so many questions. I've only seen my diabetic nurse once since diagnosis which I don't think is great. I have spoken to her several times by telephone but they just assume that as my brother is T1 I know what I'm doing which to an extent is true but there is still a lot I don't know!!

Hi Sarah! my sugars were like yours at diagnoses! I am now eating LCHF and my latest HBA1C is 5.2%. I was started on insulin right away and that was a perfect decision from my doc. As you are only 29 there is no way you will avoid insulin and in my opinion the earlier you wrap your head around this the better, it´s a process i know . It will also give you more freedom foodwise. I am currently taking 8 units of lantus once a day with the occasional bolus if I have maybe eating a large meal (or have been drinking, were supposed to have a "normal" life ) It´s more important to have good bloodsugars even if this is with insulin rather than trying to avoid the inevitably and stressing daily. Well this is only my opinion and wishing you good luck on your diabetic journey..

 

[SarahRuth]

Hi Fido,
Well this is what my brother says too. He says that long term I will be on insulin anyway and that it will be the best way to get good control.
I guess I'm just a little anxious about whether it will be very disruptive to my lifestyle at first? I have a 6 year old little girl and I work full time so life is pretty hectic. I guess eventually it just fits in?
At the minute they are saying that I have "gold standard" control so insulin isn't needed but I guess it is the best thing to do when the time is right.
The thing which concerns me about the LCHF diet is ketosis, is this not similar to the Atkins diet and what does it do to cholesterol?
Sorry for all the questions!

 

[Fido78]

Hi Fido,
Well this is what my brother says too. He says that long term I will be on insulin anyway and that it will be the best way to get good control.
I guess I'm just a little anxious about whether it will be very disruptive to my lifestyle at first? I have a 6 year old little girl and I work full time so life is pretty hectic. I guess eventually it just fits in?
At the minute they are saying that I have "gold standard" control so insulin isn't needed but I guess it is the best thing to do when the time is right.
The thing which concerns me about the LCHF diet is ketosis, is this not similar to the Atkins diet and what does it do to cholesterol?
Sorry for all the questions!

I have two little girls 5 and 7 years old. And by no means does taking insulin making your life more disruptive frankly quite the opposite. Yes your body will get in ketosis which is not dangerous! it is ketoacidosis which is dangerous and that means your bloodsugar has to be in doublefigures. I can´t tell you what is the right diet for you, but in my personal opinion LCHF is the only way for perfect control. take a look at this on facebook Typeonegrit

 

[Daibell]

Thank you for your replies. So late onset type 1 and LADA are not the same?
I'm looking forward to seeing my consultant as I've got so many questions. I've only seen my diabetic nurse once since diagnosis which I don't think is great. I have spoken to her several times by telephone but they just assume that as my brother is T1 I know what I'm doing which to an extent is true but there is still a lot I don't know!!

Hi again. LADA is an accronym for Latent Autoimmune Disease in Adults, so is related to antibody tests that are positive. Other things such as viruses, pancreatitis etc can cause beta cell damage. I had my GAD test done 7 years after diagnosis and the test becomes less reliable as time elapses so I may or may not have antibodies. I have found insulin not to be a problem; just more of a nuisance. I would certainly tery the Gliclazide if the doc agrees. It's the standard tablet to stimulate the beta cells. Some say it burns out the cells but that's not proven. Go for insulin when that fails and diet doesn't control the blood sugar. I asked my GP for insulin after 8 years and she refused but offered it the following year and I wouldn't look back.

 

[worrywart]

Hi SarahRuth,

I was diagnosed 3 years ago with high BG and was told I would be on insulin within months. It's been over 3 years now and despite the occasional blip my BG has been perfect and I'm yet to take any insulin. My solution like IanDP's was to radically change my diet. I've been raw vegan for virtually the whole time. It can be difficult, especially at first but you learn fast and overall you feel extremely healthy eliminating all manner of junk from your diet. It's not for everyone but feel free to look at my threads and PM me if you want to discuss

You're not alone and have plenty of support here

 

[Yelekreb]

Don't be sacred of insulin - I'm Lada and went from metforim to insulin in 3 weeks - felt much better on insulin, it's magic stuff!

 

[LucySW]

Hi Sarah,

I too want to say, Don't be scared of insulin. You could last for a long time without it, but it would make your eventual diabetes worse by burning out your insulin function. My decision was to conserve that by starting on insulin. As a result my BGs have got no worse and sometimes, when I'm good, even improves.

This is what I'd recommend based on my own experience:

I think it's better to start with insulin now rather than pussyfoot around with other drugs, because only insulin will arrest/reverse the decline and ensure that you can keep your daily insulin dose low into the long term, perhaps even permanently. That’s important, because insulin should be kept as low as possible, for two reasons: 1) you will preserve your residual basal insulin capacity and this means you will have enviably stable BG levels and will avoid the horrible lows that full T1s undergo; 2) low levels of insulin (i.e. insulin sensitivity) is associated with longer life expectancy. No other drugs can prevent diabetes progressing and keep insulin needs low, except possibly metformin, which can be taken alongside insulin for Type 1s and is an incredibly benign drug with other protective effects, if your stomach can tolerate it. I would agitate strongly to avoid any other kind of drug like sitagliptin etc: they may stimulate the pancreas, but will also burn it out quicker.

Your consultant may suggest one of these three alternatives.

1) Basal insulin only. I tried this; for me it was a waste of time, because the issue with me was post-meal spikes. I was incredibly good, ate less and less, exercised more and got more and more miserable, and my BG levels just continued to rise slowly. Once I took bolus, end of problem. My fasting levels went right down again.

2) Mixed insulin, on the grounds that you are new to all this and you need something simple. Here you are given a 70:30 mix of basal and bolus insulin, and you have to take it twice a day and match your meals to it. You may like this; I wouldn’t. It’s rigid, and you will have to eat to your insulin.

3) Full basal/bolus (or MDI, multiple daily injections). This is what I would recommend. Contrary to what you might think, it’s not difficult. Usually you have two basal injections (night and morning), or sometimes one only. Then you inject bolus 30 mins before each meal. You have to carb count for this. No problem – we are adults and this can be quickly learnt. I use the Carbs & Cals app, and you’ll need to weigh stuff for the first few weeks. Then you’ll know it.

Alternatively, your consultant may suggest tablets which stimulate Insulin production in the pancreas. These will work for a time but will hasten your descent into full diabetes, with a high TDD and attendant risk of hypos. Personally, I think these drugs should be avoided at all cost.

I would also recommend getting the Abbott Freestyle Libre, a continuous blood glucose monitor system that you stick on your arm. The point here is that it tells you what is actually going on in real time, so you can adjust (food, timings, insulin doses). It costs about £130 for the reader and the first two sensors, thereafter £50 for a two-week sensor. But it will teach you more than anything, and you don’t need to run one all the time. I run one every month or so.

Here is my story, in two threads:

http://www.diabetes.co.uk/forum/threads/an-older-and-wiser-new-lada.70099/

And

http://www.diabetes.co.uk/forum/threads/ladas-preserving-their-beta-cells.62177/

I think you should also read Ian's story:

http://www.diabetes.co.uk/forum/threads/can-i-prove-the-drs-wrong.53061/

He and Worrywart are managing without insulin, me and @smidge are not.

Lucy.

 

[Covichuela]

Hi Sarah! I am 29 years old too and diagnosed with LADA a few weeks ago (One year struggling with doctors saying I was type 2). I am on metformin 3 times per day and Staglipin in the morning. Sometimes I get spikes after meals or fasting in the morning. Doctor told me I should´t change my diet at all but I guess eating carbs makes my pancreas work harder and antibodies attack my cells…. I understand u so much, because I have the same questions!! I have an appointment with a nutritionist in a few weeks time, hope she´ll clear them all! I will let u know if u want

By the way, maybe you could ask for the numbers of insulin your body produces and GAD. Mine is: Peptide-C: 312, GAD antibodies: 308.

 

[linda8]

Hi! I am 52 years old. Diagnosed as T2 diabetic in Sept 2014. Went on various oral medications and lost a lot of weight within a couple of months. Referred to diabetic clinic as glucose level rocketed despite oral medications. Following tests, I was instead diagnosed with LADA about 6 weeks ago. Now on insulin in addition to oral medication. 3xbolus insulin a day + 1xbasal insulin night time. Have now gained back the weight I lost, and feeling much better. Am trying to get used to carb counting. Did not help when I was diagnosed with LADA just before I went on holiday!

My C-peptide was low at 60, anti-GAD antibodies at 2.37

 

[Ian DP]

Hi Linda,
A lot of us LADA's have found that a very low carb high fat diet helps.
@LucySW is very knowledgable about being LADA and going on insulin, you have probably read her post about 3 up from here, and there are some very useful links that I am sure you will have / will find interesting. I am sure Lucy will be along soon

 

[SarahRuth]

Hi All. Sorry I've not posted on this thread for a while. Been on my hols. I did see my consultant and dietician before I went and they were helpful. My HBA1C has now come down from 89 to 53 with change of diet so I am pleased with that. My C Peptide levels are 869 with GADF levels of 258 (I still haven't really got a clue what this means!) but my consultant says it means I'm still producing plenty of my own insulin. I am now being tested for MODY because of the strong family links with diabetes so the samples have been sent to Exeter and I will have the results in a few weeks I guess. Thanks for all your helpful replies and if anyone understands my GAD/C Pep results please let me know!! X

 

[Ian DP]

My GAD was over 2,000. The higher the level the worse it is..... They say.... But then that was nearly two years ago and through diet I can still manage to control my BG levels, so I don't think the higher levels really means much at all. If I remember correctly anything over 50 means you are highly likely to be T1.