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LADA Diabetes Fed up of being a guinea pig

H

Hertfordshiremum

Well-Known Member
Messages
389
Type of diabetes
LADA
Treatment type
Insulin
Hi all

I really need some advice and the diabetic nurse I see at my local hospital has said she just doesn’t know. But wants to try something and I am unsure about this. I am their only patient with LADA Diabetes. I was diagnosed a year ago and already have 2 other auto immune diseases which slightly complicated things for me. However last year after a few months I was finally diagnosed in June with over 100 GAD antibodies. Also Hba1c of 104 I was started on 2 x 500mg slow release metformin (can just about tolerate the slow release) and 6 units of Lantus slow acting insulin. Had to up to 7 units in hot weather. Hba1c dropped to 52 However started to have a lot of hypos in autumn last year and the Lantus was slowly reduced down 4 then 2 then around October/November I stopped using this as per directed by the diabetic nurse. However around Christmas I started having as many highs as I have lows and it varies between 15 and 3.5 regularly. Quite often in the same day As my hba1c was 48 nothing was done. On my visit last week Hba1c is now 54 and diabetic nurse wants me to go back on insulin. I have not changed anything I do, she thinks I am just coming out of honeymoon period. I thought it would be the Lantus again but she wants me to try Levemir, 3 units before breakfast and 2 before dinner. However my reading before dinner are very varied This week ranging from 4.9 to 9. Surely I cannot take this when it’s 4.9. Also I see a side effect is weight gain, this is worrying me hugely. My other autoimmune disease is hashimotos (thyroid being attacked) so I take Levothyroxine but 4 years ago I put on 3 stone in 6 weeks and long story short the doctor wasn’t bothered when I returned saying it wasn’t working and during this time I exercised every spare hour and ate very little and no carbs. Only when I finally paid to see an endocrinologist who changed my tablet and the time I take it did my symptoms go and I lost all the weight. I really don’t want to go through a problem with weight gain again. I eat low carbs and about 1000 calories a day in fact my diabetic nurse says I should eat more. I also do a lot of exercise. I suppose my question is does anyone else take Levemir and is weight gain a problem and does anyone else have very varied levels and how do they manage this please? I did suggest to the nurse that maybe I should do something different every day but she seems intent on looking for a pattern and I don’t think there is one. I often eat the same dinner and sometimes before bed it’s 8 and other times it’s 13. Any help would be really appreciated, or can anyone recommend an endocrinologist specialising in LADA in Hertfordshire please. By the way I have changed doctors. Thank you for any help, feeling really fed up with it all
 

Hertfordshiremum - I'm not T1, or LADA, butLevemir is a long acting insulin, designed to keep your underlying bloods under control, as opposed to the short acting insulin that is usually matched to the food you are eating.

If you look up insulin at all, it is a hormone produced in the pancreas, which regulates the amount of glucose in the blood, and also helps the blood glucose enter the cells for use now or later. On that basis, it can lead to weight gain, but that usually happens in those fr whom the dosing is out of whack, or who are significantly insulin resistent.

Hypothyroidism, whether Hashis or any other variant is an unpleasant condition which takes a bit of managing and some time to get it right. Infuriatingly, diabetes, and maybe even particularly insulin dependent diabetes is the same. It takes time, and sometimes many changes to get thing right.

Whilst your DSN may not personally know many LADAs, she should have access to expertise with more relevant knowledge than she has.

It is important your diabetes is managed, so whatever you do don't ignore it.
 
I have T1D. The only issue with weight is trying to keep/gain it.

But I can add my 2 cents regarding changing from Lantus to levemir as I have recently switched.

Levemir seems to be more flexible than Lantus, I was told a change of dose with lantus takes 3 days where as Levemir is much faster. So your dose can be easily changed to take into account if your expecting to have an active day for example.
 
 
Thank you that’s good advice perhaps I will have to accept that I will need to try different things until this becomes more stable. I will email the nurse and ask what I should do when it’s low before dinner as I am very reluctant to inject insulin when it’s not even 5.
 
 
Thank you for your reply, that’s the first positive thing I have heard about Levemir and would make more sense for my very varied readings. I take it you haven’t had any negative side effects from Levemir?
 
Timostags said:
Levemir seems to be more flexible than Lantus, I was told a change of dose with lantus takes 3 days where as Levemir is much faster. So your dose can be easily changed to take into account if your expecting to have an active day for example.
Click to expand...
When I was on Lantus*, I too was told it would take days for a change to take effect. However, I was told this after I was reducing my basal dose every night after I exercised which I found helped reduce hypos. So, I was never convinced by the idea it took 3 days for a change of dose to take effect.
I am not saying Levemir changes take effect quicker just that I never believed Lantus took so long.

* I now have an insulin pump which does not use a slow acting insulin.
 

I can understand your desire to be cautious. I would be too, but please don't allow fear to freeze progress to good management and your longer term wellbeing.

Uncertainty is horrid, but ignoring it isn't an option either.

You'll be fine. We have several LADA and T1 members, who would be happy to help you and ease your concerns if they can.

Never underestimate the power of peer support.
 
 
Thank you, I have emailed my diabetic nurse this evening as I am unhappy injecting insulin when I my BG is only measuring 4’s. I will see what she says. I do think she is right that I need to take some form of insulin but I am concerned about trying another new one. My BG levels seem to be effected by stress more than anything else and I find that quite hard to deal with. Then I find the varying levels for no apparent reason very frustrating. Maybe I do need to give this time to settle but it’s difficult when trying to carry on with every day life. Thank you so much for your kind words, I don’t have many people who understand.
 

I think your nurse, by changing your basal, is trying to give you a bit more flexibility and something that's "easier", in the longer term to really fit your life. I put the parentheses on easier because these things can take a lot of patience and adjustments to get right.

I'm fortunate enough not to have high variances day to day, but for me the thing affecting my own bloods more than anything is stress too. All we can do about stress is try to manage it as best we can, and when there's no way to ditch the stress, embrace it as an unwelcome, but usually temporary situation.

Stick around. There's always somebody on here when we need to talk.
 
The slow acting insulins really are slow acting. I'll happily put my levemir in when in the 4s, because I know it takes hours to do its thing.

Re weight gain : as DCUKMod has said, all insulins will list weight gain as a side effect. If you give yourself too much insulin, you'll have to eat more. Measurement is key to managing this - measuring lots should help keep your blood sugars in check, and keeping your blood sugars in check means you're not giving yourself too much insulin.

And re bloods going all over the place - **** isn't it. Experience helps, but even the people on here with lots of experience and without the other problems you have still get it wrong from time to time. Don't worry too much about staying at a precise level - you can get away with quite a lot. It needs working at, but perfection isn't the aim.
 
The honeymoon phase in a LADA can take years and years. What this means is you still produce insulin until you don't. A LADA is a type 1, meaning eventually you have to have insulin. Up to the point of full blown insulin requirement, you will need insulin in varying degrees because it can also be erratic what your body decides to make in the honeymoon phase. Long acting insulin if you have too much will not be enough to keep highs in check and can drop you too low if taking to much at night or exercise. So fast acting insulin helps you adjust what is actually needed from your levels and food. Basal insulin, long acting is used to control what glucose you liver constantly makes every day.

They will try to ease you into insulin usage as needed. When you start on insulin they like to play it safer on levels to prevent lows, but finding the proper dose can be tricky. Plus it can change from today to tomorrow or next week, in any type 1 and especially in the honeymoon phase. As a type one you will learn (which a pump is wonderful at) that I need this amount for the carbs I eat and I am too high so I need to add this and I'm on the lower end so I need to take less. It's a learning process. Starting with carb counting. A CGM is also really useful.

And yes stress, exercise, sleep, infections etc can make your BG's and insulin needs vary. I understand you are going to call your diabetic nurse for adjustments that might be needed and that is the best thing to do.
 
Thank you so much everyone for your replies. You have all given me a lot of very useful information. Marie 2 you really describe exactly what is happening to me, it’s very erratic, probably as you say some days I don’t have any natural insulin and other days I do. I actually think this is varying within the same day. A different diabetic nurse has called me back this morning and she thinks 5 units of Levemir every day is too much! She has told me to hold off as when it goes low she is worried I will have a hypo. I will wait and see what my usual diabetic nurse says next week but they have booked me for another appointment at the local hospital in 2 weeks time. I am in Hertfordshire and am not entitled to a continuous blood glucose monitor, awful that this is a postcode lottery, I did have a trial one, libre, back in March and thought it fantastic. I avoided all hypos ( I have had 3 in the last couple of months and often come close) and avoided going too high. I hope criteria changes for Hertfordshire.
 
Hi @Hertfordshiremum,
Sorry to hear of your troubles. As a type 1 i recall the honeymoon phase where one is never sure what insulin is needed but whatever needs injecting is a constant dance with one's depleting internal supply!
You mention you are on a low carb and calorie restricted diet. That must be tricky, particularly with hypos and varying insulin From past experience as a type 1, and discussions with many other diabetics over the years but not as medicañ advice or opinion:
One approach i recall a friend trying was a tyoe of scaling of doses. For example if the evening bsl was less than 6 mmol/l then give x units long-acting, if between 6 and 9 mmol/l give say x +2 units, etc but if nearer 13 then proportionately more, remebering however that the Levemir will probably have a little peak about the 4 hour mark and that usually there are no meals until breafast.
Because the daytime involved 2 meals and that insulin seems to be less effective in the morning compared to later in the day, then a larger dose of say Levemir could be used, but still with some scaling.
But.. that pesky pancreas might just decide to respond to breakfast ir lunch etc. What to do.?
As a possibility, and you would need your nurse and you to read up and study this, ask questions etc:
Read Dr Bernstein's Diabetes Solution.
Essentially it is about adopting a very low carb diet, where the 50 % of grams of protein eaten eaten are counted towards carbs and the carb count is about 30 grams. It is in effect a keto diet. Why do this?
I cannot advise just suggest what such a diet does.
A) you burn fat and though you may be taking in more fat and calories weight loss and maintaining normal weight is far easier according to adherents than low calorie, miderately low carb diets. That is reported and researched but i can only suggest you look at it
B) very low carb intake means that your own pancreas is less challenged to send out insulin in larger amounts in response to a more carb filled meal. The smaller the carb intake the less stimulation of that curmudgeon. And you also need lower doses of insulin. From that viewpoint less insulin plus less carbs = less weigh gain.
C) because the liver can convert protein to glucose you still have sufficient glucose for your brain to function, only about 30% of the brain seems to need glucose exclusively, the other 70% manges quite well on ketones, derived from fat. That is why on very low carb diets some protein is counted as carbs. The beauty of it is that this glucose dervied from protein comes into the blood stream gradually and nearer the 3 hour mark so may be less likely to cause that pancreas curmudgeon to send out some insulin!
D) when very little or no insulin is produced by the pancreas no matter the level of stimulation, then insulin by injection is an absolute need. If insulin is not available blood sugars rise too high, the body breaks down fat stores into ketones, the blood becomes acidic and the person may become gravely ill. The condition is called diabetic ketoacidosis. Many type 1s and LADA use special strips in some glucose monitors to measure ketones if they feel unwell with high sugars, other more usual strips are used in the meter to measure blood sugars.
E) when we fast for a time usually more than 12 hours our body does break some fat down and ketone bodies appear in the blood. This is called nutritional ketosis and as long as there is sufficient insulin about ( say from injection, as one never knows when the curmudgeon is going to chime in), and one is well, hydrated etc then the nutritional ketosis as enabled by a keto/ very low carb diet, enables fat to burn as the preferred fuel with out thevextreme ketosis and acid build up. Or DKA occurring..
F) switch over from carb to fat burning is accompnied often by some days of ' keto flu' and dietdoctor.com helps explain this, that it is a temporary state of adjustment and how to ease it and manage on the diet from there.
G) having your health team on side is important as the doses of insulin will need adjusting to the lower intake of carbs.
This above is a suggestion but may form something to combat the challenges you currently face.
A number of diabetics on site do such diets but it is not every one's cup of tea. There are many dietary and insulin management options.
Best Wishes and please keep asking questions.
And apologies for naming your pancreas a curmudgeon, i am sure you can find a more fitting appelation!
 
And just a little levity since laughter is the best medicine for everything including stress:
Humans and guinea pigs are unique in the animal domain, in that they are the only two animals who do not make their own Vitamin C.
 
 
Hi I do like the idea of a sliding scale for the insulin and think as my BG measurements are so varied during the day this is a really good idea that would work for me. I am definitely going to suggest this to whoever calls next week! It would help if the diabetic nurses I see could agree! I did the keto diet for about 3 years I found it really helped control my Hashimotos disease. However I was having so many hypos when I first went on diabetes medication that the nurses insisted I ate some carbs, they are not keen on this diet. So I eat a small bowl of porridge for breakfast. Also I have introduced yogurt after lunch, plain or coconut are both not too high in carbs. So I am not eating a ‘balanced’ diet but low carb. This stopped the multiple hypos, although I will still have a hypo once every couple of weeks. Maybe on a day when the curmudgeon has kicked in! I will certainly read the book you suggest Thanks PS Never knew we had anything in common with guinea pigs!
 
Just a quick note to say thank you so much for all the really useful information. The nurses I see consulted resident endocrinologist at the local hospital with 4 weeks of my BG results. The result, I will take Levemir but only when my BG is >13, then on days when I have some natural insulin I can manage without it. I was able to have a much better conversation with them and feel a lot happier that this is quite normal for Type 1 LADA. thank you again.
 
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