Recently diagnosed Type 1 at 63

[Alexandra100]

My Hb1Ac was 118,
BG 14.7
ketones 5.1
I was sent to hospital and put on saline and had to go back the next day for more

Next day
fasting BG 13.3
ketones 2.4.... think they also gave me some novorapid.
I spent the whole day in hospital and left in the late evening with insulin and with a BG of 19 but ketones at 0.7 so that's what they were worried about
One month later my Hb1Ac was an amazing 66

What a frightening story. I'm glad it has turned out so well.

 

[SueJB]

What a frightening story. I'm glad it has turned out so well.

Nope, not at all frightening. The only reason went to the doctor was because I was drinking lots, not peeing but felt absolutely brilliant. I didn't feel bad in the hospital, just very bored. They actually wanted to keep me in overnight but my charm got the better of them. I still wonder if they've got the right classification for my problem. Do you know, I don't actually like referring to it as a disease?
Anyway, it's of no import. Whatever label they've put on your file, not you, you have to manage it as @Daibell says. It's definitely not doom-mongering but a fact, good management of food intake makes for good BGs as you know and are doing. Sounds good to me.

I gave up on this forum for a couple of months because everyone seemed to be obsessed with numbers. I agree that they are vital to understand but not for them to stand in my way of enjoying life and stuffing a piece of baguette in my drooling mouth once in a while. With a hearty glass of red.

I came back because the group is super supportive and everyone needs people who totally relate.

I wonder @JAT1, has your initial question been answered?

 

[JAT1]

Thank you everyone for all your replies. It’s great to have people to talk to about all this. I'm haven't been able to wrap my head around all the terminology and numbers yet but it's a great journey and gave me the courage to retire, quit pursuing the money thing and get down to the activities which matter most to me.

 

[JAT1]

Hi there JAT1, yes, as DiaKat says, I was diagnosed 15 months ago aged 55. I too presented with all the type 1 symptoms but at the start half the Drs I saw were leaning towards type 2 (because of age) and the other half were saying type 1 (because of the 'look' of me I guess and high ketones and high glucose readings). After a C Peptide test (low), an antibody test (positive for GAD), they have said type 1. I don't know why but my own Doctor (who is diabetic himself) always has a sceptical look on his face. I think this is because I am still only on 4 units of Lantus a day and maybe 1 unit of novarapid with the odd meal if it is a carb heavy one. I think this is because of the honeymoon period.

I seemed to be a 'problem' to begin with, 3 years before diagnosis I had been labelled 'pre diabetic'. I am told pre diabetes does not become type 1 and when I asked whether I could have been 'pre type 1/lada' then, they said no. It is all so very confusing. At this point, 15 months on I eat fairly low carb (on average around 60 per day but sometimes more), I take my very low levels of insulin and I consider myself to be as fit as a fiddle.

Have you had the C peptide and antibody tests done? I ask because you are only 2 months in to it and it took my lot at least 3 months before they did any specific tests. I was puzzled about the C peptide one because I was already on insulin so surely my body would not have had to produce much insulin of its own hence the low C peptide result. Sorry if I am confusing you but please ask any questions you want, in the meantime, and in the words of Bette Davies, fasten your seatbelt...…….x

Actually, I don't know what those tests are for. In the first month I was doing tests every week so maybe I did them. My general was sending me for so many tests that I got totally fed up with it and don't want to see another Dr for a very long time (except for the endo to renew my prescription for insulin but I haven't seen her for more than 10 minutes total. Spent a couple hours in the waiting room though). I'm not sure if I'm taking alot or a little insulin. I do 4 units Basaglar at bedtime, 4 units of Novorapid before lunch and again before dinner.

 

[JAT1]

No not really. Depends on how well it's managed.

From what I understand, insulin and carbs have to be balanced. Too much insulin for the amount of carbs eaten and bg falls, too little insulin for the amount of carbs eaten and bg spikes. For me, it also depends on the type of carbs. Starch spikes me for ages whereas I'm good with fruit, especially at the beginning of a low carb meal.

 

[JAT1]

Hi, too much insulin can, as far as I know, make your BG go low.... ie a possible hypo so I agree with @Diabell it depends on management. The thing is, I found the idea of having to inject insulin scary, worried about too much and complications of that and also of too ..........little but I never made a quick change and waited to see what food did. Clearly if BG was rocketing, I did the biz and hoped I was doing the right thing. I'm only just beginning to get a grip of it but do know for sure that low carb eating makes life so much easier.

Not sure I understand what you mean by biz. Sounds like if your bg was rocketing you took insulin after you ate whatever caused the spike. Correct ? Is it OK to take insulin without eating anything right after injection in order to correct high bg as a result of what you ate an hour or 2 before ? I too am wary of insulin and that's another reason I won't eat starch. Why load up on insulin so I can stuff myself on pasta (which I used to eat almost every meal) when who knows what negative effects it may be having. Of course, being type 1, I will continue with the insulin, but I want to keep it (and the carbs down) though I would cry if I had to give up all fruit.

 

[JAT1]

Nope, not at all frightening. The only reason went to the doctor was because I was drinking lots, not peeing but felt absolutely brilliant. I didn't feel bad in the hospital, just very bored. They actually wanted to keep me in overnight but my charm got the better of them. I still wonder if they've got the right classification for my problem. Do you know, I don't actually like referring to it as a disease?
Anyway, it's of no import. Whatever label they've put on your file, not you, you have to manage it as @Daibell says. It's definitely not doom-mongering but a fact, good management of food intake makes for good BGs as you know and are doing. Sounds good to me.

I gave up on this forum for a couple of months because everyone seemed to be obsessed with numbers. I agree that they are vital to understand but not for them to stand in my way of enjoying life and stuffing a piece of baguette in my drooling mouth once in a while. With a hearty glass of red.

I came back because the group is super supportive and everyone needs people who totally relate.

I wonder @JAT1, has your initial question been answered?

Yes, it has been answered. I've learned that there are other people out there who have been diagnosed late in the game and I've learned that everyone is unique and has to find out what works for them and most important - never give up. Life is precious.

 

[Alexandra100]

it's a great journey and gave me the courage to retire, quit pursuing the money thing and get down to the activities which matter most to me.

Ill health gave me the opportunity to retire early, and I have always been so glad I did. It would be interesting to know what the activities that matter most to you are, but of course no need to say if you don't want to.

 

[SueJB]

Not sure I understand what you mean by biz. Sounds like if your bg was rocketing you took insulin after you ate whatever caused the spike. Correct ? Is it OK to take insulin without eating anything right after injection in order to correct high bg as a result of what you ate an hour or 2 before ? I too am wary of insulin and that's another reason I won't eat starch. Why load up on insulin so I can stuff myself on pasta (which I used to eat almost every meal) when who knows what negative effects it may be having. Of course, being type 1, I will continue with the insulin, but I want to keep it (and the carbs down) though I would cry if I had to give up all fruit.

Sorry @JAT1 "the biz" as you tightly say is injecting insulin. If I'm eating a meal with fewer than 10 carbs, I don't bolus. But, if I find I've miscalculated the carbs and my BG goes high, then I will correct it after the meal /bolus. There are lots of carbs in fruit

 

[SueJB]

Actually, I don't know what those tests are for. In the first month I was doing tests every week so maybe I did them. My general was sending me for so many tests that I got totally fed up with it and don't want to see another Dr for a very long time (except for the endo to renew my prescription for insulin but I haven't seen her for more than 10 minutes total. Spent a couple hours in the waiting room though). I'm not sure if I'm taking alot or a little insulin. I do 4 units Basaglar at bedtime, 4 units of Novorapid before lunch and again before dinner.

I think you're lucky to be taking so little long acting insulin (Basaglar)
Do you always inject 4 units of Novorapid or does it depend on what you're eating?

 

[Alexandra100]

I would cry if I had to give up all fruit.

This was the hardest for me too, as I practically lived off the stuff. To this day, I avoid the wonderful open market with its heaps of delicious and cheap fruit. But if I stay away from that too vivid reminder, I'm amazed how OK I now find my extremely LC diet. I follow Dr Bernstein's method so the only fruit I ever eat is a small portion of rhubarb (stewed without sugar, of course, and eaten with double cream and sometimes high fat Greek yoghurt).

Fruit is not only high carb, the sugar it contains is fructose, which goes directly to the liver and can increase insulin resistance, which is the last thing we want! Here is what seems to me a very balanced article on the effects of fructose:

https://www.health.harvard.edu/blog/is-fructose-bad-for-you-201104262425

 

[JAT1]

I was under the impression, gained from internet research, that processed fructose was bad, but if you ate a piece of fruit, that fructose in its natural state was fine, also because of all the other good nutritional stuff in fruit. When my bg is getting too close to the low side I have an a piece of real fruit. For instance I woke up at 2:00 a.m. last night and saw I was 3.9 on the meter, so I ate an apple and went back to sleep no worries. Then when I measured at 8:00 am it was 4.8. Once it went as low as 1.8 - never again. I read the article you attached - interesting. I am careful with the use of fruit, never having too much and never eating it when I am not falling low.

 

[JAT1]

Ill health gave me the opportunity to retire early, and I have always been so glad I did. It would be interesting to know what the activities that matter most to you are, but of course no need to say if you don't want to.

Painting and drawing. It's amazing how life can change a downer into a wonderful opportunity.

 

[Scott-C]

I am careful with the use of fruit,

JAT1, there's absolutely no reason at all why you as a recently dx'd T1 shouldn't eat fruit, but, as you say, use it carefully.

There's a lot of good reasons why T2s shouldn't eat fruit, but there are fundamental differences in T1 and T2 biology which makes a lot of what T2s say irrelevant to T1s on the fruit issue.

The fructose effect on the liver etc, I'd ignore that. It is meaningless in a T1 context.

Dr Bernstein's rules on never eating any fruit except avocado, and never having more than a single tomato in a cup of salad, steering clear of onions, are insanity, in my opinion, for a T1.

What T1s are more concerned with is, not avoiding carbs, but managing the rate at which they are absorbed.

Fruit have simple sugars, so they are rapidly absorbed, and that can show up bad on graphs.

So, we tend to have them as a dessert at the end of a meal, so that the rapid sugar absorption is buffered by the slower carbs, fats and proteins from the earlier courses.

That way, we get, as you say, the vitamin and mineral nutrional value of, lets say, figs, greengages, melon (that can be a tricky one!), all the berries (a whole 400g punnet, not just a few), without the horrors which T2s and Bernstein paints it as.

In a T1 context, it's not at all about avoiding fruit. It's more to do with getting the timing right: that involves the amount of time you pre-bolus, what you're eating it with, and an understanding of the time pattern of the type of insulin you're using.

If you sit down and say, "I'm not eating fruit anymore, cos Bernstein says so", that's just quitting.

 

[Shiba Park]

Thanks! So another example of the doom-mongering that tells everyone that diabetes is bound to get worse with time.

No, not really. Hypos are a fact of life with T1; that's not to say there's no point trying toavoid them, it's just that sometime 1 +1 doesn't always equal 2... sometimes you end up too high, sometimes too low. The important thing is to be aware and be equipped to deal with it. But once your pancreas has given up, how can it get worse?

 

[JAT1]

JAT1, there's absolutely no reason at all why you as a recently dx'd T1 shouldn't eat fruit, but, as you say, use it carefully.

There's a lot of good reasons why T2s shouldn't eat fruit, but there are fundamental differences in T1 and T2 biology which makes a lot of what T2s say irrelevant to T1s on the fruit issue.

The fructose effect on the liver etc, I'd ignore that. It is meaningless in a T1 context.

Dr Bernstein's rules on never eating any fruit except avocado, and never having more than a single tomato in a cup of salad, steering clear of onions, are insanity, in my opinion, for a T1.

What T1s are more concerned with is, not avoiding carbs, but managing the rate at which they are absorbed.

Fruit have simple sugars, so they are rapidly absorbed, and that can show up bad on graphs.

So, we tend to have them as a dessert at the end of a meal, so that the rapid sugar absorption is buffered by the slower carbs, fats and proteins from the earlier courses.

That way, we get, as you say, the vitamin and mineral nutrional value of, lets say, figs, greengages, melon (that can be a tricky one!), all the berries (a whole 400g punnet, not just a few), without the horrors which T2s and Bernstein paints it as.

In a T1 context, it's not at all about avoiding fruit. It's more to do with getting the timing right: that involves the amount of time you pre-bolus, what you're eating it with, and an understanding of the time pattern of the type of insulin you're using.

If you sit down and say, "I'm not eating fruit anymore, cos Bernstein says so", that's just quitting.

Thank you for your interesting reply. I don't quite understand about timing yet. It's dinner time here and I took 4 units Novorapid before starting to eat. I'm eating 2 mandarins and a peach to start and then having 2 bowls of homeade pork/bok choy soup with a glass of 3.25% milk. A couple times I've hypo'd before even finishing a low carb soup so that's why I start with the fruit. Maybe this means that I'm bolusing too much. After the soup I'll have almonds, lots of peanut butter with plain yogurt, plenty of cheese and tea with 3.25%. Following the instructions of my endo, I'll do a bg read 2 hours after starting to eat and if it's over 10 then I'm to increase my dinner Novorapid ration by 1 unit.

 

[Alison54321]

I'm a fruit fan as well, the nutrients are far too good for us not to eat them.

I eat mangoes, one nearly every day, they are so yummy.

 

[Alexandra100]

This is controversial. There are many T1s who would agree with you, and many, perhaps an increasing number, who will not. There is always the real possibility of developing double diabetes to bear in mind for T1s and T2s.

 

[Alison54321]

This is controversial. There are many T1s who would agree with you, and many, perhaps an increasing number, who will not. There is always the real possibility of developing double diabetes to bear in mind for T1s and T2s.

This is a very complex issue. I read something recently that said that people with T1D most likely to develop insulin resistance, like T2, were likely to have people with T2 in their family, so genetics plays a big part in this.

Low carb diets are good at solving a particular problem, but they don't solve every problem. Diabetes is too complex an illness for there to be a one size fits all solution to it. There are some people for whom low carb is a good solution, but for others not so much.

I eat fruit because I want all those phyto nutrients, and a mango has enough vitamin c to keep my body happy for a whole day, and people with diabetes tend to have low vitamin c.

I understand that low carb works for you, but for others a moderate carb intake is more appropriate, and fruit fits very nicely into a moderate carb diet.

I think we have to allow @JAT1 to make her own decisions about what to eat.

 

[PatsyB]

I never realised a person could get type 1 when older always thought it was only found in the young but am glad all is getting sorted for you