Hi just joined and wanted to introduce myself

[Jamesdbrickell]

Hi,
I’m James 44 years old and I was diagnosed type 2 December 2016 with hb1ac over 11 and finger prick over 30. So I started running and changed my diet, I soon lost a lot of weight and got my sugars down to normal levels within six months and I am just taking metformin. Pretty much I had it in remission. All was looking good I even did a half Marathon in October 2017 then I got diagnosed with a skin lymphoma on my head. During the radio therapy I could not exercise and my sugars shot back up even though my diet didn’t change. So as soon as I felt well enough I got running again and my sugars came back down. I just put the increase in sugar down to not exercising. Things were going good again and my levels were really good until June last year. Due to work I had to reduce the amount of exercise and my sugar levels went up (over 20 on a finger prick test) and I started to feel bad. I went to the doctors and was given blood tests and told I was defiately type 2 as my c peptide levels were good and they suggested it was my diet that was not as good as I thought. So I increased the exercise again running over 12 miles a week and going to the gym 3-4 hours a weeks and reducing my carb intake to below 90g a day. Once again my sugar levels came down but I felt terrible. After nagging my gp they eventually did a Gad antibody test in December last year and the results came back that my insulin production was only a third of what it should be and I am actually type 1.5. My levels once again went up over Christmas so I cut even more carbs out of my diet I am on about 40g a day at the moment but I struggle to exercise now as I have very little energy and feel terrible for ages afterwards.
The only good thing is that I am seeing the consultant in Oxford in two weeks so hopefully things can get sorted.

 

[HSSS]

I’m sorry to hear you feel so terrible. It’s good you had an appointment. Can I ask if as you’ve reduced carbs you’ve increased fats? Sometimes we find people that accept the low carb message but are too scared to increase fats due to the indoctrination of anti fat over the last half century. This effectively means they have no energy sources.

 

[Jamesdbrickell]

Yes I have increased fats using cheese and olives. It’s just recently when I have had to cut back further on the carbs that it’s been worse. It’s not long now until I have got my hospital appointment.

 

[Prem51]

Welcome to the forum @Jamesdbrickell. I'm Type 2 so I don't know anything about Type 1.5, but I think it's more like Type 1, and usually controlled by insulin, which the consultant might prescribe when you see her/him.
Some other T1.5s on here might be able to give you some advice.

 

[Diakat]

Type 1.5 is LADA late onset T1. It sounds like insulin may benefit you, allowing more carbs back for exercise.

 

[HSSS]

Yes I have increased fats using cheese and olives. It’s just recently when I have had to cut back further on the carbs that it’s been worse. It’s not long now until I have got my hospital appointment.

By enough? It doesn’t sound a lot to me for an active person. As others have said perhaps you do need insulin now so it’s great that’s being checked but regardless of meds you need an energy source too. Going very low carb needs fats to be increased high enough to give energy.

 

[Antje77]

If the GAD was positive you are a T1. It can take a long time before needing insulin but it might be sooner as well. I was on long acting insulin a month after diagnosis, and on a typical T1 regime of basal insulin and mealtime insulin in 2 months. In hindsight, I must have had diabetes for quite some time before diagnosis though.

The consultant you'll be seeing, is that an endocrinologist or a diabetes nurse? Being a T1, you'll be much better off with care from an endo than with a GP.

Good luck!

 

[Mbaker]

Teasing out what you appear to want looks like a striving for lower numbers.

A couple of things you might want to put into your arsenal are gearing your meals towards fullness. By experimenting you can see if fats or protein better suit you. Resistance exercise builds lean muscle, which in turn should uptake more glucose.

As a Type 2 what is working at present for me is closer to the Bernstein low carb higher protein protocol, many low carbing Type 1's select. I supplement with 15 k of walking most days, and can get away with 5 to 10 mins of weight training. In short LCHF gave me 90 day fbg's of 4.4, LCHP 4.2. There could be confounders, which is why personal testing can get what's right for you.

 

[Jamesdbrickell]

I think I do need to up the fats a bit more, but my cholesterol is quite high and I struggle to keep that down. Also when I was first diagnosed diagnosed I had all the symptoms of diabetes, even my vision was affected. Not great as I am self employed and my job involves driving. So I do all I can to keep things under control so I have lost over 4 stone in the past two years and put all my energy into getting my levels right. Mainly with exercise I have been up to over 20 miles running a week and four hours in the gym. My hb1ac reading during this time was in the normal range (cannot remember the exact number). It’s just the in the last couple of months it has been harder to do so I have been reducing my distances and also I am cutting out more things I eat.
The Gad was I think 78.
And the diabetes specialist in Oxford is an endocrinologist.
Anyway only a couple more weeks and hopefully I can get sorted.

 

[HSSS]

There are a number of threads (it’ll take a while to read them) on here about the myth of eating fat and cholesterol levels. It’s becoming more widely acknowledged and supported by more and more research that dietary cholesterol has little bearing on body cholesterol. Also that it’s really not as simple as high levels. There’s ratios and particle size to consider and newly acknowledged protective benefits. In short don’t worry about it, eat the fat and have energy and feel fulfilled.

 

[Scott-C]

In short don’t worry about it, eat the fat and have energy and feel fulfilled.

The OP mentioned he's been re-dx'd as T1.5. That puts an entirely different complexion on it. If, as his posts appear to suggest, he is getting increasingly tired, it's likely because he is producing less and less insulin. No amount of fat will save him if he is not making enough insulin.

 

[Scott-C]

Hi, @Jamesdbrickell , it's surprisingly common to see changes in dx. If the T1.5 dx is confirmed, it's a completely different ball game. T2 and T1 are not on the same spectrum. They are fundamentally different conditions requiring different management techniques.

Your posts paint a picture of slowly declining insulin production. You were able to manage it up to a point by lowering carbs so that the insulin you were making matched the carb intake, and the exercise also brings glut4 - glucose transporter 4 - in your muscles into play - they are a mechanism in muscle cells which are activated by muscle contraction during exercise and let glucose into the muscle cells to be burned as energy even in the absence of insulin.

You seem to be getting increasingly tired, despite those strategies, which suggests that insulin production is tailing off.

In T1, that happens very quickly - I was totally out of the game in a couple of weeks, because I just stopped making insulin, the dka almost killed me.

With T1.5, it happens more slowly, but it still happens.

I suspect it is highly likely that you will be prescribed insulin. That is not something to be afraid of or ashamed of. If your body is not making enough to let you live a comfortable life, you need to inject it, and no amount of low carbing will change that.

It takes a while to get used to how to use it, but it will give you a great deal of leeway in managing carbs. You can go low carb if you want to, but, equally, you can also manage higher amounts - this is not T2.

I had a 90g Chinese buffet yesterday, and an 80g French lunch today. The highest I've been after those meals was 7.4 yesterday and 6 today.

Insulin will give you energy back, for the simple reason that it will let glucose into your cells to fuel you. I was back on skis and my bike about 3 weeks after my dx.

Good luck!

 

[Antje77]

Fully agree with @Scott-C ! (except for the skiing part, but I didn't ski before diabetes either)

 

[therower]

@Jamesdbrickell . Welcome to the forum.
Fully concur with what @Scott-C has already posted.
As a T1 I have down the years tried eating low carb/ high fat and whilst it did offer negligible positive results it came nowhere being better than a healthy balanced diet. I just didn’t get that bang of energy I want in my life.
Get your diagnosis sorted out first then try different things. There definitely is not one diet that suits all.

 

[Scott-C]

Fully agree with @Scott-C ! (except for the skiing part, but I didn't ski before diabetes either)

Lol, the Netherlands hasn't really got the hills for it!

Although if you really want to try, you could tie a rope onto a canal boat and get dragged at 1km per hour through tulip fields...

 

[HSSS]

The OP mentioned he's been re-dx'd as T1.5. That puts an entirely different complexion on it. If, as his posts appear to suggest, he is getting increasingly tired, it's likely because he is producing less and less insulin. No amount of fat will save him if he is not making enough insulin.

I never suggested increasing fat was in lieu of a correct diagnosis or insulin. I specifically said medical assessment was a good thing. But even type 1 who do low carb need fat in lieu of carbs for energy.

The don’t worry about it comment was in regard to cholesterol. Please don’t selectively quote changing the context.

 

[Scott-C]

I never suggested increasing fat was in lieu of a correct diagnosis or insulin. I specifically said medical assessment was a good thing. But even type 1 who do low carb need fat in lieu of carbs for energy.

The don’t worry about it comment was in regard to cholesterol. Please don’t selectively quote changing the context.

Yes, fair point, HSSS, I see now that in post #6 you mentioned the importance of dx and insulin, so please accept my apologies for that.

These forum/social media things can turn into a bit of a crazy whirligig at times!!

 

[HSSS]

Yes, fair point, HSSS, I see now that in post #6 you mentioned the importance of dx and insulin, so please accept my apologies for that.

These forum/social media things can turn into a bit of a crazy whirligig at times!!

Thanks. No problems. Both my posts #2 and 6 referred to medical reassessment. Things can indeed get a little lost in the melee. I accept I am far from knowledgeable about type 1 or 1.5. But I do know a little more (not a lot) about eating low carb now. We all need energy sources of some kind, and sometimes meds too in order to access them.

 

[Jamesdbrickell]

Thanks for the advice, it’s really appreciated. When I thought I was type 2 I managed to get things well under control and was happy the way things were going. But since things got worse and then being told I am type 1.5 I have found it a lot harder as it’s out of my control and I just need to see the specialist. Just counting down the days then hopefully we can plan the best way forward.

 

[Juicyj]

Hello and welcome to the forum @Jamesdbrickell

I can see your frustration there, thinking you'd cracked it and then finding out it wasn't what you thought after all, insulin will help greatly, so you'll get your energy back and be running again in no time, I run myself and try to get out 3-4 times a week as well as the local parkrun, taking insulin will require a little more care to avoid going hypo but good glucose management and a plan to manage your glucose levels during exercise and afterwards will help - shout me if you need any advice.