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Type 1 Or Type 2?

L

LornaFarrell

Well-Known Member
Messages
72
Hi everyone,

I’ve been diagnosed with diabetes for a couple of weeks now but they still haven’t decided if it’s type 1 or 2.

For background: I had an hba1c about 3 months ago and it was 6.1. Two months later I’m in hospital with blurred vision, sugar so high the meter won’t give a number, ketones 3.7 and hba1c of 10.1. The specialist consultant I saw diagnosed type 1 and sent me away on insulin, doses rapidly increased and still aren’t high enough to get things under control.

That was when I was on holiday so last week I saw the consultant at my local hospital who said it might be type 2, based on various risk factors rather than any symptoms. I went into that appointment expecting to get test results, have either type 1 or LADA confirmed and be told more about diet/carb counting. The results had got lost so I came away with no answers and no info.

Today I had a call from a nurse to ask about my numbers and put the insulin doses up again. He mentioned in passing that one result was back and might indicate type 2 but they are waiting for another 2 results before they decide. In the meantime my gp has asked me to go in next week about test results, possibly something to do with my thyroid??? I didn’t know that had even been tested!


So what I’m really hoping for is more info on how they diagnose type 1/2. I know c-peptides were mentioned as well as antibodies but I don’t know enough about that. Is type 2 really likely to develop that fast? My diet was good during that time, and I wasn’t eating much sugar. I felt like the local consultant was judging me based on my weight and assumed type 2 where the one I saw first went by the symptoms and thought type 1. Where does my thyroid fit in?

Are there any good links to that information?
 
Hi. Confusing isn't it and any thyroid problems add to the difficulty in diagnosis. If you have excess weight then the guess is T2 and if you have lost weight recently unexpectedly then T1 becomes more likely. These are generalisations. Also it's unusual to be T2 earlier than age 30'ish. You mention the two tests for T1 i.e. GAD and C-peptide. The former looks for antibodies that attack the pancreatic beta cells. If positive then T1 is diagnosed. C-peptide indicates the level of insulin production. If low then T1 is likely. You can be T1 with a negative GAD. I'm afraid much of diabetes diagnosis is inspired guesswork until the effect of any medication is determined and longer-term HBa1C results are recorded.
 
Ok, I certainly have excess weight but had lost 2st in the couple of months before (following slimming world). I lost 8 1/2lb the week before I was diagnosed, which made no sense as I’d been steadily loosing a pound or two a week prior to that.

Talking about C-peptides they are saying the result is either positive or negative for them but it sounds like I should maybe ask about the high/low number?

I just feel I’ve got a consultant who’s assuming that because I’m larger and previously had GD then it must be T2, I actually felt quite judged in the appointment. He managed to tell me in one breath that I’d probably given myself T2 by eating so much sugar I’d shocked my pancreas (I’d already told him I’d been following SW and loosing weight) and in the next breath said I had ketones because I “starved myself”. I’ve never starved myself in my life!
 
A rapid onset is often a sign of type 1.

Type 1s in honeymoon period can still produce significant c-peptides for years. After 25 years with type 1, my own levels were 0.17 which is not that far from 0.26 nmol / l which is the low end of normal range. Now they're back down to 0.051 again. So they can go up and down throughout your life, and aren't 100% conclusive. But yes, generally established type 1s have very low (or practically zero) c-peptide levels, and type 2 often have much higher but they can also destroy their beta cells from stress.

The first few years of type 1 can have relatively high levels of c-peptide but they will diminish over time. About 7 years is how long they estimate the average "honeymoon" period is now.

I'd check for antibodies. And if you have type 2 diabetes, you can and should work immediately to reduce it by cutting out all carbs from your diet. You don't need them, to my mind they're quite literally a kind of poison for your body.

You can also lose weight from being in DKA zone so be careful about that too. Check your sugars and ketones often. A1C doesn't tell the whole story, not by a long shot. There are four or five types of antibodies related to type 1, and the most serious (anti-GAD65) is reactive to many common starchy foods like grains and corn, so try to avoid foods which will make things worse (aside from their sugar content). Carbs are basically sugar, more or less. Avoid at all costs.
 
Just out of curiosity, was your consultant an older doctor? Forty years ago diabetic diagnosis was easy. All the under 30s were T1 and "thin", all the over 30s were T2 and "fat", and then there were those weird people who got diabetes during pregnancy and progressed to full time diabetes if they had too many babies.

Now it's not nearly so easy (I suspect it wasn't then either but the generalisations sure fitted all the folk I met whenever I visited a clinic). T2s can be thin, T1s can be fat and older, (though I don't think there are any thin T2 children?) But it's easy for doctors to make generalisations based on weight and body shape, though I have to say that fat shaming is particularly unpleasant and unhelpful. (From what I've learnt about T2 recently, I would say that fat is more of a symptom of T2, whereas inability to process sugar correctly and the high amount of carbs in almost all modern diets is the cause.) Though if you're continuing with SW I'd have a hard look at its sugar content, as I know that a lot of diet foods replace fat with sugar. This is contraindicated for T2s, who mostly seem to start to lose weight once they significantly lower the carbs in their diets (bread, potatoes, pasta, rice.)

In any case, my reading says that a lot of LADA people get misdiagnosed as T2 initially, so although it must be very frustrating I think you're just going to have to concentrate on reducing your blood sugars at the moment, without knowing your exact brand of diabetes. At least if you've already had GD then you're familiar with the whole injecting/testing/carb counting game.

Good luck.
 
My two older GPs, (I was in a different practice when I was first diagnosed), immediately took the view I was Type 2 based on my age and weight. The worst one was incredibly rude and dismissive of my tentative suggestion that I'd lost a lot of weight (at least 4 if not 5 stone at that point - definitely 4 according to medical records) with no effort what so ever and shouldn't that be investigated. I was utterly thankful I was changing practice as I'd just moved house to a different area of the city.

Three months later, having got my hbA1c from an initial 144 to 57, where it hovered nicely under a radar for 18 months or so, with a delighted DSN praising me regularly for weight loss (still no effort) and splendid control (which I wasn't satisfied with in the high 50s, but knew I was under that radar) until it began creeping up... and up... and up... and I was told by another older GP it was just progressing as I should expect as a Type 2, and I shouldn't be getting upset. But, maybe I wasn't doing enough with diet or exercise. Yes, well, once I'd asked what bit more than halving my body weight (albeit with no effort but no-one was taking any notice of that at this point) with no effort and walking 8 - 10 miles most days wasn't doing enough) that at least got retracted but I have outright refused to see that GP ever again.

Cue a few months on from that, up for a three-monthly review (I'd been put back on those because of the upward spiralling hbA1c) and the discovery my DSN had moved on. I was persuaded to have my review with a new, younger GP. I am now so thankful I did, as he took everything I said much more seriously, got treated to my record of blood sugars, (other GPs not interested) photos of the physical differences, and over-rode what he should've done in putting me on a third medication referral to the clinics as he felt I'd done everything I could, that my body had had enough and his gut instinct was there was something more unusual... and three years on I've finally got a clear diagnosis of LADA. But, it's taken time, effort and a lot of trying different things.

I'm not actually blaming the older GPs, because I did initially present as the typical older overweight Type 2 and I've learned how difficult it is to get this right. But, I am still frustrated by the attitude of those 3 GPs, all of whom were technically diabetes specialist GPs, and how prevalent those attitudes are when you're over-weight and everything is blamed on weight.
 
I can only agree it's a mess. I'm still listed as T2 as I gave up with my 'expert' diabetes GPs on being 'T1'. The first one didn't spot I was stick thin at diagnosis and an HBa1C of 12% and said to carry on losing weight. Many years later and on the complete set of tablets which did nothing my new diabetes GP said I was NOT T1 and definitely T2 (no tests of course) and refused me insulin. She said she was the expert. Still stick thin she said to have a 'normal balanced diet'! A year later she put me on insulin - finally. Sadly DUK (not this website) doesn't help as it has only recently even recognised LADA and is always way behind the times. NICE is getting there very slowly.
 

Hoping4Cure, I respect that you have a developed a view that carbs are ".... quite literally a kind of poison for your body..... ". That is your personal belief and I must respect that. However, whilst those with diabetes have issues efficiently metabolising carbohydrates; either due to a lack of natural insulin or the ineffectiveness of their own insulin in play, most manage to live a good, healthy and decent life whilst consuming some carbs. For myself, I eat carbs, although I am a low carber, and without medication haven't had an A1c test over 35 in over 4 years, with my last at 30. I'm an active person, but no gym bunny either. I don't believe I am doing myself harm in the way I am managing my condition.

Whilst I would violently agree that all those with metabolic issues, including those with deficient or no insulin production should watch their diets and be mindful of their eating, and where appropriate, balancing it out with their medications, demonising carbohydrates is pretty radical, and not in the ethos of this community.
 
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Hoping4Cure said:
And if you have type 2 diabetes, you can and should work immediately to reduce it by cutting out all carbs from your diet. You don't need them, to my mind they're quite literally a kind of poison for your body.
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I agree that too many carbs lead to too much bg in the blood, which does act like a poison. How many carbs are too many does seem to vary from person to person. Personally I can only tolerate about 20g carbs daily, but there are many people posting on this Forum who can get bg readings that are much better than mine while consuming far more carbs. I agree that carbs are not necessary, but unfortunately it is the nature of food that many valuable nutrients come more or less welded to carbs. I wonder, when you advise cutting out ALL carbs, whether you realise quite how limited such a diet would be? NO vegetables, not even the famous avocados. NO sardines, as some, even those with no added sauce, come with a few carbs included. No cream, only a few brands of butter and a very few types of cheese. No eggs.
 
Ok maybe I went a bit overboard, "no carbs" is a bit overkill, but low-carbing (30-50g per day) is a sensible choice.

Too many ketones are also literally poison, leading to DKA and comas or death, but at least diabetics (of both types) can metabolize them if they are your primary fuel source and not caused by elevated blood sugars.

Also, and I find this hilarious and a propos, that carbs aren't even well metabolized by healthy, non-diabetics!

https://www.diabetes.co.uk/news/201...even-in-people-without-diabetes-98154217.html

Not seeing the connection between carbs and type 2 diabetes progression / diagnosis is basically ignoring news article after news article posted on this very site. I'm not attacking those with type 2 diabetes by any means, I also now think (and so do some researchers) that diet has some influence in the development of type 1 diabetes too, but it's much more complex. Virtually all the type 1 related antibody levels are aggravated and reactive to foods in western, high carb diets: grains, corn. Dairy too.

I ate tons of carbs before becoming type 1, as did my entire family. The incidence of type 1 is increasing over time too, tracking type 2 increases. How can that be if there is no correlation to diet? There are surely other hypotheses, but autoimmunity starts in the gut and food has got to be involved. Babies who get type 1 must either get it from their genes or their environment or their mother directly (enterovirus transmission, or antibodies in their bloodstream). And people here might not know this, but diet choices you make in your lifetime affect the chances of your offspring getting diabetes. They now know that phenotypical traits, not just DNA, are also transmitted genetically via RNA. This is scary, because it means if you lead an unhealthy lifestyle, your "karma" will be hurting your kids. Conversely with good habits, too.

Carbs aren't the only thing to avoid, stress is bad for sugars, over-exercise can lead to blackouts and comas (happened to me), under-exercise to further obesity and lack of insulin sensitivity.

The problem with diabetes is elevated blood sugars. Carbs elevate your blood sugars. So, maybe don't eat them? Or minimize them.

I agree with Dr Fung's approach, he knows what he's talking about and exposes the corruption that led to the conventional wisdom promoting low fat diets, which is an invention from the food industry. They have a financial incentive to make people hungry (insulin spikes after ingesting carbs) so that makes people buy more food. All the while thinking it's "healthy" to eat "no-sugar" and "low-fat" but that's barely not false advertising and basically a lie, because carbs = sugar. The same marketing people behind "smoking doesn't cause cancer, it's perfectly safe" just moved on to other rackets, in the food biz.

Bottom line is this: no matter what type of diabetes you have, or even if you are non-diabetic, try to avoid eating excessive carbs.
 
Hoping4Cure said:
Bottom line is this: no matter what type of diabetes you have, or even if you are non-diabetic, try to avoid eating excessive carbs.
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Absolutely. According to Dr Bernstein, more and more T1s are consuming so many carbs + so much insulin, they are becoming T2 as well as T1!!! (I have no idea if this is correct, but it is what Dr B said. Please don't shoot the messenger!)
 


I'm not going to respond to your reply point by point, but I feel a couple of points are noteworthy.

Firstly, I have to say that not all ketones are dangererous. Ketones, with high blood sugars and/or with with euglycaemic numbers, in the presence of of some medications can be dangerous, however ketones present due to dietary ketosis are not. Indeed, for those sufficiently low carb, with lower/in range bloods they would consider the presence of dietary ketones to be positive, without concern of ketoacidosis. I feel sure you know this, but your post doesn't exprerss it.

I am not dismissing the connection between the consumption of carbs and blood sugar fluctualions. Indeed, although I exprssed my way of eating earlier as being a low carber, I don't and never have routinely, on a day to day basis count carbs, but I eat to my meter. I have also used Libre sensors so have a decent handle on the 24/7 traces my body produces on my way of living. This has been my approach since diagnosis. For me, at diagnosis, what I weighed, or my body composition was, aside from ego and vanity, was largely unimportant, because in my mind, my blood sugar regulation needed to be fixed, with my meter providing that personalised, real-time feedback. As I ate to my meter and brought my bloods into line, I did trim up and my love handles totally disappeared.

In my world, how many grammes of carb an individual consumes is between themselves and their meter, taking into account all sort of other factors, whether social, family dynamic, other co-morbidities and preferences. For me, my preference was (and still is) to avoid pharmaceutical intervention if possible, but for others that just isn't possible, or that to do so would leave little of life in the enjoyable bucket. Sometimes in this life we just can't do what we would prefer, and as such we accept a compromise.

We each have to live with this condition in the best way we know how, but ure as heck, we need to live lives with colour and context, not in flat monochrome. That someone might choose or have to live their life in a different way is for themselves to consider. Either way we as individuals have to live with the plaudits and any unwanted consequences of the action we do or don't take. We all cope and live in different ways, whether we like it or not.
 
Interesting... there's some poignant stuff on this thread for me and sorry to hijack .. I was "diagnosed" as type 2 after having gestational diabetes 12 years ago. However it was revisited after a recent episode in ICU with DKA the hospital. It appears the GAD test after my pregnancy wasn't actually done. It was done recently and came back as positive as well as the c-peptide test. Now I believe the DN either lied to me about the result (as she said it came back negative...distinctly remember this conversation) or the results have been lost. Or could there be another reason? Can you not have the antibodies but suddenly have them?
 
From my reading, it appears to me that the GAD test and most others around diabetes are pretty unreliable.

So many people on this Forum have terrible stories to tell of falling victim to neglect, wilful ignorance, criminal stupidity on the part of health professionals. In addition, Dr Bernstein actually talks about bribery and corruption of official diabetes organisations. IMO we should be aware of these problems and try to guard against them in the future, but we can't change the past. Onward and upward!!!
 
Mrsbris said:
So potentially the recent diagnosis is wrong too?!
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I am absolutely not qualified in this, but I would have thought the DKA episode was conclusive that you are not T2? (Maybe others can comment.) The important thing is to have medication and lifestyle / diet that keep your bg low (and avoid more visits to ICU.) You don't say what is happening for you now.

My impression from this Forum is that T1s are quite often misdiagnosed as T2s, but not the other way around.
 
Currently under the care of the hospital while I'm changing insulin. Was formerly on humalog and humalog I but have changed the long acting to levemir. I'm still on metformin as well but I understand from the practice nurse this might be not necessary.

I'm just peeved that the hospital potentially lied about doing the original GAD test and then decided with no foundation that I was type 2. The dka incident may not have happened and being self employed I wouldn't have had to take unpaid leave and threatened my business. But hey ho.. like you say it's in the past now.
 
Alexandra100 ... thank you btw. The dka is what made the hospital investigate my diagnosis further and it is what they have uncovered. I got an apology letter yesterday.
 
Believe me, I do SO sympathise. Just because misdiagnosis, ignorance and even sculduggery on the part of medical staff seems to be rife, doesn't make it any easier to bear, especially when it has done us real harm. When I was (much) younger I was more trustful and just went along with what the doctors said. Nowadays I check check check every inch of the way. It would be more relaxing to assume they are getting it right, but too dangerous. I believe the vast majority wish me well, but are so often following out-dated guidelines and simplistic rules of thumb half remembered from their training X decades ago.

I strongly recommend that you do like me and get hold of a copy of Dr Bernstein's diabetes bible, "Diabetes Solution": https://www.amazon.co.uk/s/ref=sr_a...ch-Books-Submit.x=0&Adv-Srch-Books-Submit.y=0
Pricy but worth every penny. With Dr B you will be better qualified to evaluate everything the hospital says. You can also read quite a lot of his book and watch his brief videos on various diabetes topics on his site: http://www.diabetes-book.com
 
Some t2s are prone to DKA but it is less common in T2s.
 
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