Type 1 diagnosis

Stu78 said:

Hi all,

Another newbie joining the type 1 club! I was diagnosed in March with an hba1c of 66, and was put on two metformin tablets a day whilst waiting for further tests. Last week I was finally told I had type 1, which was a bit of a shock. My recent blood test showed my sugars at 48, so they seem to be going down without insulin at the moment. I had been trying to cut out some sugar and carbs from my diet, but not doing it perfectly, and also exercising a bit, so was pleased with these figures. I`m guessing I am in the "honeymoon period" My diabetic nurse has said when I see her next week, she might put me on low level insulin (without knowing my latest blood sugar figure at that point) I`m a bit scared if I`m put on insulin at the moment I might have more hypos as my finger prick tests are also showing good, before food generally being between 4.8 and 6.4. Just interested to know others experiences are of going onto insulin when in the early stages

Stuart

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Welcome to the club, the club nobody really wants to join!

You will probably need to wait till all results come back and they can determine what caourse of action is best, you probably are still in honeymoon period, this can be prolonged by keeping tight control and low carb. However eventually you will need insulin. The chances of hypo's with insulin are obviously increased, but you monitor and adjust dosage to suit. Hypo's can also occur on metformin.

Without getting a complete image of what your levels are doing throughout the day (via CGM etc), its impossible to recommend anything based on a couple of numbers.

Going onto insulin isn't the end of the world, and I'd rather master it from the early stages.

Hmm, trying to think of people with similar experience
@ert @Circuspony @Japes @Antje77
May be able to help

Thanks for the tag, @Diakat , and welcome to the forum and diabetes, @Stu78 .
I'm sorry I can't be of more help, as I begged for insulin within a month of my (originally T2) diagnosis 3 years ago because my numbers weren't going below 10 on Gliclazide and eating moderately low carb.

Some say the life of your own beta cells may be prolonged by starting insulin early and/or going low carb, but as far as I'm aware there's no definite proof of that yet.

Stu78 said:

I`m a bit scared if I`m put on insulin at the moment I might have more hypos

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Do you have hypo's now, with Metformin only? That seems unusual (but not unheard of). If so, what numbers are you seeing?

Stu78 said:

before food generally being between 4.8 and 6.4.

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Do you also test after food? Being started on low doses of insulin could be basal (long acting insulin) only, bolus (mealtime insulin) only, or both. If you test high after foods, or you have to eat very low carb to prevent going high after foods, you might find you'll like the insulin as an extra tool to help you keep your bg in healthy levels.

Many T1's find eating lower carb makes managing insulin easier (I'm one of them) but I wouldn't want to restrict my carb intake very drastically at all times and I like the insulin giving me more options and choices.

Good luck in finding a way that fits you!
And remember, with those numbers you're not in a very big hurry, you can take your time learning and thinking and getting used to the situation. And your nurse won't be 'putting you on insulin', most she can do is advise you to start it, you have the say in the end.

Welcome. I managed to stay off insulin for two years after being diagnosed at type 1 on an LCHF diet and a lot of exercise. The specialist wanted me on insulin straight away, but instead, after some lengthy discussions (and my absolute refusal) he agreed to monitor my c-peptide and HbA1c every three months and my blood sugars at least 5 times a day, and blood ketones whenever my blood sugars stayed high or I felt unwell. I deteriorated rather rapidly over a couple of weeks and could no longer clear my ketones, and walked into A&E to start insulin.
The danger is DKA. That's why they'd prefer you started long-acting insulin, in the first instance, even on honeymoon. I had to start with MDI short-acting and long-acting straight away as I was no longer producing any insulin. It was a difficult first month. It would have been an easier and safer way in to start with just long-acting.

I didn't have any choice - my hba1c on diagnosis was 147. It might be worth getting some fast acting insulin such as Novorapid and a pen which can inject in 1/2 units so you can inject for any meals which are a bit carb heavy.

Stu78 said:

Hi all,

Another newbie joining the type 1 club! I was diagnosed in March with an hba1c of 66, and was put on two metformin tablets a day whilst waiting for further tests. Last week I was finally told I had type 1, which was a bit of a shock. My recent blood test showed my sugars at 48, so they seem to be going down without insulin at the moment. I had been trying to cut out some sugar and carbs from my diet, but not doing it perfectly, and also exercising a bit, so was pleased with these figures. I`m guessing I am in the "honeymoon period" My diabetic nurse has said when I see her next week, she might put me on low level insulin (without knowing my latest blood sugar figure at that point) I`m a bit scared if I`m put on insulin at the moment I might have more hypos as my finger prick tests are also showing good, before food generally being between 4.8 and 6.4. Just interested to know others experiences are of going onto insulin when in the early stages

Stuart

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Hi I was diagnosed type two 3 yrs ago aged 53 over the next two years my readings were unsteady although my habc1 test were fine then in Sept 18 my readings went high and after ten weeks of constant medication change and lots of weight list u was sent to hospital be cause of keotone s and put on insulin i am now classed as type 1.5 which with age will eventually be classed as type 1 my c peptic test showed i am still producing i Dublin but my antibodies are killing it of

Thanks for the tag, @Diakat and welcome to the forum @Stu78

I was originally misdiagnosed T2. More than likely because of age and weight rather than properly investigating the initial Hba1c of 144, followed by a 2nd two days later as the labs didn't believe that of 140, which came down in 3 months to 57. I maintained similar levels for the next two years with Metformin, LCHF diet, and a lot of walking. Then, levels drifted up, I got stricter with diet, started walking more, got accused of not doing enough (!) and finally had the luck to land with a GP who had heard of LADA, (previous GPs were just fine with upping meds and blaming me for not trying hard enough with diet or exercise - I'd halved my body weight without trying at that point and walking 8 - 10 miles most days) believed me when I was reporting back what I was doing, and my self-funded BG meters results.

I'd've probably benefited from some kind of insulin from day 1, but as the oral meds, diet and exercise worked until it didn't, I was happy enough with that approach, until the exhaustion of trying to beat numbers down got too much. Running my body on numbers mostly in high teens and 20s for four months is not something I ever want to do again after the twice it's happened.

Hi Stuart, you are lucky to be doing so well. I was diagnosed 2 years ago, at 50 years old and straight onto insulin with fasting BG of 15.

People with T1D who have measurable c-peptide (an indication of continued insulin secretion) have fewer complications than those without, and some people can have this for years. Bernstein reckons tight control and low carb will mean your remaining beta cells should last. I'm not so sure since it was autoimmune disease that got them destroyed in the first place. However, I am doing what I can to keep mine going as long as possible, with exercise, low carb and tight control (4.5-7 almost always including after meals). I think you do get beta cell exhaustion from having to do all the work, as well as higher glucose levels being toxic. So, don't delay going on insulin. You can use really small doses to take pressure off your pancreas and minimise the risk of a hypo.
I read somewhere recently that some people with LADA are slow to decline and others faster. You might be in the first camp.

Plenty of exercise seems to help prolong the honeymoon too. A small study in adults appeared to have 28 months honeymoon in those exercising vs 7 months in those not.

Hello and welcome to the forum @Stu78

I underwent some medical trials of c peptide within 6 months of my diagnosis as Bristol Hospital. I met some t1 specialists doctors on the trial, one of whom I asked the question about pro-longing my honeymoon and his advice was that if I maintained stable and controlled blood glucose levels for as long as possible this meant less stress on the pancreas, which would help prolong the phase, he said it could vary from 6 months to a few years by doing so, personally I wasn't so keen on the honeymoon phase as my levels were erratic due to pancreas production so although over time I found my insulin doses increasing, it also meant I had more control over managing it.

You have been getting some great replies here.

One thing to add. Try getting a full picture of your glucose levels and trends of change with Abbott Freestyle Libre. Individual strip tests do not show the full picture that a graph with levels every 15 minutes based on tests every minute can show.

Abbott are very slow at taking on new customers at the moment (big demand) but they are available over the counter at those Asda stores with a pharmacy. You can sign to have them reclaim VAT so cost is ~£45 and is well worth having; 2 weeks with the complete picture that will show trends & levels as they change 24/7 over exercise and carb intake.

Hey Stuart!
It's great that you're still on your honeymoon period - you can actually prolong this period indefinitely with maintaining good blood sugars (it's really the higher BS that "destroys " the rest of your insulin producing cells), so I've seen a lot of times people like you, in the honeymoon period, to start with low doses of rapid insulin on main meals or even really small doses of basal insulin (which is the one you inject yourself only once a day), and this helps so much because if you can keep your insulin-producing cells, you'll have a better overall management since your body still produces some insulin (it's more physiological that taking it all throughout injections, which can be quite tricky).
I don't know if what I said made sense to you, I hope so if not, just say so I can explain it more clearly

You could asked your diabetes health care team about these informations next appointment if it interests you There's also a really nice explanation of all this on the Diabetes Solution book from Dr. Bernstein!
Hope it helped!

deborabaratto said:

you can actually prolong this period indefinitely

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The only person to claim this is Bernstein himself - a Google Scholar literature search came up with no other hits on the subject. I’d need more evidence before making such a claim - and this comes from someone who follows the Bernstein protocol themselves. I’ve had great success with it, but some of his assertions are a little “out there”.

helensaramay said:

I have read about people having a long honeymoon (mine lasted about 5 years) but I have never read about it being prolonged "indefinitely". Do you have a paper with use cases which I can read? I am intrigued.

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This is from Bernstein's Book, which even though it's not supported by other papers (just like most of his approaches to diabetes management), doesn't make it less truth since it's based upon the knowledge that if you have functioning beta-cells (whether you're a type 1 or type 2 diabetec), and you maintain your blood sugar levels in range and "take the stress out of your panceas" by taking some insulin, you can maintain those cells.

True! I followed before his approach but I thought it was too much restrained.
But recently I went back to it, but made some alterations so I can maintain it (I eat some of the veggies and grains of the "no-no-list", like raw carrots, tomatoes and corn and I'm still usually more than 90% in the 70-100 range).

Mel dCP said:

The only person to claim this is Bernstein himself - a Google Scholar literature search came up with no other hits on the subject. I’d need more evidence before making such a claim - and this comes from someone who follows the Bernstein protocol themselves. I’ve had great success with it, but some of his assertions are a little “out there”.

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Yeah, I totally get you! There're a hundred different factors that can contribute or not to this and it's hard to pinpoint exactly what made it function or not.
Anyways, it's something that for sure needs research and all to be better understood.

helensaramay said:

@deborabaratto thank you for the reference. Unfortunately I remain to be convinced by the indefinite honeymoon period because
- even Bernstein references no proof, only an extension of a hypothesis.
- his explanation that the honeymoon period may last up to a year on traditional treatment is, from my personal experience, an underestimate and suggests a lack of knowledge of type 1 honeymoon period for an adult diagnosed with the condition.

I learnt many many years ago how little is known about how the human body works. Hence, I have little trust in unproven hypothesis and more trust in proven treatment.

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