Can I prove the Dr's wrong?

[Ian DP]

They think I am in the honeymoon period and will be on insulin within weeks / months.

Since my diagnosis last September I have followed my diabetic consultant and D-nurse specialist advice and through better diet and monitoring my sugar levels prior to eating managed to get my sugar levels just under NHS guidelines. The dr & nurses have been great, and from what I have established since, all their advise tallies with NHS diabetes guidelines...... But......

Although diagnosed T2, upon further research I felt I was LADA (not overweight, loosing weight, age 58) so asked for a GAD test, which was very high and showed that I am, and thus heading to T1, insulin dependent. Some experts think there are more LADA than T1.

More research..... My pancreas beta cells are dying off and since these cells produce the insulin I need, my insulin generation is worsening by the day... Why?.... My dr and nurses say they have no idea, genetic make up, just happens. But I read that there is a strong medical case that it is high blood sugar levels that kills beta cells, and that this occurs within hours of eating..... Too many carbs (jacket potato lunches) in the past??

Just over two weeks ago I decided to check my sugar levels 1 hour after each meal. Much higher than I thought. Mostly 10+, and above the levels of 7.8 that some trials indicate beta cells destruction begins.......

If I am to stop this beta cell destruction I need to keep 1 hr after meal readings below 7.8....... Is this possible?

After three weeks of trying, I have found it currently is. No potatoes, smaller quantities of basmati rice, and just one slice of whole grain bread at a time.... Low carb meals.

My BS averages over the last two weeks, taken one hour after meals are; breakfast 5.8, lunch 5.6, dinner 5.00. Highest readings one hour after meals have been; breakfast 7.3, lunch 6.7, dinner 6.9

Last night I had a stir fry with mackerel followed by a good handful of fruit and natural yoghurt. One hour later and after 15mins light exercise a blood sugar reading of 3.8.... I am not on insulin or any medication.

So.... I have decided to eat as many carbs as possible, with the aim of keeping my BS readings around 6.0 one hour after meals, with a max of 7.8. I have calculated that my carb intake over the last three weeks has been around 120g / day. I seem to be able to take more at breakfast, least at dinner. This way I may / hope to be able to keep as many of my beta cell going for as long as possible..... How long???

My diabetic consultant has asked me to book an appointment to see him as soon as my average BS readings are in double figures after fasting, when he will put me on insulin. From what I have read, I want to go on insulin before that, when I am averaging around 8.00, currently they are around 5.0 over last three weeks (6.0 over last 12 weeks, 7 over Xmas).

My aim, to keep my 'honeymoon' period going for as long as possible, I will be happy if I can get a year, but hoping for longer!.... Time will tell.... I will give periodic updates on my progress here.

What have I got to loose???

Ian


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[Daibell]

I think a lot of what you say is just speculation. Your positive GAD test shows you have GAD anti-bodies. I think most experts would say that islet cell destruction will continue due to these antibodies. Maybe some aspect of diet will slow this but I'm not sure there is much research on that. Having more carbs is the opposite of what I would suggest. I'm not sure what you mean by 'average BS'? NICE guidelines say your HBa1c is the measure to take account of and anything over 7.5% when already on 3 level tablets means insulin. So, if it was me I would reduce the carbs and have an HBa1C at least every 6 months and discuss insulin with GP when you are near or above 7.5%? LADA's vary greatly in the time form diagnosis to insulin. It took me 9 years but others can succumb in less than a year

 

[elaine77]

I'm with Daibell, there is nothing to suggest higher BS levels kill off beta cells..

Something (and none of the HCPs know what) triggered your immune system to start attacking the beta cells and killing them... They're not dying off and your pancreas isn't failing it's simply that the cells that produce the insulin are being attacked and killed by your immune system as your immune system is interpreting them as an intruder - again no one knows why... Your pancreas is not failing though because your pancreas does a whole lot more than just produce insulin so if you had a failing pancreas you would have all sorts of hormone/endocrine issues - not just LADA.

It has been suggested that when your running really high BS your cells could be "going crazy" to try and produce enough insulin and your immune system sees it as something that is being over active and so attacks it but when I asked my own consultant about this he said there is no research or evidence to support it and that BS levels don't matter and none of them know what causes the immune system to attack the cells or the rate at which they destroy them as it's different in every person.

I've been diagnosed 14 months now with no change in meds, no insulin and not really much of a change in my condition.. I went through a phase of higher fasting for a few days and then it went back down... Weird.

On my c-peptide results from diagnosis to 6 months later, my c-peptide levels had doubled and when I asked the consultant how it was possible he said that beta cells can regenerate themselves? This is something I didn't know either...

I really think they should be doing more research into LADA but they're just not coz they're just happy to let everyone "wait to deteriorate" so that they can just give them all insulin. Makes me so angry.


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.

 

[pavlosn]

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[smidge]

I really hope you an prove them wrong Ian and I'll follow your experiment with interest.

I have seen many times that high BG is toxic to beta cells - usually in connection to Type 2, but as Elaine says, they just do so little research into LADA that it's impossible to know whether the same applies. Personally I think it does. I believe that my condition progressed far more quickly than it would have done if I had not been misdiagnosed for nearly a year and told not to test. I realised later that my BG had been reaching the mid 20s and possibly beyond.

In your position, I'd try anything to maintain my beta cells in case they find a cure that stops it progressing but can't reverse it. For me, that would include going onto insulin sooner than the doctor recommends.

Good luck.

Smidge

 

[Ian DP]

Hi Daibell,
I agree, it is speculation, but there seems to be some evidence to support it, and very little real evidence (clinical trials) against.
Just to clarify, I am not out to prove the dr's wrong over my diagnosis, just the time it will take to get to T1. I said to my consultant dr that I understood some People on LADA take years to get there, he replied, but not you, you will be just months maybe even a few weeks.

I feel that I need to eat as many carbs as I can (which won't be much) in order to help keep up my weight. My 'average' BS levels are those reading taken by myself since diagnosis (sep-13). I record them on my iPhone glucose recorder app which charts recordings and gives average readings. I am having my HBa1C taken every 3 months, in sept it was 9.4, nov 6.3 and I will get my feb result next week.

Hi Elaine
Good to hear your BS levels are back down again. I can't really argue against your views, but what have I to lose?? If my logic is wrong I will be on insulin within months, maybe weeks, if I do nothing about it, it will be....months maybe weeks..... This way there is, I feel, some hope I can extend it. My consultant dr says a c-peptide test is pointless, with a high (2000+) GAD and an ultrasound on my pancreas that failed to find it (shrivelled up and hiding behind my bowl tube!) but importantly showing healthy kidney, liver, Gaul bladder, no stones etc. the test would not change anything.... And I tend to agree with him..... I am obviously producing insulin, just not sufficient when I have high BS levels.
I agree completely with you, they should be doing more research into LADA, if they wanted to learn more they would want me to have a c-peptide test..... But they don't.

Thanks for your support Smidge. I have learned so much through regular testing of my BS, I purchased a load of test strips through eBay and my GP / Nurse specialist has agreed to supply some strips, and I have been resubmitting my monthly prescription renewal early, with success so far!! Over the last three weeks I have been testing around 6 times per day. But I think from now on I will only test when I eat something new / I am not sure of carb wise.

As much as I want to avoid insulin (Group 2 /C1 licence complication) I also believe on going on insulin sooner than dr recommendation. Health is more important than licence.
Maybe me counting carbs now and getting an awareness of food carb content beforehand will help when on insulin.
Ian






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[smidge]

Hi Ian!

You are absolutely right that your carb counting and understanding of how different foods affect you will stand you in good stead when you do have to go onto insulin. I am sure the 3 or 4 months when I was testing and carb counting waiting to see a consultant before going onto insulin helped me immensely to deal with managing my condition. I don't think I would have maintained such a good HbA1c without that knowledge.

My consultant also refused me the c-peptide test as he said there was no point. My GAD was high but I clearly still producing insulin. He put me straight onto intermediate basal before the GAD test as he said in his experience slim Type 2s (I was still misdiagnosed at that stage) who didn't respond at all to oral meds always progress quickly to insulin. A little later my GAD showed I was LADA and he said that insulin was the most appropriate treatment. I was happy with that and chose to start using bolus a few months later although I only used it with my tea at that stage - he also gave me all the information and let me choose which insulin to use. So I think the best approach is to decide for yourself when the time is right, start reading about the different insulin profiles and be pro-active in your treatment choices rather than waiting for stuff to happen to you.

Smidge

 

[Daibell]

Hi. Sadly it sounds like you will be on insulin fairly soon. I think you have no choice but to face up to the driving licence issue as it can't be avoided. Apart from that you will find insulin a nice release particularly if you go onto a Basal/Bolus regime which gives total control. I still don't understand why you are so concerned about increasing your weight. My wife encouraged me to when I was steadily getting thinner (she was trying to help) but all it did was increase my blood sugar doing damage and bringing insulin on sooner. If you are LADA only insulin will allow you to increase weight without blood sugar increase

 

[Totto]

Hi Ian, I think you are basically right apart from the eat as many carbs as your pancreas can handle. I would settle for less to save your pancreas. Otherwise I think you are perfectly on the right way and may it last long. I will follow the same road.

 

[mrman]

Managed to go nearly 12 months shortly after starting insulin most of the part with no basal, leading to 2 units then 4. my body seemed to be able to produce that but struggled with meals regardless of carb quantities. Even now depending on weather on 7~9 units basal only. during my time with no basal did question more than once with dsn/consultant they were wrong lol. Don't think high levels cause insulin cell production to cease quicker but, good levels post meals is really a necessity as you know. I do think that by having high levels force any insulin producing cells too work harder and put extra strain on them leading them to exhaust themselves intermittently, when they have a rest but come back till there attacked.

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[elaine77]

Again, I agree with Daibell! Insulin is known to put weight on to people, I have continuously lost weight since diagnosis even with good control.. I am currently sitting on a BMI of 21 and my DSN has said she is "concerned" and doesn't want it to drop any lower but how am I supposed to put on weight when I'm on a restricted diet?? I asked her this and she had no answer... Surprise surprise...

With regard to insulin, when I was first diagnosed my initial reaction was to avoid it at all costs! Then I started to get stressed and fed up of constant worrying over diet and levels and constant trepidation about my descent into insulin dependency that I broached it with my consultant at my 6 month appointment and he told me there was no empirical evidence that early insulin introduction preserves beta cells because insulin doesn't stop, slow down or alter the immune response which is what is killing the beta cells...

He then went on to tell me that he wouldn't even consider putting me on insulin even if I wanted to because my levels were not high enough and the hypo risk was not worth it until my levels were in double figures...

Most of what he says makes sense but then he stopped my c-peptide tests and was unable to tell me how my c-peptide levels had doubled in 6 months and so it leaves me wondering whether they even have a clue about this disease at all!


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.

 

[mrman]

Insulin is known to put weight on people but, that usually means their eating too much for them and compensating with too much insulin or eating too many cals. Not reached my weight before diagnosis yet!!!

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[elaine77]

Your right Brett, it puts weight on you as it allows you to eat things you wouldn't normally be able to eat without having the insulin to compensate for it - thus being carbs which every1 knows are the enemy of weight loss...


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.

 

[Totto]

A BMI of 21 is perfectly normal, isn't it? So what is your DSNs problem with your weight?

I still think OPs view is right to the point of being unchallengeable. He wants to keep his bg level low so far as is possible. What is wrong with that? I will certainly do the same on a low carb diet.

 

[elaine77]

It's not so much my BMI figure it's the fact that I was already in a healthy weight bracket and yet I still lost 4kg in 6 months. This is too rapid a weight loss (apparently) for someone who isn't overweight to start with and isn't trying to lose weight.


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.

 

[mrman]

Your right Brett, it puts weight on you as it allows you to eat things you wouldn't normally be able to eat without having the insulin to compensate for it - thus being carbs which every1 knows are the enemy of weight loss...

Mmm, I eat whats considered on here alot of carbs, I would say I have a normal diet not much different from before. Along with the carbs I eat alot of protein,veg,salad etc. I could bolus for choc,cakes,chips etc and have good readings (i did over christmas and do occasionally) but then I wouldn't consider that a healthy diet anyway and one bound to lead to weight gain along with other probs.
So yes carbs are what can lead to erratic levels, but, they don't always. Certainly not led to weight gain for me


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[Totto]

I think Ian is right in doing what he can to keep the need for insulin at bay if possible, so long as he can control it with diet. If it works it works, if not he has to go in insulin. Why argue with that? Time will show.

 

[mrman]

Fully agree totto

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[mrman]

Just a note though, that by reducing carbs to keep sugars low, whilst continuously losing weight to an unhealthy low bmi is dangerous for anyone. There needs to be a set bmi minimum before carbs are upped and insulin added. What that bmi level is I don't know, maybe someone could advise.

More so for 1.5 with no insulin resistance as insulin producing cells are destroyed at an unknown rate. So, whilst being very receptive to the little insulin they are producing, even more so if eating too little carbs and active still not producing enough insulin. Even type 1s, very low carbing require insulin.

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[Daibell]

Brett, you're right but as Elaine has said the HCPs don't understand T1.5. Typically they treat it as T2 as they haven't heard of LADA and can't contemplate that your islet cells have packed-up. When I was getting thinner and thinner on low-carb but with growing blood sugar despite that, my 'expert' diabetes GP said I should not be starving myself and to have a normal, healthy diet. My wife who was with me went spare and tore into the GP who backed-off but said insulin was a 'last resort' and did add Sitagliptin which was sensible and helped a bit for a while. A year later the same GP who had forgotten me suggested I go onto insulin! She passed me to a superb DN; they're not all bad. In summary when you need insulin you need it.