Help please

[LucySW]

Hi all. I was suddenly told, out of the blue, three days ago that rather than T2D, I have T1D. The hospital doctor i saw put the fear of God into me, told me I was liable to get ketoacidosis at any moment if I didn\t take insulin straight away. However I think she was wrong. Can anyone advise with their experience?

On 13 June (three weeks ago) a routine blood test showed I had 17 mmol/L BS and my HbA1C was quite high (117). I was given Metformin 1g/day and told to meter. So I went away, stopped eating carbs completely, and my BS went down straight away. This is all good. By the time I went for a two-week check before an offroad family holiday to Kenya, my BS was down to a consistent range of between 6 and 9, peaking only by 2 mmol/L after meals in general. Great, I thought. Basically this was just Lo Carb HF, and I don\t know how much effect the Metformin had.

Then four days ago, the antibodies test showed positive, so I have T1D. But as my BS levels are consistent and manageable (6-ish fasting, up to 9 after meals), and as adult-onset T1 comes on slowly, I see no reason for taking insulin. My insulin production may be going to pack up, but it hasn't shown any sign of doing so yet.

So here I am now in Nairobi. I am metering away to check thet the trend stays stable and doesn\t go up. I have basic insulin with me and have been shown how to take it. I am planning to take it only if my BS goes up, and stays up.

What was scary, was that the doctor told me if I didn\t take insulin now, I was at risk of ketoacidosis. From reading it seems that DKA can happen when BS and the body's insulin are out of balance. Isn't that right? I spent two or three days being terrified, even tho it seemed to me from reading (no chance to see the doc again in time) that I was very unlikely to get it. Then I realized that the doctor was seeing me as if I was a standard full-on T1, not the adult-onset kind.

Does this ring a bell with anyone, and am I doing the right thing? Normally I could go back to the doctor and ask, but the timing of all this was bad. And the doctor was very, VERY alarmist, I think quite wrongly.

All advice appreciated -

Lucy

Age 55
BS 17 13 June with HbA1c 117
Told T1 not T2 30 June
LCHF, metering before and after every meal. BS now down to ^-7 fasting, up to 9 after meals. No idea what my current HbA1c is

 

[novorapidboi26]

I would of thought from the antibody test they could have established the rate of cell destruction and therefore whether type 1 or 1.5..........

Ultimately though, if you are type 1, which I suspect you are, you will still be in the honeymoon period, so producing your own diminishing supply of insulin, this could last months, even years....

if you cut carbs out straight away then all your insulin will bee going to the livers supply, making it more manageable, but from your readings, you are still needling some extra insulin to help now and again.....

you should plan to take your insulin if your having any carbs, how much will be down to your doctor at this stage....

 

[donnellysdogs]

Agree with above... Sounds like honeymoon period... It may well be that you will need to have some insulin in the future...

If your testing after meals and your levels rise above 8.0 it may be that you need to have a fast acting bolus with certain foods at themoment.

If the tests show you have type 1 gene, then it is likely that you will need insulin. This is certainly nothing to be afraid of.. It allows you to have treats (christmas??) without worry!!

I been type 1 30 years, so I am used to insulin. I see great results from lchf, but I know December I love my xmas pud and cake and stollen etc, and I eat everything in huge qtys. But because of insulin (and especially my pump) I can do it without worry...




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[LucySW]

So how long can a honeymoon period last? And why take insulin when U have fasting BS levels of 6 or 7, and post-meal levels of only 2 higher? That seems like stable quite low BS to me - esp when it's produced almost entirely by cutting carbs


Newbie T2. Age 55, from London living in Denmark, 3 children in teens.
Diagnosed T2 13 June 2014 with fasting BG level 16 :-(
LCHF with metering + ex + Metformin: from 13 June 2014

 

[donnellysdogs]

Your pancreas may be having 'spurts' of insulin on occasions basically... However, type 1 people, it is really just before the end of the pancreas giving up for good..
Low carbing may well be giving your pancreas a deserved break from having to cope with carbs...but the time period for this is unknown.. All individual to be honest.

Don't worry, carry on what you are doing which sounds as if you are doing so **** well.. True applause to you....

Needing insulin eventually is not the end of the world. I truly hope that your health continues as long as possible without insulin.




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[Ian DP]

Hi Lucy
I am LADA, diagnosed t2 9 months ago then LADA 7 months ago through a GAD test. Aged 59, BMI 21-22.

My diabetes consultant says I am in the honeymoon period, but that back in December he said it would only last a few weeks. Through a LcHf diet I am controlling my BG levels through diet alone (no insulin or meds). My HbA1c was 5.7% 5weeks ago. My average pre breakfast BG reading is around 5.5 to 6, but have been in the 7s..... So similarish to you.

My Consultant and dsn say my BG readings are fantastic. But..... If you read dr bernsteins book (he is a diabetic specialist dr who had t1 age 12 and is now 80) he believes that the honeymoon period can last for ever, if the pancreas / beta cells are looked after, and that this can only be done with fasting blood sugars around 4.8.

My initial aim was to keep off insulin and meds as long as I can.... But certainly dr Bernstein advocates going on insulin very early to get BG levels down to 'non diabetic' levels, and in this way the few remaining beta cells alive will stay alive, thus keeping insulin requirements at low levels.

I have a diabetic appointment next week, and will ask about going on insulin. I think he will say no, too early. I will ask him what he thinks of dr Bernstein's recommendations!!

You can download dr bernsteins 'diabetes solution' book on iBooks and kindle for around £5:00. A very interesting read. Recommended.

I think once you have read it, you may be wanting insulin earlier rather than later, but if you take NHS advice, you will be on insulin later, when all your beta cells have died.

My advice to you..... Keep reading forum posts, there is so much info within this forum and on the web from people like us or who were like us (new to diabetes). The LADA forum posts on here is well worth a read back.

Hard choices. Especially when you get conflicting advice. Upto a few months back I would have gone with NHS advice.... But they told me to eat 1/3 carbs with each of my meals on diagnosis.... And that is without any doubt whatsoever wrong. Very wrong.





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[LucySW]

Thank you Ian. That is so helpful, and I was really hoping you would post. It does sound awfully similar, and I have this feeling that you can see this illness we have in totally different ways - just depending on which way you look at it.

I'll get the book. And I think (today!) I'll continue as I am, Lo-carbing and taking Metformin and watching, watching those numbers.

Thank you - and thank you for not saying, just roll over and take it all.


Diagnosed T2 13 June 2014
Then told T1 30 June 2014 on grounds of antibodies result.
Age 55, from London, living in Denmark.
Diagnosed with fasting BG level 16 and HbA1c 117
After three weeks on LCHF fasting BG level down to 6.
LCHF plus exercise + Metformin

 

[Ian DP]

Ref DKA
I do not think you have to worry about DKA unless you have high blood sugars, I think over 10.
I am not an expert, and hopefully someone will correct me if I am wrong, but I had high DKA on diagnosis (hospitalised overnight), my GP gave me some ketosticks, I often have low to moderate readings, but reading up about it, nothing to worry about, called ketosis, common when on a LcHf diet, and many say they feel better with it, and strive to have them.


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[Daibell]

Don't worry about DKA as that would only happen if you had very high blood sugar and were producing ketones due to ketosis i.e. burning fats. Whether you are in a honeymoon period or not isn't too important as long as you measure your blood sugar and start taking insulin when needed to control your blood sugar. LADA can come on fast or slow and is essentially the same as T1 when advanced in that the pancreas has greatly reduced insulin output

 

[LucySW]

@IanDP, What did the doc say about insulin now to safeguard beta cells?


Diagnosed T2 mid-June 2014 with fasting BG 16 and HbA1c 117/12.9%. Instantly stopped eating carbs and after three weeks on LCHF / exercise / 1g Metformin, fasting BG level down to 6. Then two weeks later antibodies result came thro and they said T1. Go smacked, reeling. Age 55, not fat (BMI 23). From London, living in Denmark.

 

[LucySW]

Hi Ian,

I've read Dr Bernstein now - thanks - and for now am going to follow his recs for v low carbs and steady-ish protein, but not quite so strict. I've been eating a lot of veg and salad (which I love), more than his 1 cup = 12g carb, to fill me up. I had hoped to be able to eat general family meals but just omitting the carbs, but his approach is a bit more exact than that. What are you going for at the moment?

Got a 3-week old HbA1c today -102/11.5% - so it's on the way down. Did another test today which I'll get next week. And got confirmed GAD antibody test, BUT my C-peptide result is within normal range !!

Next week seeing overlæge (senior consultant) with up-to-date HbA1c. I want to ask about starting low insulin to preserve my beta cells.

My average fasting BS a.m. Is 6.6 currently, and average after meals within 1 pt of that.

Lucy



I am 55, BMI 23. Diagnosed T2 mid-June 2014, then diagnosed T1 two weeks later. Initial HbA1c 117/12.9%, fasting BS 17. After two weeks on LCHF, HbA1c 102/11.5%. Metformin 2g/day

 

[Ian DP]

Hi Lucy
I told the DNS / docs what I was doing (Bernstein's solution), and gave my 3 reasons why? They said they understood my reasons and support me (which is good because it is not NHS policy). They have ok'd me to use insulin if I feel I need it (basically if my fasting readings go over 7).

Your fastings of 6.6 and 1 above are showing that you too have a good chance of getting to the Bernstein's levels. I don't know if you have sufficient beta cells remaining to get there, but it looks like you are heading that way... Keep going, it is worth a try as I feel, like me, you have nothing to loose, but maybe betta cells to gain. Only time will tell.

For the last week my BG levels have been around the same as yours. I caught a stomach bug, BG levels went up, did not eat for a couple of days, feeling better now, but desperately trying to get back to Bernstein's recommended levels.

I sometimes wish I could take a very small dose of insulin, less than I unit, or a diluted unit, just to help a little. Bernstein says this is possible with syringe but not pen... I will ask about this option at my next diabetic clinic in 6 weeks time.

Keep at it.. I feel you are making a lot of progress... It takes time to get there, and then there will be hiccups, but keep going.


Diagnosed T2 in sept 2013, BS levels 20+. BMI 22, age 58. Requested a GAD test in November, came back very high 2,000+, doc said I would be T1 within weeks, but presently still LADA. On a LcHf diet taking no insulin or medication, and striving to keep my BS readings as low as possible in order to keep as many insulin making pancreas beta cells as possible for as long as I can.
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[Ian DP]

Your hba1c will soon start tumbling down with 6.1 pre breakfast levels and +1 during the day.


Diagnosed T2 in sept 2013, BS levels 20+. BMI 22, age 58. Requested a GAD test in November, came back very high 2,000+, doc said I would be T1 within weeks, but presently still LADA. On a LcHf diet taking no insulin or medication, and striving to keep my BS readings as low as possible in order to keep as many insulin making pancreas beta cells as possible for as long as I can.
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[LucySW]

Your hba1c will soon start tumbling down with 6.1 pre breakfast levels and +1 during the day.


Diagnosed T2 in sept 2013, BS levels 20+. BMI 22, age 58. Requested a GAD test in November, came back very high 2,000+, doc said I would be T1 within weeks, but presently still LADA. On a LcHf diet taking no insulin or medication, and striving to keep my BS readings as low as possible in order to keep as many insulin making pancreas beta cells as possible for as long as I can.
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They called with today's results !! Today's HbA1c is 78 / 9.3% !! !! Woo-hoo !! !! !!

Happy!

The doc today was recommending I start tiny insulin dose to avoid acidosis, but when I said, But what about the normal C-peptides test, she said, Oh, you're a clever patient! And now I just wait till next week's sesh with the consultant !! !!

OH - if anything can motivate me to be super Dr Bernstein, this can !!

Lucy




I'm LADA - 55, quite slim and active, BMI 23. Diagnosed T2 mid-June 2014, then diagnosed T1 two weeks later. Initial HbA1c 117/12.9%, fasting BS 17. After two weeks on LCHF, HbA1c 102/11.5%. Average fasting a.m. BS currently 6.6. Metformin 2g/day