Type 1 or 2, Doctors still trying to figure it out

k-d

Newbie
Messages
4
Type of diabetes
Type 1
Hi folks,

I'm looking to hear of others experience like mine, as I'm a bit confused to my situation.

I first turned up at my doctors surgery at the start of january this year after suffering from the heavy weight loss and showing the typical symptoms of diabetes. The doctor took a quick blood glucose test and I was 24, I came back the next day for a hba1c and the results were 126, I was put on 2 x 500 metformin twice a day and was sent to my diabetes clinic at the hospital 6 weeks later as a type 2.

Within minutes of meeting my DSN she told me I didn't look like a type 2 and was putting me on insulin, as you can imagine I was a bit stunned and asked her how she knew this. She quickly gave me another quick BG test and i was 26 and was told my metformin was doing nothing for me, she then organized for another hba1c the next day and the results were 124.

I was put on lantus 8 units once a day increased to 10 units a week later and was told to come back for another hba1c and see the consultant in 6 weeks time as most likely I'd be getting put on a bolus insulin as well, my results for this one was 67. the consultant was impressed with my number but said it was confusing as that little amount of lantus should not have brought it down this much and he had done a test looking for antibodies and didn't find any, he told me believes me to be type 1 but in honeymoon period.....long story I got him to agree for me to cut my lantus down to 6 units a day for 3 months then another hba1c test and those results were 43.

So now I'm off all insulin and have another hba1c scheduled for start of october and some more blood tests as the DSN says there's a chance that i gave a false negative for the antibodies.

So now just checking my BG regularly as well as ketones. my BG seems to be all over the place but low carbing does seem to keep it at the lower end of the scale.

So I don't know whether I'm type 1 or 2... would just like a diagnosis one way or another
 
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Jaylee

Oracle
Retired Moderator
Messages
18,213
Type of diabetes
Type 1
Treatment type
Insulin
Hi @k-d ,

Welcome to the forum.

Tagging in @daisy1 . And someone who may help point you in the right direction with finding your answer.. @Daibell
 

catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
So I don't know whether I'm type 1 or 2... would just like a diagnosis one way or another

I'm afraid you probably won't get a definitive answer. About 25% of type 1s are GAD negative. Unless you are antibody tested and the results come back positive, and that means you definitely are type 1, a negative antibody test is not a determinative answer.

It's great you are managing to control your diabetes with diet at the moment, but if you are honeymooning then insulin will eventually be needed. It would be important to keep a close eye on blood sugar levels under the guidance of your DSN and consultant to see if the honeymoon is ending.
 

daisy1

Legend
Messages
26,457
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Cruelty towards animals.
@k-d

Hello k-d and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it useful. Ask as many questions as you need to and someone will be able to help.


BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:
  • Reduce your carbohydrate intake
  • Choose ‘better’ carbohydrates
Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a free 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 8.5 mmol/l
Blood glucose ranges for type 1 diabetes (adults)
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 9 mmol/l
Blood glucose ranges for type 1 diabetes (children)
  • Before meals: 4 to 8 mmol/l
  • 2 hours after meals: under 10 mmol/l
However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

  • structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
  • self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.

Take part in Diabetes.co.uk digital education programs and improve your understanding. They're all free.
  • Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
  • Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
 

leslie10152

Well-Known Member
Messages
1,110
Type of diabetes
Type 2
Treatment type
Insulin
Dislikes
Ignorance
Hi folks,

I'm looking to hear of others experience like mine, as I'm a bit confused to my situation.

I first turned up at my doctors surgery at the start of january this year after suffering from the heavy weight loss and showing the typical symptoms of diabetes. The doctor took a quick blood glucose test and I was 24, I came back the next day for a hba1c and the results were 126, I was put on 2 x 500 metformin twice a day and was sent to my diabetes clinic at the hospital 6 weeks later as a type 2.

Within minutes of meeting my DSN she told me I didn't look like a type 2 and was putting me on insulin, as you can imagine I was a bit stunned and asked her how she knew this. She quickly gave me another quick BG test and i was 26 and was told my metformin was doing nothing for me, she then organized for another hba1c the next day and the results were 124.

I was put on lantus 8 units once a day increased to 10 units a week later and was told to come back for another hba1c and see the consultant in 6 weeks time as most likely I'd be getting put on a bolus insulin as well, my results for this one was 67. the consultant was impressed with my number but said it was confusing as that little amount of lantus should not have brought it down this much and he had done a test looking for antibodies and didn't find any, he told me believes me to be type 1 but in honeymoon period.....long story I got him to agree for me to cut my lantus down to 6 units a day for 3 months then another hba1c test and those results were 43.

So now I'm off all insulin and have another hba1c scheduled for start of october and some more blood tests as the DSN says there's a chance that i gave a false negative for the antibodies.

So now just checking my BG regularly as well as ketones. my BG seems to be all over the place but low carbing does seem to keep it at the lower end of the scale.

So I don't know whether I'm type 1 or 2... would just like a diagnosis one way or another

Welcome to the forum @k-d, fingers crossed that all goes well!
 

Lord Midas

Well-Known Member
Messages
148
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Idiots. Morons. Flat Earthers. Religious fanatics. Trump. Bigots. Misogynists. And other assorted bad types.
Welcome @k-d. That story sounds like mine, but much faster. I was 24mmol/l when first diagnosed, but it was years before moving onto insulin.

I'm really impressed you went low carb straight off. That will not only (eventually) help with your fluctuating BS but with other potential metabolic and cvd issues.

I wish I knew about low carbing when I was first diagnosed.
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
@k-d Some adult onset Type 1s do have a long honeymoon and are able to come off insulin temporarily. You might want to look at the LADA section here.

Tagging @DaftThoughts as she might have some useful input.
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Hi. Yes, a negative GAD doesn't prove your are not T1 but reduces the likelihood. A c-peptide test is more useful as it tells you whether you have low insulin or not i.e. T1 or T2. I think you may just have to wait and see i.e. follow a low-carb diet, have tablets if needed and see how your HBa1C goes over the next year or so. I assume your weight is quite low which points to T1. If you are overweight you will be T2. My honeymoon took around 6 years to finish with insulin. I was thin all the time but gradually went thru all the tablets with a rising HBA1c . The c-peptide I had done privately showed my insulin level to be quite low but negative GAD.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I hope you are testing yourself since your sugars are all over the place. For you, low carbing seems to be making you a winner and keeping you in range but if you are not regularly testing during this exploratory period, you may also be getting hypos? If you could present the docs with food testing records, it might help them? Also, health, stress.

Contralto, reading k-d's original post, he states he is now off all insulin, so the chances of hypos are much less likely, whichever variant of diabetes he has. I would have thought the higher numbers more likely if he's T1.

Of course, plenty of testing makes sense, whichever type it turns out to be.
 

k-d

Newbie
Messages
4
Type of diabetes
Type 1
Thanks for all the welcomes and replies folks

@Contralto Yeah was always testing and still am

@Jaylee Thanks for the info

@catapillar My DSN has told me if my BG is above 10 at any time of testing I have to get in touch

@daisy1 Thanks for the info

@Lord Midas I already had experience of low carbing so was easy for me to implement that regime again, I was consuming about 100g-120g carbs a day while on the lantus but I'm now down to about 50g-60g since being off the lantus

@azure The consultant emphasized that it was most likely temporary and at some point I would have to go back on insulin, actually one of the factors of being allowed to come off the lantus was that I had to promise to go back on it when told :hilarious:, he said it was a thing they see a bit of, peeps coming off and not wanting to go back on when they need too.
I will check out the LADA section

@Daibell I was very thin and ill looking back in january, that's why I was forced by the Mrs to get to the doctors.
I'm usually hovering around the 14st mark and I'm 6'2" in height and broad shouldered but when I went to the doctor I was 12st 2lbs, now I'm 13st 10lbs and looking way more healthier or so my family and friends say :joyful:, even low carbing I've still put on 22lbs over 3 months, I must admit though that my carb intake must increase quite a bit at the weekend but I blame the distillers and brewers for that :bag:
 

gavin86

Well-Known Member
Messages
194
Type of diabetes
Type 1
As has been said, there isn't really a definitive answer unless you're antibody positive.

Welcome anyway, this place is awesome.
 
D

Deleted Account

Guest
@k-d diabetes is complicated. So much so that there is much that no one knows and we manage it through a number of guesses and approximations. There are some things we can control, like how many carbs we eat, but many that we cannot, like how long a honeymoon period can last. If we strive to find answers to everything about the disease, we risk diabetes controlling us rather than the other way around. So, whilst it may be great to label your diabetes as type 1, type 2, LADA, MODY or whatever type of diabetes, I would suggest you don't stress over knowing but concentrate on understanding your and managing your body.

You say your BG seems to be all over the place. "All over the place" to one person with diabetes is great control to another. For example, yesterday my BG ranged from 2.7 to 12. Whilst this is a large range, I was not at either end of the scale for long and understand why: exercise and just eaten, respectively. So try not to stress over temporary variations but be aware of a gradual rising trend which may indicate your honeymoon is coming to an end.
 
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DaftThoughts

Well-Known Member
Messages
397
Type of diabetes
LADA
Treatment type
Insulin
Thanks for tagging me @azure :)

@k-d Your story sounds familiar to me in the sense that 'it just doesn't make sense'! I was diagnosed and put on oral meds as a presumed type 2, which helped at first, but with some additional tests came the knowledge I'd one day be insulin dependent due to being a type LADA. I did test GAD positive, but as others have said not everyone does. I managed to bring down my levels some with oral meds and diet changes (however small they were) but I also had very erratic values until I finally went on insulin. Part of it was the oral meds, the other part was my pancreas 'hiccuping' frequently and giving off insulin irregularly. (I could bike and have a bad hypo, or I could bike and have a bad hyper - it was impossible to predict!)

the consultant was impressed with my number but said it was confusing as that little amount of lantus should not have brought it down this much and he had done a test looking for antibodies and didn't find any, he told me believes me to be type 1 but in honeymoon period.....long story I got him to agree for me to cut my lantus down to 6 units a day for 3 months then another hba1c test and those results were 43.
I was put on Toujeo (basal) for half a year which helped level me out dramatically at first. It wasn't a lot but because of the stage of my diabetes I was in, it helped just enough to put me back into a good range for most of the time. My pancreas just wasn't making enough insulin, period, and I am insulin sensitive most of the time (mornings excluded), so that little bit was plenty to complement where my pancreas lacked. I suspect that might have been the case for you too.

My advice is to keep a close reading on food. Your body might have gotten a 'break' when you were on insulin briefly, giving it some time to rest and recharge, which along with the diet change put you back into a place where you can manage without meds. But even on low carb the body needs insulin, if you are indeed a type 1/LADA/1.5 you will eventually find that any food rises you more than the suggested 2 mmol/L. When that's the case you're probably going to be insulin dependent from that point on. When this will happen varies strongly per person. I managed for close to 2 years without, some people can go even longer especially with low carb.

If you find that your values persist in being very erratic, it might be worth going on insulin even if it's just basal until you need to bolus too. It's meant to stabilize and it's not uncommon to go on a half insulin regime for those who are losing insulin production more slowly.

I want to say that a 'solid diagnosis' isn't as important as the right treatment, but I know from personal experience that having the right diagnosis can be important to your own self. I personally think, and this is not a medical diagnosis, that you fit the LADA profile well. Type 2s typically gain weight due to diabetes prior to diagnosis, while 1/LADA lose weight. (I was the lucky gal who didn't lose weight lol, yay early diagnosis?) Another big marker for T2 is insulin resistance, which you don't appear to be showing either as that bit of Lantus kicked butt in your body. In the end LADA also falls under the umbrella of Type 1, despite some minor genetic differences between the two, In the long run, treatment is very similar, the only difference is the pace. If you're not insulin dependent 100% within a month or two, it's highly likely you're LADA. If from here on out it happens rapidly, it's more likely to be T1. In the end, insulin dependency is the same for either, so I wouldn't fuss too much on what to call it and just keep a close eye on how things develop. :)

It sounds like you have a great doctor who's willing to work with you as an individual rather than force you into a box and give you a treatment that doesn't work for you, which I think is the most important thing for you diabetes treatment. Best of luck!
 

gavin86

Well-Known Member
Messages
194
Type of diabetes
Type 1
... the other part was my pancreas 'hiccuping' frequently and giving off insulin irregularly. (I could bike and have a bad hypo, or I could bike and have a bad hyper - it was impossible to predict!)...

Argh! I'm in the middle of this right now. I had 2 weeks of stability, calculated ratios/correction, and had my endo program it into my Libre meter... wake up next morning and it's all over the place again!
 

k-d

Newbie
Messages
4
Type of diabetes
Type 1
@gavin86 Thanks and I agree the place is pretty awesome

@helensaramay I'm trying my best to not stress about the variations in my numbers and your advice on not getting in to a situation where diabetes is controlling me rather the other way around is taking on board

@DaftThoughts The consultant explained that my pancreas was most likely acting like a stuttering engine that's running smooth then not, so sounds like yourself and I've also read before that it might be beneficial to just stay on a small dose of basal as that can help prolong the honeymoon period, hopefully for the now I can keep my numbers steady but I think I agree if the numbers keep being erratic and I see a trend of them creeping up I'll get back on a small dose of basal.
Yeah you're right about the doctor, at my local hospital there is a consultant for type 1 and another for type 2, I'm with the type 1 and I've been told quite a few times from others that have dealt with him that he's great, so I do feel that's at least a silver lining:happy:
 
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k-d

Newbie
Messages
4
Type of diabetes
Type 1
Hi folks, I thought I would give this a little update..
,
I was up seeing the consultant a fortnight ago, my latest HbA1C was 42 which is basically the same as the last time while.

I was starting to wake up with bg readings that were getting higher over the last few weeks, so it's been decided to go back on 10 units of lantus.

I sort of slipped off the wagon of low carb as I was laid off in the summer and have been drinking alcohol and sort of lazing about which has not been good for my weight, I'm now up to 14st 10lbs. The consultant said I'll be given a C-peptide test in about 18mths but he is now thinking it's possible I might be a type2 as i've kept on putting weight on without being on insulin but with not working at the moment this could factor in to the weight gain.

So the last few mornings wakening up with bg's of 14.6, 14.6 and 12.7, so I bit the bullet and followed his advice and took my first shot of lantus, I know I should've waited until tonight but I've been been flip flopping on taking it for nights now, so at least spur of the moment has got me started.

I need to get focused and motivated and get back on low carbing
 

Circuspony

Well-Known Member
Messages
959
Type of diabetes
Type 1
Treatment type
Insulin
Before my antibody results came back the consultant basically said to me that even if they were negative it still looked like I was going to be insulin dependent - so ignore the 'type' and just follow the advice for an insulin dependent diabetic.

My antibody results did come back positive so definitely LADA in my case. I've also had a pancreas that hiccups. I'm on very low doses of insulin and had one week where I barely needed to bolus for meals. Sadly I suspect I've been going through the honeymoon period for years (they think LADA patients do go through it for years before diagnosis) so I think the hiccups will be less and less.
 
Messages
21
Type of diabetes
Type 1
Treatment type
Insulin
Have you performed a c peptide test? Usually type 2's are diagnosed with normal or high c peptides while t1s usually diagnosed with low c peptide levels .... I've been in a similar situation for a month until anti islet cells antibody test came positive.... Good luck.