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Newly Diagnosed - Do I need to know what type I am?

C

Caroline2688

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Insulin
Good evening all, newly diagnosed today, spoke with nurse today on the phone, I asked if I was Type 1 or 2 and was advised that as I am not a spring chicken and overweight it is bound to be type 2 (I disagree) She inferred that it doesn't matter whether I am Type 1 or 2 - is that right? Do I not need to know so that I know what I'm dealing with?

I have a Type 1 daughter and a Type 2 father who both treat their diabetes very differently with one being managed with insulin and the other with diet so I do have some understanding of the differences, so I can't understand how they/I don't need to know which I am!

I advised the nurse that I have already implemented drastic diet changes in case it was Type 2, I do need to lose weight, and was immediately advised that I was setting my self up to fail if my changes were too drastic - I've simply gone lower carb/mediterranean type diet following the 8 week blood sugar diet method, very discouraging to hear that this wasn't the right thing to do in their opinion.

I've been handed medication without even being allowed to attempt to see if diet changes and increased exercise might help, is this normal in others experience? My HbA1c was 78 so I realise there is a need to get it down asap but I'm not keen to start meds without at least trying, or am I completely wrong and should just get them into me?

I obviously have an understanding of diabetes to a point with my daughter being type 1 for the last 21 years but it feels very different now it's me and I don't know what I am dealing with. Should I know or does it really not matter (I think it does but the nurse quite firmly dismissed my questioning).

Any advice gratefully received and thank you for listening this far, I know I'm rambling, my head is spinning at the minute.
 
You most definitely need to know the differences. Tagging @Antje77

EDIT - Even between Types, specifically in T1s case (LADA / Mody)
 
Last edited:
Yes, it matters what type you are. It matters a lot. Type 1 and 2 are not the same thing as you seem to know. Your nurse sounds about as unsupportive as one could possibly get and sadly lacking in knowledge.

It sounds like they have diagnosed you as Type 2 and I assume you've been given metformin? It's up to you what medication you take, but worth investigating what it is if you are not sure. You cannot be forced to take anything.

It's worth trying a dieting change.

A lot of Type2's have a lot of success with low carb dieting. Link below is pretty good info. Low carb allows you to eat till full and many experience weight loss because of the reduction in carbs. If yu are type 2, then think of yourself as being carb intolerant, you just can't process them like before.

https://www.diabetes.co.uk/forum/blog-entry/the-nutritional-thingy.2330/

Anyway, welcome to the forum.
 
Mike d said:
You most definitely need to know the differences. Tagging @Antje77

EDIT - Even between Types, specifically in T1s case (LADA / Mody)
Click to expand...
Yep, I totally agree but unfortunately nurse doesn't so I'm stuck with her opinion that as I am not 6 or slim it must be type 2. Very frustrating.
 
Caroline2688 said:
Good evening all, newly diagnosed today, spoke with nurse today on the phone, I asked if I was Type 1 or 2 and was advised that as I am not a spring chicken and overweight it is bound to be type 2 (I disagree) She inferred that it doesn't matter whether I am Type 1 or 2 - is that right? Do I not need to know so that I know what I'm dealing with?

I have a Type 1 daughter and a Type 2 father who both treat their diabetes very differently with one being managed with insulin and the other with diet so I do have some understanding of the differences, so I can't understand how they/I don't need to know which I am!

I advised the nurse that I have already implemented drastic diet changes in case it was Type 2, I do need to lose weight, and was immediately advised that I was setting my self up to fail if my changes were too drastic - I've simply gone lower carb/mediterranean type diet following the 8 week blood sugar diet method, very discouraging to hear that this wasn't the right thing to do in their opinion.

I've been handed medication without even being allowed to attempt to see if diet changes and increased exercise might help, is this normal in others experience? My HbA1c was 78 so I realise there is a need to get it down asap but I'm not keen to start meds without at least trying, or am I completely wrong and should just get them into me?

I obviously have an understanding of diabetes to a point with my daughter being type 1 for the last 21 years but it feels very different now it's me and I don't know what I am dealing with. Should I know or does it really not matter (I think it does but the nurse quite firmly dismissed my questioning).

Any advice gratefully received and thank you for listening this far, I know I'm rambling, my head is spinning at the minute.
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As others have said; it makes a big difference knowing which type you are, although statistically it is extremely likely that you are type 2 based on your family history of type 2 (there is a huge genetic link with type 2 - 100% monozygotic twin concordance), not so much with type 1, plus your age and weight. Whilst it's not impossible to get adult onset type 1, it is an uncommon exception and usually adult onset type 1 are underweight at diagnosis (same as juvenile onset type 1). Talk to your GP but if I was a betting man (I'm not!) I would bet on it being type 2
 
Tophat1900 said:
Yes, it matters what type you are. It matters a lot. Type 1 and 2 are not the same thing as you seem to know. Your nurse sounds about as unsupportive as one could possibly get and sadly lacking in knowledge.

It sounds like they have diagnosed you as Type 2 and I assume you've been given metformin? It's up to you what medication you take, but worth investigating what it is if you are not sure. You cannot be forced to take anything.

It's worth trying a dieting change.

A lot of Type2's have a lot of success with low carb dieting. Link below is pretty good info. Low carb allows you to eat till full and many experience weight loss because of the reduction in carbs. If yu are type 2, then think of yourself as being carb intolerant, you just can't process them like before.

Anyway, welcome to the forum.
Click to expand...

Totally agree, but how do I find out when nurse is adamant that it's type 2? after many years of helping to manage my daughter's type 1 and having a good understanding of type 2 (to a point!) it is so frustrating to not know what I am dealing with for myself. I had to push to even get my hba1c checked following a random test that flagged up high bloods.

I was initially advised I'd have to wait until after NY to see anyone at which point my patience became a little tested and suddenly I could be seen straight away, why is everything such a battle! Nurse spent 10 minutes barking at me and questioning why I'd commenced a LC diet etc, and why I'd been taking readings, erm because I knew my blood sugars were high! no support whatsoever!

I explained I'd like to try diet change and getting my backside into gear, and have been rewarded with a prescription for gliclazide - I am very reluctant to start taking but also such a rule follower I worry that LC and exercise won't be enough and then I'm in deep doo if I go back and nothing has changed hba1c wise! and yet I know LC works as I've done it before to reduce from 42 to 36 - but I'm in unchartered waters here at 78!
 
Caroline2688 said:
Totally agree, but how do I find out when nurse is adamant that it's type 2? after many years of helping to manage my daughter's type 1 and having a good understanding of type 2 (to a point!) it is so frustrating to not know what I am dealing with for myself. I had to push to even get my hba1c checked following a random test that flagged up high bloods.

I was initially advised I'd have to wait until after NY to see anyone at which point my patience became a little tested and suddenly I could be seen straight away, why is everything such a battle! Nurse spent 10 minutes barking at me and questioning why I'd commenced a LC diet etc, and why I'd been taking readings, erm because I knew my blood sugars were high! no support whatsoever!

I explained I'd like to try diet change and getting my backside into gear, and have been rewarded with a prescription for gliclazide - I am very reluctant to start taking but also such a rule follower I worry that LC and exercise won't be enough and then I'm in deep doo if I go back and nothing has changed hba1c wise! and yet I know LC works as I've done it before to reduce from 42 to 36 - but I'm in unchartered waters here at 78!
Click to expand...

Your experience is, sadly, not unique. A lot of us deal with people who work with out-dated and downright wrong information, and testing is far from encouraged. You have a background in diabetes, which makes it worse: You're a patient who knows a thing or two, and you're thinking for yourself. Shock! Horror!

Okay, so, they're assuming you're a T2. The rests required to determine type are expensive and usually they just guesstimate the odds of what type you are (basing it on weight and age a lot, as you've noticed). If you want to get C-peptide and GAD tests done, you'll have to ask for them specifically, and if you have a feeling you really are misdiagnosed as a T2, you might even want to go private to get them done if they're refused. Right at this moment though, we'll go from the T2 assumption, as that's how you're being treated.

If a T2, then going low carb is an excellent way to go. That's fine in combination with metformin (assuming the side effects aren't crippling, which for some, they are), but it is not a good combination when using gliclazide. Not blindly anyway, because you'd run the risk of hypo's if you don't test. My endo didn't even know the combination could result in hypo's, and called me a liar to my face. (My meter told me they WERE hypo's though, under 3,5 and symptomatic, so not just my imagination). So yeah... You can just go really low carb and not take the medication, see where that gets you first. Your health, your choice. Test before a meal and 2 hours after the first bite, you'll see whether the meal agreed with you if there's a rise of 2 mmol/l or less. Anything over means the meal was carbier than you could handle. As for setting yourself up for failure, I've had a lot of people tell me the same thing. I'm 4 years in now going from low carb, to keto, to carnivore, steadily decreasing my carb intake as I go... My blood sugars are in the normal range. The only people who have a problem with it are those at parties who insist I have cake. (I won't. ;) ). Seriously, you can do this whatever way you want to. And if the results of going low carb are good, the odds are you are a T2... Keep an eye on things, and if anything changes (like, the same low carb meals will have a significantly higher reading), you can still get checked for T1/lada/mody. For the moment though, you have to remember: Whatever happens, it is your body, your choice, and you are in charge. They can't stand beside you in the morning to make you take medication with a cattle-prod. They can't slap a meter out of your hands if you self-fund and want to know how you're doing. I'm a "difficult patient", and I think you may be one too. But I am the only one in my GP's practice who got her T2 back to normal levels without any medication. I think you may be of the same ilk. ;)

Good luck!
Jo
 
Yes, as the others have already said, they are assuming you are T2 because of age and weight and because 90% of people are. Going low carb may fix your issues (if you are T2) or temporarily fix them (if you are T1/LADA). If your levels reduce and then start rising again despite the low carb then LADA becomes more likely and you can push for tests.

Most/many DNs assume that T1 is only for under 30s and T2 is a progressive illness. Neither of these statements are true.
Metformin won't do you any harm (unless it gives you the runs) but my recommendation would be to buy a meter and go low carb.

Good luck.
 
Hi Caroline like you I was diagnosed before Christmas three years ago and told I wouldnt see the DN until sometime in January and to just cut back the sweet stuff over Christmas. I am usually proactive so found this site and read and read and decided to give LC a go so by the time I saw the DN I could be firm that I wanted 3 months to get my numbers down without any medication which I achieved and I never looked back. I would suggest getting yourself a cheap desk diary (or a virtual one) and record BG readings and what you ate and drank diligently for the first three months. That helped me to tweak meals that were unsuitable and enabled me to build up a bank of reliable meals. Sometimes the breathing space over Christmas can work to your advantage to do your own research. Best wishes to you and enjoy Christmas.
 
Hi. You've hit a very common problem and I'm currently doing battle with my local diabetes clinic consultant who thinks a negative GAD means not T1. He is currently refusing an NHS C-Peptide test. I'm slim, have always had the symptoms of LADA. I must admit if you have excess weight then T2 becomes much more likely than T1/LADA. You can always have a GAD and C-Peptide test done privately as I did. Although my GAD was negative, my C-Peptide shows me at the top of the T1 range i.e. low and not T2. The main thing, of course, is the right diet and medication. Do have a low-carb diet to remove any excess weight and then see what your HBA1C is. LADA shows an ever increasing BS regardless of diet and I finally went onto insulin despite my GP initially refusing it. Despite what some posters say, the diets for T1 & T2 are similar i.e. keep the carbs down to maintain the right BMI and BS. If you ever need to start using a CGM (e.g. Libre) it won't be funded if listed as a T2; even then many areas like mine hardly fund T1s. If going into hospital, being able to say you are T1 on insulin has more effect than saying you are T2 even if on insulin.
 
Thank you so much everyone, I really appreciate the input and support.

Yes you are right Jo, I am the worst of patients - informed and I do my research as had to battle many times and diagnosed my own UAT whilst heads were still being shaken - it frustrates the life out of me. Thinking for myself and being proactive had the nurse barking at me whilst I in turn shook my head!

So I think from your replies, I should know which type I am, and I knew that but second guessing myself! but they're not going to tell me so I will go with Type 2 for now due to age and weight and family history (even with Type 1 daughter) and I will continue with LC 800 BS diet without taking meds at this stage, increase exercise and monitor bloods.

My worry is at 78 how quickly I can get it down without meds, as better sooner than later. And if LC and exercise doesn't work does that mean I am not Type 2?

Thank you again.
 
Welcome to the forum, Caroline. An awful lot of GP surgery nurses react like the one you have encountered. Their job is supposed to be to offer advice and suggest solutions, not make you feel hopeless and give up any attempt to use your intelligence and experience to bring down a higher than normal BS level. Our current GP surgery nurse doesn't like the fact that my non-diabetic husband is following the Dr.Mosely 5:2 diet,, but it's his choice. We are all free to make our own decisions. Go for it.
 
Caroline2688 said:
Thank you so much everyone, I really appreciate the input and support.

Yes you are right Jo, I am the worst of patients - informed and I do my research as had to battle many times and diagnosed my own UAT whilst heads were still being shaken - it frustrates the life out of me. Thinking for myself and being proactive had the nurse barking at me whilst I in turn shook my head!

So I think from your replies, I should know which type I am, and I knew that but second guessing myself! but they're not going to tell me so I will go with Type 2 for now due to age and weight and family history (even with Type 1 daughter) and I will continue with LC 800 BS diet without taking meds at this stage, increase exercise and monitor bloods.

My worry is at 78 how quickly I can get it down without meds, as better sooner than later. And if LC and exercise doesn't work does that mean I am not Type 2?

Thank you again.
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Use your meter, it'll tell you whether what you're doing is working. It took me a while to get the low carb diet right because I was getting rather bad advice and it took me a bit to sort out the sense from the nonsense... My meter helped me. (If I'd found this place sooner, it would've gone a lot faster). I currently follow a very, very low carb diet. It'd be no carb, if it wasn't for the fact that I just can't leave the extra dark chocolate alone. But I'm usually under 5 or 10 grams of carbohydrates a day. I didn't need to go that far for the diabetes, (keto would've been enough, about 20 grams a day or less), but it helped a couple of other chronic conditions, so... Very low carb it is. Aaaanyway, back to the point. I started out around the same HbA1c as you have. Even with the bad advice (Whole wheat, low fat, bla bla. Aaargh!), I got my blood glucose back in range within months. Weeks, probably, but they didn't test me very often. My blood sugars got back down to under 8,5 very fast though. That's one of the reasons why having a meter is fantastic: You see progress and it is empowering, especially when there are so many nay-sayers you get to prove WRONG! ;)

And I have to go save my salmon, because I think it's burning.
You're going to be fine, whatever way this turns out. ;)
Jo
 
MinaRotter said:
As others have said; it makes a big difference knowing which type you are, although statistically it is extremely likely that you are type 2 based on your family history of type 2 (there is a huge genetic link with type 2 - 100% monozygotic twin concordance), not so much with type 1, plus your age and weight. Whilst it's not impossible to get adult onset type 1, it is an uncommon exception and usually adult onset type 1 are underweight at diagnosis (same as juvenile onset type 1). Talk to your GP but if I was a betting man (I'm not!) I would bet on it being type 2
Click to expand...

It's not uncommon to get type 1 at an older age. Anything between 20 & 40% are older adults.
 
Caroline2688 said:
Thank you so much everyone, I really appreciate the input and support.

Yes you are right Jo, I am the worst of patients - informed and I do my research as had to battle many times and diagnosed my own UAT whilst heads were still being shaken - it frustrates the life out of me. Thinking for myself and being proactive had the nurse barking at me whilst I in turn shook my head!

So I think from your replies, I should know which type I am, and I knew that but second guessing myself! but they're not going to tell me so I will go with Type 2 for now due to age and weight and family history (even with Type 1 daughter) and I will continue with LC 800 BS diet without taking meds at this stage, increase exercise and monitor bloods.

My worry is at 78 how quickly I can get it down without meds, as better sooner than later. And if LC and exercise doesn't work does that mean I am not Type 2?

Thank you again.
Click to expand...

Hi @Caroline2688,

Welcome to the forum and hugs for the diagnosis and the unhelpful nurse. I sometimes wonder if they knew how unhelpful their behavior was and how it kept people from making helpful changes, would they change their behavior? When I was first diagnosed, my GP told me that diet won't make a difference and that I would almost certainly be put onto insulin at the next appointment in three months' time. This remark almost made me give up right there and then -- a wonder almost that I have continued pursuing the diet route in spite of this.

Anyway, as to your question -- I was diagnosed with an HbA1c of 100 mmol (so much higher than yours) and three months later I was down to a normal level of 34 mmol (maybe helped a little by metformin) just by changing what I eat. I have maintained non-diabetic levels for the last five and half years (without any medication) now. So, yes it possible to bring down your levels quickly, there are also many T2s on this forum who have achieved similar outcomes if not better.

Could you maybe call your practice again (and I appreciate it is hard) and discuss the possibility of going onto metformin rather than gliclazide. There are a number of reasons, which might make metformin a better choice. First, metformin usually works really well with low-carb while gliclazide may lead to hypos. Second, gliclazide causes the pancreas to produce more insulin and might therefore push your pancreas into exhaustion and further loss of beta cells sooner (also explaining why some HCPs have become more reluctant to prescribe gliclazide recently). Third, metformin has number of other potential benefits, such as reducing the likelihood of cardiovascular problems. Fourth, metformin might help with weightloss while gliclazide usually causes weight gain. On the downside, some people might have gastrointestinal problems with metformin, which for most go away within a couple of days. Anyway, if you are given gliclazide (and remember what others have said before -- it's ultimately your choice whether you want to take it), they should also prescribe a meter and testing strips as it carries the risk of hypos.

As to being T2 or T1 -- I agree with previous posters, yes, it matters. Unfortunately, this doesn't mean you'll get the necessary tests (although having a T1 daughter increases the likelihood you might be T1 to my knowledge). The best thing to do is keep monitoring your blood sugars and if you see them going up in spite of reducing the carbs in your diet, share the numbers with your GP and asked him/her again to be tested for T1.

Keeping my fingers crossed for you. Welcome to the forum again.
 
Thank you so much, such a helpful place to be! The nurse totally rocked me even with the knowledge that I've gained over the years and just made me doubt myself chronically! So infuriating!

Very reassuring to hear that it is possible to do this without the meds, they can stay in their box for now! They did give me a meter and strips etc and I'm geared up anyway with a spare from my daughter plus the 800 BS diet book and the add on recipe book I found in Tesco last night which is fab! So I'll continue to follow that for now with monitoring and do my best to prove her wrong! Bloods this morning were single figures for the first time since starting LC on Monday so I'm chuffed with that!

Thanks again everyone, you all make so much sense, they should prescribe joining here on diagnosis!
 
Hello caroline I joined this forum yesterday and already I feel but better and not so anxious reading some comments. I was diagnosed may by my GPS nurse. She told me I was type 2 and put me straight on slow release metformin. Like you I.have diabetes in the family so I knew a bit about it. But its different when your dealing with it yourself, very overwhelming. I had numerous hbc1 tests done over 4 months and I felt terrible, kept phoning and telling her I was losing weight quickly and was worried. Jus kept trying me with different meds. She refered me to an endricrinologist in July and I see him end of October. He was ready to admit me to hosp there and then, he couldn't believe I'd not been refered earlier, considering id phoned so many times about my concerns. So if your not happy with information you are given, please push for tests to be done so you know what type you are. I found out last week I'm deff type 1, I didnt realise how ill I was until I went on insulin and feel so much better. Hope you get it sorted this site was recomended to me and I'm glad I've asked one question at mo, still working out the way this site works
 
These days I don't put up with being barked at - I'd have told her I'd come back when she was feeling better and left, though if I was feeling mischievous I might have taken out the small recording device I have in my bag and switched it on for a while before deciding enough was enough.
If you are eating a low carb diet and seeing more normal numbers, then you are doing your best to sort yourself out and as normal numbers are a good thing, then you might well see other normal things beginning to flourish.
If not, well then there is a need for further investigation, but all my life I have always experienced well being energy and other good things when eating low carb, so you have to set me amongst the biased ones. In my defence it took me 6 months to go from full blown type 2 back to Hba1c at the top end of normal, eating 50 gm of carbs a day.
As you have a meter you can see if low carb has an effect, and how significant it is. These things can take time but there ought to be something to see - keep checking and assessing. If your numbers remain high and particularly if you begin to feel unwell then your GP, an out of hours service, or 111, or A & E or even 999 are all options depending on the severity of symptoms.
 
Quick update...bloods in single figures all day today apart from 2 hrs after lunch when it went from 8 to 10 briefly but 6k steps got it back down to 7!

Feel so much better without running at 12 - 15 all day and loving LC eating!

Fingers crossed levels continue to improve until I see the nurse end of next week so I can proudly show her my improved readings without the use of meds!

Thank you all again for giving me the confidence to try to heal myself x
 
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