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Diagnosed As Type 2, Now I'm Type 1...

Lucie S

Member
Messages
12
Location
London
Type of diabetes
Type 1.5
Treatment type
Insulin
Hi,

Am feeling a bit lost...
I was diagnosed as type 2 in my early 30's (10 years ago). Initially put on metformin and tried to control via diet only. However, I had to progress to introduce insulin about 5-6 years ago as sugars just wouldn't come down.
Recently I was part of a group study investigating early onset diabetes in type 2's. Only to find out that my results showed that I'm type 1.
I spoke with my doctor today who didn't seem that fazed by my results and said that the form of medication and attention i.e. annual eye tests, quarterly fasting blood results etc is what is standard for type 1's also.

I would just like some reassurance & advice from those of you with type 1 that this is correct. I currently take x4 500g metformin daily. 16 units of levemir every evening and novorapid as and when depending on what food I eat - am trying to follow a low carb diet which i'm usually good at for a couple of weeks, then go on a carb binge and fail miserably for the next 2 weeks!!

Fundamentally, should I be concerned about this latest twist??
 
I am type2 but have a friend who is type1. I know she attends the hospital diabetic clinic where as I go to my surgery.
I Don, t know how often she had blood tests when she was first diagnose but I do know now, that she only goes yearly to have a blood test, also by going to the hospital clinic, she has her feet checked and also retinal eye test at the same time
 
Hi @Lucie S

Sadly it's not uncommon for adults who develop Type 1 to be misdiagnosed as Type 2. At least you have the correct diagnosis now

Do you see a consultant? Type 1s are usually better off seeing a specislist than a GP.

The number and frequency of tests will vary between Type 1s. I have HbA1C every 6 months, eye screen annually, microalbumin test, liver and kidney function, coeliac and thyroid screens - and probably some more that I've forgotten!

How is your diabetic control?

Edited to add that low carb isn't compulsory. Type 1s eat varying amounts of carbs. You may find it easier to eat a moderate amount rather than low carb and then "binge".
 
Hey @Lucie S speaking as a type 1 your medication sounds fine so fundamentally the way you are managing is exactly as it should be, what strikes me though is the change in how you mentally interpret your diagnosis, so how do you feel about this ? If you were resigned to managing on insulin for the rest of your life then again no change there so really it just a case of business as normal but with a minor blip. There's quite a few who are misdiagnosed, but it is better to know exactly where you stand.
 


Yes, I have most of these already apart from the coeliac and thyroid - I think.
I'm low carbing as I'm also trying to lose weight, it seems that this helps a lot of people to achieve it?
 
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I guess I'm just upset if i'm resigned to using insulin for the rest of my life. I'm desperately trying to lose weight and as I understand it, insulin helps to retain fat not lose it. So the more I can do to not put on weight the better.
 
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Hi @Lucie S
a bit late to your party !!
welcome to the forum !!
what is most important is you doing the best you can each day -- never beating yourself up over results and continue to get the best results you can whichever regime you choose to follow.
I aim for a low to moderate carb intake each day ( 80 - 120 ) but some days do a bit less and some days a bit more.

remember you have a life to lead as well as having D -- so do try and keep a balance
( sometimes easier said than done -- LOL )


all the best !!
 
Lucie S said:
Yes, I have most of these already apart from the coeliac and thyroid - I think.
I'm low carbing as I'm also trying to lose weight, it seems that this helps a lot of people to achieve it?
Click to expand...

You may want to ask about the coeliac screen (Type 1s are more likely to get it) and the thyroid check too.

Yes, reducing carbs can help with weight loss for many Type 1s Getting your insulin right - that is, matching it correctly to your foods - can help too as it can reduce the need to 'eat to your insulin'.

Insulin in and of itself doesn't make you fat.

Do you count carbs and adjust your insulin? If not, that's something to push for help with. If you're looking for a good book Think Like A Pancreas is a good one.
 

Thanks! I'll ask my doctor about the extra screening in those areas.
I defo need more help regarding my insulin intake, at the moment I'm finding it's mostly guesswork (I actually gave myself a hypo last night due to giving myself too much with my evening meal).
Have just looked up that book and ordered myself a copy!!!
 

Thank you for the kind words of support, much appreciated!!
 
Sorry I am late replying. Very interesting thread because I became Diabetic at age 18 when I was so thin I fitted into young girls jeans! I was told I was a Type 2 so I am 51 years of age now and last month I was in hospital because I collapsed and was told I am a Type 1 and was misdiagnosed, all those years ago wth!!!!
I am freaked out about this and feel the Drs should have known better, I was only put on Insulin 6 years ago after battling illnesses and my blood sugars for all those years when if if been put into Insulin at age 18 I would have had a much easier time of it. Diabetes runs in my family both Type 1 and Type 2, I always school new Drs in my history of this because it is very important they know but I was let down.

The management for Type 1 v Type 2 varies a bit but not so much so they say, I have yet to find that out.
I know my mismanagement which led to disgusting high sugar levels for years and very many arguments with different Drs has led to my feet being riddled with Neuropathy, bad circulation where my feet are generally blue or purplish and freezing cold with very little feeling left in them along with other issues but my feet scare me the most, I fell down some stairs in the house 2 months ago and burst my foot open just under my toes, I didn't know until my dog started to lick my sock and I saw it was blood soaked, good boy!

The other matter that upsets me is remember I told you I collapsed and ended up in hospital earlier, it turns out I have just been diagnosed with Addisons Disease, this upsets me because I've been told one Autoimmune Disease can cause another, Type 1 Diabetes is an autoimmune disorder see my connection! I almost died but thank God I'm still here
 
Hi Lucie, from a Lucy


I suspect that picture may be much more common than we think. Same for me, initially diagnosed Type 2 tho they immediately tested for antibodies so changed it to Type 1 within two weeks.

Yes, treatment is basically the same. The key is your management of your insulin.

No, let me reassure you, insulin in and of itself doesn't make you fat. It makes you fat if you eat a lot of blood-sugar raising food and then bolus to cover it. Insulin removes BG from the blood by laying it down as fat. So if you reduce the carb load and your insulin dose in train with that, you won't lay down so much fat.

The point about carb control is that you can gradually lower your insulin doses, AND you get more consistent levels. So both highs and lows are less frequent.

For the general idea, I do suggest reading the Bernstein book. Even jf you don't want to follow him completely. He explains it very clearly. Apart from that, Richard Feynman explains how restricting carb (to some extent - up to you what numbers you choose) is the only treatment that addresses all aspects of metabolic syndrome and insulin resistance. All meds address only discrete symptoms. Because the underlying mechanism is warped insulin metabolism.

Richard Feynman, The World Turned Upside Down. He's a biochemist.

Bernstein, The Diabetes Solution.

My point is 1) yes, the treatment is basically the same, but

2) fine improvements to make things better can only come from you. Your doctor won't have the time, or the knowledge. But so much is known about this that you can find out yourself and tune your care up to fit you really well.

Lucy
 
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Interestingly the current PM was diagnosed type 2 first before being changed to type 1.

I was diagnosed at 33. In once sense I am lucky that this was in the context of DKA (I had no idea I was diabetic until I got to the hospital and remember doctors kept shouting 'how long have you known you were diabetic' and started drip feeding insulin into me). Had it not been for that I wonder if I would have got a type 2 diagnosis.

Interestingly they never did a blood test on me to double check. They said they didn't really need to as I was still fairly young and not overweight, which seems rather superficial for a diagnosis.
 
Hi. I was diagnosed as T2 and still am although I know from my original symptoms, lack of response to tablets and c-peptide test that I'm actually a late onset T1. I've been on Basal/Bolus for 3 years. I had been on full dose Metformin for 12 years but last year asked for it to be halved as having full dose was pointless and more suited to T2s with insulin resistance. You treatment appears to be good. I now have just annual reviews as my control is very good and they are done by my local surgery who have a diabetes trained nurse.
 
Lucie,

The person who's done the most advanced research on the insulin load triggered by foods, and how to eat so as to minimise the insulin load, is Marty Kendall. He's an engineer (like Dr Bernstein!). His work is the best in the field. I really recommend looking at it.

His blog is: https://optimisingnutrition.com/index-start-here/

And his work on what he calls the insulin index is here: https://optimisingnutrition.com/?s=the+insulin+index+

There's also this: https://optimisingnutrition.com/2015/08/10/insulin-dosing-options-for-type-1-diabetes/

But the site is logically organised, so if you like this stuff (I do, as an ultimate nerd), it's easy to find your way around.

He is undisputed.

Best, Lucy
 

Hiya

I was re-diagnosed after being type 2 aged 20 to type 1 just last month aged 53

Been on insulin for 2 decades and consultant said I had been mis diagnosed

Sounds like you have been misdiagnosed too

Don't worry or panic try and take it in your stride

Good luck
 
 

I was exactly the same, incorrectly diagnosed type 2 in my 30s and re-diagnosed type 1 LADA after 10 years. This forum is really helpful, I posted for help a few times, sometimes just to hear from other diabetics. Although be prepared to be told you’re not type 1 as you can’t change types. I heard this a few times and it’s so infuriating.

I’m on 2g metformin, novorapid and levemir. I struggle with low carb as well, I love bread and pasta too much. I also have more hypos if I go too low with carbs. Rather than cut it out try and reduce carb portions and increase protein and fruit/veg. Take it one day at a time and you’ll be fine.
 
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