• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Type 1 for 18 years and now been told its type 2!

S

smehans

Member
Messages
15
Type of diabetes
Treatment type
Insulin
just a bit of background into my medical history.

i was diagnosed whilst on holiday in the US when i was 13. When i arrived back in the UKUK no tests were done to verify the diagnosis of type 1 diabetes, after a long hard struggle with high bg, putting on weight, other medical conditions like high blood pressure etc and most of all saying to my gp, diabetes nurse, consultants that the text book answer and solutions don't fit me, i finally got a different consultant to run new tests and after 18 years injecting and being on high levels of homolog I've now been told they got it wrong and it is indeed type 2. With one fail swoop they reduced my homolog by 90%, increased my lantus and started me on 2 x 1G tablets of Metformin, with my next review in 3 months to determine how effective its been and what the next plan is, they say that the plan is to reduce the injections down to 0 within 8-12 months.

To say I'm angry and confused is an understatement but the overwhelming feeling is relief, relief that i have been proved to be right and I've not just mis managed my diabetes all these years.

Has anyone ever come across this before? any advice? even peoples opinions would be welcomed.
 
Wow! Well done for fighting your corner and eventually getting that diagnosis.

I wonder how your beta cells are doing, after an 18 year holiday. You'll have to keep us all informed as you experience the transition!

Welcome.
 
thanks, just to add that my hba1c went from 121 to 71 in the space of 6 weeks whilst waiting for the results of the blood test and taking 2 x 500 sr metformin
 
That's a dreadful thing to happen to anyone, especially not confirming your diagnosis, when you returned, and during your long illness.
I'm not surprised though!
I was diagnosed T2 and it took having a hypo in the doctors office that my diagnosis changed.
Your goal must now be to get your diet and fitness under control, the advice you get on here will help tremendously.

Welcome.
 
I'm amazed , though I shouldn't be, knowing that misdiagnosis happens far too often:( I think your story highlights the need for HCP's to LISTEN to their patients .

On what basis did they make the original diagnosis ? And why wasn't it picked up earlier when it became apparentt that things were not as they should be ? Oh, wait! " Patient mismanagement " of course! Silly me !;)

I've heard of many a Type i being misdiagnosed as Type 2 even when they didn't fit the classic profile, usually because they were adults , but never the other way round. I'm sure is has happened though :)

Here's hoping that the correct diagnosis means that you finally begin to feel good again, and though some (different) changes will have to be made, you feel well and happy :)

Signy
 
Heathenlass said:
I'm amazed , though I shouldn't be, knowing that misdiagnosis happens far too often:( I think your story highlights the need for HCP's to LISTEN to their patients .

On what basis did they make the original diagnosis ? And why wasn't it picked up earlier when it became apparentt that things were not as they should be ? Oh, wait! " Patient mismanagement " of course! Silly me !;)

I've heard of many a Type i being misdiagnosed as Type 2 even when they didn't fit the classic profile, usually because they were adults , but never the other way round. I'm sure is has happened though :)

Here's hoping that the correct diagnosis means that you finally begin to feel good again, and though some (different) changes will have to be made, you feel well and happy :)

Signy
Click to expand...

hi,

they made it based in the tests which were run in the US, and the 2 page report they sent over but never once re tested even though i was in hospital over here for 5 days when i got back. I've been battling for years which the "experts" and its only when a new diabetes specialist nurse started working with me last year did we start looking at alternative options in more detail and after they all failed and they had me in hospital for 2 days and realised that in fact my carb ratio was 5 units to 1g of carbs, yes 5 units to 1g!! did they sit up and take notice, up until that point they never believed that i was eating 20-30 grams of carbs a days and taking such high volumes.

although I'm nervous about the next few months, I'm also excited.
 
20-30g, I think we might be able to bump that up a bit for you over time too. that's a pretty hard core atkins induction, 5 units to 1g..wow to get that insulin resistance down will be a bit of work too
are you carrying much weight? my guess is being T2 with that much insulin you would
are you going cold turkey are they going to ween you off insulin?
 
Last edited by a moderator:
smehans said:
hi,

they made it based in the tests which were run in the US, and the 2 page report they sent over but never once re tested even though i was in hospital over here for 5 days when i got back. I've been battling for years which the "experts" and its only when a new diabetes specialist nurse started working with me last year did we start looking at alternative options in more detail and after they all failed and they had me in hospital for 2 days and realised that in fact my carb ratio was 5 units to 1g of carbs, yes 5 units to 1g!! did they sit up and take notice, up until that point they never believed that i was eating 20-30 grams of carbs a days and taking such high volumes.

although I'm nervous about the next few months, I'm also excited.
Click to expand...

Ye Gods, 18 years is a helluva long time to have to go through that !
So where do you go from here ? As Jack say, wean you off insulin ? What do they think the effects of being on insulin in such hight doses would be ?

Signy
 
my know nothing guess for conversational value
zero protein carb/ and eat just some fat so it's not too much load, then cut the insulin as the BG drops from the starvation as the body switches to ketogenic burning fats
 
yes they are slowly going to ween me off insulin. my weight is high and not all due to unhealthy diet. The weight has been going on gradually over the years but not coming off even though I'm at the gym 3 times a week and play badminton 2 times a week and have been 20-30g carbs for nearly 8 months. I'm now on 3units to 10 grams of carbs with 2000mg of metformin in a day and lantus up to 150 units split over am and pm, and 3 days in so far so good. bloods have been great, new ratios working better. They've got me back in 3 months at which point they will be introducing another med and reduce to 1:10 ratio as per normal people.

as for effects i can't be sure, but i have read studies that link it to heart damage (had a minor heart attack last feb at the gym), and also kidney and liver problems, but only time will tell i think.
 
it's not all diet, insulin resistance makes you fat, the liver spends all day soaking up excess glucose and turning it into fat, you have to learn all about T2's now, you're a T2 remember
 
jack412 said:
it's not all diet, insulin resistance makes you fat, the liver spends all day soaking up excess glucose and turning it into fat, you have to learn all about T2's now, you're a T2 remember
Click to expand...
sorry I'm confused by what you mean? type 2 is a mine field for me at the min and I've still not had any info or guidance from the doc.
 
I haven't the skills, better to go to youtube and search for type 2 diabetes lectures or similar
simply a T2 has too much insulin that can't be used because of insulin resistance so the glucose can't get in and be used by the cells and the liver mops up the glucose and lays it down as fat. meanwhile the body thinks its starving because the cells have no fuel to run on and sends out signals to eat
 
jack412 said:
I haven't the skills, better to go to youtube and search for type 2 diabetes lectures or similar
simply a T2 has too much insulin that can't be used because of insulin resistance so the glucose can't get in and be used by the cells and the liver mops up the glucose and lays it down as fat. meanwhile the body thinks its starving because the cells have no fuel to run on and sends out signals to eat
Click to expand...
ah right, thats interesting. I've still got a lot of reading to do it seems. minds boggling at the min with differing information and opinions on the net.
 
Back
Top