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Diagnosed T2 for 2 years Now being treated as T1?

R

Roryj96

Newbie
Messages
2
Type of diabetes
LADA
Treatment type
Insulin
Dislikes
Having diabetes
I was diagnosed initially in December 2017 as type two and started 500 metformin twice a day. Sugars improved them declined dose increased same issue add Gliclazide same issue increase glicazide same issue alogliptin same issue. Finally got referred to the hospital in February and they have told me they are treating me as type one and have stopped everything apart from metformin. They did a C Peptide test but I haven’t been told anything definitive but I have no family history of any type of diabetes. I am have difficulties injecting and managing my dose of insulin as I don’t tend to eat during the day and have issues with being sick quite often and I’ve had a few hypos since starting insulin.
I’m on 11 units of Levemir in the morning and 4 units of Novorapid if my morning bgl is 15mmol+ then 6-8 at my first meal 6-8 second meal and between 2-10 if I end up binging at nighttime. I can’t seem to control my eating habits and feel like I’ve been given a life sentence in a way.

The hospital also gave me a new glucose monitor as it takes smaller blood samples. They prescribed the Tee2+ glucose monitor and it has a Bluetooth app so logs my results on my phone but previously used a Mylife PuraX but wasted so many testing strips either not bleeding enough or my finger making contact with the strip and ending up with an error message

Any advice would be appreciated!
 

Hello there Rory, I'm sorry you seem to be having a bi of a rotten time with your diabetes at the moment,

I may be very wromg here (and apologies if I am), but your eating regime seems like it might be a bit chaotic. By chaotic I am meaning to real pattern or rhythm to it. The thing is your insulin regime, where you seem to nbe injecting set amounts at set times of the day will work best if you eat regularly and similar (not necessarily the same) things each day.

I'm not suggesting your breakfast has to be x food every day, but foods of a similar nutritional value, where carbohydrates and to a lesser extent calories are concerned.

Have you discussed your eating regime with your team, or were your insulin dosing levels set by where your blood sugar levels were at the time of moving you onto insulin?

It's still very early morning in UK, but I'm sure others will respond to you as they wake up and log on through the day.
 
Hi there,
I had the same thing happen to me in 2008. I was 44. My dr. said I had Type 2. I asked to be tested for EVERYTHING bc I was sooo sick. After labs, the nurse said goodbye. I said I wanted a urinalysis My glucose showed over 300. She said I didn't know you were diabetic. Well, neither did I!

First, the dr. said Type 2. Then I was skyrocketing after lunch only to plummet a few hours later into hypoglycemia. So I was diagnosed instead w/ hypoglycemia. Why do I have 300 beforehand then? OH! also I was wasting (classic sign of Type 1. I went from 135 to 110 in a few months. Every symptom I had was Type 1, not 2. Not sure if lows happen to others in the beginning stages. But it definitely showed my pancreas was super "confused" I was put on Metformin, didn't help. My glucose levels became severe.

I decided to see an endocrinologist This doctor said Type 2 also. HOWEVER, no one had bothered to run labs to check my pancreas beta and islets. So I went to yet another endocrinologist bc I was becoming so ill I couldn't teach. Type 2 meds not doing a thing.

The 3rd dr. asked if they tested labs for a definite diagnosis etc... Nope. He was shocked. How could anyone diagnose me w/o running these tests? Indeed was Type 1. I have NO family members w/ Type 1 either. However, I read it is not Type 1 that is the commonality w/ family members. It is an autoimmune disease. There's a handful. Look them up & then see if anyone in your family has any of them. My daughter had JRA from age 2, & my cousin had MS. My autoimmune disease was Type 1. You & I were very lucky to get this later in life rather than a juvenile. The reason is we were not exposed to the trigger until adults.

Type 1 & 2 are completely different diseases. Type 1'is autoimmune, & one's pancreas is not producing insulin or very little. must have insulin. My glucose goes up even if I do not eat. Type 2's are insulin resistant. Their pancreas is overworked, usually by a high carb diet, but their pancreas still produces insulin. (I hate that both are called diabetes!!! Big misunderstanding between the 2 diseases .)

After my endocrinologist moved back to his homeland, I saw a few others. Still not controlled & pens were not doing the trick! Severe! I decided to see a university hospital/physician (the best doctors in the USA are at these type hospitals) I went to Barnes/ Washington University doctors.They treated me fast. Type 1 was now 2+ years & doing a lot damage. They put me on an insulin pump immediately. I have a Mini med by Medtronics. Insurance covers.

The glucometer & the pump link. The endocrinologist programs it for bolus, basal, & corrections etc... It does all of the math. If I'm at 300, for example. I press "BOLUS", it asks how many carbs I have eaten I ate. In this case, let's just say I haven't eaten. It does the math and gives me a shot to bring it down. All the calculations are done by the pump. After near-death from DKA, I had to get a CGM-it also links w/ pump. Only 2 finger sticks a day to calibrate. It alarms me if high or low. If high, it will give me shots to help bring me down.

My advice- get the best endocrinologist you can!!! They know ALL the tests you need. C peptide is NOT a definitive test for Type 1! Don't want your time elsewhere. They'll prescribe a pump. Pens are not going to do what a pump does & so easy! Get a CMG & glucometer that link to your pump. It's going to save you from much illness & literally save your life. Good luck, my friend. Trust me. I went through exactly what you are now 12 years ago.
 
8 years nearly as a type 2, in spite of, on reflection classic symptoms of type 1, but now type 1 as of December last.

I agree with above regular meals will make thibgs easier and get clued up on carb counting. Plenty of resources on line, i use carbs and calories app and mysugr to record and calculate insulin doses at meals.
 
My A1C went from 11 to 7 using the CMG and pump. I've never been told to eat a certain diet except as a misdiagnosed Type 2 or when I was on pens that could not control my glucose due to Levemir not covering ALL of the basal I need to get through the day. My pancreas is dead. My pump is an artificial pancreas. No disrespect, but with Type 1 for 12 yeas and seeing an endocrinologist who is one of a 100 of the doctors named "Top Endocrinologist Docs" in USA Today, I've never been told to eat a regime of food types or times. Always do what your endocrinologist or his/her dietician says. Perhaps, the advice above is his endocrinologist's personal advice and opinion. However, this regime is what I was told to do w/ Type 2 diagnosis that ended up incorrect just like you. What works for Type 2 is different for Type 1's and visa versa. Please try not to get the two confused. Type 1's glucose can skyrocket just breathing oxygen. I can even fast or let's say I have the flu and cannot eat. As a Type 1, I'll get super high w/out food or drink. For example, my pump was replaced last week. For the couple days, I was without it and waiting for my new one, I got up over 500 overnight bc my pump wasn't on. This was w/out eating before bed, taking Levemir for 12 hour basal and Humalog for bolusing. As soon as I got the new pump going, put in my CMG, and finger sticks a few times to calibrate, the pump and CMG work 24/7 w/o much on my end except when I eat. or calibrate twice a day. I can look at my pump at any time and it shows me my glucose reading w/ a push of the button. Earlier, I gave myself too much insulin bc I didn't eat as much as I thought. An alarm went off, and I was at 80. Under 100, I plummet. So I ate a little bit to bring it back up.

1. The Levemir is for basal. It keeps your glucose down for 12 hours but is not going to handle food.
2. Bolusing covers food. These are the shots you take if high or you eat.
3. You're getting lows because you're in the beginning stages OR you're giving too much insulin OR your pancreas is still trying to kick in off and on. Eventually, it will just go out. Take your glucose before you eat, add the carbs, and do the math your doctor told you to also cover if you're high before you eat. I eat whenever I want, including snacks. It has no effect. Basically, consider your pancreas is dying or dead. Type 1's will not get better w/ diet, but is better controlled until you get a handle on it.
 
Hi. Many of us have been down the route. Do try to follow a fairly normal and regular meal-time routine and read-up on carb-counting so you really do adjust your Bolus insulin at mealtimes to the carbs you eat plus a little bit for the proteins.
 

Hi Rory, I am a person who has rarely followed a 'traditional' food pattern, ie by having 3 x meals a day at more or less set times and a snack in between type of thing. I have worked shifts my entire life and rarely have breakfast or lunch and mostly have one main meal in the evenings with perhaps a snack or two during the day...or maybe 2 x meals at varying times of the day...or not, you get my drift?

I fully understand that at first it can be easier for your Consultant/Dr to assess how you are doing when you eat breakfast, take your 6-8 units. eat lunch, take your units and so on, this can help them to help you to adjust your insulin.

After the first month or so of diagnosis and when I understood it all a bit more and how different food affected me, I went back to MY lifestyle and my diabetes now works around me. I am careful and am certainly not a reckless person but in my view you do not need to change your lifestyle to a regime that is not YOU. Of course you have to work hard at managing your condition and taking the right amount of insulin with the right amount of food and looking after yourself, but honestly, if you eat well (for your condition) and take your medication and work out a regime that keeps you healthy and happy then that's all that matters.

Nobody is going to tell me when to eat and at what times, I will decide that but in a sensible way. Of course you must follow the instructions of your team at this early stage but don't despair, when you are more experienced you will be able to be more flexible and do what YOU want. x
 
Last edited:
DCUKMod said:
The thing is your insulin regime, where you seem to nbe injecting set amounts at set times of the day will work best if you eat regularly and similar (not necessarily the same) things each day.
Click to expand...

Hi there, I agree that is one way to stabilise your glucose levels but these days it is about managing your insulin to your food, not the other way around and I wonder whether the poster's diabetes team understand this. Of course (and I guess this is your point) if a person is on a rigid, set amount of insulin at set times of the day then regular meals to accompany that would be sensible. Hopefully the poster will get past these initial weeks and get onto a more flexible routine where he decides when and if to eat and how to adjust insulin accordingly. x
 
I totally agree MDI is a much, much better way of dealing with things, over time, but when new to insulin, plus what seems to be issues with non-specific binging, declared by the OP, it seems like a very big ask to start injecting, and accurate carb counting all at the same time, but this likely another example demonstrating the number of ways to skin a cat.
 

WELL SAID!!! I AGREE 100%. All of us Type 1's need to do what works for us. Me? My diet didn't cause this, and it's gonna be with me forever. I was in a diabetic coma accidentally when my pump failed 4 years ago. My bg goes up just breathing. It's laughable that a so-called regime is going to help me or my Type 1. I have gastroparesis so it is impossible to have an eating regime. My pump and sensor ==artificial pancreas works together, and I get shots w/o even knowing it. It's been perfected. Isn't that the point for us? I wish to God Type 1 Diabetes and Type 2 Diabetes had 2 separate names!!! I was told over the weekend, "You know your diabetes is 100% CURABLE if you go on the Atkin's Diet?!?" I couldn't help but get mad. Today, I had to explain the difference of the two to a gal who's father was just diagnosed Type 2, bc she feared he'd be as bad off as the severity of my case and near-death episodes. I calmed her and explained it thoroughly. Diabetes is so confusing to the average person. Why are Type and 2 called "diabetes" when one has a dead pancreas and the other is insulin resistant? Treated different and different symptoms. When teaching 8th grade, we had 3 kids on pumps. The nurse had a meeting for the teachers. I was more confused afterward than before. Why the hell would they need orange juice etc... Well, my questions were answered by the end of the semester when I was diagnosed.
 
Daibell said:
Hi. Many of us have been down the route. Do try to follow a fairly normal and regular meal-time routine and read-up on carb-counting so you really do adjust your Bolus insulin at mealtimes to the carbs you eat plus a little bit for the proteins.
Click to expand...

Great advice!
 

"these days it is about managing your insulin to your food, not the other way" Exactly! If I had to have a regime to stabilize my glucose, then I would also have to monitor my breathing. If I breathe, my glucose goes up. Thus, I am on a pump and CMG with A1C of 7. I eat what I want when I want bc it is an artificial pancreas. Do amputees only get to walk during certain times of the day in a similar way? lol! I know, that was a bad example! lol!
 

Absolutely! You are correct. However, statistics show that people on pens, as opposed to pumps that link to CMG's for knowing you BG and with a few buttons, can correct it as programed by their docs, have terrific A1C's. And accurate boluses with automatic basaling. Does insurance pay for that in the UK?
 

Hi Rory

I was diagnosed back in 2014 with a blood sugar level of +23 and up. I had been reporting for weeks and weeks that I was feeling unwell and it wasn't until I insisted they did a blood test that they suddenly jumped into action. For me it was the start of a problem with my pancreas and gallstones. Within weeks I was admitted into hospital and nearly died with Pancreatitis, which we all know produces the bodies insulin. I have a damaged Pancreas now and it seems to be getting worse. My blood sugar should be between 4 and 6 but it sits between 10 and 16. I do take medication which is known to affect blood sugar, making it higher than it should be, but there is nothing I can do to reduce my blood sugar. I can fast for a week and my levels will still be high. Just drinking water makes zero difference. I never have hypos just everything way too high. Nobody wants to listen to me they just want to throw more drugs at me. Currently they are treating me as a type 3 diabetic, this is due to my issue with my pancreas.
I take the max amount per day of Metformin, Gliclazide and now I am on a daily insulin pen 20 ml slow release insulin. I used to be on other tablets but they were stopped once the hospital were involved.

I use a monitor called GlucoLab which makes no difference as to you touching anything with your fingers when taking blood samples. I have never had a single error message ever, and it is 100% correct in its calibration.
The best monitor at the moment is the one which lasts 7 days and it goes onto your arm. It is not cheap but it is the best and requires no blood letting at all. Other than that there are monitors like mine which do not require too much blood at all, a small prick a little squeeze and just enough to cover the end of the probe.

Just remember, you are in control of what they do to you, you have a right to know why, and you should always ask questions. Simply cutting out all food is not the answer as I have found out, and eating all the wrong things does not help. People can live with type 2 very easily and can reverse being type 2. Always ask questions, and always look for better ways to manage your health, and remember the Doctors will get kickbacks for selling you, giving away monitors which companies push out. Its not the monitors that cost big money its what you have to buy to go with it, like test strips.
 
Hi there,
I was not familiar w/ Type 3 Diabetes. There's 1,2, and 1.5. However, when I looked up Type 3, I had to pause and scratch my head. All of the medical encyclopedias online said:

"This “type 3 diabetes” is a term that has been proposed to describe the hypothesis that Alzheimer’s disease, which is a major cause of dementia, is triggered by a type of insulin resistance and insulin-like growth factor dysfunction that occurs specifically in the brain."

"This condition also has been used by some to describe people who have type 2 diabetes and are also diagnosed with Alzheimer’s disease dementia. The classification of type 3 diabetes is highly controversial, and it’s not widely accepted by the medical community as a clinical diagnosis."

Unless you have dementia, you do not have Type 3, which is not even an acceptable diagnosis pertaining to one's blood sugars and insulin response.

Type 3 is a proposed term not recognized by endocrinologists. This does not sound like an accurate diagnosis unless you have dementia. However, you only said pancreatitis. If the pancreas is destroyed, then you need insulin around the clock, just plain old regular fast-acting insulin for food and corrections! Boluses. Then long-acting twice a day. Basal. If one is also insulin resistant then there are the other pens and Metformin.

If you don't mind, I'd like to give you some advice. I'm Type 1.5 (Adult onset of Type 1 Diabetes)

First, IF the aforementioned does NOT apply to you, get a new doctor. RUN; don't walk!!! Second, regardless, you need short-acting insulin. If your glucose is going up drinking water, (I always use the phrase, "It goes up when I am breathing oxygen.") then you need insulin for food and corrections around the clock. Long-acting is for your basal and lasts 12 hours. The pills are for insulin resistance. However, you are NOT on anything to cover your food intake (bolus). Also, if you are going up as you describe, you probably need to ask why you are not being treated as a Type 1. If you are not eating, and you are taking long-acting, and you are not Type 1, then you should NOT be running sooo high. Please, get a second opinion. Unless your insulin resistant, the pills aren't going to help. A Type 1 can indeed be on long-acting insulin, short-acting insulin, and Type 2 pills or pens. However, most Type 2 diabetics do NOT need any insulin.

 


Whilst I can't be sure of course, I have a feeling @Andy-Annom may be more likely to be referring to Type 3c, which differs again.
 
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