Hello all... Joined because needed info that is all in one place...

[Pollyanna]

Fingers are dropping off because of the constant surfing for info.. Much of which seems contradictory or incomplete. I am newly diagnosed T2
As in 1 week in and no meds yet, so been feeling ill for months, in lots of pain, been treated for this that and the other. It was only when I collapsed and was rushed to hospital that the idea arose that I 'might be diabetic'.
Went for blood test Saturday, and blood sugar was still at 12.5, can't get it down.... Am permanently hungry and feel totally exhausted and in abdominal pain... Sorry for rambling . Off to search the what I can eat areas . .thanks for being here x

 

[Northerner]

Fingers are dropping off because of the constant surfing for info.. Much of which seems contradictory or incomplete. I am newly diagnosed T2
As in 1 week in and no meds yet, so been feeling ill for months, in lots of pain, been treated for this that and the other. It was only when I collapsed and was rushed to hospital that the idea arose that I 'might be diabetic'.
Went for blood test Saturday, and blood sugar was still at 12.5, can't get it down.... Am permanently hungry and feel totally exhausted and in abdominal pain... Sorry for rambling . Off to search the what I can eat areas . .thanks for being here x

Hi @Pollyanna, welcome to the forum 🙂 Very sorry to hear about your diagnosis When you say you have been feeling ill for months, in what way? Try not to panic over the current numbers, it will take time to get things under control and it is still very early stages for you. I'm reluctant to give you too much information because it can be overwhelming, and in the very early days there may be some difficulty in determining your type of diabetes. Whatever the case (and this should become clear from further tests) I would recommend reading Maggie Davey's letter. It's aimed at Type 2 but the advice about the kinds of food to eat and what to avoid is relevant to all types. 🙂

Do you have another appointment lined up?

 

[Pollyanna]

Thanks for the reply ..
It started in April when I stopped smoking.. I expected to feel unwell, can't smoke for 50 years and not expect to stop easily lol. I started to eat more as folk stopping do but I started losing weight, wasn't bothered at first.. But then an on going kidney problem had for years kicked in.. Sort of.. Went to doc she said kidney stones .. Meds do this that no better come back.. July... No better, no still losing weight still in pain.. Sent for ultrasound.. Results fine... More antibiotics more pain killers.. Doc now thinks ibs... Buscopan given... Blah blah and on we go... 3rd September was feeling grotty . Headache kidney area pain rib pain pain here there woozy drinking water by the gallon struggling to pee... Collapse in kitchen... I have highly trained dogs re my occupation... I live alone... My boyo fetched my phone, licked me awake.. I called 111 as couldn't get up off floor.. They took me to hospital... A and E was treated like an idiot.. Given pain killers sent home told to go docs monday.. On the form for doc.. said blood sugar 11.7 fasting level doc sent me for bloods last Saturday at 12.5... Have lost nearly 4 stone . Am seeing a gastrointestinal specialist Friday .. I don't eat sugar.. Hate sweet things of any type... Yes am a carb freak but have cut it right down but still struggling.. Especially after food.. Feel weird, nerves tingling and exploding, and face feels it being touched when it isn't... Am a canine nutritionist as well as a behaviourist so I know a far bit re food science but am struggling . Can sort dogs lol useless at sorting myself haha x

 

[Northerner]

Thanks for the reply ..
It started in April when I stopped smoking.. I expected to feel unwell, can't smoke for 50 years and not expect to stop easily lol. I started to eat more as folk stopping do but I started losing weight, wasn't bothered at first.. But then an on going kidney problem had for years kicked in.. Sort of.. Went to doc she said kidney stones .. Meds do this that no better come back.. July... No better, no still losing weight still in pain.. Sent for ultrasound.. Results fine... More antibiotics more pain killers.. Doc now thinks ibs... Buscopan given... Blah blah and on we go... 3rd September was feeling grotty . Headache kidney area pain rib pain pain here there woozy drinking water by the gallon struggling to pee... Collapse in kitchen... I have highly trained dogs re my occupation... I live alone... My boyo fetched my phone, licked me awake.. I called 111 as couldn't get up off floor.. They took me to hospital... A and E was treated like an idiot.. Given pain killers sent home told to go docs monday.. On the form for doc.. said blood sugar 11.7 fasting level doc sent me for bloods last Saturday at 12.5... Have lost nearly 4 stone . Am seeing a gastrointestinal specialist Friday .. I don't eat sugar.. Hate sweet things of any type... Yes am a carb freak but have cut it right down but still struggling.. Especially after food.. Feel weird, nerves tingling and exploding, and face feels it being touched when it isn't... Am a canine nutritionist as well as a behaviourist so I know a far bit re food science but am struggling . Can sort dogs lol useless at sorting myself haha x

Very sorry to hear all this Going through all this can elevate blood sugar levels regardless of what you are eating, although both those numbers would be enough to trigger a diagnosis of diabetes. Rapid weight loss is associated with Type 1 diabetes where your body is not producing enough insulin to process the glucose from carbs you are eating so it turns to burning fat and muscle tissue. You may have a slow-onset form of Type 1 diabetes, sometimes referred to as Type 1.5 or LADA (Latent Autoimmune Diabetes in Adulthood). If this is the case then it needs to be determined as quickly as possible as the usual medications given to treat Type 2 diabetes will not work and you may need insulin. There are tests available that can clarify the situation, so ask your GP if this possibility is being considered - many healthcare professionals in general practice rarely encounter Type 1/1.5/LADA since it is very uncommon in the general population, and a lot of our members have been misdiagnosed because of this leading to ineffectual treatment over many months, or even years I'm certainly not saying this is the case with you, but it is something to be considered. Should you start feeling very sick then seek help immediately - the dogs may be very aware that all is not right!

For now, reducing carbs will help, but it's very important to get your diagnosis clarified. Good luck, please let us know how you get on 🙂

 

[Pollyanna]

Thanks for the reply .. My dogs alert me to my kidney problem and are alert trained so yep... But just a quick question.. Should I not have been given a test kit.. Are they on prescription? Do I have to buy one?
I ate a ham toastie for breakfast.. 2 slices of home cooked ham on 2 slices of homemade ryebread... Just got back from a 3 mile walk with dogs and am giddy and shaking... This is were I get stuck... Am I shaking because hypo or hyper... Surely a kit would tell me so I know what to do now... Instead of passing out and back at a usless a and e... Sorry just so frustrated with it...

 

[Northerner]

Thanks for the reply .. My dogs alert me to my kidney problem and are alert trained so yep... But just a quick question.. Should I not have been given a test kit.. Are they on prescription? Do I have to buy one?
I ate a ham toastie for breakfast.. 2 slices of home cooked ham on 2 slices of homemade ryebread... Just got back from a 3 mile walk with dogs and am giddy and shaking... This is were I get stuck... Am I shaking because hypo or hyper... Surely a kit would tell me so I know what to do now... Instead of passing out and back at a usless a and e... Sorry just so frustrated with it...

Unfortunately, unless you are on certain types of medication for your diabetes you are highly unlikely to be given a blood glucose meter and a prescription for test strips. Certainly, it is highly useful to be able to associate how you are feeling with your actual blood glucose levels, including ruling out a high or low level being the cause, and it is extremely useful to know how your body tolerates different food choices and it would be worth funding your own at this stage if you can afford to - it's just that most GPs don't consider it cost-effective and overlook that there are additional benefits, as well as the ability to check for potential lows. This debate has raged for as long as I've been aware (I was diagnosed aged 49, just over 10 years ago). If you do decide to fund your own meter, then one of the cheapest options we have come across is the SD Codefree Meter which has test strips at around £8 for 50. Have a read of Testing on a budget to understand how to use your tests most efficiently and effectively 🙂

 

[Pollyanna]

Good lord... OK thanks.. Does make one wonder why NHS in such a mess... I did call my doctors... Asked if there was a diabetic clinic /nurse I could talk to as just wanted to ask a quick q... They do but......don't speak to patients by phone... Got to make an appointment... referral by doc... So... Can't ask if I can have a test kit unless I take an appointment space someone probably needs more.... Thought this was the age of technology lol...

 

[Pollyanna]

Nurse just called me... Testing kits not available unless been prescribed insulin .. Must admit am pretty shocked by that... Off for an afternoon nap... Will help me forget my hunger pangs lol thanks for the help x

 

[Northerner]

Nurse just called me... Testing kits not available unless been prescribed insulin .. Must admit am pretty shocked by that... Off for an afternoon nap... Will help me forget my hunger pangs lol thanks for the help x

You can snack on things like nuts or cheese, cold meats etc. without adversely affecting your blood sugar levels (as long as these don't cause problems with any other conditions you may be dealing with) 🙂

 

[Pollyanna]

OK... Still trying to educate myself somewhat .. Been a huge learning curve today .. The info on here is fantastic so heartfelt thanks...
Last question of the day... This 1.5 type.. Would there be keystones present in urine tests? As in type 1...?
Thanks

 

[stephknits]

Hi Pollyanna - type 1.5 is just slower onset type 1, so ketones can occur in either.

 

[Pollyanna]

Ah OK thanks... Asked because earlier answer suggested a maybe type 1.5 but tests have been negative for keytones

 

[Northerner]

Are any other investigations underway to discover the reason for the weight loss - thyroid problems, perhaps?

 

[Pollyanna]

I am due to see the gastroentrologist on Friday... Doctor had requested a fast track appointment so great it only took a week and he has also requested a ct scan and I am to have another blood test next monday

 

[Pollyanna]

They included thyroid on the last blood test along with amylase which was OK and now waiting results for the gluten allergy part of the test

 

[Pollyanna]

Doctor called with rest of blood tests... No gluten allergy, HbA1c76.... So said I was def type 2 diabetic but doesn't know why.. Have lost another 2kilo this week... In bad pain today... All around ribs and right side kidney area .. See gastro specialist tomorrow and doctor on Monday... He said I will probably be put on metformin
Feel very down and isolated... Thank heavens for dogs

 

[SB2015]

Hi Pollyanna

Sorry to hear about the difficulties that you are having. As Northerner has said the rapid weight loss and extreme tiredness are two of the indicators of T1 (or T1.5 if slow onset). I think that you need to ask again to be checked for T1. In addition to the weight loss (which in T1 is because your body without insulin is not able to use the glucose from the food you are eating) you could start to develop ketones.

What I have read through makes me think T1. It is common for GPs to assume that an adult with high BG must be T2. I have even seen flowcharts that are used by some GPS that start with Age>40? And then goes straight to T2. Keep asking.

 

[Pollyanna]

I did ask him... But he said no as no keystones and had obviously been developing it for quite a while so I don't know... Like I said its like wandering around in the mire.... I also asked re type 3 he said stuff that went over my head tbh, and was in serious pain... but basically that the accepted types was 1 and 2. .. Guess have to see what he says face to face on Monday... And he said I could have the test monitor but not the strips... Am so hungry am smelling food that isn't there

 

[TheClockworkDodo]

Hello Pollyanna and welcome 🙂 - but sorry to hear you're in so much pain and that your doctor isn't being very helpful/informative - I hope the gastro specialist is a bit more on the ball. I agree with Northerner and SB2015 - the weight loss could well mean you are type 1 rather than type 2, or it could mean you're type 2 and have something else as well, but weight loss is definitely a sign of type 1 not of type 2.

You wouldn't necessarily have ketones with type 1: when they test for ketones they are testing for a complication of type 1, not for type 1 itself. It's worth asking your doctor if you can have a GAD antibody test done (which is one of the tests for type 1) just to be sure, and if he says adults don't get type 1, you could tell him that recent research shows that around 40% of new diagnoses of type 1 are in adults. And if he says you can't have type 1 because you don't have ketones, you could point out that you could have type 1 without necessarily having ketoacidosis (and if so, you'd rather find out before you get ketoacidosis!).

Good luck, I hope you get some answers soon and some help with the pain. I'm glad you've at least got a test monitor - hope you are able to get some strips which aren't too expensive, because testing to find out how different foods effect you is really important, whichever type you have.

 

[Pollyanna]

Thank you xx
I hope I havnt made it seem my gp isn't being helpful as he is a very good doctor and probably the best I have ever had but it is hard to see him as he so in demand, and in the early stages of all this when I was treated for kidney stones he was not available .. All the conversations this week have been over the phone as he wants to wait until after the appointment at hospital today.. He is very approachable and does listen and I will talk to him on Monday.