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Wow..

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Rosiecarmel

Rosiecarmel

Well-Known Member
Relationship to Diabetes
Type 1.5 LADA
Ate my final meal of chilli about two hours ago. did my BS just now... 21.6! Going to demand a doctors appointment tomorrow, will be saying it's an emergency as clearly my tablets aren't working. I'm worried that it could possibly be type 1.5 or even type 1? I am very overweight and t2 does run in my family Which I think is why the nurse immediately went for T2 although my levels don't drop below 11ish, can you be T1 without hypos? Must admit I don't really know much about any of this! How do you all manage to lower your BS (without insulin ha)

My surgery is going to hate me. I took a list into the nurse before and I'm taking a list of possible diabetes/related ailments (blurry vision and hearing loss) amongst other questions to my GP! They'll ban me from the surgery soon 🙄
 
I hope that your appointment goes well and you get the right treatment. Type 1s have hypos because of the crazy balance between food, exercise, stress and a million other things🙂 If a Type 1 didnt inject insulin they wouldn't hypo....each person is individual but if I don't have my basal and bolus insulins my BG levels rapidly increase, as I've found out when I've had problems with my insulin pump but I haven't eaten anything.
 
Rosiecarmel said:
Ate my final meal of chilli about two hours ago. did my BS just now... 21.6! Going to demand a doctors appointment tomorrow, will be saying it's an emergency as clearly my tablets aren't working. I'm worried that it could possibly be type 1.5 or even type 1? I am very overweight and t2 does run in my family Which I think is why the nurse immediately went for T2 although my levels don't drop below 11ish, can you be T1 without hypos? Must admit I don't really know much about any of this! How do you all manage to lower your BS (without insulin ha)

My surgery is going to hate me. I took a list into the nurse before and I'm taking a list of possible diabetes/related ailments (blurry vision and hearing loss) amongst other questions to my GP! They'll ban me from the surgery soon 🙄
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It's certainly looking like the metformin is having zero effect, which could be an indication that you are misdiagnosed. As AJLang says, Type 1s hypo when they have injected too much insulin - in a non-diabetic the insulin gets 'switched off' by your pancreas when your levels go above a certain point, but when you've injected it there's no way to 'uninject it' so you have to eat something to raise your levels if they drop low.

You certainly need different medication, and (in my non-professional opinion!) it would make sense to do the tests to see if you are producing insulin and in what amounts (they do this with something called a C-peptide test - when insulin is created by the beta cells of the pancreas it is originally something called protoinsulin, this then splits into insulin and C-peptide, so by measuring the amount of C-peptide they can tell how much insulin you are producing - artificial insulins don't have C-peptide).

There is a medication that some Type2s are given if the metformin doesn't work on its own called gliclizide. This works by stimulating your pancreas to produce more insulin, but if you are T1.5 or T1 then your pancreas can't respond so levels remain high. They might try you on this first, but I would definitely push for the tests.

Good luck and don't let them bully you, this is your health and you need to stand your ground! 🙂
 
Rosiecarmel said:
How do you all manage to lower your BS (without insulin ha)
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My understanding is that the best I got you can do while you are waiting is to stop eating (or severely limit) any of the things that raise BG. So bread, cereals, grains, anything made with flour, rice, pasta, fruit, fruit juice, sugars, root veg etc etc.

Adding at least 30 mins of activity/exercise into your day really helps too I think.

In the meantime you can increase consumption of leafy green veg, eggs, proteins and fats all of which will have very little impact on BG

Hope you get some clarity and good support soon.
 
Rosie, don't go to the surgery with the attitude that 'they'll hate me'. You have right on your side for appropriate treatment and as a nurse you'll find yourself fighting for your patients in the future. Now is the time to fight for YOU to receive the right response to your health issues because your levels are remaining too high.

You're not a nuisance to them and you need the tests the others mention. I really hope they can sort this for you. As a type 2 I'd be knocking the doctor's door down by now! And if you don't get it you are entitled to a second opinion. Good luck.
 
That does sound too high for t2 on Metformin - I'd ask for GAD antibody test as well as C-Peptide, and if they are reluctant to organise them, ask them to explain why, and if necessary do as Amigo said and ask for a second opinion.

Add dried fruit, honey, jam, and any sugary drinks to the list of things to avoid!

Nuts are great to snack on if you want to avoid carbs.

And the best way to lower your BGL without insulin (apart from exercise) is to drink water, in large quantities - three or four mugs full has the same effect on me as one unit of insulin, ie it takes my BGL down from (say) 10 to 5. It may not have quite such an effect if you're not as hypersensitive to everything as I am, but it will certainly help. Drink at least 2 litres a day, more if you can. It will make you less hungry too so will help with cutting down on carbs.
 
Thanks everyone! I've been under the assumption I couldn't be type 1 due to my levels being high. Think I need to do more reading on T1. At least I know it's a possibility? Think I will ask about that C peptide test. Is that the same as the anti body blood test?

Amigo said:
Rosie, don't go to the surgery with the attitude that 'they'll hate me'. You have right on your side for appropriate treatment and as a nurse you'll find yourself fighting for your patients in the future. Now is the time to fight for YOU to receive the right response to your health issues because your levels are remaining too high.

You're not a nuisance to them and you need the tests the others mention. I really hope they can sort this for you. As a type 2 I'd be knocking the doctor's door down by now! And if you don't get it you are entitled to a second opinion. Good luck.
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You're quite right!! On placement, I find it very easy to fight for my patients rights and correct treatment (especially if they lack capacity). I've challenged doctors before on behalf of patients and I'm not even qualified yet!! however I'm rubbish at being a patient! I do that sort of thing where the doctor tells me what's wrong and I just go "okay thank you", take the prescription and walk away. Now things are going to change I think - my health is at risk here if I keep getting ignored and I'm not willing to wait until it's too late!!
 
TheClockworkDodo said:
That does sound too high for t2 on Metformin - I'd ask for GAD antibody test as well as C-Peptide, and if they are reluctant to organise them, ask them to explain why, and if necessary do as Amigo said and ask for a second opinion..
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Oh so these tests are different? Nobody has explained any blood tests to me at my surgery so tomorrow that's another thing to add to my list to give to the GP!
 
Rosie - When you had your chilli; did you have rice or bread with it? Many T2s find rice is difficult for them to eat.
 
Rosiecarmel said:
Thanks everyone! I've been under the assumption I couldn't be type 1 due to my levels being high. Think I need to do more reading on T1. At least I know it's a possibility?
Click to expand...

I think they are more likely to be high if you're a type 1 and not on insulin. Mine were 20 when I was rushed to hospital with DKA, but they'd obviously been high for some time before that as my HbA1c was 103.

Yes, different tests. My C-Peptide test was (just about) in the normal range, but my GAD antibodies test was greater than 2000, and the normal range is 0-5!
 
Rosiecarmel said:
My surgery is going to hate me. I took a list into the nurse before and I'm taking a list of possible diabetes/related ailments (blurry vision and hearing loss) amongst other questions to my GP! They'll ban me from the surgery soon 🙄
Click to expand...

Yes, I'm still having problems with "making a fuss". Don't be so English. It's our health. You've got my backing.
 
Nuts do contain some carb and are a nightmare for me (we're all different!) - I go high and stay high. Boo hoo, cos I love peanuts, etc.

Good luck getting answers, Rosie.
 
I think those other people (non diabetics) aren't supposed to eat many nuts either.
 
Well that didn't go too badly! Said I need my ears syringed by the nurse (she said high BS can cause more wax which other people have said on here too!) then she's going to have a proper look and refer me to an ENT doctor which is handy as its in the same health centre as my doctors. I've automatically been referred for a retina screening but it could be ages so I need to ring my opticians and get a full screening and ask for the results to be sent to my GP straight away. If there's anything worrying my doctor will flag it up as high priority at the hospital so I get an eye check sooner.

She's also said that apparently if you have high blood test results you should probably be on more than 1 medication anyway so she wants to see me again 2 weeks today to do fasting blood tests (and will also check cholesterol!) and discuss other medication (was going to do it today but I'd had porridge!)

So basically by then I should hopefully have had my eye test and she's seen the results, had my ears done so she can check them and then discuss meds! She's booked me a double appointment so I'm assuming it's going to be a long one!
 
Sounds good Rosie, on the whole, but I do think that another two week wait is unnecessary - why the delay? She could do the fasting tests tomorrow, or at least in the next couple of days, it's not dependent on the other things you are having done. Did you raise the question of possibly being Type 1?
 
I'm assuming the two week delay was so that I have enough time to get an eye test and my ears done so she can sort it all out in one appointment? I don't really know - she didn't say why!

Yes and she said it's unlikely but could be possible as the metformin usually is fantastic for T2. She was reluctant to organise the blood tests for T1 until I've tried another medication for T2. She pretty much said that if another medication doesn't work then she'll definitely test for T1 before trying anything else
 
Rosiecarmel said:
I'm assuming the two week delay was so that I have enough time to get an eye test and my ears done so she can sort it all out in one appointment? I don't really know - she didn't say why!

Yes and she said it's unlikely but could be possible as the metformin usually is fantastic for T2. She was reluctant to organise the blood tests for T1 until I've tried another medication for T2. She pretty much said that if another medication doesn't work then she'll definitely test for T1 before trying anything else
Click to expand...

Well, it's progress, and at least you are on the right track for either getting medication that works well for you, or the tests if not 🙂
 
That sounds quite an unusual approach to me. A blood sugar reading of 21.6 after eating is incredibly high, even for a diabetic. As Alan says, a fasting blood could be done tomorrow, and this is your health, not a science experiment. It certainly appears that the metformin isn't working. I don't think you need to push for the "definitive" tests necessarily. It's clear that you either need a lot more metformin or to be placed on some form of insulin regime (regardless of what type you are).

In terms of carbs and reducing your blood sugar, the obvious answer is to cut out as many carbs as you can and to try to follow the low GI diet. That will reduce the spikes in your blood sugar and will lower your levels naturally. Whether that will bring them down permanently to good levels then depends on whether your body is producing any insulin or not.
 
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