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A bit confused

992947x

Well-Known Member
Messages
49
Type of diabetes
Type 3c
Treatment type
Insulin
I am a type 2 diabetic. Have been for 12ish years. My HBA1C for the last 10 years have been > 100. Very last one was 95, so moving in the right direction but a long way from where I want to be.

I have had 2 episodes of pancreatitis, one 9 years ago, one 6 years ago. 6 years ago I nearly died, but didn't.

Excluding this year, my blood sugars have ranged from 4 to 34+ (off the scale). Probably averaging around 20 during the day. I have been prescribed Lantus, Metformin, Nova Rapid. I had a c-peptide test a few months back, and my pancreas is producing insulin but not a lot. At some points I was taking over 100 units a day of insulin (mixture of both). I could never control my diabetes... until now.

I have damaged eyes and feet, I need three lots of laser eye surgery next month, and have been given gabepentin for my feet pain, although I don't take these because of the potential side effects.

I am desperate to come off my meds, and let my body regulate my functions, lose weight, and control my diabetes with diet alone. I ultimately believe I am insulin resistant, and insulin insufficient, both at the same time.

I am under the control of my local hospital, and they want me to up my carbs, (it is better to have more fibre in diet through wholegrains apparently, and need to drink milk etc) which will lead to more injections, but that is ok in their eyes. I therefore am reluctant to discuss my plans with them as their advice is wrong in lots of respects, I feel.

So at the end of March 2021, I turned a corner - I walk 5k every morning, around 6am, I am strict low carb, less than 20g per day, have cut out my vice: Pepsi Max, and am working really hard to get my sugars down. Whilst I exersize I listen to youtube, with people such as Dr Robert Lustig, Dr Zoe Harcombe, Dr Ken Berry, Dr Brett Scher and many more. I gleam more and more information, however mostly they talk about Type 2, not type 2 plus a damaged pancreas.

Taking around 20 units of lantus per day, I have got my blood sugars down to between 5 and 7, which is excellent for me and I wouldn't really ask for much better, however I am worried that the insullin will cause long term harm, and for the last week I have stopped taking all my meds. I believe that type 2 isnt high blood sugar, but high insullin, and I won't get my insillin down by injecting it!

Without medication over the last week my blood sugars are between 7mmol and 10mmol. I wake at about 8.5mmol and they vary throiugh the day. I am happy with these levels at the minute (compared to the last 10 years!!), but also know that I want them to be better too (but without the medication). I reckon that if I get some weight off (I am currently 15st, I used to be 19st before my first episode of pancreatitis), then my pancreas might produce the right amount of insulin, I might become less insullin resistant and having better metabolic health over the next few months might get my blood sugar down, and have better overall health.

I think if I continue to take medication, then I will be on it for life, and I really don't want that. My plan is to try and continue on low carb (keto < 20g), and work up my exersize, and eat real food, cut out processed etc for the next couple of months, and see where I am then. I think it is OK to have my bloody sugars slightly higher for a few months whilst I work on this, and hopefully I will see them coming down. I am testing my blood sugars 5 or 6 times a day, and my blood ketones a couple of times a week (usually between 2 and 4).

Does anyone else have any tips or thoughts they can add? Does anyone have any similar experiences of experimenting? Thanks for reading.
 
992947x said:
....however mostly they talk about Type 2, not type 2 plus a damaged pancreas.
Click to expand...

Hi 992947x, you have done a fantastic job in turning things around, well done! The bit that concerns me is your damaged pancreas though, if it's no longer producing enough insulin then no amount of other lifestyle changes will prevent you from having to use insulin. By stopping your usage, you could become VERY ill if this is the case and if your glucose levels start to rise along with having ketones of between 2 & 4 (or did you mean you test them between 2 and 4 times a week). I really think you should discuss it with your health providers. x
 
Another thing to consider is by taking insulin you are lowering the amount your pancreas needs to produce there by extending its life to some degree

On top of that you are getting better control so hopefully less risk of progressive diabetic damage

If your pancreas is damaged and not producing enough you may ultimately have to except the fact you need insulin

So long as you don’t fall into the trap that some do of thinking I can control my bg with insulin so I can eat everything I want

And as you continue to lose a little more weight and become fitter you may be able to lower/stop your insulin if/when it’s safe to do so
 

Thank you for taking the time to comment. My ketones are between 2 and 4, mostly between 3 and 3.5 - I test once a day at different times. I note that between 3 and 5 is seen as Starvation Ketones, and I am eating enough to be not starving, so maybe this might mean that my insulin isn't allowing glucose to be absorbed (and I have plenty in my blood, even though I am not eating much carbs), so maybe I do need some insulin. I have read that the pancreas can work better if I lose fat around my beta cells, or something to that effect, and I am hoping on that I guess. My docs won't tell me the extent of my reduction in insulin production, just that it is low. I would get a better gauge of where I was with everything if they would explain it more, but they won't even tell me the result (apart from it being low).
 

Thanks for your comments. That's two people that have said that, so I must listen I guess. With regards to becoming fitter / losing weight against reducing meds - it seems like a chicken / egg in my head. I am not sure which should come first. Stop the meds to make it easier for my body to become better, or try to get better whilst on the meds...

Thanks for the response, I really appreciate it.
 
You can have meds and reduce weight

But not having meds and expecting weight loss means your body will effectively starve so eat the body fat… yes it may be faster.. but it’s also a lot more dangerous
 
My understanding is that higher blood sugars can damage insulin production , so while I agree your levels are fantastic compared to your previous ones, if you can take a bit of insulin to achieve more normal blood sugars then you may find that your insulin production improves also and you can gradually reduce your insulin.

If you are insulin deficient then insulin is your best friend. And honestly, given your previous diabetic control and current complications, if you can use insulin to achieve normal levels of blood sugar control, why not do it?

As a T1, the ultimate in insulin deficient, it can be tempting to skip insulin to achieve weight loss, but it is a deeply unhealthy route to take. Let your insulin use be guided by your diet - less carbs equals less insulin.

Good luck and congrats on the bg reduction.
 
Hi 992947x I have same probs high bg and high cholesterol and use crazy amounts of insulin’s.can I ask what sort of pain or problems you had regarding your pancreas as I’ve been rushed to hospital twice in the last 2 weeks with a severe pain under my left rib cage had this for 2and half weeks still exactly the same now all they have done is take bloods and said it’s a muscle skeletal problem hurts when deep breathing when I stand up and when I’m sitting up right I’ve not injured myself in anyway so was wondering if that is any kind of symptom of pancreatitis as I looked back at one of the consultants notes to my doc says at risk of pancreatitis thx
 

Hey. I am sorry you have had such bad problems.

RE Pancreatitis, both times the pain was so bad that I had to have morphine on a drip for a week or so. When the events happened, initially I could only lay on the floor and could not get up before I was taken to hospital. My blood pressure went through the roof on both times, with readings around 250 / 150. I was in a bit of a daze both times to be honest, with the drugs and pain, but the raised amylase in my blood was what they initially used to suspect pancreatitis - then I had CT scans etc, which showed my pancreas was enlarged / enflamed.

In the lead up to both episodes, I had a dull ache in my back (ribcage height), and I couldn't stop eating and drinking - my body just craved it. I was probably having 10k calories a day! The pain seemed to circulate around the ribcage. Sometimes on the left, sometimes on the right, sometimes at the front or back.
 

I knew someone who had pancreatic cancer. He also said it was dull pain in the back which he dismissed as he’d just bought a new car and thought the seat was uncomfortable and causing it
 

Thanks for your reply.

I think the one thing that confuses me most is whether my body is doing something for a reason, or it is doing it because it is broken. I wonder if sometimes the GP etc doesn't know best, and the body does, and the body is trying to do something to make something better, and then I take meds to counteract it. IE is my blood pressure high because my body is trying to acheive an outcome, is my insulin production low, as my body is trying to achieve something.

However, what you say does make sense too, and I really appreciate you taking the time to reply, and I am taking on board what you are saying as well .
 
searley said:
I knew someone who had pancreatic cancer. He also said it was dull pain in the back which he dismissed as he’d just bought a new car and thought the seat was uncomfortable and causing it
Click to expand...

I understand that pancreatic cancer is one of the worst you can get (or do they say that about all cancers...). If I remember right on my second episode (about six years ago), they did wonder about cancer at the time, and did some tests which luckily for me were ok. I do get the occassional pain every now and again (the dull ache), so I will definitely take on board what you have said.
 
Thx for the info they gave me morphine I think it only masks the pain I’m in and even feel it with having morphine I think I need to ask the doctors to give me a scan or something as can’t put up with this my initial blood pressure was vey high as well and blood sugars not really been below 20 for the last couple of months so looking at your symptoms looks same thx again
 
Hi to confirm I didn’t say this to scare anyone

Just to reinforce your comment that pancreatic pain starts in the back and can be dismissed as backache due to something you’ve done
 
Yes got pain under left shoulder blade then moves to the side then front don’t no what blood tests they carried out but Sunday they took 4xlots of 3 viles through out the day and said my blood keeps on heamotizing due to my trigs being at over 60 but still discharged me late Sunday night woke up at 3am in agony again bit of a nightmare
 

Good luck. I hope you get it sorted. The amylase test was the simple blood test that got the docs on the right track for me.
 
Brettskee said:
Not sure what amylase is
Click to expand...

An amylase (/ˈæmɪleɪz/) is an enzyme that catalyses the hydrolysis of starch (Latin amylum) into sugars. Amylase is present in the saliva of humans and some other mammals, where it begins the chemical process of digestion.

What does it mean when your amylase is high?
High amylase levels are typically a sign of acute or chronic pancreatitis. Acute pancreatitis can cause amylase levels to become four to six times higher than the upper limit of the normal range. Other conditions may cause amylase levels to increase, including: pancreatic cancer
 
I'm probably going to get flack for this, as I'm a T2, and all I know of T3c, which you are, comes from our late cat. (Yeah. I know. He lived to be a ripe old age though, and it was cancer that did him in eventually. But I know when someone brings their pet into it they basically lose all credibility. All the same... Here it is.). Night had pancreatitis, and the way the vet explained it made sense. You know how scar tissue forms after pneumonia for instance? I had it when I was a kid, and you can still see white areas on my x-rays. The same happens after pancreatitis. The islets of Langerhans that make insulin, in Night's case and likely yours too, had mainly turned to scar tissue. And as scar tissue doesn't so anything besides just be... Rather than make insulin, it did nothing, and Night required Lantus to stay alive. There just wasn't much of anything there any more to make insulin. The pancreas was present, but the islets were almost entirely destroyed. So it's not so much a question of what your body is telling you. It's more a matter of something being damaged that cannot be fixed, so you have to add a little insulin in from the outside. No failure there, okay? That said, since you already were a T2 before all this happened and it is very likely you were insensitive to the insulin you did make, you're doing the right thing by changing your diet around. If you fix your sensitivity, you won't need insane amounts of units to get your blood sugars down.

Also, you mention your blood pressure... If you change the way you eat rather drastically, it'll also mean you ingest less salt, so it could well be that your blood pressure'll drop a tad more than you're used to. If the room gets dark or you see stars when you get up too fast, it's time to re-evaluate your blood pressure meds, as you might need to reduce those.

Good luck!
Jo
 
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