What am I?

Hi,
Forum rules dictate, we can't diagnose you.
But we can help and give advice.
What AP, do you refer to?
I can only say, that if you have tests while hospitalised, then your question shout 3c, should have been answered by your GP.
I'm not on insulin or taking diabetic meds, but I do have a dietary restrictions.
It does sound as if your doctors have not fully explained your understanding of the diagnosis and the treatment.
The majority on here will agree with that.

I do believe, that finding out about what your conditions, the meds, the treatment needs to be answered and if I was you, I would start finding out about what faces you, with your issues.

I had to.

Best wishes.

Hi @Mexxan , i can’t answer your questions about insulin as I don’t use it or your type of diabetes as we can’t diagnose here. However just to clarify is the AP you refer to Acute Pancreatitis?
With regard to the insertion of a CGM, no it doesn’t hurt me at all during insertion.

I can't answer your main question, but I do use Libra sensors. Libras come in an automatic insertion devise. Basicly, once I have prepared the kit and my skin I press the insertion devise fermly against my arm and a sprung mechanism pushes it into my arm. It's isn't normaly painful, but sometimes I'm unlucky and it will hurt for a while. Personaly, I find itchyness a bigger issue. Cleaning the skin very thoughly before insertion seems to reduce this, at least for me.
The other big issue I have with them is them coming off, particularly in hot weather due to sweating. The company will suply replacements when this happens, but it can be quite fustrating.

I am a type 3c, but not diagnosed as such when I became one a decade + ago. I had a routine procedure to unblock my bile duct go very wrong and within hours ended up with acute pancreatitis and septic shock in intensive care. After release, about a week later, I still felt ill and GP twice sent me to A&E as he thought I was in ketoacidosis, only on the second did they keep me in , but still never got to see diabetic team….after another complaint to Gp got to see someone, just a nurse who taught me how to use a Humulin insulin pen. During the Covid hiatus Gp team doing nothing with diabetics despite obvious changes in HbA1c, and me querying its accuracy ( ie an average so not showing hypo or hyper glaecemia events). However medics. I was seeing in relation to continued Long Covid were using the phrase ‘type 3 c diabetes’ in their letters to my GP. Eventually I got to see the diabetic team as part of a course, and they were convinced my pancreas was no longer creating insulin(after seeing the results of 2 weeks Freestyle Libre sensor), and were happily calling me type 3c too and changed the insulins to Toujeo and Fiasp instead. What I am aware of is the possibility of being compromised in pancreatic enzymes too, but I do have hypothyroidism which produced poor gut motility and no gallbladder which also causes digestion problems…so I have never brought digestive problems to my GP as unlike my Long Covid is does not effect my quality of life as badly. With hindsight I presume someone in the diabetic team should have contacted the gastroenterologists a decade ago to keep an eye on me for gut issues with type 3c, and possible use of creon etc. My Gp has absolutely nothing to do with my diabetes as a practice nurse is the link…do you have one you could discuss either going on a diabetes course re use of insulin, and attendant Freestyle Libre sensor, or can the nurse recommend other insulins? Do you stick to a low/ lowish carb diet?

And forgot to add the Freestyle Libre type sensors are a God send to see what your ‘BG’ is actually doing after consuming specific foods / drinks, and ight give you the incentive you need to become lower carb. Applying the sensor is not really painful, it’s not a needle that goes into your upper arm but a stiff filament….lokks less intimidating than a needle, the shocking thing of applying it is the force to insert it but you soon get used to the ‘jump’, and it’s hidden away unlike the insulin pen needles. When I became insulin dependent for the first year my husband had to inject the once daily Humulin into my bum, as I too was a wimp, now even up to 6 injections a day no bother…it’s all just practice.

Lamont D said:

Hi,
Forum rules dictate, we can't diagnose you.
But we can help and give advice.
What AP, do you refer to?
I can only say, that if you have tests while hospitalised, then your question shout 3c, should have been answered by your GP.
I'm not on insulin or taking diabetic meds, but I do have a dietary restrictions.
It does sound as if your doctors have not fully explained your understanding of the diagnosis and the treatment.
The majority on here will agree with that.

I do believe, that finding out about what your conditions, the meds, the treatment needs to be answered and if I was you, I would start finding out about what faces you, with your issues.

I had to.

Best wishes.

Click to expand...

How do you diagnose T3? My husband was diagnosed T2, but he was losing weight. Stopping weight loss is still a challenge! I don’t understand how it can be T2. Plus high morning readings!

KennyA said:

Hi and welcome.

Type 3c diabetes is usually diagnosed because of damage to the pancreas resulting in it stopping producing (enough) insulin. That could be because of trauma, or another illness. It usually means needing to take insulin to live. Of course, on the forum we can't and won't try to diagnose anything.

Losing weight while T2 is possible, although given the reported experience of people on here it seems to be less likely than gaining weight. Is he low-carbing? Are there other factors that might be relevant? These would really need to be discussed with his doctor.

And high morning readings are fairly common with T2 - it's due to the action of your liver in providing a glucose supply to get you going early on. But when you say "high" - what exactly do you mean? 6.0mmol/l is "high" for some, but wouldn't be for others.

Click to expand...

He lost 16 kilos in 3 years. The morning readings are 6.3-7.8 in general. Last months they creeped up and often (not always!) are over 8.0. I am trying to keep him as low carb as I can. He struggles. Obviously all grains and breads are gone. I myself is much lower in carbs but he struggles.
We want to obtain CGM. Asking for more tests was difficult-doctor is reluctant.

Natalia D said:

How do you diagnose T3? My husband was diagnosed T2, but he was losing weight. Stopping weight loss is still a challenge! I don’t understand how it can be T2. Plus high morning readings!

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Do you mean Type 3 as this normally relates to Alzheimer’s, or type 3c…if later then my experience of cause and diagnosis see above. I did loose 3 stones in 5 months without intention after sepsis/ acute pancreatitis but I believe that is due to pancreatic damage/ compromised digestive hormones and resultant vit.problems not the type 3c. Get your husband on a diabetes course ( to use insulin perhaps?) where he ( and you) will be with diabetic nurses for 3 separate days and they will pick up anomalies…my GP does nothing with diabetes leaving it all to diabetic nurses.

Cumbrianjudith said:

Do you mean Type 3 as this normally relates to Alzheimer’s, or type 3c…if later then my experience of cause and diagnosis see above. I did loose 3 stones in 5 months without intention after sepsis/ acute pancreatitis but I believe that is due to pancreatic damage/ compromised digestive hormones and resultant vit.problems not the type 3c. Get your husband on a diabetes course ( to use insulin perhaps?) where he ( and you) will be with diabetic nurses for 3 separate days and they will pick up anomalies…my GP does nothing with diabetes leaving it all to diabetic nurses.

Click to expand...

Yes, it’s exactly the same here. Diabetic nurse is very nice, but really none of them wants to explain it clearly. Thank you very much for your advice. I will ask about diabetes course for him! And me. I read a researched a lot, but still I am not keen to go as far as biology degree

KennyA said:

I'd guess a lot of T2s here would recognise those levels. I lost 40kg in about four years, but I was trying to and I had it to lose.

Misdiagnosis is possible and does happen (more than it should) but one way to establish that is to get a C-peptide test from your doctor. Most forum members that this has happened to seem to have been originally diagnosed as T2, before being established as T1. The route to finding out is through your doctor.

Your husband can obtain a free trial of a CGM direct from Abbott (the manufacturers) simply by asking. The NHS in the UK won't pay for CGMs for those of us with T2, but people pay for their own.

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Thank you very much! I will ask c-peptide test! For sure. As for CGM I did not know about free trial. I will go for that. In the end of the day, we are okay to pay for it. Maybe 4 -6 weeks will give plenty of information. Thank you!

Melgar said:

I have something going on with my gall bladder / pancreas @Natalia D. I’ve had three episodes of, what I can only describe as really really bad upper abdominal pain going through to my back. Too tender to even touch my abdomen and a very high fever and high blood sugars. The bad Pain last 24 hours, then the full aching throbbing pain in the middle of my abdomen under my ribs lasted about 3 weeks. All settled down a bit, but I cannot eat fats including eggs. I feel sick to my stomach if my meals contain any fats. I had an Ultra sound, no gall stones. My c-Peptides are on the low end of normal. I shall have another C -Peptide test in the New Year. All under investigation.

My raised blood sugars started after I had sepsis @Cumbrianjudith. Unlike you, my sepsis started with a bout of pneumonia which got progressively worse until I ended up in the Resus unit at Royal Stoke University Hospital. I nearly pegged it. A month or two later I was dealing with wonky blood sugars. Of course, T2 is the diagnosis they give you even though my diabetes bares no resemblance to T2 other than raised blood sugars.

What makes you think it could be T3c @Natalia D ? His weight loss? I would push for further tests as has already been mentioned here.

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Yes my original pain before thought to have anything to do with bile duct/ gallbladder was very bad pain nder ribs…given antibiotics for a week which did nothing…I was becoming jaundiced with liver function tests off, and ultrasound showed blocked bile duct. Routine day procedure to unblock just went drastically wrong, and pancreas f***ed! In some ways lucky it was bad enough on ultra sound to be seen, but just wish hadn’t made me type 3c quickly….

Thanks for the info. Re Libre - I too was needle phobic until a while after insulin commenced July 2024. I am now much better about them (injecting 6+ times per day). The CGM was recommended for reasons below. I don’t find insertion painful at all. The mechanics of it are quite genius! Easier than insulin pens. Occasionally it feels a bit sore for a few days afterwards but it is not difficult and is very manageable.

I really recommend a CGM if you don’t have good control, even though not subsidised for T2 here in Australia as well. Even a few weeks is useful. I got a free one through the clinic then an introductory deal with the company. I am paying for it now as I feel more confident, eg watching BGL increase during and after a hypo. It definitely reduces my anxiety about potentially fainting and being unable to seek help. Hopefully I gain better control and go back to finger pricking, at least for some times.

I’m new to hypos and it has been invaluable in sounding an alarm I set at 4.2 to try to ward one off - and it is loud enough to wake me.

I’ve been diagnosed T2 but 3C is often mentioned. The diabetes clinic refer to me having ‘brittle’ diabetes, in that it is difficult to control. The CGM helps me monitor both highs and lows, and it is pretty cool to watch the effect of exercise on BGL - and also correct if heading too low.

I also have liver complications. Lost a lot of weight over a year before moving to slow and fast acing insulin - no real explanation. I’d like to understand/pursue more on 3C as I find very few doctors (eg emergency) are aware of it. I think next blood tests include c-peptide which I didn’t know could be a 3C marker.

During my last hospital admission, a young doctor was remarking to his colleagues about how ‘beautiful’ CGMs are, including the ability to monitor patients overseas. It was pretty funny but he is correct. Many doctors and nurses hadn’t seen it before, but they started to really like not having to do the finger pricks!

I know we can’t have everything that helps us subsidised. I know there is some lobbying going on in Aus to subsidise CGMs for type 2 diabetics who have poor control (in my case when doing everything they tell me). Subsidy for T1 is 50% so it is still expensive. But as my GP said, it would have already paid for itself in terms of not presenting to ED. I am joining the lobbying effort.

Cheers.

There's a very weird pattern amongst diabetes doctors when it comes to diagnosing patients with Type 3c. From the symptoms and cause of my diabetes, I should be classed as a Type 3c diabetic, since the reason I have diabetes in the first place is because my chronic AP (diagnosed in 2021) caused my pancreas to stop producing insulin (taking Lantus basal and NovoRapid bolus) and later on enzymes (taking creon whenever it's in stock at the pharmacy). However, my diabetes team always say that I'm a Type 1 diabetic because I have been using insulin since day 1 (diagnosed diabetic in 2023), but on paper they used to write Type 2 diabetes mellitus and when I asked why, they told me it's because the diabetes is caused by an existing illness (chronic AP), but now they always mention that it's technically type 1 on all my reports, since it kept confusing doctors in other departments. I only came across the term Type 3c diabetes on social media, then I googled it and found the full details on the official Diabetes UK website that my entire NHS diabetes teams gives me leaflets on topics from. I do have an appointment with my diabetes doctor this week, so I'm going to mention type 3c to him and see what he says considering I match the description online to a t.