Diagnosed, but type not confirmed. Help!

[MarinaDE]

Hallo everybody. I need some advice!

I live in Europe, but am in the UK until the end of August. I've been feeling sick since May. Like bankruptcy, my health decline was gradual, and then rapid. My weight has dropped off, and in the last week I went from peeing more than normal to waking up three times a night to pee. I then spent the last weeks googling symptoms and self diagnosing. This past weekend, I felt so crappy that I booked to see a private GP in London and get a blood test, the results of which came back on Monday afternoon.

Glucose is 18.7 mmol/L and Haemoglobin A1c (IFCC) is 124 mmol/mol

The GP thinks it's Type 3c, because I'm not overweight, I have normal blood pressure and I am mostly vegetarian. Just over a decade ago I had widespread cancer in my abdomen, including in my pancreas, and had part of my pancreas resected.

She's put me on Metformin as a stop-gap (first tablet tonight!) and said I needed to see an endocrinologist and have a CT to check what's going on with the pancreas, ASAP. I've checked with my travel insurance and they will cover all of this, given how bad my blood sugars are.

So I guess my question for those of you with 3c is: how were you diagnosed? What's the process? And what happens when it's confirmed? (It's still theoretically possible I'm actually Type 2 or late onset Type 1/1.5.)

I'm trying to be OK with all of this, but I'm actually devastated, especially as this could be a sign that I have cancer in my pancreas again. It's probably not, but it might be. And at least I'm lucky enough that my travel insurance will cover all of this, so I don't have to wait weeks until I get seen by an endocrinologist.

I would love to hear any and all stories of 3c.

 

[Robin]

Hallo everybody. I need some advice!

I live in Europe, but am in the UK until the end of August. I've been feeling sick since May. Like bankruptcy, my health decline was gradual, and then rapid. My weight has dropped off, and in the last week I went from peeing more than normal to waking up three times a night to pee. I then spent the last weeks googling symptoms and self diagnosing. This past weekend, I felt so crappy that I booked to see a private GP in London and get a blood test, the results of which came back on Monday afternoon.

Glucose is 18.7 mmol/L and Haemoglobin A1c (IFCC) is 124 mmol/mol

The GP thinks it's Type 3c, because I'm not overweight, I have normal blood pressure and I am mostly vegetarian. Just over a decade ago I had widespread cancer in my abdomen, including in my pancreas, and had part of my pancreas resected.

She's put me on Metformin as a stop-gap (first tablet tonight!) and said I needed to see an endocrinologist and have a CT to check what's going on with the pancreas, ASAP. I've checked with my travel insurance and they will cover all of this, given how bad my blood sugars are.

So I guess my question for those of you with 3c is: how were you diagnosed? What's the process? And what happens when it's confirmed? (It's still theoretically possible I'm actually Type 2 or late onset Type 1/1.5.)

I'm trying to be OK with all of this, but I'm actually devastated, especially as this could be a sign that I have cancer in my pancreas again. It's probably not, but it might be. And at least I'm lucky enough that my travel insurance will cover all of this, so I don't have to wait weeks until I get seen by an endocrinologist.

I would love to hear any and all stories of 3c.

Welcome to the forum, but sorry you had to be here. You are having a worrying time.
I’ll tag some of our regular Type 3c posters, and hope they will see this post and respond, @eggyg . @Proud to be erratic are two that spring to mind, who both had surgery at the start of their Diabetes journey.

 

[eggyg]

Welcome.
I too had a pancreatic resection, body and tail removed. I became diabetic after three years, I wasn’t ill but I’d been told to check my blood glucose regularly. One day my fasting glucose was higher than it should, think it was 9. I had an appointment and was diagnosed Type 2, this was 13 years ago and I’m not sure anyone knew about Type 3c. I was put on Metformin and told to lose weight, I wasn’t particularly overweight, and exercise and eat pasta! I know, ridiculous when I think back. Fast forward another four years and the Metformin wasn’t doing its job so I was went onto insulin. Did my own research and with the help of this forum realised I wasn’t on the correct insulin regime, went back to see my diabetes nurse and that was sorted. After much cajoling and begging I was “ allowed” to go on a course to help me understand my condition a bit more ( I was still classed as Type 2). The specialist diabetes nurse who ran the course was wonderful and re diagnosed me as Type 3c. This has meant I can access the tech I need now, and perhaps in the future, to help me manage my condition. It’s not been an easy ride, I’ve never seen an endocrinologist or had an appointment at a diabetes clinic with a doctor. The doctor you saw is correct you are Type 3c, not Type 2 or 1 or 1.5. Ours isn’t an autoimmune condition like Type 1 but we should get the same treatment. I’m not a medical professional but Metformin isn’t going to help with your high numbers I’m afraid. It must be rather difficult not being in your own country at the minute, I hope there’s something that can be done in the interim until you can see someone back home. It’s a worrying time but try not to worry your cancer has come back I would imagine any remaining pancreas, like mine, is quite probably dead now, hence why you’re not producing any insulin.
One more thing, has Creon been mentioned? This is a digestive enzyme as without a fully working pancreas we can’t produce these for ourselves and quite often we can’t process our food and it, not to put too fine a point on it, just goes right through us! This leads to malabsorption and rapid weight loss. Best wishes. Elaine.

 

[Docb]

Hi @MarinaDE. I do not want to be alarmist but if you continue to feel unwell, and especially if you get worse, then head to A&E for assessment.

From what you have said, it sounds like for some reason or other what is left of your pancreas is struggling to cope. If so, then you need to get on the right treatment as soon as possible and A&E might be the best way to get it, unless you can get an endocrinologist appointment quickly.

 

[Admiral Benbow]

Forgive me for misunderstanding, but isn't 18.8 mmol like 336.59 mg/Dl and an A1C of 124mmol 2286 mg/Dl? Did you mean 12.4 A1C which would be 223 mg/Dl?

 

[silentsquirrel]

Forgive me for misunderstanding, but isn't 18.8 mmol like 336.59 mg/Dl and an A1C of 124mmol 2286 mg/Dl? Did you mean 12.4 A1C which would be 223 mg/Dl?

Yes and NO. The 18.8 is mmol/L but the HbA1c is in mmol/mol, so don't multiply that by 18 to convert to US units.
124 mmol/mol is a high HbA1c but not impossible.

It helps if you use the correct units, not abbreviate them both to mmol.

 

[MarinaDE]

Thank you so much everyone. @eggyg in particular, thank you for taking the time to tell me your story. I have woken up feeling so ill that I am scared to be on holiday by myself. I'm house minding a friend's house and I am imagining what happens if she comes back and finds me half eaten by the cat. @Docb I am going to take your advice and see if I can get treated immediately.

Re: the numbers. I just cut and pasted what's on the blood report. I didn't convert anything.

I'm going to ring the GP I saw in Harley Street and see if she can arrange an urgent appointment with an endocrinologist. What I learned this week is that if you can pay out of pocket, you can get anything instantly. Thank God my travel insurance said they would cover it, as otherwise I would wait six weeks from now just to see my GP at home. I just feel so sick right now that doing anything seems daunting.

I'm still secretly hoping this is one of the normal types of diabetes, as they are easier to manage.

 

[Docb]

@MarinaDE - if you are really unwell and are on your own, then don't wait for your private GP, go to the nearest Hospital Accident and Emergency department. If your blood glucose levels are climbing the risk of DKA (look it up) is increasing and you want to avoid that. The A&E department should do all that is necessary to get you sorted out. The NHS is under pressure but it is still very good at dealing with emergencies when it is warranted. There may be some admin to do afterwards if you are not a UK resident.

It does not matter what sort of diabetes you have, from what you have said you need to get appropriate treatment quickly.

 

[eggyg]

Thank you so much everyone. @eggyg in particular, thank you for taking the time to tell me your story. I have woken up feeling so ill that I am scared to be on holiday by myself. I'm house minding a friend's house and I am imagining what happens if she comes back and finds me half eaten by the cat. @Docb I am going to take your advice and see if I can get treated immediately.

Re: the numbers. I just cut and pasted what's on the blood report. I didn't convert anything.

I'm going to ring the GP I saw in Harley Street and see if she can arrange an urgent appointment with an endocrinologist. What I learned this week is that if you can pay out of pocket, you can get anything instantly. Thank God my travel insurance said they would cover it, as otherwise I would wait six weeks from now just to see my GP at home. I just feel so sick right now that doing anything seems daunting.

I'm still secretly hoping this is one of the normal types of diabetes, as they are easier to manage.

I hope you can get seen sooner rather than later. I don’t suppose you have any way of testing your blood glucose do you? It may be your BGs are high and that’s why you feel unwell. I’m worried about ketones. Perhaps you should present yourself at A&E if your Harley Street doctor can’t get you an emergency appointment. Let us know how things go.

 

[everydayupsanddowns]

Yikes! What a nightmare for you @MarinaDE - especially so far away from home.

I think @Docb is giving you great advice - now isn’t the time to wait for appointments. With sustained high glucose levels and potentially little home-grown insulin production you are at increasing risk of DKA and need to be seen at A&E as a matter of urgency.

 

[MarinaDE]

I am going to tidy up here and go to A&E. I must admit, I always worry I am going to be treated like a hypochondriac.

It's hard to describe what I mean by 'unwell', but it's a sense like inflammation is surging throughout my body. My heart is pounding, and I have a headache and blurry vision. I feel sick, but that could be the Metformin.

Thank you so much everybody for your advice. Being told by you all to go to A&E is like having a permission note, if that makes sense.

 

[Docb]

Phew, good to see that you are going to A&E - the results from the tests you have had done combined with the headaches and blurry vision should be enough for them to take you seriously.

Good luck and let us know how you get on.

 

[Proud to be erratic]

Hello @MarinaDE,

I hope by the time you see this posting you will already have started your excursion to A&E.

I came to the world of T3c diabetes from symptoms of Pancreatic Cancer in late 2019. It seems that a cancerous tumour was steadily wrapping itself around my pancreas, unbeknown to me from any other symptoms, until my bile duct became blocked and I became extremely jaundiced, which very rapidly made me extremely debilitated. After various tests and deliberations a decision was made to investigate the tumour surgically, with the possibility that I would end up surrendering my pancreas - and so it was.

After my 'pylorus preserving' total pancreatectomy, it is known as a Whipples' Procedure, I had 2 weeks in hospital then 3 months surgical recovery at home. By this time I was mending well, but was sent for "adjuvant" (or precautionary) chemotherapy and I didn't cope with that particularly well. But by now I was, of course, completely insulin dependent and had no traces of my former pancreas.

So I have none of the pancreatic functions, ie not just no insulin production but no other pancreatic hormones; and my only digestive enzymes come from saliva. I take lots of Creon capsules for normal digestive functions. My saliva, slightly surprisingly to me, does provide sufficient digestion of hypo response treatments - provided I don't panic and I keep my quick response hypo foods in my mouth, allowing them to get mixed with saliva and steadily work their way into both my stomach and into my blood by more immediate absorption.

From your opening narrative it does sound as though your resection from a decade ago has, unluckily, caught up with you and is now overwhelming your residual pancreatic functions. I am definitely NOT any kind of medical specialist. My background has been one day I had a fully working pancreas, the next day none. The Doctor you saw privately is unusual in even knowing about the existence of Type 3c. My experience over the last 3+ years has been to the contrary - but with you being already advised and informed about this very unusual Type of diabetes you should be in a good place to counter or at least scrutinise and challenge suggestions that you are T1 or T2. Those treatment paths might or night not be similar to T3c, but those paths won't take account of the many differences that pancreatic physical damage can cause.

I'm sure you already know that T1 is an autoimmune condition that kills off insulin producing cells and T1s are c.10% of all those with diabetes in UK. Whereas T2s, c. 90% of those with diabetes, generally routinely produce ample insulin but for various reasons their bodies are particularly resistant to their own insulin and this needs various degrees of lifestyle or medical intervention. T3 variants, including T3c are a tiny proportion of those people with diabetes - well below 1%. T3 (a-k) diabetes arises because of physical pancreatic damage affecting our insulin production. Most of us T3cs are insulin dependent but not all; some members on this forum are coping well with oral medications, in conjunction with diet and lifestyle adjustments.

For you, right now, your BG is too high and hopefully intervention at A&E will provide you with early correction. It could be that the respite might allow your pancreas to get a rest and resume normality - but that will only become clear in days and weeks ahead. Metformin takes time to build up in your system and it might help in reducing your natural insulin resistance; it does not boost your insulin production in any way. Different oral meds such as Gliclazide actually boost your pancreatic insulin production; in the short term that could help, but could also be further punishing a struggling pancreas and could increase the chance of worsening your natural insulin production permanently. All of this medical knowledge is NOT my expertise!

Because you probably still have some residual pancreatic functions and other pancreatic hormones there may still be medical confusion in establishing what is definitely not working, what needs help and what is happily chugging along! In an ideal world scans and tests would reveal all that, but such scans and tests are not always reliable and can be prohibitively expensive (yet still with uncertain outcomes). But these are problems and concerns for future days (or months). There is no reason why in a pretty short space of time your Blood Glucose can't be restored to appropriate normal levels, you will feel a huge amount better and then can wrestle with where to proceed from there. If that short term resolution needs an insulin regime don't feel overwhelmed by that; it may not be ideal but it's manageable. And it may be a temporary fix for now. You have pancreatic damage from that resection and that will need time to understand what the consequences are. There is no particular reason to immediately fear a return of your former cancer; rather the reverse. Your pancreatic damage seems to have triggered T3c diabetes and unless some other markers are presenting themselves I would focus on the management of diabetes and NOT imagine other scenarios.

Please ask any questions that occur to you. There is a huge wealth of experience on this forum and diabetes is described by one author as "Complicated, Confusing and Contradictory" - I think with great justification. Do keep in mind that you could possibly have developed either T2 or T1, but (in my non-medical opinion) given your recent diagnosis of T3c I think that sounds far more likely; many Health Care Professionals have never heard of T3c (it is rare) and I have found some to be rather entrenched in their positions - when it is I think perfectly sensible that pancreatic damage causing diabetes is neither T1 nor T2. I have got used to politely challenging this outdated mindset.

Finally, if you are placed on oral meds that actually boost insulin production (eg Gliclazides) or an external insulin regime, you need to become very alert to the possibility of going too low (hypoglycaemic). Your BG is currently too high (hyperglycaemic) and if insulin overwhelms your existing blood glucose going too low can become dangerous. The swing from too high to too low can be quite fast, particularly in a medical background of pancreatic damage. Ask what the treatment path is and do make sure any hypoglycaemic possibilities are explained to you. One of the things you (and the medical experts) don't know is what pancreatic damage now exists and so how many other pancreatic hormones aren't doing their normal jobs. Good luck, do let us know how you get on.

 

[MarinaDE]

Hi @Proud to be erratic

Thank you so much for telling me your story. I read it while I was waiting to see a nurse!

I felt so grim this morning, I wondered if I would collapse, but I also felt weird about going to hospital when I'm a foreigner and I know the NHS is overstretched. I rang some private clinics and finally found one where an endocrinologist would see me. I described my symptoms and they said to come in immediately to be monitored by the nurses, while I waited.

Their care was excellent. Though I was a bit panicked when my results came through and one nurse said to the other, "Oh my God", because obviously they didn't think I was aware of their conversation. It turned out there were a lot of ketones in my blood.

By the time I got to the endocrinologist I couldn't concentrate at all, and whatever he said to me went over my head, which he said was because of the blood sugar. But he spent a lot of time showing me how to inject insulin and the nurse downloaded the app, so I guess I am out of danger.

I asked him if the diagnosis of 3c was correct, and he said in one way it didn't matter any more, because the important thing was just focusing on getting the insulin management right. But he said diabetes after pancreatic resection is almost inevitable, and I should have been told to have regular checks to see if I were developing diabetes.

The staff were wonderful and I was very reassured, and they are going to do a lot of follow up, which is great.

But oh dear. Today was the second time I was warned that my life has now changed.

 

[Docb]

I'm relieved to hear that you have been properly assessed and you have found the help you clesrly needed. If you read around the forum you will be able to get some insight into insulin management from other T1's and 3C's. Take your time, work with the clinic you have found here and perhaps start to think about what you will need to do when you get back to Germany.

People describe it as being on a steep learning curve when it comes to insulin treatment but amazingly just about everybody gets there and I am sure you will be no different. In the mean time ask any questions you might have on here and somebody will be along to give you some constructive thoughts.

 

[Inka]

I’m so pleased you got the help you needed @MarinaDE ! No wonder you felt so ill with lots of ketones. It’s a horrible feeling.

I know starting insulin is a big shock emotionally and it takes a while to get used to, but it does get easier. Ask anything you want here. I hope you’re feeling a lot better tonight.

 

[eggyg]

I’m so glad you got help. I’m just sorry you’re so far from home and friends and family. Please don’t hesitate to ask any questions re your insulin regime. How have they left you? Just to fend for yourself or have they offered a follow up. Or are you in hospital? Sorry for all the questions but it’s a worrying enough time when you’ve got support but to be on your own must be disconcerting.

 

[everydayupsanddowns]

Well that’s a relief @MarinaDE - we were all a little worried about you!

Diabetes can really sneak up on people, and things can accelerate towards the end if it remains untreated (getting diagnosed after collapsing unconscious is not uncommon) - but you‘re not the only one to ‘not want to be a bother’ or to be abroad when it happens, and part of you would prefer to wait until you got back.

Glad you were able to be seen, and you have now been started on insulin. Which types have you been given? And have they also started you on Creon?

Just give yourself time to adjust, and be kind to yourself. Diabetes is serious, but it’s also something you can learn to live well with, and make it fit into your life (not the other way around!). It shouldn’t stop you doing anything you want to do. Some things may just need a little extra thinking and preparation 🙂

 

[MarinaDE]

THANK YOU SO MUCH everybody. Your support and advice has been invaluable, and I'm so happy about the concern.

My consultant emailed me this morning to discuss how my blood sugar had performed overnight. It's a bit weird being remotely monitored, to be honest. But he said the blood sugar suggests part of my pancreas is still working.

Apart from that, all questions about my pancreas are being left until I return home at the end of August, because that side of things can wait a bit (my travel insurance will only cover emergencies).

My God, I feel so, so, so much better with the insulin compared to how I felt yesterday. The doctor told me I'd feel really good in about three weeks, so I can't wait for that. One of the other health staff said I would have adjusted to feeling sick, so health will feel miraculous.

It's also really nice to be able to discuss all this in English, with staff who are chatty and friendly, and not so formal. I feel immensely grateful to the medical staff I've dealt with so far.

 

[Proud to be erratic]

I'm also very pleased that you took, what looks like from this distance, 3 steps forward and no obvious part step back. Yes, there are masses of future steps to be taken, new things to learn and new routines to develop; and yes, there will be hiccups along the way. But I'm sure you will adjust surprisingly quickly and take this all in your stride.

Hi @Proud to be erratic

Thank you so much for telling me your story. I read it while I was waiting to see a nurse!

I felt so grim this morning, I wondered if I would collapse, but I also felt weird about going to hospital when I'm a foreigner and I know the NHS is overstretched. I rang some private clinics and finally found one where an endocrinologist would see me. I described my symptoms and they said to come in immediately to be monitored by the nurses, while I waited.

That all read in a very positive way. It is, without question, very frightening in such scenarios and even more so when you are on your own, away from home.

Their care was excellent. Though I was a bit panicked when my results came through and one nurse said to the other, "Oh my God", because obviously they didn't think I was aware of their conversation. It turned out there were a lot of ketones in my blood.

By the time I got to the endocrinologist I couldn't concentrate at all, and whatever he said to me went over my head, which he said was because of the blood sugar. But he spent a lot of time showing me how to inject insulin and the nurse downloaded the app, so I guess I am out of danger.

So may I, out of simple curiousity, ask what app? Indeed what have they set you up with, ie what insulins are you starting with, have they given you with a Continuous Glucose Monitor (CGM) such as Libre 2 or indeed even Libre 3 (we'll all be very envious if you do have that - there is an odd situation here in UK whereby we can only get Libre 3 through the NHS and not privately along with huge difficulty from the NHS).

I imagine they will be cautiously introducing you to insulin, with conservative doses and generally slowly reducing your BG, which is both better for your body and making full effort to keep you away from early introduction to the world of hypos!

I asked him if the diagnosis of 3c was correct, and he said in one way it didn't matter any more, because the important thing was just focusing on getting the insulin management right.

I particularly agree that in its way the T3c diagnosis doesn't matter any more and getting the insulin management right is all important. Because T1 gets superior tech support within the NHS, than being T2 it is invaluable to be seen "as if T1", rather than T2 when actually T3c. This can be a blatantly unfair bit of post code lottery, but inevitably can make a difference for NHS patients.

But he said diabetes after pancreatic resection is almost inevitable, and I should have been told to have regular checks to see if I were developing diabetes.

Makes sense, an annual HbA1c (in hindsight) might have saved you a lot of distress.

The staff were wonderful and I was very reassured, and they are going to do a lot of follow up, which is great.

But oh dear. Today was the second time I was warned that my life has now changed.

Well, can you be like Pollyanna and find good things from this?

Overall your latest post is very reassuring for you and it makes sense that matters now wait for your return to Germany. Other than some possible tweaking of daily insulin I suspect not much would change anyway in the short term even if receiving private treatment under UK processes; only perhaps more investigations of the state of your panc'y, leading to longer term decisions.