Hi new to all this!

[chigga78]

Hi newbie to this forum been type 3c since 2015 following acute pancreatitis. Never used any internet forums at all, give me a break though I am 45 not 19 lol. Really struggling through the GLP meds shortage.Just thought I'd say hi.

 

[Leadinglights]

Hi smith56 I'm new here too literally about 20 minutes or something. Panicking and melting down a bit too, reason I joined was looking for support and people who are feeling the same during the shortage of GLP meds. Been type 3c since about 2015 when my pancreas packed up. Not being able to get hold of the victoza or any kind of alternative and getting through my first week without it this week is killing me. Probably doesn't help having given up smoking 2 months ago either lol. BG is out of control.i just don't know what to do or where to turn. No one can help. I'm so angry all the time with the skinny jab users who have created this and the doctors who have let it happen its just not fair. So so angry. How did the NHS not see this coming? Sorry for venting but I feel like I'm just falling head long into burn out.

Many of the Type 3c people here are treated as Type 1 and have access to the same technology and basal /bolus insulin regime rather than being fobbed off with treatment aimed at Type 2s
Have a look at some of the posts by @Proud to be erratic.

 

[chigga78]

Thank you, I'm lucky to have been allowed a libre 2 sensor, thankfully. But it was a difficult battle I'll check on proud to be erratic. I'm struggling just using a forum at the mo never done it before!

 

[Proud to be erratic]

Hello @chigga78,
Not sure I can share much that could be useful with you. I'm afraid I know very little about GLP meds. My world needs insulin since I have no pancreas whatsoever, so I'm T3c but as if T1 (with complications).

You are no doubt aware that any of the Type 3 diagnoses (from T3(a-k)) are for people who have damage to their pancreas - OTHER THAN from autoimmune destruction of beta cells and thus halting their insulin production, which is specifically T1 territory. Approximately 10% of all those with a diagnosis of Diabetes are T1 and approximately 90% are T2 - so you can see that those of us in the T3 category are far and few between. But we do exist and Specialists invariably find our circumstances intriguing, which can be helpful.

What exactly brought about your diagnosis of T3c?

I presume that the Victoza is a prescribed med for you so I can see a couple of opportunities that might find a solution. Firstly ask either your normal dispensing Pharmacist or the Pharmacist that supports your GP Surgery for help in identifying alternatives. All GP Surgeries have an "in-house" Pharmacist, even if that Surgery doesn't actually have a dispensing Pharmacy. This in-house Pharmacist may not actually work in the GP Surgery building and could be providing a contracted service, but will answer as if they are fully part of the Practice - which in effect they are and that person is who a GP will turn to when there is any sort of query or challenge about any medication. Even if that person doesn't know the exact right answer they know who to ask - both amongst their colleagues but also from the Pharmacy Team in the Regional Integrated Care Boards (ICBs) that replaced the Clinical Commissioning Groups (CCGs) on 1 July 2022. I'd anticipate that they know how to find what alternatives exist. The problem might be, however, that there are simply no GLP alternatives available.

The 2nd option is to ask your GP for an Urgent referral to a Specialist Hospital based Team - who have a much wider view of Diabetes management than a GP who predominantly deals with T2s. Since you are diagnosed T3c I would expect you have another medical condition that has brought about your impaired insulin production and I'd expect that the right Consultant can advise on this, including of course putting you on an appropriate insulin regime.

I suppose a 3rd option would be to go to your biggest nearby A&E and seek their help. But I'm not sure that is a particularly good 3rd option.

Sorry this is not substantial help. Do feel free to ask further on this forum, there are many members and extensive knowledge within the hive like mind of the membership. Let us know how this unfolds!

 

[Proud to be erratic]

Hi newbie to this forum been type 3c since 2015 following acute pancreatitis. Never used any internet forums at all, give me a break though I am 45 not 19 lol. Really struggling through the GLP meds shortage.Just thought I'd say hi.

Hi @chigga78, I've replied on a different thread - not having seen your explanation of acute pancreatitis leading to your T3c diagnosis. I now think you need to urgently get referred back to the Endocrinologist that helped you when you were in so much trouble with pancreatitis. In my non-medical opinion insulin has got to be an option, even if only on a temporary basis. There are very many different sorts of insulins and got to be one for your circumstances.

If you want to reply on this thread to disentangle from the other thread, please do so. Or the other thread - but let's not try to keep 2 conversations running! My multi-tasking skills were always constrained as a mere man and now worsened by age and currently have no PC or laptop. Just my android phone and one-fingered typing.

 

[chigga78]

Hello @chigga78,
Not sure I can share much that could be useful with you. I'm afraid I know very little about GLP meds. My world needs insulin since I have no pancreas whatsoever, so I'm T3c but as if T1 (with complications).

You are no doubt aware that any of the Type 3 diagnoses (from T3(a-k)) are for people who have damage to their pancreas - OTHER THAN from autoimmune destruction of beta cells and thus halting their insulin production, which is specifically T1 territory. Approximately 10% of all those with a diagnosis of Diabetes are T1 and approximately 90% are T2 - so you can see that those of us in the T3 category are far and few between. But we do exist and Specialists invariably find our circumstances intriguing, which can be helpful.

What exactly brought about your diagnosis of T3c?

I presume that the Victoza is a prescribed med for you so I can see a couple of opportunities that might find a solution. Firstly ask either your normal dispensing Pharmacist or the Pharmacist that supports your GP Surgery for help in identifying alternatives. All GP Surgeries have an "in-house" Pharmacist, even if that Surgery doesn't actually have a dispensing Pharmacy. This in-house Pharmacist may not actually work in the GP Surgery building and could be providing a contracted service, but will answer as if they are fully part of the Practice - which in effect they are and that person is who a GP will turn to when there is any sort of query or challenge about any medication. Even if that person doesn't know the exact right answer they know who to ask - both amongst their colleagues but also from the Pharmacy Team in the Regional Integrated Care Boards (ICBs) that replaced the Clinical Commissioning Groups (CCGs) on 1 July 2022. I'd anticipate that they know how to find what alternatives exist. The problem might be, however, that there are simply no GLP alternatives available.

The 2nd option is to ask your GP for an Urgent referral to a Specialist Hospital based Team - who have a much wider view of Diabetes management than a GP who predominantly deals with T2s. Since you are diagnosed T3c I would expect you have another medical condition that has brought about your impaired insulin production and I'd expect that the right Consultant can advise on this, including of course putting you on an appropriate insulin regime.

I suppose a 3rd option would be to go to your biggest nearby A&E and seek their help. But I'm not sure that is a particularly good 3rd option.

Sorry this is not substantial help. Do feel free to ask further on this forum, there are many members and extensive knowledge within the hive like mind of the membership. Let us know how this unfolds!

TBH I don't know much have been told for a long time I'm type2 and been fobbed off a lot along the way
Only found out by registering with diabetes UK about being t3c and had to Google. The only person who had made reference to it had been my GP. She's awesome. I had severe acute pancreatitis with a massive cyst. I have a diabetic consultant who hasn't seen me for years but I understand that COVID and more serious patients may have caused this. Great diabetes nurse team at the hospital but always made me feel a bit second rate. But it's all become secondary to a brain disorder which is taking priority at the moment, had surgery last November still recovering from that ATM. The shortage of GLPs is a national problem, as they have been prescribing these medications for people as weightloss jab. Demand has out stripped supply which had had a knock on effect on people with diabetes. So frustrating, I'm angry all the he time ATM about it, feel like I'm heading for another burn out. Still learning to use the forum, never done one before, and I'm not that old really lol. But thank you for taking the time, appreciated.

 

[everydayupsanddowns]

Welcome to the forum @chigga78

I’ve taken the liberty of moving replies to you, and merging them with your other thread to help keep the two conversations separate.

@eggyg is another of our Type 3cs who had a bit of an ordeal getting proper treatment (rather than simply being classified T2) so may be able to offer some tips. But I think persistence is the key!

Hope you are able to get some workable meds as the GLP shortages seem likely to continue into 2024

All the best with your brain treatment too. Hope you get a positive outcome and timely interventions

 

[Proud to be erratic]

Thanks for this reply below @chigga78, it helps us understand the breadth of your challenges. In principle any one with diabetes might also have other medical complaints and some more dominant complaints than their diabetes. You, like most T3cs, need to manage the underlying complaint (pancreatitis) to then allow you to manage your D.

And of course right now you are dealing with recovery from your Surgery last November - so possibly needing medications that themselves could also muck about with your BG.

TBH I don't know much have been told for a long time I'm type2 and been fobbed off a lot along the way

My perception is that this seems to have occured a lot in former years - a somewhat unthinking generic T2 diagnosis and then resistance (fobbed off) to the idea even that you are neither T2 nor T1 BUT T3 (a-k)... T3c specifically for pancreatitis.

Only found out by registering with diabetes UK about being t3c and had to Google. The only person who had made reference to it had been my GP. She's awesome.

Great you have an awesome GP.

I had severe acute pancreatitis with a massive cyst. I have a diabetic consultant who hasn't seen me for years but I understand that COVID and more serious patients may have caused this. Great diabetes nurse team at the hospital but always made me feel a bit second rate.

Interesting contradiction there... Great team but made you feel a bit 2nd rate. I can personally identify with that from the D Team that took on my care after I was discharged from hospital after my pancreatectomy. Initially I felt I was being extremely well looked after - yet my BG was hopelessly erratic (pre Libre, 10+ fps daily) then over time I realised I was getting personal support that was not relevant to me; then Covid overwhelmed that Dept and my care was simply wrong: not digesting consistently so not metabolising fully all I was eating, so poor BG management. My former team just did not understand the problem or the consequence. I was fortunate enough to be referred to a true Specialist Hospital Team and I was immediately under the Head Consultant who is also closely involved in islet transplants that they are pioneering.

I think right now you need to get back to an Endocrinologist rather than the specialist nurses - who ought to be able to fully assess the interface of your recent surgery, your pancreatitis and determine how best to manage your T2. Your awesome GP could help with an appropriate urgent referral OR you could reach out to your surgical team who might well be able to internally refer you the exactly right Consultant. That is how I got to my present D Consultant, from a request from my Surgeon after 12 months of struggling.

But it's all become secondary to a brain disorder which is taking priority at the moment, had surgery last November still recovering from that ATM. The shortage of GLPs is a national problem, as they have been prescribing these medications for people as weightloss jab. Demand has out stripped supply which had had a knock on effect on people with diabetes.

Do you need Creon as a result of your pancreatitis? Have you been affected by the current national shortage of Creon as well?
Creon is essential for me and its mainly as a result of the Creon shortage that I got a better understanding of the existence and role of the Pharmacist supporting my Medical Centre. So I do know how stressful it was briefly, when I first encountered the Creon shortage; and the Practice Pharmacist was really diligent on my behalf.

So frustrating, I'm angry all the he time ATM about it, feel like I'm heading for another burn out.

I can understand that and can only offer the platitude to try and not let it get to you. It's out of your personal control and stress, in any form, is bad for anyone but trebly bad for those of us trying to keep our BG at sensible levels.

Still learning to use the forum, never done one before, and I'm not that old really lol. But thank you for taking the time, appreciated.

Understand that as well - my first foray onto a forum was very challenging (Facebook while trying to find out more about T3c a few months after Surgery. A mistake!). This Forum has been terrific for me: many members with a huge breadth of D experiences; a pretty gentle and tolerant approach by all - all accepting that we're all different so what works for one person may not be so for another; and extremely accommodating about "theoretical or possible forum etiquettes". Hence a moderator has helpfully merged your 2 postings into one thread.

Above all please don't hesitate to ask if there is something you don't understand. Forum members are in full agreement that no question is stupid and we seem to love helping and sharing our non-medical knowledge. Hopefully you can now reach out to someone tomorrow, armed with a little more knowledge about T3c and how the system works.

As well as @eggyg there are a few more T3c members, specifically from pancreatitis. So I'm tagging @soupdragon and once I can remember some of the others I'll add them into a brief next post.

 

[everydayupsanddowns]

Another frequent poster on the forum would be @martindt1606 . And also @Hepato-pancreato , though posting less frequently recently I think.

 

[chigga78]

The D nurses are good for practical help but really struggle to support my mental health around D I'm sure that's common for everyone. And some nurses arebetter than others. Just to note had a massive stroke after brain surgery so sometimes my posts and messages might be a little muddled, but I'm just glad to be walking again. I do take Creon and was offered something else for bile acid malabsorption which really didn't work for me. So stuck to loperamide and buscopan to help manage the condition, steatorrhoea is the pits ( if anyone else struggles with bile acid malabsorption, it's worth trying, cos that in itself can make life so miserable). I deluded myself for a long time the my pancreas might heal and I could go into D remission. Bye I'm trying to face it now that will never be the case. It's just so good to finally be able to find someone people who understand the nuances of other problems in addition to D. Thank you all x

 

[soupdragon]

Hi and welcome @chigga78
As @Proud to be erratic mentioned, I'm Type 3c following pancreatitis.
I've been treated with insulin from the start and always treated as if Type 1 (with the addition of Creon).

Totally understand your comment about hoping the diabetes would go away. Logically I knew that wouldn't happen for me (as I have very little pancreas left) but it took a long time for me to accept that.

I'm not sure if you're on insulin yet (sorry if I've missed that). Hoping that you get the support that you need, as managing the digestive issues along with the diabetes can be a challenge.

 

[chigga78]

Hi and welcome @chigga78
As @Proud to be erratic mentioned, I'm Type 3c following pancreatitis.
I've been treated with insulin from the start and always treated as if Type 1 (with the addition of Creon).

Totally understand your comment about hoping the diabetes would go away. Logically I knew that wouldn't happen for me (as I have very little pancreas left) but it took a long time for me to accept that.

I'm not sure if you're on insulin yet (sorry if I've missed that). Hoping that you get the support that you need, as managing the digestive issues along with the diabetes can be a challenge.

Hi, yes thanks been on insulin since then too but I hate taking the quick release and try and manage my best on slow release toujeo and the victoza until it had became unavailable. Now my blood are all over the place. And I'm in a right mess. Been my so angry didn't help but it's just how I feel. Just wish the earth would swallow me up mos to days

 

[everydayupsanddowns]

And I'm in a right mess. Been my so angry didn't help but it's just how I feel. Just wish the earth would swallow me up mos to days

Awwww @chigga78 - that’s really tough.

Keep going. You will get there. Do try to take fast acting with meals - it can be confusing and frustrating, and getting the balance right can be tricky (and need ongoing adjustment), but where your home-grown insulin production is impaired a combination of background and mealtime doses is much more like what your body would have been doing (a trickle of insulin in the background to look after the basal metabolic stuff, and shorter bursts of insulin when you eat carbohydrates).

Long acting insulins aren’t really designed to cover meals, and if you take enough long acting to ‘mop up’ meal carbs it can mean that you have far too much in circulation at other times, eg overnight, and you might end up ‘feeding’ the insulin or risking hypos

What was it about the rapid insulin that you didn’t like?

 

[chigga78]

Awwww @chigga78 - that’s really tough.

Keep going. You will get there. Do try to take fast acting with meals - it can be confusing and frustrating, and getting the balance right can be tricky (and need ongoing adjustment), but where your home-grown insulin production is impaired a combination of background and mealtime doses is much more like what your body would have been doing (a trickle of insulin in the background to look after the basal metabolic stuff, and shorter bursts of insulin when you eat carbohydrates).

Long acting insulins aren’t really designed to cover meals, and if you take enough long acting to ‘mop up’ meal carbs it can mean that you have far too much in circulation at other times, eg overnight, and you might end up ‘feeding’ the insulin or risking hypos

What was it about the rapid insulin that you didn’t like?

It makes me put weight on despite the fact I'm trying to walk 5km most days. But I don't do nearly as much as before surgery. Then I was mucking out horses daily which was a lot of work riding occasionally. But I've lost my driving license and I can't get there anymore. I've lost muscle too from being in hospital so long, mostly from coma to protect my brain until I recovered properly. The worst part is not being round horses everyday.

 

[everydayupsanddowns]

The worst part is not being round horses everyday.

I can imagine! We have a few horsey peeps here (@rebrascora and @Robin both ride quite regularly I think)

And I can see how strong a connection is made.

What was it about rapid insulin that you didn’t like? Was it just the extra jabs? Or could you not get the balance between meals and doses working for you?

 

[chigga78]

I can imagine! We have a few horsey peeps here (@rebrascora and @Robin both ride quite regularly I think)

And I can see how strong a connection is made.

What was it about rapid insulin that you didn’t like? Was it just the extra jabs? Or could you not get the balance between meals and doses working for you?

It's the weight gain

 

[rebrascora]

Hi and welcome from me too.

Really sorry to hear that you are struggling with so many issues as well as your diabetes management and even worse that you are unable to mess around with horses at the moment. I hope that is a temporary situation and if not, have you considered Driving for the disabled? I know there are not many places that do it these days but there are still some. I spend more time looking after mine these days than riding, as they are getting on a bit but I help my partner drive his horses in the summer months and occasionally hack out with him too.

As regards Insulin causing you to put on weight, that isn't strictly true, it is the food you ea which puts the weight on. The insulin you take just allows your body to store any surplus glucose from that food as fat, but I know the GLP2 inhibits you from eating too much, so I can see how, compared to insulin, that might seem beneficial/preferable.
The only real way that insulin will cause weight gain is if the dose is too high and you are having to eat more than you need, but obviously if you are eating more than you need because you are craving/comfort eating or simply just used to large portions then yes, the insulin will enable your body to store that surplus as fat. I was a sugar addict and comfort eater pre diagnosis, but I have found a low carb diet has heled me to gain control of those cravings and the less carbs I eat, the less I want/crave them. It has been quite a revelation for me to find that I can live without bread and potatoes and chocolate bars. I was never that bothered about pasta and rice, so cutting them our was no hardship at all. I discover new tasty low carb food ideas every week and my diet is now so much more varied than it was before. I still have to inject my mealtime insulin both for the few carbs I have and for protein release afterwards, but my eating is much more controlled and I am satisfied with less food and I rarely feel hungry, whereas before I wanted to eat every couple of hours.
Anyway, that has been my solution. Changing my diet to low carb has also had a number of other health benefits, like dramatically reducing my incidence of migraines.... in fact I had 4 years free of them as soon as I changed my diet and I was average one acute migraine a month prior to that. I also have almost eradicated joint pain which I think is pretty impressive at nearly 60 considering that I thought I was headed for a knee replacement and hobbled down hills whereas now I can run down them without pain. My skin has also improved and so has my asthma, so there have been lots of benefits to changing my diet.

Anyway, just really wanted to say hello from another horse lover.
Here is a photo of my 4 to cheer you up...

 

[Proud to be erratic]

It's the weight gain

In principle insulin shouldn't be the cause of weight gain - that's a myth; since we should only be taking enough bolus insulin for the food (carbs) that we are eating.

Of course if we are overeating then extra insulin will be needed. But we need to be honest with ourselves and consider portion size control, etc.

If however we are taking too much insulin, whether because we have too much basal or not so good bolus / carb ratios, then because we habitually drop too low for comfort and end up repeatedly "feeding the insulin" weight gain will inevitably occur.

But @chigga78 are you also on other meds that could be contributing to weight gain? Some steroids can cause weight gain. Also because you are currently far less active do you perhaps need to do that honest review about food intake .... Sorry!

Whatever, your primary remit is to complete your recovery from your stroke and surgery - and that recovery is best assisted by decent management of your BG. In as much as you sensibly can. So is there anything we can help you with, in terms of answering queries you might have about, in effect, any aspect of Multiple Daily Injections (MDI)? Or anything else about D? We try quite hard to not offer medical advice - that is for the HCPs. But there is a huge base of experiences amidst forum members and its a resource usually worth tapping .

 

[everydayupsanddowns]

Perhaps try a different rapid insulin @chigga78 and see if that suits you better? There are a variety of different formulations (including older ‘human’ rather than ‘analogue’ options) and some are more suited to one than another.

Insulin in and of itself should not promote weight gain if energy-intake is consistent - but this is diabetes so some rule-breaking nonsensical behaviour is perhaps to be expected 🙄

 

[chigga78]

Hi and welcome from me too.

Really sorry to hear that you are struggling with so many issues as well as your diabetes management and even worse that you are unable to mess around with horses at the moment. I hope that is a temporary situation and if not, have you considered Driving for the disabled? I know there are not many places that do it these days but there are still some. I spend more time looking after mine these days than riding, as they are getting on a bit but I help my partner drive his horses in the summer months and occasionally hack out with him too.

As regards Insulin causing you to put on weight, that isn't strictly true, it is the food you ea which puts the weight on. The insulin you take just allows your body to store any surplus glucose from that food as fat, but I know the GLP2 inhibits you from eating too much, so I can see how, compared to insulin, that might seem beneficial/preferable.
The only real way that insulin will cause weight gain is if the dose is too high and you are having to eat more than you need, but obviously if you are eating more than you need because you are craving/comfort eating or simply just used to large portions then yes, the insulin will enable your body to store that surplus as fat. I was a sugar addict and comfort eater pre diagnosis, but I have found a low carb diet has heled me to gain control of those cravings and the less carbs I eat, the less I want/crave them. It has been quite a revelation for me to find that I can live without bread and potatoes and chocolate bars. I was never that bothered about pasta and rice, so cutting them our was no hardship at all. I discover new tasty low carb food ideas every week and my diet is now so much more varied than it was before. I still have to inject my mealtime insulin both for the few carbs I have and for protein release afterwards, but my eating is much more controlled and I am satisfied with less food and I rarely feel hungry, whereas before I wanted to eat every couple of hours.
Anyway, that has been my solution. Changing my diet to low carb has also had a number of other health benefits, like dramatically reducing my incidence of migraines.... in fact I had 4 years free of them as soon as I changed my diet and I was average one acute migraine a month prior to that. I also have almost eradicated joint pain which I think is pretty impressive at nearly 60 considering that I thought I was headed for a knee replacement and hobbled down hills whereas now I can run down them without pain. My skin has also improved and so has my asthma, so there have been lots of benefits to changing my diet.

Anyway, just really wanted to say hello from another horse lover.
Here is a photo of my 4 to cheer you up...
View attachment 28090

O my god they're gorgeous are they welshies? Love them they're beautiful,! That did curry me up thank u.I honestly just miss mucking out and caring for them, was looking after a pregnant mare and then the foal arrived last August. Very poorly owner who should have never bought her. But I understand why y she wanted another horse. And gave me a lot of experience for being so green with horses. But she was in denial that I was going to leave right until the day I went into hospital. I've got a really sweet tooth and really **** will power. Trying to experiment with baking my own wholemeal biscuits at the moment and subbing some of the flour for ground almonds. But I can't get to grips with how to use granulated sweetener in baking. And I skip lunch most of the time which I know is bad. The he only exercise I've ever enjoyed is running around after horses. I've put 2 stone on since I've stopped doing that and came out of hospital. I've walked nearly 20k already this week, which is a big increase for me. so it'll start helping soon. I've given up smoking as well about about 2 months ago. Which is probably causing me to eat more. I'm trying g to sub snacks with raw veg .I lost my sense of taste after the stroke, and since I got it back I've made up for it. Going to ask the tree GP about going back on Metformin,I hate it. But at least if I'm feeling nauseous it'll stop me eating! Thanks for the response, it's a shame u don't live nearer otherwise I'd be badgering u to let me come muck out and groom etc.