Newly diagnosed

[Mrdavid62]

Hi all,
Just been diagnosed within the last three weeks with type 1. it has just come out of the blue, I thought I was quite fit as I ran the London marathon last year and carried on running I done over 450 miles last year, what a shock! my blood sugar level was over 21 and have now been put on Humulin I think it’s a small dose of 16 twice a day, I have never been so cold all of the time and also sleeping a lot. The other symptoms I get it a lot of pain around my stomach and back and yesterday there was a small bit of blood in my mouth when I rinsed.

 

[dannybgoode]

Hi all,
Just been diagnosed within the last three weeks with type 1. it has just come out of the blue, I thought I was quite fit as I ran the London marathon last year and carried on running I done over 450 miles last year, what a shock! my blood sugar level was over 21 and have now been put on Humulin I think it’s a small dose of 16 twice a day, I have never been so cold all of the time and also sleeping a lot. The other symptoms I get it a lot of pain around my stomach and back and yesterday there was a small bit of blood in my mouth when I rinsed.

Your experience mirrors mine - I ran the Loch Ness Marathon in September and was diagnosed in December - Hba1c of 121 and BG of 27+.

They thought I was type 1 also but now think type 2. Note though that neither type, and particularly type 1, has much to do with fitness necessarily.

Have you had your Hba1c measured yet and how did the diagnosis come about? Are they running any other tests to confirm the diagnosis etc?

Type 1 is an autoimmune condition where your pancreas has stopped producing insulin and this can happen to anyone at any time. Yes it's more commonly diagnosed in younger people however older people can suddenly have it triggered too.

If you're concerned about any of your symptoms then put a call into the diabetic team if you've been assigned to one yet.

 

[Mrdavid62]

Thanks for the reply I am over 60. I am back to the GP this morning for some more blood tests, next week to see the diabetic nurse then got some scans within the next couple of weeks. It all happened between Christmas and new year I lost approx 5 kg mouth was dry, some pain periodically, not sure if I have had my Hba1c checked yet. I suppose getting older isn’t fun.

 

[everydayupsanddowns]

Welcome to the forum @Mrdavid62 - Sorry to hear about your diagnosis. It can come as a real shock, but also it can feel like a relief to know why you’ve been feeling increasingly grim for a few weeks.

Sounds like you’ve been put on a mixed insulin if you are taking it 2x a day. Is it Humulin M3?

A mixed insulin isn’t the most flexible system to use, and the NICE Guidance for T1s is to use a Multiple Daily Injections (MDI) system often called basal/bolus.

This involves more injections in a day, but adds a lot of flexibility, and much more closely mimics what your pancreas was doing before you developed T1. You take a long acting insulin once or twice a day which covers the background trickle of glucose emitted by the liver. Then you take an additional mealtime rapid acting insulin each time you eat.

Separating the 2 insulins means you can adjust them separately to get the balance right, eat larger or smaller meals, correct mistakes more rapidly, miss meals entirely, and adjust doses for exercise. All of which are quite tricky to do on a premixed insulin because you have to feed a mixed insulin according to its timing, not yours!

Might be worth asking if you could switch sooner rather than later, so you can start getting used to the way of things without having to try to find workarounds for mixed?

 

[HayleyR]

Hello @Mrdavid62 and welcome 🙂 . I was diagnosed several years ago and remember the symptoms were awful - dry mouth, burred vision and fatigue. I also lost quite a bit of weight and thought OMG what's happening so it was it was a bit of a relief to get the diagnosis. Like you , very much out of the blue, I exercised regularly and didn't have a poor diet. There's so much to take in but you'll get there and feel better gradually. I'm on Humalog before meals and take slow acting Levemir morning and evening. Although it's around 5 injections a day as mentioned it's more flexible. I hope you find this forum helpful, you don't have to feel alone.🙂

 

[rebrascora]

Hi and welcome from me too.

Good to hear they are sending you for scans as the pain around your stomach and back could be an indication that your pancreas is inflamed. possibly pancreatitis, which could be the cause of your diabetes, which might make you Type 3c (damage to pancreas through disease, trauma or surgery) rather than Type 1 which is an autoimmune attack on your insulin producing beta cells.

Have you been referred to a specialist diabetes clinic?

It can all be a bit overwhelming at first as you are on a very steep learning curve (I am sure it might feel like we are all talking in a foreign language at first) but gradually it will all start to become your new way of life. It is good that they have started you on insulin straight away.

How are you managing with the insulin and testing? Have they given you a sensor that monitors your levels and sends them to your phone or do you just have a finger prick meter for now?
Do make sure to carry hypo treatments with you wherever you go including by the bed and I keep some in the bathroom too. A hot shower or bath, particularly after exercise, can really drop your levels sometimes, so do have something like glucose tablets or jelly babies or orange juice or whatever your chosen treatment is, close at all times and don't leave the house without them.


@everydayupsanddowns I read it as the OP was taking "Humulin I" twice a day as a basal insulin rather than "Humulin M3" but I may have misunderstood. Some HCPs seem to start patients off on just a basal insulin and then add bolus later once they get the basal dosing about right. I am guessing that they will likely stop prescribing Levemir now that they know it is being discontinued, so Humulin I would be the obvious substitute.

 

[helli]

it has just come out of the blue, I thought I was quite fit

Welcome MrDavid
Yes, Type 1 often comes out of the blue. I think this is because it has little or no relationship with how healthy we are.

I read it as the OP was taking "Humulin I" twice a day as a basal insulin rather than "Humulin M3" but I may have misunderstood. Some HCPs seem to start patients off on just a basal insulin and then add bolus later once they get the basal dosing about right.

I read the same except, in my experience, 32 units per day is not a particularly low starting dose, especially as a basal. It is more than my TDD after 20 years. However, that may be partially due to me lower weight.

 

[Inka]

I read it as Humulin i too @rebrascora I never understand why they do that because it usually entails more basal to mop up the food.

Welcome @Mrdavid62 🙂 It’s good they’re doing scans as I wouldn’t say stomach and back pain is a usual symptom of Type 1. It sounds like you’re getting good treatment. Hopefully they’ll confirm your type soon.

 

[Bruce Stephens]

I thought I was quite fit as I ran the London marathon last year and carried on running I done over 450 miles last year, what a shock!

Type 1 is an automimmune disease. Nothing to do with fitness (or lack of it). I think the most common age of diagnosis is (and has been for decades) 13, so usually before any "lifestyle" things are likely to have any effect. I was a pretty ordinary fairly active 15 year old, otherwise healthy (though not particularly fit).

 

[SB2015]

As others have said @Mrdavid62 Type 1 can hit at any age (I was 53) and bears no relation to how fit you are. It is an autoimmune condition in which the antibodies gradually destroy the Beta cells that are responsible for making insulin we need.

It takes a bit of time to settle on a regime that works for you. It looks like you have been started on just basal insulin, and they will want to bring down your levels slowly to avoid damage to finer blood vessels. You may quite quickly find Bolus insulin useful to make meals more flexible.

Let us know how you get on, and take things step by step. Fire away with any questions that arise. Nothing is considered silly on here.

 

[Proud to be erratic]

It takes a bit of time to settle on a regime that works for you. It looks like you have been started on just basal insulin, and they will want to bring down your levels slowly to avoid damage to finer blood vessels. You may quite quickly find Bolus insulin useful to make meals more flexible.

Hi @Mrdavid62, welcome also from me - even though you might not have anticipated you would be joining a diabetes forum!

I think it would be really useful to sort out which insulin you have been given: Humulin i OR Humulin M3. Despite the similarity in names they are different types of insulin and have different purposes (=consequences). The naming and describing of different insulins is almost black magic that needs a book of spells to decipher what does what. I certainly still keep reading an insulin name that I'd not previously heard of and as I write this one of the commonly encountered insulins appears to be about to disappear, because the manufacturer is discontinuing it. So new insulins come along yet even tried, tested, trusted and loved insulins can disappear. The Spell Books will prevail with erroneous info for years, probably.

At this moment you are firmly under the management and care of your GP along with the GP Surgery Nurse. But if your diagnosis is confirmed as T1 after this morning's blood tests, then your care would normally be passed to a Hospital based team - wholly in accordance with the NICE Guidance to GPs (mentioned by @everydayupsanddowns in his earlier response.). If you should be interested in the mechanics of how these diagnoses progress, it is NICE Guidance for Type 1 Diabetes in Adults, NG17. A Google search should take you straight to it, but you are probably too preoccupied just now to want to get into this detail.

In principle General Practice requires such a wide breadth of knowledge about so many different ailments and c. 90% of all diabetes diagnoses are for Type 2. Consequently GPs are expected to manage almost all T2s but not T1s. There can be geographical constraints that mean this is not an absolute rule (so not set in concrete) but while most GPs know the differences they are not necessarily familiar with the finer points of daily T1 management. Consequently the GP Surgery Nurse often called the Diabetes Nurse is someone who deals with the T2s in the GP Surgery but rarely encounters a T1; that Nurse may have gleaned from background periodic interfaces some knowledge about T1 but a trained and experienced Diabetes Specialist Nurse (DSN) invariably works from a Hospital based and in direct liaison with the Hospital Diabetes Consultants. The DSNs are essentially the heart of Hospital based Diabetes Teams. Again, this is not set in concrete; there can be DSNs working more in the Community for Regional reasons, but this is unusual.

I hope this morning went well. Do please clarify exactly which Humulin insulin you currently have, so we offer appropriate responses. And do let us know what you learnt from this morning. Good luck, lots to take on board, but things will make more sense with time.

 

[JB14]

I was diagnosed July 2024 at grand old age of 76 . Complete shock to me - no family history. Started on humulin mixed insulin til blood test confirmed I was type 1. Now on Trurapi quick acting 3 times a day and Lantus long lasting once a day. I’m coming to terms with it and I seem to have got control of things - which I didn’t have with humulin. Good luck with it all.

 

[Mrdavid62]

Hi and welcome from me too.

Good to hear they are sending you for scans as the pain around your stomach and back could be an indication that your pancreas is inflamed. possibly pancreatitis, which could be the cause of your diabetes, which might make you Type 3c (damage to pancreas through disease, trauma or surgery) rather than Type 1 which is an autoimmune attack on your insulin producing beta cells.

Have you been referred to a specialist diabetes clinic?

It can all be a bit overwhelming at first as you are on a very steep learning curve (I am sure it might feel like we are all talking in a foreign language at first) but gradually it will all start to become your new way of life. It is good that they have started you on insulin straight away.

How are you managing with the insulin and testing? Have they given you a sensor that monitors your levels and sends them to your phone or do you just have a finger prick meter for now?
Do make sure to carry hypo treatments with you wherever you go including by the bed and I keep some in the bathroom too. A hot shower or bath, particularly after exercise, can really drop your levels sometimes, so do have something like glucose tablets or jelly babies or orange juice or whatever your chosen treatment is, close at all times and don't leave the house without them.


@everydayupsanddowns I read it as the OP was taking "Humulin I" twice a day as a basal insulin rather than "Humulin M3" but I may have misunderstood. Some HCPs seem to start patients off on just a basal insulin and then add bolus later once they get the basal dosing about right. I am guessing that they will likely stop prescribing Levemir now that they know it is being discontinued, so Humulin I would be the obvious substitute.

 

[Mrdavid62]

Hi
I have an appointment for the diabetic clinic on the 10th Feb also had an urgent blood test today, to see what they are going to scan for I have an ultrasound on the 12th then a ct.
The insulin is Humulin M3 I am on a dose of 16 twice a day I don’t know if that’s a lot