Recently Type 1 Diagnosed - No insulin given yet

[hallb24]

Hi everyone,

I have been diagnosed as type 1 last week by the nurse at my GP surgery. However she has gone on holiday for a couple of weeks and was reluctant to start me on insulin without any support while she was away. Just wandering how common it is to be diagnosed type 1 and not be put on insulin right away. I'm checking my levels and while fasting they don't normally go above 9. the biggest spike I have seen is to 16 late one evening.

I am assuming it will be sorted when she returns from her holiday although I have no appointment set up with her yet. Any help would be appreciated Thanks!

 

[Docb]

A couple of things I find odd in your post. First off is that a nurse gave a diagnosis of something like T1 diabetes. Maybe they were passing on a diagnosis made elsewhere but even so it seems odd. Second is that you were given a diagnosis of T1 and then told that treatment can wait until the nurse comes back off holiday. That's not T1 as I understand it. I would be getting in to see the GP ASAP and find out what is going on!

I'm sure some of the T1's will be along with comments.

 

[Ljc]

Hello @hallb24 welcome to the forum . I must say I agree with @Docb.
I too think you need to speak with a Gp urgently as, if yo have T1 waiting to start Insulin is not an option.
T1 is auto immune , this is where the immune system for some reason takes a dislike to the Beta cells (insulin producing cells) in the pancreas and starts destroying them, so insulin needs to be started ASAP

T2 has a totally different set of causes. But we usually produce or even over produce insulin it’s just that it’s harder to get into the cells where it needed , so glucose builds up in our blood stream rather than our cells for fuel. it’s rather like using a wrong key to open a lock. T2 initially is far more forgiving than T1, so delaying meds is ok, in fact many of us control it by changes in diet and where possible exercise, without meds .With T1 this is not possible and can become dangerous very quickly , so you really need to find out what type you have been diagnosed with now.

 

[hallb24]

I saw a GP originally but at my surgery they have a diabetes nurse. At my first couple appointments there was also a GP present however when I was told I am type 1 it was over the phone after tests had come back. Not ideal being told over the phone as I was at work at the time and it took me by surprise. I saw the nurse a few days later (Again no rush to get me in) this time without a GP present. It was at this appointment I was told I needed insulin as my levels were too high. Thanks for the response, I suppose I should go see my GP while she is away but I got the impression she is the expert on the subject. From what I've heard its unusual not to go on insulin immediately so I fell like I've been left to it with little answers

 

[Bruce Stephens]

It was at this appointment I was told I needed insulin as my levels were too high.

That doesn't sound like something that would be said to someone with Type 1. Is it possible there's been some miscommunication and (they think) you have Type 2?

 

[KARNAK]

Hello @hallb24 welcome to the forum, sure does sound odd as a T1 you should be put on Insulin immediately. Can you supply your test results and have you been tested for Ketones? if it was me I would be sat in A&E and tell them what you have told the forum. Please keep us up to date, we are concerned for you, take care.

 

[hallb24]

That doesn't sound like something that would be said to someone with Type 1. Is it possible there's been some miscommunication and (they think) you have Type 2?

I don't think so unfortunately... I have looked up the tests they have done that indicate I'm type one and it would appear based on the results that I am. They were confident I was type 1 from the off based on my age and weight etc and the tests just confirmed it. I will make an app to see my GP

 

[hallb24]

Hello @hallb24 welcome to the forum, sure does sound odd as a T1 you should be put on Insulin immediately. Can you supply your test results and have you been tested for Ketones? if it was me I would be sat in A&E and tell them what you have told the forum. Please keep us up to date, we are concerned for you, take care.

I had the test they do to measure your levels over three months. It came back as 9.9mmol. They then sent off bloods to see if I was type1/2 (Which took a while to come back) I was negative for GAD but positive for ISLET. It was the positive for ISLET they said made me type 1. I have also had Ketones but they didn't share with me at what level I had them. I went to the GP because I suddenly lost loads of weight and couldn't stop drinking it came on very quickly. Thanks once I've spoken to my GP I'll let you know how I got on!

 

[rebrascora]

Hi and welcome from me too.

I think you are quite fortunate that you have been tested for Type 1 at such an early stage and got that diagnosis confirmed. Many Health Care Professionals at a GP practice would automatically assume you were Type 2 as they did me.
I think it is likely that your body is still managing to produce some insulin of it's own and if you follow a low carb diet then you may be able to continue without insulin for several weeks or even months. I went 6 weeks from diagnosis mid Feb (when I had an HbA1c of 112 and like you, I was thirsty and weeing a lot) to starting insulin at the end of March and in fact I had been symptomatic for 2 weeks prior to diagnosis, so 8 weeks from symptom onset to starting on insulin, so providing you watch what you eat, I don't think there is any great concern at this stage, especially as your BG readings are not too bad although obviously a 16 is not great.... most of mine were in that range. It sounds like you have been provided with a BG meter and test strips...... and maybe Ketostix to test your urine?? So it is not as though they have left you totally up in the air. The effects of insulin use particularly in these early stages without careful supervision can be as dangerous as BG going too high, so I can sort of understand the nurses thought process. Has she given you advice regarding what to do if your BG suddenly goes very high ie upper 20s-30s? ....Testing for Ketones and going to hospital if detected? Did she discuss following a low carb diet to keep it under control? These things would mitigate her decision not to start you on insulin straight away.
Personally I do not think her decision is as questionable as others seem to think. You could easily end up in hospital due to a hypo because you were not sufficiently supported in the first few weeks of insulin use which is the most critical time, so I can see why she made that decision and it may well have been taken in consultation with the DSN or even a consultant. I know that there were 2 case conferences with a consultant about me before I ever got an appointment with him and the DSN also had input and was there when I was shown how to use the insulin, but it was the practice nurse (who oversees the diabetics in my practice area) who supported me through those first few weeks. I tried calling the hospital diabetes clinic helpline once but it was just an answering service and the message I eventually got back 3 days later was almost unintelligible because the responder's accent was so strong, so I do think the role of the practice nurse is important in this and if she is not available you could be left high and dry.

 

[Bronco Billy]

I fall into the ‘that sounds odd’ camp and would suggest getting in touch with the surgery to check it. A lot can happen in a couple of weeks, and while the diabetes may not be too bad now, there is a chance it may develop quite quickly. My concern would be what if it does?

 

[TheClockworkDodo]

I can understand what Barbara means about it being dangerous to leave you with insulin and no idea how to use it, but it could also be dangerous for you to be without insulin - diabetes ketoacidosis can develop very quickly in untreated type 1 and is just as risky as having a hypo and not knowing how to treat that.

There are two basic types of type 1 - the standard sudden onset type 1 and the slow onset type 1 which is often called type 1.5. If you had type 1.5 if would be reasonable not to put you on insulin straight away, perhaps not even for a few months, but your sudden loss of weight suggests you have the standard sudden onset type 1, which should be treated with insulin immediately.

Tbh, your GP is unlikely to know very much about type 1 - and your surgery nurse is likely to know only a little more (she's unlikely to be a specialist as such, just someone who's done a short course about diabetes so will be a bit more knowledgeable than others at the surgery, but who will mostly see type 2s). As a new type 1 you should be referred to a hospital specialist team, and I think you should have been referred to them as soon as your tests came back (if not sooner). So if I were you I'd ask your GP to refer you to the hospital team asap rather than waiting for your surgery nurse.

 

[Ljc]

@hallb24 . I totally agree with @TheClockworkDodo .
The majority of GPs have very little training in diabetes and imo not much experience with T1 or other types of diabetes ( their are a few). Most Gp practice nurses (DN) have had only a little extra training (a few days to a few weeks) and mostly deal with T2, who’s treatment is very different from T1, 1.5 or other rare types of diabetes.
Where a DSN (Diabetes specialist nurse ) usually based at the hospitals diabetes clinic has a degree in diabetes also while Under a hospital diabetes clinic you will be under the care of a variety of departments if needed up to and including a consultant all of whom are experts in diabetes.

So please push your Gp, hard if necessary to be referred to the experts.

 

[trophywench]

I'd just like to say that Trophywench hasn't posted on the thread - but anyway I certainly thought what Lin has attributed to me! LOL

I instantly thought This Is WRONG - but then discovered you'd already been told that by other members on here - so as long as you query it, ASAP, with someone a bit higher up the medical 'food chain', that's fine.

 

[Ljc]

I'd just like to say that Trophywench hasn't posted on the thread - but anyway I certainly thought what Lin has attributed to me! LOL

I instantly thought This Is WRONG - but then discovered you'd already been told that by other members on here - so as long as you query it, ASAP, with someone a bit higher up the medical 'food chain', that's fine.

Oops I will edit it , I can’t blame my iPad this time lol

 

[stephknits]

I would definitely ask for an urgent referral to the hospital diabetes team. They will be so much better equipped to help you in the coming months. Also, in the longer term, you might want to access diabetes technology such as an insulin pump and you will be much better placed under the diabetes team at hospital.
I was diagnosed wrongly as type 2 due to my age at the time (42) and managed to carry on with a very low carb diet until re-diagnosis for 10 months, although I did loose a lotofweight. Not recommended, but just for a bit of context.
Keep testing and go to A&E if you find yourself going into the 20s for any length of time.

 

[hallb24]

Hi everyone thanks for the comments/advice.
Quick Update
I saw my GP last week and explained I felt in limbo and needed a plan put in place. He admitted he's not an expert on diabetes but could see I needed to be put on insulin from results etc. He managed to get me in as an urgent referral to the Kingsfold centre in East Surrey where I saw a great diabetes team who gave me what I needed, educated me on all things diabetes, it was a long appointment and worth it! I've got the right treatment now and a follow up in a little over a week. Not sure why all this didn't happen from the outset but pleased I got there in the end even if I did need to be a bit firmer with the GP.

 

[Thebearcametoo]

That’s great to hear.

 

[Ljc]

Phew. It is great to hear that At last your not only on the right treatment but your now under a a the specialist team that you should have been referred to pdq in the first place.

Your DSN will want and expect you to keep in close contact during these initial stages with insulin.

 

[trophywench]

I'm extremely relieved to hear it !

Your GP needs to send off a registration to the authority that deals with it for a medical exemption card, since all our prescriptions are free of charge. I don't know who it is now that issues them since they changed it after I had my last one, they stop when we're 60 cos everyone's prescriptions become free. They also need to refer you to the Retinal Screening service in your area so you get your annual photos done.

The Clinic has presumably written to your GP anyway to list the things you now need on repeat prescription.

 

[Bruce Stephens]

Your GP needs to send off a registration to the authority that deals with it for a medical exemption card, since all our prescriptions are free of charge. I don't know who it is now that issues them since they changed it after I had my last one,

It's explained here, https://www.nhsbsa.nhs.uk/exemption-certificates/medical-exemption-certificates
As far as I remember it all goes through your GP surgery, so they should give you the application form which you return to them. And for renewal it's similar (though probably with a slightly different form).