Newly Diagnosed

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Narrow

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Type 1.5 LADA
Hi all,

I've been recently diagnosed - had a HbA1C blood test a couple of weeks ago, that came back with a result of 111, and followed up with another one a week later that was 110. At first the GP thought type 2, then a couple of days ago some further blood tests came back and they now think type 1.

At first they said their diabetes team would see me in a week, but I've heard nothing from them so far, although I have got a referral to a hospital for late January. They also didn't prescribe anything for my blood sugar, which was worrying me a bit, however I managed to get a weekend emergency appointment today and the doctor there put me on metformin twice a day until something else is sorted out.

I'm a bit thrown by all this, and also not sure if my GP and/or the diabetes team are being a bit useless or if that's a normal timescale. Just looking for any general advice on how to navigate these very early stages.
 
Welcome to the forum
If you have been diagnosed as Type 1 then it is important you have appropriate medication which is almost certainly to be insulin which will be needed asap especially with an HbA1C as high as 111mmol/mol.
The end of January is really not good enough. I suspect metformin will not do much good as it is essentially a Type 2 medication. Do you have a means of testing your blood glucose with a finger prick and for testing for ketones with urine dip sticks as with high blood glucose you are at risk of DKA which is serious and requires immediate medical attention.
You should watch your carbohydrate intake as all carbs convert to glucose so until you get some insulin then you need to be careful. Make sure you drink plenty as that will help flush excess glucose from your system.
 
Thanks for the welcome and advice

Unfortunately nothing for testing. When they told me a couple of days ago it was probably type 1 not 2 they made it sound like someone would be getting in touch before the weekend, which hasn't happened. To be fair the GP sounded horrified by late January, so they're definitely not leaving it at that. I can see in their notes requests for a more urgent response, it just hasn't happened yet.

I had been trying to cut the carbs right down since they mentioned it was possible type 2, so I'll keep doing that and drinking lots and phone the GP on monday.
 
I'd push to be seen asap, and keep carbs down. Meats, eggs, most cheese, spinach, rocket are all really quite low carb. I was diagnosed at a similar level and put on metformin and glycaside which reduced my levels until i was seen by the hospital team and put onto insulin.
A way to test your sugars (blood testing strips) will be essental as soon as you are on any medication that reduces blood sugars, and would be useful before that to see the effect low carb is having.
Once you are on insulin you no longer need to eat low carb.
And make sure you get prescribed a continous glucose monitor by the hospital team
 
If you are type 1 then you need to be on insulin, now. 111 is a very high hba1c, and needs attention. The main concern would be you are at risk of DKA, which, without meaning to frighten you, can be very serious indeed. You need to push to be seen urgently, and issued with appropriate medication and a means to test your blood. If you have the symptoms of DKA, https://www.diabetes.org.uk/guide-t.../diabetic_ketoacidosis#DKA signs and symptoms please get to A&E immediately.
 
Welcome to the forum @Narrow

I share the concerns of the forum members who have already commented (and your GP too by the sound of things). LADA is a form of T1, and really don’t think it can’t be left until January(!) with no monitoring and an HbA1c in 3 figures. 😱

You can get urine ketone sticks from a pharmacy for around £5 for a pot of 50, which might give you a little forewarning of any ketones that may be brewing.

Do keep an eye out for any of those symptoms of DKA, breathlessness, acetone/pear drop breath, abdominal pain, nausea, or vomiting. DKA isn’t something to be trifled with!
 
I’d phone your GP first thing tomorrow and ask for an emergency appointment @Narrow I’m presuming the late Jan appointment at the hospital is because the hospital assumed your GP would be prescribing some insulin in the meantime. There are guidelines somewhere about the treatment of suspected Type 1. I’ll see if I can find them. They stress the urgency of treatment.

Follow the advice above about ketones and DKA. Personally I wouldn’t mess around with reducing carbs, I’d focus on getting seen asap.
 
Hi Narrow,
Sorry about your recent diagnosis and echo others thoughts that 111 is very high and needs attention very quickly hence would push for a much earlier appointment.
As others have said GPs are not always the most proactive or productive in terms of progressing Type 1 cases.
Although my own GPs have a very good and supportive Diabetes team the first thing they did was to contact a community based DSN team to handle my case.
So I got my insulin and Libre literally within days of my diagnosis and my level was 100 so less than yours.
I cannot empathise how important it is to try and get your head around your new situation ASAP as even with a very good support network it is overwhelming in terms of info overload in the first few days.
I was only diagnosed in August but have a healthcare background and understand the condition.What I can truly say is the managing the condition by a combination of medication/ diet and exercise is key.
The influence of each will vary from Individual to individual depending on the exact nature of their condition,their lifestyle,motivation,discipline,ability to do exercise etc and of course any co morbidities and or mental well being issues etc.
However,the available treatments such as insulin are extremely effective and the range of support items like CGM etc plus the advice and support from this forum is invaluable.
It is possible to manage this condition but do not underestimate how challenging and unpredictable it will and can be and do not expect perfection as again you have to juggle these issues with trying to live as full a life as possible.
GL
 
Hi all,

Thanks for all the advice. I was worried about whether I felt thirstier than normal , but had no other symptoms and felt pretty good, so I called NHS 111, who just got back to me (18 hours later!) to say they didn't think it was urgent and contact my GP tomorrow. Also, not feeling as thirsty today. I'm going to call my GP first thing tomorrow and push them about getting me in contact with the locat diabetes team, and I'll also go get something for measuring blood sugar. I will look out for the DKA symptoms everyone's mentioned.

Thanks all.
 
Glad you were able to get assessed by NHS111 eventually 🙂
 
I am another late developer with T1 (LADA) and I am surprised that they have not given you insulin immediately. with such a high HbA1c you are in danger of going into Diabetic Keto Acidosis. If you have got some keto stix you need to be monitoring these. if you start to feel unwell do go to A&E and explain your situation.

Please let us know ho you get on.
 
Thought I'd update how I've got on. I have finally, after several conversations with people at my GP, and a couple of visits to A&E, been referred to a hospital diabetes team today. Can't see them until Monday morning, but the very helpful doctor in A&E did some blood tests, said I should be fine for the weekend, and made me an appointment for first thing Monday.

Thanks for all the advice and the encouragement to nag the GP. I think I'll be changing practices after this. I spent much of this morning with them trying to persuade me that despite the fact the GP I talked to the day before saying I should be urgently referred to a same day hospital team today, that wasn't possible and I should just wait until the referral I had booked for January.
 
Well done on pushing for treatment. I know it isn't easy, but sadly in the current climate you have to fight your own corner to get what you need. Hope the appointment on Monday is useful and they get you started on insulin.
 
Re the changing practices thing - as you mentioned you'd seen on the GP notes 'references to the urgent appointment' issue - perhaps it would be better to ask the surgery what was actually done after that GP 'was horrified' when he found out how far away the date was? rather than assume nothing was.

My husband had a totally unrelated glitch about something he needed along the line that the hospital had recommended and told him to 'just ask your GP to get it for you'. Hence he asked the GP, who said well yes, I agree that I can do that of course because it is true. However the only problem is, the surgery will have to foot the bill whereas if they wrote me a letter asking me to get you one, the hospital would! - so - are you seeing them again any time soon? Well he was and did, when he told them what happened and the consultant was horrified on that occasion, but solved that little glitch pdq by sending a letter. Now when anyone else needs anything extra/different - they automatically put it in the letter they send to the GP surgery after any consultation at the hospital. Send that one electronically, with a copy in the post to the patient.
 
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