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Type 1

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Lindiloo

Active Member
Relationship to Diabetes
Type 1
Hello everyone

I posted a few weeks ago when I was first diagnosed with type 2 diabetes. - After seeing specialist who was very rude - he wouldn’t listen to me as I thought I was type 1. Anyway after insisting on antibody test - it has now been confirmed I’m type 1

4 weeks ago sugar levels were 15 and over with hbc1/a of 132

sugar levels now 5/6/7 and sometimes 8 at most. Take in morning and then Before I eat and 2 hours after meal (sugar levels are stable after eating and never rise more than 2 - mostly 1 or lower)

problem is I’ve been told all clinics are closed because of cocos virus. Could anyone advise what I should be looking out for - I know it’s high sugar levels -

many advise would be welcome
 
Some clinics may not be seeing people in person, but have you got a contact number or email you could contact and maybe have a phone consultation with a nurse.
 
You should still have a contact number for your diabetes team and still be in regular contact with them for now as that's vital when so newly diagnosed

I don't quite understand what you mean by advising you what to look out for and I'm sure I won't be the only one so maybe you could clarify what it is you actually want to know/want advice on
xx
 
Glad to hear that you now have the correct diagnosis @Lindiloo
You are already doing regular blood tests before and after your meals, and the outcomes seem consistent and a lot lower than before the change of diagnosis to T1

I am sure that your team will have already stressed the importance of having hypo treatment with you at all times. I have them (jelly babies) everywhere around the house, just to save me trekking downstairs if I get caught out whilst working in the attic etc.

In the early days it can be useful to keep a record of the amount of carbohydrates you are eating along side you BG levels around each meal. This can help you find out which particular foods have what effect on you. It can be so different for each of us.

Which insulins are you using?
Are there particular aspects of your management you would like help with.
 
Well done for pressing to get an accurate diabetes classification @Lindiloo

It is unfortunate that it has come at this very difficult time. Have you got contact details for your DSN? DSN’s are often your best contact for immediate suggestions and advice.

You might also find some useful pointers in the ’useful links’ thread
forum.diabetes.org.uk

Useful links for people new to diabetes

These links provide useful information, particularly to those newly-diagnosed. You can also browse the Recommended Books and Links sections for further information :) Contents: Type 1 Section Insulin Pumps Section Type 2 Section General Help and Information Section Complications and screening...
forum.diabetes.org.uk forum.diabetes.org.uk

In particular you might want to consider this T1 education course which is very similar to DAFNE

Bertie Diabetes

www.bertieonline.org.uk www.bertieonline.org.uk

And keep asking questions here!
 
SB2015 said:
Glad to hear that you now have the correct diagnosis @Lindiloo
You are already doing regular blood tests before and after your meals, and the outcomes seem consistent and a lot lower than before the change of diagnosis to T1

I am sure that your team will have already stressed the importance of having hypo treatment with you at all times. I have them (jelly babies) everywhere around the house, just to save me trekking downstairs if I get caught out whilst working in the attic etc.

In the early days it can be useful to keep a record of the amount of carbohydrates you are eating along side you BG levels around each meal. This can help you find out which particular foods have what effect on you. It can be so different for each of us.

Which insulins are you using?
Are there particular aspects of your management you would like help with.
Click to expand...
This is problem - no insulin My doctor has said that all clinics closed but she will write to them
 
@Lindiloo No insulin? Can’t your GP prescribe some, in discussion with your clinic? Does your GP have a nurse with an interest in diabetes, or whatever they call them, who could help?
 
And can you yourself phone your local clinic and get some support? Mine has a number for DSNs and they’re excellent and very good at sorting any issues.

Edited to answer your question. Yes, with no insulin you should be looking for high sugars and ketones.
 
Lindiloo said:
This is problem - no insulin My doctor has said that all clinics closed but she will write to them
Click to expand...

What??!? How much do you have left?

Your GP should certainly be able to prescribe insulin.

You may also be able to get an emergency supply from a pharmacist.

You should call your GP as soon as possible.
 
I read it as Lindiloo not having any insulin at all, having not been prescribed any yet. Really worrying, if that’s correct.

When I was diagnosed, my blood sugar ‘went’ quite suddenly, and I developed ketones.
 
everydayupsanddowns said:
What??!? How much do you have left?

Your GP should certainly be able to prescribe insulin.

You may also be able to get an emergency supply from a pharmacist.

You should call your GP as soon as possible.
Click to expand...
Haven’t been put on insulin yet - diabetic clinics closed at hospital - doctor trying to contact someone
 
Inka said:
I read it as Lindiloo not having any insulin at all, having not been prescribed any yet. Really worrying, if that’s correct.

When I was diagnosed, my blood sugar ‘went’ quite suddenly, and I developed ketones.
Click to expand...
Were you treated as type 2 to start off with - at beginning I had ketones and was sent straight to a and e and had bloody test and they said I was type 2. A week later no sugar in urine or ketones. Have worked very hard to get sugars down to 5/6/7 and then got call this morning saying antibody test positive
 
Lindiloo said:
Haven’t been put on insulin yet - diabetic clinics closed at hospital - doctor trying to contact someone
Click to expand...

This is quite worrrying @Lindiloo - but it may be, with your recent BG successes, that you are LADA rather than classic T1 and still have a degree of beta cell action? That is a guess though, and it’s almost unheard of to diagnose T1, and then not make insulin available 😱

You should certainly try to get hold of insulin as soon as possible though, and keep a very close eye on those BGs.
 
Lindiloo said:
Were you treated as type 2 to start off with - at beginning I had ketones and was sent straight to a and e and had bloody test and they said I was type 2. A week later no sugar in urine or ketones. Have worked very hard to get sugars down to 5/6/7 and then got call this morning saying antibody test positive
Click to expand...

I was treated as an “atypical presentation” apparently. My pancreas held on for quite a while, and, even when I started insulin, I could still miss an injection and have a blood sugar in range. I don’t know if it was a long honeymoon period, or a stuttering pancreas, or what, but the opinion was that I could on occasion still control my blood sugar without insulin, even if it was in an erratic way, and with swings outside the normal range.

However, once on insulin I felt a lot better. I occasionally missed injections (nobody should do this without medical support - very important) but my consultant said it was better to have insulin, even if in small amounts, as it helped preserve the failing beta cells longer. I believe this and my experience shows this to be true as far as I’m concerned.

I was tested to see if I could be MODY, but I’m definitely Type 1.

If I was you, I’d be pushing for insulin. It might be you only need tiny amounts or need it occasionally, but not having it seems potentially risky to me, and things can change very quickly. I find it hard to believe there aren’t DSNs available for you to talk to. I got a routine letter from mine a week or two ago. Maybe they’re not running clinics (makes sense) but I would think they’re still available at the end of a phone.
 
I honestly have no idea if they are or not - but it did strike me that all the specialist nurses from whichever field they qualified as specialists in, are first and foremost qualified nurses - so surely they'll largely all be redeployed wherever they can help in the hospitals?
 
Very possible @trophywench but I would guess they’re still picking up voicemails at least? I’m on a pump and my recent letter was a routine pump one. Somebody wrote that (it was signed by a DSN). If I had pump issues, I’d be phoning my normal contact number and haven’t been told not to. I would guess the DSNs are still involved in (some) diabetes work. Perhaps it depends on the hospital and region?

I also suggested the GP diabetes interest nurse. Can’t remember their official title. Obviously not an expert but mine prescribes insulin (largely for Type 2s).
 
Have you had any success in contacting someone about having access to insulin?
I know you are testing and at present keeping things in range, with no ketones.

As @everydayupsanddowns has suggested you may have the slow onset form of T1 (LADA).
If that is the case it will be those beta cells that you still have releasing some insulin.

I think it would still be good to talk to someone. I had a call from the Practice D Nurse yesterday just to check that all was well. In ours they are still working but all on the phone. I know that it is likely that if you phone there will be a queue but worth waiting, especially as you are worried about this.
 
So update on me

I asked on my slimming world fb page is anyone could help regarding my struggle with doctors not helping me. - and I was extremely lucky that one lady was a diabetic nurse - long story short. I have been to hospital in woolwich today and have been looked after by nurses and a diabetic consultant - I am now on insulin (5 x a day ) and have been taught As much as I could today ). I’m feeling so relieved the help I was given was amazing

so hopefully I get on ok with insulin and obviously will learn as I go along
 
Thanks for the update @Lindiloo

Glad you’ve been treated at last.
 
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