Consultant grading

[Mrs HJG]

Has anyone had experience of being graded before seeing an endocrinologist and whether my 'presentation' would class me as 'urgent' or 'non-urgent'? Please excuse my lack of knowledge if this happens to everyone.

Brief recap - HbA1c 129.5 mid December - told suspected T1 by local diabetes nurse, put on 8 units/day insulin immediately, then reverted to T2 the following week by the hospital team but C-Peptide and GAD tests requested. Metformin started and changed from Levemir to Humulin M3.

BG reduced in 3 weeks to 'normal levels' with 8, 10 then 6 units of insulin/day and 2 Metformin, so insulin stopped as frequent low 4s, then C-peptide result 'confirmed' day after as T2 before New Year.

BG still generally in 4s, 5s and the odd low 6 on 4 Metformin, reduced carbs (100-150g/day) and increased walking exercise only. Testing again 5 times a day, (before meals and bed, and 2 hours after tea).

However all autoimmune results came back positive last week, so back to probable T1/not T2, still only on Metformin and I have no idea if I will make it onto the 6 week, or 6 month wait list and won't know for at least another week or so according to the hospital secretaries. Driving myself round the bend waiting.

I suspect LADA. Been told by the nurse that only a consultant can make a genetic diagnosis, so I must wait; it obviously feels all-consuming and urgent to me, but in the wider scale of things maybe not so much? DVLA still think I am on insulin as I haven't been able to get through to amend, so not urgent to update them again, so don't think I need to do anything else at the moment.

Both blood and urine were simply overnight fasting as not asked to do anything different:
C-peptide 7.52
Creatinine 9.5
Ratio 0.79

GAD Ab 220.8u/ml
ZnT8 Ab 895.6u/ml
1A2 Ab 1664.1u/ml

Words of wisdom much appreciated. - feels like this is the only place anyone is listening, thank you.

 

[Antje77]

I suspect LADA. Been told by the nurse that only a consultant can make a genetic diagnosis, so I must wait; it obviously feels all-consuming and urgent to me, but in the wider scale of things maybe not so much?

Seeing as your treatment works very well for now, it isn't very urgent from a medical point of view. Diet and metformin are fine as long as it's working, it's not uncommon for LADA's to have a period of not needing insulin after diagnosis.

From an emotional point of view, I can imagine it is somewhat urgent, as I think what you most need now is a good talk with the consultant about what to expect, and a plan of action on what you're to do as soon as you see your BG's go up.

So I hope you can get an appointment rather sooner than later.
In either case, give them an urgent call if you see high numbers again, as that is most likely the point at which your treatment needs to be adjusted.

Wish you all the best, keep asking questions!

 

[sunspots]

From your description, and bearing in mind what a sorry state the NHS is currently in, I wouldn't bank on sooner rather than later and would hunker down for the 6 month wait unless your bg shoots back up again. I would suspect 6 week waits are for uncontrolled cases, brittle diabetes with repeated hypos etc. Diagnostic issues can wait that bit longer in medical eyes that these other issues.

But hang on in there. You're doing well and appear to have good primary care there! Best of luck.

 

[Mrs HJG]

Thank you @Antje77 and @sunspots I am so wound up 'not knowing' it's all I think about.

Unfortunately the Diabetes Nurse at my surgery has said I am now in the care of the hospital team, but they have said that until I am officially diagnosed by the consultant as T1 they can't do much. So it seems that I'll only get someone to speak to me if/when things start getting out of hand

 

[Antje77]

they have said that until I am officially diagnosed by the consultant as T1 they can't do much. So it seems that I'll only get someone to speak to me if/when things start getting out of hand

Won't the consultant have a look at your lab results?

 

[EllieM]

On a practical note, I guess you are testing blood sugars so you'll know if your insulin starts to decline. The only life threatening thing that occurs to me is diabetic ketoacidosis

Diabetic ketoacidosis - NHS - NHS (www.nhs.uk)

which would happen if/when you just weren't producing enough insulin to cope. Have you been supplied any mechanism for testing ketones? (Basically if you get high bgs plus high ketones you dial 111 and get that insulin.) In any case, as you are testing your blood sugars you'll know if that becomes a potential issue.

Good luck, and I feel your frustration on the lack of medical follow up, but it sounds like you have the right treatment to be going on with. (Disclaimer, I am not a doctor).

 

[Mrs HJG]

Won't the consultant have a look at your lab results?

At this point I assume so, they were tagged onto the referral letter, (but that was also full of errors and called me by the wrong name a couple of times!), but no-one is telling me anything or willing to commit to giving any advice in case it is wrong.

I have so many questions already, and if I have to wait 6 months the appointment will need to be about 3 weeks long!

 

[Mrs HJG]

Thanks @EllieM I have some ketone strips for my Glucomen thingumy if I need them; even at the beginning when I had BGs over 20 ketones were still under 1 but if I start getting BGs into the 8s and 9s I'll start checking again.

My kitchen counter looks like the pharmacy's back room I have accumulated so much testing gear, the new computer system at my doctors obviously didn't get the memo about stockpiling! I'll be good for a couple of months if there's some global catastrophe and I'm stuck at home... oh, yeah...

 

[EllieM]

but if I start getting BGs into the 8s and 9s I'll start checking again.

Prepares to be corrected by the more knowledgeable, but I think you need to be at least in double figures before you need to worry about ketones.

 

[MrsA2]

I have so many questions already, and if I have to wait 6 months the appointment will need to be about 3 weeks long!

But by then you will have researched and found the answers and can re-educate the local nurse, if not the consultant too!
I've been ditched by NHS but it doesn't stop me taking control of my diabetes, and I'm probably the better for it.
You are doing well, just hang on in

 

[Hertfordshiremum]

Thanks @EllieM I have some ketone strips for my Glucomen thingumy if I need them; even at the beginning when I had BGs over 20 ketones were still under 1 but if I start getting BGs into the 8s and 9s I'll start checking again.

My kitchen counter looks like the pharmacy's back room I have accumulated so much testing gear, the new computer system at my doctors obviously didn't get the memo about stockpiling! I'll be good for a couple of months if there's some global catastrophe and I'm stuck at home... oh, yeah...

Hi Your readings of 5’s and 6’s are great. As Ellie says your worry would be diabetic ketoacidocis Do look this up so you are aware, do not panic about it. It only usually happens when you have an infection eg UTI, infected cut, insect bite, COVID Some people seem more susceptible than others but just watch out for this. I have the glucomen ketone testing meter, I am told to check if my blood sugars are 13 or over. Hope you get your appointment soon how about reading up in the meantime? If you are eating low carb you might be interested in Dr Bernstein diabetes solution He also explains a lot of the science. Might answer some of your questions, I probably learnt more from this book than the grumpy consultant I finally saw!

 

[Mrs HJG]

Prepares to be corrected by the more knowledgeable, but I think you need to be at least in double figures before you need to worry about ketones.

You are probably right, but if I spot ketones over 1 I'll be double wary - I don't need the shock of reaching BGs of 10 and ketones already at a more alarming level. If I go through strips at an uneconomical rate, they might think giving me a bit of 'education' would be more cost effective if nothing else!

 

[EllieM]

You are probably right, but if I spot ketones over 1 I'll be double wary - I don't need the shock of reaching BGs of 10 and ketones already at a more alarming level. If I go through strips at an uneconomical rate, they might think giving me a bit of 'education' would be more cost effective if nothing else!

Ketone strips are very expensive, you may have difficulty getting them on prescription. (I get a pack of ten every 3 months, but I'm in NZ). You can buy cheap urine testing strips from a chemist. I typically run on ketones of up to .7, just from my fairly low carb diet. I only bother to test for ketones if I feel unwell, but I am a very low risk DKA person (haven't ever had one in nearly 52 years of T1 and only got given ketone testing strips a couple of years ago when I mentioned to my consultant that I didn't test for them.)

 

[Antje77]

You are probably right, but if I spot ketones over 1 I'll be double wary - I don't need the shock of reaching BGs of 10 and ketones already at a more alarming level. If I go through strips at an uneconomical rate, they might think giving me a bit of 'education' would be more cost effective if nothing else!

There really is no need to test for ketones as long as you're not going over 13 for hours!
I'd move the ketone strips to the back of the cupboard for now, testing for ketones is not something we do regularly as a rule.
I never have.

 

[Mrs HJG]

@Hertfordshiremum thank you - I know so much more than I did a month ago, and before that I knew nothing except 'diabetics don't eat sweets'! Fortunately my eyesight has returned now, as I couldn't google anything for a few weeks, but as I still don't know where I really stand, it is very hard to know what is relevant and so back full circle to wanting/needing to see a consultant asap.

As with everything there's so much info 'out there', including the irrelevant, bad or plain wrong, but I do not have enough confidence to dismiss or know what's really relevant to me yet.

I am frequently back to being convinced that my enormous immune response to my first covid jab and super high covid antibodies a week later, (I do the ONS study taking a PCR and blood test each month), may have turned my whole immune system against me - all my original tests were done 10 days after my booster, would that impact the figures, I don't know, and it's still too early for any real time research to put my mind at rest. If this sounds like I've latched on to some bonkers conspiracy theory, moderators please delete this bit - I'd take a 4th jab tomorrow if offered!

 

[Mrs HJG]

@EllieM @Antje77 I have a couple of dozen, and hoping I won't need them, but that is only as I have had info from you/this site - not the doctor/nurses, which can't be right!

 

[Antje77]

If this sounds like I've latched on to some bonkers conspiracy theory, moderators please delete this bit - I'd take a 4th jab tomorrow if offered

Wild thoughts and theories are perfectly acceptable when just having had a rather serious diagnosis.
And who knows,your jab may have played a role in hurrying what was happening anyway.

However, the part which is absolutely clear is having had seriously high bg, plus having positive antibodies.
I'd go from here, and try to use your energy to learn all you can about managing diabetes.

And for today, what about turning off the internet, grab a nice book an a cup of tea before calling it a day?