Consultant grading for diagnosis - update

[Mrs HJG]

Here I am again ready for a good moan/cry - I called the NHS booking team this afternoon and was told that my diagnosis referral to the consultant had been graded as 'routine', and currently in excess of 12 months waiting time for an appointment.

I have put in for call backs from both my local diabetes nurse and the hospital team tomorrow as neither will take responsibility, won't refer me to the nutritionist or answer my questions until I have an official 'genetic' diagnosis from the consultant.

Background - I was confirmed via c-peptide as T2 after initially thought T1, then T2 by nurses; insulin started, then stopped; 4x metformin and lowish carb diet for now and average BG 5.2 for January, and then boom, positive antibody results (all 3) to put everything up in the air again and a referral sent from the hospital nurse team after my manic phone call (and their quick chat with the same consultant!).

I can't wait; the last 8 weeks have been hell for me and all those around me; so I will be asking for a referral letter from my doctor to try and get funding from my work's friendly society, (similar to private health cover but only available for some conditions and if NHS timescales are unreasonable, ie. 5 weeks!), in the hope that I can get answers.

I know if I jump the queue and see the same consultant I will feel a bit 'bad' but mostly relieved, but I do wonder if I had not been tested until New Year and gone hell for leather on the Christmas treats and ended up in hospital, whether I would have been seen sooner?

Have I fallen down a gap in the 'grader's understanding' or is this normal? I have had to stop googling as I can't find anyone with similar figures/situation to mine and its doing me no good

HbA1c 129.5
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

 

[Antje77]

Are your daily blood glucose numbers still around 4 to 6? (https://www.diabetes.co.uk/forum/threads/consultant-grading.186202/)
I'm not very knowledgable of the health care system in the UK, so I wouldn't know what is normal or to be expected, although I think it's very strange you won't get an appointment to talk over your test results.

However, if you did get an appointment, there would be no action needed, because of your normal glucose levels.

I have put in for call backs from both my local diabetes nurse and the hospital team tomorrow as neither will take responsibility, won't refer me to the nutritionist or answer my questions until I have an official 'genetic' diagnosis from the consultant.

I'm not sure what you mean with a genetic diagnosis. Do you mean autoimmune?
Either way, yes, I would expect a follow up on your blood tests.

I hope you'll find a way to get to speak with someone about what to expect, and I hope someone more versed in the UK health care system will have more useful answers for you shortly!

Keep a close eye on your numbers, and don't hesitate to sound all kinds of alarm bells should they go up!

 

[EllieM]

I'm so sorry @Mrs HJG , I would be livid in your position. If you are truly LADA (and sounds like the NHS won't tell you for a year) then it's quite possible that you'll progress to needing insulin in that time. I guess a trip to the hospital with diabetic ketoacidosis would get you the diagnosis, but that is something that should and can be avoided.

If you keep monitoring your bgs you should hopefully be able to tell if/when you need insulin but I am shocked by your (lack of) treatment by the NHS.

Is it normal? I have no idea, but I hope not.

 

[Mrs HJG]

Thank you @Antje77 & @EllieM Yep my BG is staying pretty stable mid-4s & 5s, (post-tea sometimes, but rarely, high 6s if I have experimented with something new/bad), so I am not particularly worried at this minute, but not knowing if it could suddenly go horribly wrong or will take a while is a constant, all-consuming thought. Every test makes me worry I'll see higher figures than yesterday.

I was told that only the consultant could diagnose 'genetic' diabetes, which I have taken to mean T1/auto-immune as opposed to T2/lifestyle diabetes, but yes, a bit more info from the nurse would have been helpful.

It's so frustrating as I was given c-peptide and GAD tests immediately when others seem to have had to fight to get them, but then when the results came back and weren't quite as expected they have withdrawn their interest. From the LADA forum posts it seems most have a battle to get the tests at all, not to have the tests but no-one willing to actually tell me what they mean and think is going on.

I know nothing about what could happen or to look out for if I am ill, (I didn't feel ill when my BG was in the 20s!), if I should have a pneumonia jab this winter, how paranoid I should be about catching covid, or anything else, whether I should have some insulin in the fridge just in case, or taking a low dose to preserve the beta cells I have... I asked the hospital team but they won't answer without the diagnosis - what a bonkers way to run the NHS.

I will be asking everyone everything tomorrow but suspect I will end up being my pleasant happy self on the the phone and getting nowhere, as I am scared if I p*ss them off too soon, I'll never get a call back. If this was my electricity supplier I would be 'asking to speak to the manager, swapping to another provider and being one of 'those' customers'!

 

[Mungobean]

Crikey! A year seems an awfully long time to wait. I had to fight for the c pep and a gad tests and then my GP didn’t know how to interpret the results, so referred them to the community diabetes team, and I got a telephone Apptmt with the diabetes consultant just before Christmas - around a week on from my gp asking them to look at my blood results. Maybe someone feels guilty because I had diabetes according to my hba1c for a year before anyone told me!

 

[Mrs HJG]

@Mungobean you are probably right! Glad you got sorted in the end. I've made the schoolgirl error of coming over as competent, and intelligent and able to handle it all, when in fact I need all the hand-holding there is, or rather should be! I don't deal well with uncertainty, and the thought of a 6 week wait was getting me wound up, but 12 months - my mum got a knee replacement during covid quicker than that!

 

[Hopeful34]

Do you have, or could you get the consultant's email address, and send him/her the info that you posted above and detailed records of your finger prick blood tests, and ask for a diagnosis, expressing your fears of what may happen if you don't get one soon, and turn out to be T1, and how not knowing is affecting your mental health? You could also send a copy to PALS at the hospital, and your gp etc. It may not help, but you never know ..... At least you'd feel you'd done something.

 

[Mungobean]

@Mungobean you are probably right! Glad you got sorted in the end. I've made the schoolgirl error of coming over as competent, and intelligent and able to handle it all, when in fact I need all the hand-holding there is, or rather should be! I don't deal well with uncertainty, and the thought of a 6 week wait was getting me wound up, but 12 months - my mum got a knee replacement during covid quicker than that!

I must admit that I was a little irked when I was an in patient recently for something else and my consultant asked if I was sure I was T1, as I was a bit old to be diagnosed! I replied that my consultant was certain as was the diabetes consultant sent to see me while I was an in patient! (He came to at my gastro’s request, and messed around with my insulin regime!)

 

[Antje77]

I was told that only the consultant could diagnose 'genetic' diabetes, which I have taken to mean T1/auto-immune as opposed to T2/lifestyle diabetes

This is very puzzling. Genetic diabetes would be MODY, not LADA/T1 (first A in LADA standing for autoimmune), and you have the antibodies to show an autoimmune condition. It just doesn't make sense to look into 'genetic diabetes' when you've already ticked the boxes for the autoimmune version.
Besides, MODY strongly runs in families, it's something to look into when there are a remarkable numbers of family members with diabetes. My guess is that someone was out of their depth when informing you.

It's so frustrating as I was given c-peptide and GAD tests immediately when others seem to have had to fight to get them, but then when the results came back and weren't quite as expected they have withdrawn their interest. From the LADA forum posts it seems most have a battle to get the tests at all, not to have the tests but no-one willing to actually tell me what they mean and think is going on.

This is just so strange!
To my feeling, something must be going wrong in communications somewhere.

 

[Bubbleblower]

I don't deal well with uncertainty

Nobody does.

You are really doing fantastic and you also have a great consultant. According to the experts on this forum you have type 1, but that is not the end of the world, especially if you keep your BG where it is. Don’t let all the nonsense on the internet get to you and try to get advice from medical professionals instead, may be Antje77 knows a forum like this one.

I used to have similar figures to yours, you're not alone.

 

[Mrs HJG]

@Hopeful34 the loooooong email I sent to the hospital team was forwarded to be attached to my file and had all that in, but I don't expect the consultant to see it until 2 minutes before I see him. I will quiz the hospital nurse tomorrow as to why he was the one to say I needed to be referred as I had only seen nurses, and he was sat in the room next door to her, but a minion has since put me on the routine list!!

 

[Mrs HJG]

@Bubbleblower I have no idea if he's a great consultant or not and won't know for another 12 months or so, unless the friendly society will fund me seeing him or someone else! I don't think the DVLA or my employer rate this forum as highly as I do for a diagnosis so I need to see a consultant so at least one area of the NHS diabetes support network can get on and be a bit supportive.

This constant worry was bad enough before I was told I had another year to wait for a formal diagnosis; its messing with my family life and stressing not only me but my parents, husband and kids, as well as affecting my work - I was off for a month as I couldn't see (no-one warned me about that) and as far as they know, I could have made the whole thing up!

 

[VashtiB]

All I can say is that it must be really tough for you. I can't get my head around not being able to see the dr for a year- I just don't get it. I really hope that the friendly society can help you.

Meanwhile good luck with keeping your levels down and a virtual hug!

 

[Antje77]

Just a thought.
Have you had a more recent hba1c reflecting your current numbers or is your last hba1c the 129 one?
If the latter, when you speak or email to anyone, you might want to emphasise that your hba1c was 129 and you tested positive for 3 different antibodies when testing for type 1, and you won't get an appointment for a year.

This should get someone's attention.

 

[JayAmerican]

Here I am again ready for a good moan/cry - I called the NHS booking team this afternoon and was told that my diagnosis referral to the consultant had been graded as 'routine', and currently in excess of 12 months waiting time for an appointment.

Do you have any option of private insurance in the UK? I can't imagine being in such a ridiculous waiting line for critical medial diagnoses. Once I got my own T2 diagnosis from my primary GP, I quickly also got an appointment with a diabetic specialist to investigate the risk of LADA, and do thorough checks of my pancreas and liver to make sure all other body functions are normal. There's a big difference between insulin resistance and the body not making enough insulin and I'm surprised they gave you insulin before even knowing.

I would recommend, at least for your sanity while you wait for proper appointments and tests, to get a blood meter and test strips. Preferably go with the option of the cheapest test strips even if the meter is expensive, because as you learn what to eat you'll want to spend 30-60 days testing your blood: In the morning before you eat (fasting glucose), before any meals, and 90 to 120 minutes after meals. Keep a log, usually the meters will keep one for you, or get a phone app. You'll learn a lot while also getting a grasp of your situation.

Don't worry, if it's T2 then it's mostly diet control. Just absorb the low-carb guidance here on the site. If it's LADA, I *think* you will know quickly because anything that shoots your blood up won't come down much after even 2 hours, so either way a low-carb diet is important. It's also important to pay attention if your blood sugar goes way lower than normal, which would be the case if you're over-compensating, in which case SOME carbs will be fine but try to get them from green vegetables and fiber-rich fruits and not refined sugars or wheat.

 

[DEBBIESCOTT]

Here I am again ready for a good moan/cry - I called the NHS booking team this afternoon and was told that my diagnosis referral to the consultant had been graded as 'routine', and currently in excess of 12 months waiting time for an appointment.

I have put in for call backs from both my local diabetes nurse and the hospital team tomorrow as neither will take responsibility, won't refer me to the nutritionist or answer my questions until I have an official 'genetic' diagnosis from the consultant.

Background - I was confirmed via c-peptide as T2 after initially thought T1, then T2 by nurses; insulin started, then stopped; 4x metformin and lowish carb diet for now and average BG 5.2 for January, and then boom, positive antibody results (all 3) to put everything up in the air again and a referral sent from the hospital nurse team after my manic phone call (and their quick chat with the same consultant!).

I can't wait; the last 8 weeks have been hell for me and all those around me; so I will be asking for a referral letter from my doctor to try and get funding from my work's friendly society, (similar to private health cover but only available for some conditions and if NHS timescales are unreasonable, ie. 5 weeks!), in the hope that I can get answers.

I know if I jump the queue and see the same consultant I will feel a bit 'bad' but mostly relieved, but I do wonder if I had not been tested until New Year and gone hell for leather on the Christmas treats and ended up in hospital, whether I would have been seen sooner?

Have I fallen down a gap in the 'grader's understanding' or is this normal? I have had to stop googling as I can't find anyone with similar figures/situation to mine and its doing me no good

HbA1c 129.5
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

This is just not right, this needs to be sorted & 12 months wait is ridiculous, haven’t you got a friendly DSN who can get you upgraded, my diagnosis is in question too, & been ringing the appointment line for a couple of months, last time I was tasked if things had got worse & I explained what was happening (different to you) & she told me to speak to my DSN to see if she could do anything, week later & a telephone appointment came through for tomorrow, hope you can get this resolved

 

[Mrs HJG]

Hi @VashtiB Thank you. Well I suppose the world has gone mad

 

[Mrs HJG]

Just a thought.
Have you had a more recent hba1c reflecting your current numbers or is your last hba1c the 129 one?
If the latter, when you speak or email to anyone, you might want to emphasise that your hba1c was 129 and you tested positive for 3 different antibodies when testing for type 1, and you won't get an appointment for a year.

This should get someone's attention.

I am due a second HbA1C in March (at 3 months from the 129), and I'll be chasing for that to be taken dead on 90 days! Oh I have been going through today's conversations in my head all night - I am determined not to be fobbed off.

 

[Mrs HJG]

Do you have any option of private insurance in the UK? I can't imagine being in such a ridiculous waiting line for critical medial diagnoses. Once I got my own T2 diagnosis from my primary GP, I quickly also got an appointment with a diabetic specialist to investigate the risk of LADA, and do thorough checks of my pancreas and liver to make sure all other body functions are normal. There's a big difference between insulin resistance and the body not making enough insulin and I'm surprised they gave you insulin before even knowing.

I am part of a friendly society and hoping that will step in; I can't afford anything else.

I would recommend, at least for your sanity while you wait for proper appointments and tests, to get a blood meter and test strips.

I am testing pre-meals, after dinner and before bed - one bonus of the initial T1 panic was being given the kit, and I have been getting strips and lancets as frequently as my prescription allows before they cut me off again!

Don't worry, if it's T2 then it's mostly diet control. Just absorb the low-carb guidance here on the site. If it's LADA, I *think* you will know quickly because anything that shoots your blood up won't come down much after even 2 hours, so either way a low-carb diet is important.

If I have all the anti-bodies I can't see how I could be T2 - is this possible?

 

[Mrs HJG]

Oh that is brilliant news @DEBBIESCOTT I have moved from upset/dejected to full on furious this morning, so I am on a mission to be heard and seen this morning, (all very 2022!).