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Questions to ask consultant

T

Trees_and_bees

New Member
Hi everyone,
I'm hoping for your advice on what I should be asking the diabetes consultant at my appointment this week. The background is that I was diagnosed with Type 2 out of the blue a few months ago. I thought I was only having my cholesterol tested (to rule it out as a cause of chest pain) but they also checked my HbA1C and it was 73 mmol/mol. I was really shocked as I had no diabetes symptoms (except being thirsty when I woke up) and my BMI was in healthy range. I didn't really believe it to be honest and did quite a lot of reading and research. I found mentions of LADA and realised I had many of the risk factors (in my 40s, healthy BMI of 23 and a family history of auto-immune disease). I asked my GP if I could get tested for LADA and they referred me to this consultant.

In the meantime, I'd signed up to the Second Nature programme, learned about the impact of nutrition and exercise and made significant changes to my diet and started to become more active. 3 months after diagnosis, my HbA1C was down to 45. I was over the moon, thinking I was on the path to Type 2 remission and hoping it wasn't LADA as there's no potential for remission with that and the idea of needing to use insulin really scares me.

I got to see the consultant for the first time a month or so ago. She talked about other possible rarer types of diabetes and ran lots of blood tests. The result of the GADA antibodies test for LADA came back 2 weeks later and it was high/positive (94) and C-peptide was 290. The results were shared with me via the consultant's letter to my GP, (on which I'm cc'd) so I haven't discussed them with her yet. I've read that if your C-peptide is under 300, you'll be told to start insulin (and the letter mentions that my appointment will include insulin teaching). I'm assuming the consultant will confirm it's LADA based on what I've read, but what do you think I need to ask them to make the most of my appointment? I'd also love to hear from anyone who's had a similar experience. Thanks : )
 
Welcome @Trees_and_bees 🙂 LADA is a bit of a controversial term in that many medics don’t use it, and sometimes it’s used to mean slightly different things. LADA is ‘just’ a slow-onset form of Type 1. Please don’t be scared of insulin! It’s a friend not a foe. Studies suggest that early introduction of insulin will preserve your remaining beta cells longer.

To my mind, the major risk of LADA/Type 1 is having things dragged out and being prescribed the ‘wrong’ meds rather than insulin. This risk is exacerbated if the person radically changes their diet (because it looks like everything is ok when it’s not, and any issues are camouflaged). So, so many people do this and it just prolongs the stress IMO.

So, when you see the consultant, ask them to confirm your results (inc actual numbers) and to confirm your diagnosis. Then explain that you have been on a diet, eating differently from normal so your HbA1C might not be a true reflection of how your body is doing.
 
Welcome to the forum @Trees_and_bees

Sorry to hear about your diagnosis, but well done on getting things thoroughly checked, and good to hear that you’ve been referred to a consultant.

My non-medically-trained version is that your high initial HbA1c shows that your body can’t cope with a standard diet. Your beta cells are being destroyed by an autoimmune attack, but some are still valiantly fighting on. Your low cPeptide shows that you still have some homegrown insulin, but that there’s not much left, and in all likelihood as the autoimmune attack continues you’ll have less and less.

By making big changes to your diet and increasing activity you’ve done well to take the pressure off your metabolism, and you’ve found a balance where your remaining beta cells can still just about cope. But this is unlikely to be a long-term solution with high GAD (and other?) antibodies showing ongoing attack. Your remaining beta cells may be working double-shifts, and this may lead to them being burnt out earlier.

Another way to ‘take the pressure off’ is to add exogenous insulin. Even if only in quite small doses to begin with. This frees up your diet, which can return to standard healthy eating advice, and means your remaining beta cells are supported, and hopefully will last a bit longer. Sometimes this is called the ‘honeymoon period’, and in some cases of T1 (or LADA) can last for years. With the homegrown insulin production helping out and smoothing off the edges of BGs

Another thing to learn, is that your appointments will quickly become a 2-way collaborative venture. A balance between an expert with knowledge, and your lived experience of how your individual diabetes behaves, your aspirations, your goals.

Good luck with it, and let us know how the appointment goes.
 
Welcome to the forum @Trees_and_bees . It is great that you have had such thorough tests and that your slow onset T1 has been picked up.

I would echo what @everydayupsanddowns said in that my appointments with the consulate t are very much two way, and focusing on finding an effective management of my diabetes. Good that you are doing some research before the appointment, and as @Inka said injecting insulin is fine. As a T1 with adjustements to your doses you can eat a normal healthy diet with no restrictions.
Let us know how you get on.
 
Welcome to the club @Trees_and_bees

Sounds a little similar to me, early 50s, active, BMI was fine, no history of diabetes the family but I had much higher HBa1C with ketones, high BG and a few more symptoms (feeling weaker/tired, lost weight, thirsty, waking up to go to the loo at night)

Was told I was Diabetic but there was some confusion as to which before the usual tests came back so I also did that massive diet change just in case it was Type 2, that wasn't a good week for me.

Like you I started reading up then I started a spreadsheet of BG, insulin, food, worked out my ratios got back to exercising as soon as I was allowed (exercise is my personal wonder-drug in BG management)

I wasn't a fan of needles but am now happy to be on MDI (multiple daily injections of insulin) with a CGM, I have my energy back, yeap insulin is powerful so can bite if you get it wrong but the alternative (zero carbs or bad BG control) were not going to work for me. Your situation may be different.

As far as questions, I would ask them if they are confident that it is T1D and that you need insulin. If both of those are "yes" then other things to ask about or that have helped me lots at this early stage (I'm only three months in) if no, you can discount the rest as it won't be relevent.

BG monitoring (either with a finger prick tests or a CGM)
Bolus/Basal insulin
Where to find info on carb counting
Starting insulin to carb ratios, how they change over the day and with exercise, when to adjust them.
Timelines on CGMs
Timelines on pumps (if you fancy that as an option)

I would imagine they will want to start you slow without major changes to start with (but it sounds like you have already may some adjustments) Any research you do or have already done will help you be ahead of the curve for the meeting, so well done there

Ultimately this is going to be up to you (the NHS can give you the tools and information but can't follow you around) so you get to manage it yourself, much as you have already started to do.
 
Welcome @Trees_and_bees
What to ask at the appointment with your consultant is very personal. Some people, like @Skater P want to dive straight in with insulin to carb ratios and looking forward to additional technology whereas others like to ease in, which, as you are in the very early stages, is possible. It's up to you and there is no correct approach.

To me, there are three types of questions, I would want answered
- what is my diagnosis?
- what is the treatment? If this is insulin, what types and what is the dose? If you have BG meter and/or CGM, how to use them?
- how do I continue to live my life as I want? I focus on the most important activities to me - eating, exercise, work, travel (e.g. driving and flying) and how to manage my diabetes through these.

Then, there are the follow-ups
- what would the consultant recommend I do/read to learn more (what websites, books or courses like DAFNE)?
- what are the next steps? When is the next appointment and what appointments should I expect? Personally, I would push for something relatively soon so I can ask the questions I thought of as soon as I left the surgery.
- what do I do if things don't go to plan? Who should I contact? When do I call 111 and when do I go straight to A&E?
 
Last edited:
helli said:
Welcome @Trees_and_bees
What to ask at the appointment with your consultant is very personal. Some people, like @Skater P want to dive straight in with insulin to carb ratios and looking forward to additional technology whereas others like to ease in, which, as you are in the very early stages, is possible.
Click to expand...

Yes, sorry, @helli is totally right here, I should have mentioned I tried to "speed run" the whole T1D process, I went in hard and early and should have been much clearer about that.

I'm very sure it was not the schedule my medical team had in plan, they wanted to "titrate" my BG range down more gently. I thought as I made the radical (and incorrect) change to my diet and carb awareness early on there seemed little point in going backwards to my old lifestyle to then gently return to where I already was.

This route is not for everyone.
 
Skater P said:
Yes, sorry, @helli is totally right here, I should have mentioned I tried to "speed run" the whole T1D process, I went in hard and early and should have been much clearer about that.

I'm very sure it was not the schedule my medical team had in plan, they wanted to "titrate" my BG range down more gently. I thought as I made the radical (and incorrect) change to my diet and carb awareness early on there seemed little point in going backwards to my old lifestyle to then gently return to where I already was.

This route is not for everyone.
Click to expand...
The reason they will often want to reduce levels more gradually is there is less risk of issues with nerves and eyes if done more cautiously.
 
Thank you all so much for taking the time to write such helpful and thoughtful replies. I feel really lucky to be benefitting from the huge amount of knowledge and wisdom in this group.

@Inka thank you, yes I'll remind the consultant about my dietary changes camouflaging what might really be going on, and I'm glad to have had the right tests to detect it now, rather than getting seriously ill first. It makes me wonder though, why there's not a better diagnostic pathway for distinguishing Type 2 from late onset Type 1? It sounds like so many people get missed and misdirected.

Thanks @everydayupsanddowns - your message helped clarify a few things. It sounds like I'll be advised to return to a normal healthy diet, but I'm not quite clear on why I shouldn't stick with eating a low carb diet (not that I want to, but I'm just surprised it's not safer, as I thought it would be taking the pressure of my beta cells?). Is it just because it camouflages what my body is doing under "normal" circumstances and that makes it harder to treat effectively?

@SB2015 and @Skater P thanks for the reassurance about injecting insulin. And it's really great to hear from someone in similar circumstances. Those are great ideas for questions and gives me a better idea of what to expect next. Thanks for the explanation too @Leadinglights.

@helli thanks too for setting out the practical questions so logically, I'm making a great list now and feel much better prepared.
 
Trees_and_bees said:
I'm not quite clear on why I shouldn't stick with eating a low carb diet
Click to expand...
Low carb can cause ketones which might make it harder to understand what’s going on, and can be more difficult to dose insulin for correctly when you start insulin
 
I did low carb at first. My thoughts, looking back...

Its not as nice..and i went fully into the alternative flours, got ketocook books etc
Not sure if such an unbalanced diet is healthy for type 1s (realised its different for t2 but not necessary for t1s)
Its hard to keep weight on when low carb
I became more insulin resistant and needed more insulin per gram of carbs
I got kidney stones, which i've heard can be related to low carb.

Mind you, i was quite low carb...lots less than 130g a day

I still do a low carb dinner when at work and therefore can't go for a walk after eating, and that does keep my blood sugars nice and flat
 
Hi and welcome from me too.

So pleased you have found the forum as it really is a goldmine of knowledge and practical support which is accessible at any time rather than the occasional appointment with health care professionals.

I continued with low carb after I was rediagnosed as Type 1 as there have been a significant number of health benefits for me which make it beneficial, but I do have to inject for protein release after meals as well as inject for carbs before meals which means extra injections. (In the absence of sufficient carbs the body breaks down some of the protein we eat into glucose but this happens more slowly than the digestion of carbs, so typically I have to inject a small amount of insulin 20 mins before a meal to deal with the carbs and then a small amount more about 2 hours after the meal. Libre (other CGM are available) makes this relatively easy and I don't find it more difficult to manage and extra injections are no big deal in my opinion, but it is down to the individual to find what works best for their body and good diabetes management is all about experimenting and finding what works best for you with the insulin you have and the lifestyle you live and other health conditions you may have and how your body responds. Of course you will be given some basic guidance at first with your insulin until you get into a routine and gain some confidence and experience but then you can start to fine tune that to what actually works best for your body and lifestyle and we are all very different. There is no perfection and you will make mistakes because we all do from time to time, but you learn most from those mistakes so don't fear them, but instead see them as a learning opportunity.

Good luck with your appointment and hopefully getting started on insulin straight away. The needles are tiny and you eventually get into a routine with it that you sort of work on autopilot a lot of the time.

The forum is here to support you and answer any questions you have and compare notes with others which can in itself be incredibly comforting even when other people's experience of a similar situation might be quite different.

Look forward to hearing how you get on and don't shy away from starting insulin straight away. Better to start on very small doses early on and develop a routine with it and a bit of experience than delay and then potentially reach crisis point when you need insulin urgently and are not in a position to get support, like whilst you are on holiday or a weekend when you can't contact anyone at the clinic and A&E is heaving. Good diabetes management is about being prepared and keeping yourself safe.
 
Hi @Trees_and_bees and welcome to the forum from me - you will hopefully benefit from hearing my story regarding diagnosis and beyond (I'm 3 years in as of last week) - I posted this last week...

mashedupmatt

Thread 'Diaversary - and a thank you'

I knew it was close so had a look on the NHS app and it is today!

1751966739280.jpeg
Not a significant milestone, I know, and not even close to many people on here but it has been quite a journey. I thought I'd share it as it may help others:

Started after a routine blood test following another diagnosis (Psoriasis - another auto-immune condition) - given a glucometer and strips and told to test before and 2hrs after food (Up to 10 times a day - ouch!) - My HbA1c was only 49 but my eagle-eyed doctor had noticed that over the course of a couple of weeks (when I was being diagnosed/treated for...
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