Hello from me, Kevin

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Kevin J

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Although a diabetic of over 20 years I have never bothered with this site/organisation. I have a very unusual, as yet not fully diagnosed, form of diabetes, and hope someone on the site may have insight?
I have already discovered something called LADA on here which sounds similar to my symptoms.
Any help?
 
Hi and welcome.

If you tell us a bit more about your diabetes then we will have something to base our comments on.

Things like:-
How you came to be diagnosed? ie Were you symptomatic and if so which symptoms or was it picked up through a routine blood test?
What medication are you taking, if any and has that changed over the years?
What, if any, dietary changes have you made?
What sort of HbA1c results are you getting? If you remember your HbA1c at diagnosis that might be relevant but also your most recent?
Any other info you think might be relevant? ie. Things that make your case particularly unusual and perhaps make you wonder about LADA?
 
By all means take your time. The more info you can give us the better, so don't feel like you are boring us or giving too much detail. Diabetes is complicated and can be highly individual.
 
rebrascora said:
Hi and welcome.

If you tell us a bit more about your diabetes then we will have something to base our comments on.

Things like:-
How you came to be diagnosed? ie Were you symptomatic and if so which symptoms or was it picked up through a routine blood test?
What medication are you taking, if any and has that changed over the years?
What, if any, dietary changes have you made?
What sort of HbA1c results are you getting? If you remember your HbA1c at diagnosis that might be relevant but also your most recent?
Any other info you think might be relevant? ie. Things that make your case particularly unusual and perhaps make you wonder about LADA?
Click to expand...
Hi Barbara,
Sorry my response is a bit late.

I was diagnosed at a routine 'well-man' clinic where I presented with high sugars in my urine, and then the finger prick test gave a reading over 14. Year 2000, I was 42.
I had no symptoms, but I was a long distance runner at the time, so I was slim.
I adjusted my diet and was treated as a Type 2. I don't remember my early HbA1c numbers but I have fluctuated between 7.5 (ish) and 10.1 (lately)
The timeline is foggy now but I eventually was put on Metformin, (500mg, twice a day) and was tried with Rosiglitizone, Gliclazide, as I remember. I came off the Rosiglitizone at some point. I think I have been on and off Gliclazide for the intervening years, but for the last 4/5 years I have been prescribed the highest dosage of each. (Met 1000mg 2 per day and Glic 180mg 2 per day)
I was put on Insulin in 2014 (approx) for 2 years or so and it did nothing. One evening I took 3 doses of 2 units, an hour, apart, of the fast acting insulin, because my sugars would not come down, and it did nothing. My diabetic nurse at the time said I should have had a hypo. I have never had a hypo and I am nearly always sugar high, except after vigorous exercise.
One of my nurses referred me to the hospital consultants who did a double urine test and ruled out MODY as my pancreas does produce Insulin. (I hope that is correct?)
I then had a 'special' blood test done (costing the NHS £750) which went to Exeter. It was to see if I had, (I think I quote correctly)... 'a mitochondrial DNA' type? That came back inconclusive, I believe.

In 2017 I came off my meds and I tried a Keto diet, (low carb, high fat), including intermittent fasting (between 1 to 3 days, no food) for about a 7 month period. I lost 1 1/2 stone in weight, which I didn't need to do. My sugar readings didn't improve, although they were in the 7 to 9 range in the mornings back then, but my HbA1c went up to over 10!
I was completely disillusioned.

I suffered a family tragedy in 2012 (my son took his own life) and struggled with depression, on and off, ever since. Sixteen months ago my partner of 3.5 years left me and I crashed badly. I tried meds for the depression but hated the side effects so I came off them. Counselling was ineffective, and during this time I haven't been very strict with my diet. I have comfort eaten sweet stuff, mainly chocolate.
I have come out of the fog of depression in the last 2 or 3 months but lapse now and then.

What has brought me to the current 'crisis' is that my morning sugar readings have been consistently higher for 2 months. Nearly always over 10 but up to 18!
During the winter I set my bike up indoors and cycle every other day. Usually after a good 40 mins on the bike I can get readings as low as 4.
A couple of days ago I was at 16.5 before going on the bike, and 9.9 when I came off. I went for a bath and only had a cup of tea with milk, but afterwards my reading had rocketed to 18.4 !!!
I have lost weight again recently, approx 5kgs in just 2 months or so.

I power walk up to 5 miles every morning and I'm tired, sometimes fatigued, by 9.30pm. I get 7 to 8 hours sleep, only interrupted by needing to urinate, 2 or 3 times per night. I urinate a lot. I eat breakfast at my local pub each day, consisting of sausage, bacon, eggs, hash browns and beans, but quite often I have pancakes with maple syrup. (stupid, I know). Plus quite a lot of coffee, (which could account for the frequent urinating, I know).

I'm 66 now, and live alone, with loads of free time to indulge my main interest of exercising.
Recently my diabetic nurse took me off Glic and gave me Pioglitizone, however, upon reading that one of the side effects was impotency, (1 in 10) I refused to take them.
I have no diabetic complications that have presented, in fact, I'm a fit man who has the label 'diabetic' over my head, but you would hardly know it day to day.

So... reading of LADA, and the symptoms I wondered if finally I might have stumbled on what type of diabetes I have.
At my last consultants appointment (Sept 2022) he just insisted I have type 2 (despite evidence in my notes to the contrary) and that because I was 65, I should expect to get higher readings.... basically writing me off, and I haven't been sent for this year, although I was due in Sept.

Your thoughts and knowledge would be appreciated, plus ask me anything I may have missed out.
Apologies if it has seemed rambling.
 
Hi Kevin. So sorry to hear you have gone through such trauma and loss in your personal life. Stress and comfort eating and probably disrupted sleep I am guessing, all adversely affect diabetes as you know doubt know. So pleased that you are starting to cope with your depression now and feel it is starting to lift a bit. I myself have struggled with it for many years, so I can empathize with how challenging it is. Exercise and eating well definitely help a lot.

Thanks for all that extra info. Really surprised that they did the testing for MODY. That is the expensive test done at Exeter. There are members here who can't get their GP or consultant to sanction it. MODY is very rare though, so a positive would be unlikely.
LADA is much more common than MODY and is essentially slow onset Type 1 diabetes in adults. Unfortunately LADA is often misdiagnosed as Type 2 and will usually respond to Type 2 medication/dietary changes and exercise in the early stages (which can be months or years, but sooner or later you will need insulin and it sounds like that time has come, if you are getting persistent readings in double figures and going up to mid teens.

My guess would be that they did a C-peptide test and a ketone test on your urine to see how much insulin you were producing and if you had ketones and deduced from those tests that you were not Type 1 or LADA. Unfortunately the urine C-peptide test is not particularly reliable and needs special prep by the patient which often they aren't advised of and therefore isn't followed which can skew the results, plus interpretation of the results needs to be looked at in context with other clinical factors such as your weight and fitness etc. I am Type 1 and I have not so far produced ketones, so again that test is inconclusive and my C-peptide (blood test) result was borderline normal/low (you would expect a Type 2 to be producing excess insulin at that stage, to overcome their insulin resistance). For me it was my GAD antibody test which confirmed my diagnosis as that was positive and that indicates that my immune system had attacked my insulin producing beta cells and killed some of them off.

In your situation, I might ask for a referral to a different consultant/specialist diabetes unit at a different hospital (your current consultant's attitude stinks by the sound of it) and see if they will review your diagnosis and push for another C-peptide test, ideally blood rather than urine this time and Type 1 antibody tests.

There are lots of possible explanations for your experience where the insulin didn't work and 2units is a relatively small dose, even if you injected 2 more and 2 more after that, depending upon what your starting levels were and what you ate or possibly the needle being blocked and not delivering the dose on one or more of those occasions.

How long were you using insulin?
Were you also using a long acting insulin or just a mealtime "fast acting" insulin?

I appreciate that you are putting a lot of effort into managing your levels through diet and exercise but clearly it is not enough and that suggests that you are no longer able to produce enough insulin to balance your BG levels now and to me it is time to explore insulin use again, which would be the sensible option regardless of what type of diabetes you have since max dose Gliclazide and Metformin are not being effective by the sound of it.
 
Welcome to the forum @Kevin J

Sincere condolences for the death of your son, that must be a very difficult and painful thing to be working through. I lost my wife to cancer 5 years ago, so recognise that these things don’t just disappear off your radar after a couple of years :(

Sorry to hear about the confusion around your diabetes classification too. And the way you seem to have been left with elevated glucose levels, without a timely review of meds or treatment options :(

Hope you can get some clarity around your diabetes type, and as @rebrascora has suggested, perhaps it might be time to consider a more fully-fledged insulin regimen, with both background (basal), and mealtime (bolus) insulins?
 
rebrascora said:
Hi Kevin. So sorry to hear you have gone through such trauma and loss in your personal life. Stress and comfort eating and probably disrupted sleep I am guessing, all adversely affect diabetes as you know doubt know. So pleased that you are starting to cope with your depression now and feel it is starting to lift a bit. I myself have struggled with it for many years, so I can empathize with how challenging it is. Exercise and eating well definitely help a lot.

Thanks for all that extra info. Really surprised that they did the testing for MODY. That is the expensive test done at Exeter. There are members here who can't get their GP or consultant to sanction it. MODY is very rare though, so a positive would be unlikely.
LADA is much more common than MODY and is essentially slow onset Type 1 diabetes in adults. Unfortunately LADA is often misdiagnosed as Type 2 and will usually respond to Type 2 medication/dietary changes and exercise in the early stages (which can be months or years, but sooner or later you will need insulin and it sounds like that time has come, if you are getting persistent readings in double figures and going up to mid teens.

My guess would be that they did a C-peptide test and a ketone test on your urine to see how much insulin you were producing and if you had ketones and deduced from those tests that you were not Type 1 or LADA. Unfortunately the urine C-peptide test is not particularly reliable and needs special prep by the patient which often they aren't advised of and therefore isn't followed which can skew the results, plus interpretation of the results needs to be looked at in context with other clinical factors such as your weight and fitness etc. I am Type 1 and I have not so far produced ketones, so again that test is inconclusive and my C-peptide (blood test) result was borderline normal/low (you would expect a Type 2 to be producing excess insulin at that stage, to overcome their insulin resistance). For me it was my GAD antibody test which confirmed my diagnosis as that was positive and that indicates that my immune system had attacked my insulin producing beta cells and killed some of them off.

In your situation, I might ask for a referral to a different consultant/specialist diabetes unit at a different hospital (your current consultant's attitude stinks by the sound of it) and see if they will review your diagnosis and push for another C-peptide test, ideally blood rather than urine this time and Type 1 antibody tests.

There are lots of possible explanations for your experience where the insulin didn't work and 2units is a relatively small dose, even if you injected 2 more and 2 more after that, depending upon what your starting levels were and what you ate or possibly the needle being blocked and not delivering the dose on one or more of those occasions.

How long were you using insulin?
Were you also using a long acting insulin or just a mealtime "fast acting" insulin?

I appreciate that you are putting a lot of effort into managing your levels through diet and exercise but clearly it is not enough and that suggests that you are no longer able to produce enough insulin to balance your BG levels now and to me it is time to explore insulin use again, which would be the sensible option regardless of what type of diabetes you have since max dose Gliclazide and Metformin are not being effective by the sound of it.
Click to expand...
everydayupsanddowns said:
Welcome to the forum @Kevin J

Sincere condolences for the death of your son, that must be a very difficult and painful thing to be working through. I lost my wife to cancer 5 years ago, so recognise that these things don’t just disappear off your radar after a couple of years :(

Sorry to hear about the confusion around your diabetes classification too. And the way you seem to have been left with elevated glucose levels, without a timely review of meds or treatment options :(

Hope you can get some clarity around your diabetes type, and as @rebrascora has suggested, perhaps it might be time to consider a more fully-fledged insulin regimen, with both background (basal), and mealtime (bolus) insulins?
Click to expand...
I thank you and extend my condolences too...
It's never going away...
 
rebrascora said:
Hi Kevin. So sorry to hear you have gone through such trauma and loss in your personal life. Stress and comfort eating and probably disrupted sleep I am guessing, all adversely affect diabetes as you know doubt know. So pleased that you are starting to cope with your depression now and feel it is starting to lift a bit. I myself have struggled with it for many years, so I can empathize with how challenging it is. Exercise and eating well definitely help a lot.

Thanks for all that extra info. Really surprised that they did the testing for MODY. That is the expensive test done at Exeter. There are members here who can't get their GP or consultant to sanction it. MODY is very rare though, so a positive would be unlikely.
LADA is much more common than MODY and is essentially slow onset Type 1 diabetes in adults. Unfortunately LADA is often misdiagnosed as Type 2 and will usually respond to Type 2 medication/dietary changes and exercise in the early stages (which can be months or years, but sooner or later you will need insulin and it sounds like that time has come, if you are getting persistent readings in double figures and going up to mid teens.

My guess would be that they did a C-peptide test and a ketone test on your urine to see how much insulin you were producing and if you had ketones and deduced from those tests that you were not Type 1 or LADA. Unfortunately the urine C-peptide test is not particularly reliable and needs special prep by the patient which often they aren't advised of and therefore isn't followed which can skew the results, plus interpretation of the results needs to be looked at in context with other clinical factors such as your weight and fitness etc. I am Type 1 and I have not so far produced ketones, so again that test is inconclusive and my C-peptide (blood test) result was borderline normal/low (you would expect a Type 2 to be producing excess insulin at that stage, to overcome their insulin resistance). For me it was my GAD antibody test which confirmed my diagnosis as that was positive and that indicates that my immune system had attacked my insulin producing beta cells and killed some of them off.

In your situation, I might ask for a referral to a different consultant/specialist diabetes unit at a different hospital (your current consultant's attitude stinks by the sound of it) and see if they will review your diagnosis and push for another C-peptide test, ideally blood rather than urine this time and Type 1 antibody tests.

There are lots of possible explanations for your experience where the insulin didn't work and 2units is a relatively small dose, even if you injected 2 more and 2 more after that, depending upon what your starting levels were and what you ate or possibly the needle being blocked and not delivering the dose on one or more of those occasions.

How long were you using insulin?
Were you also using a long acting insulin or just a mealtime "fast acting" insulin?

I appreciate that you are putting a lot of effort into managing your levels through diet and exercise but clearly it is not enough and that suggests that you are no longer able to produce enough insulin to balance your BG levels now and to me it is time to explore insulin use again, which would be the sensible option regardless of what type of diabetes you have since max dose Gliclazide and Metformin are not being effective by the sound of it.
Click to expand...

rebrascora said:
Hi Kevin. So sorry to hear you have gone through such trauma and loss in your personal life. Stress and comfort eating and probably disrupted sleep I am guessing, all adversely affect diabetes as you know doubt know. So pleased that you are starting to cope with your depression now and feel it is starting to lift a bit. I myself have struggled with it for many years, so I can empathize with how challenging it is. Exercise and eating well definitely help a lot.

Thanks for all that extra info. Really surprised that they did the testing for MODY. That is the expensive test done at Exeter. There are members here who can't get their GP or consultant to sanction it. MODY is very rare though, so a positive would be unlikely.
LADA is much more common than MODY and is essentially slow onset Type 1 diabetes in adults. Unfortunately LADA is often misdiagnosed as Type 2 and will usually respond to Type 2 medication/dietary changes and exercise in the early stages (which can be months or years, but sooner or later you will need insulin and it sounds like that time has come, if you are getting persistent readings in double figures and going up to mid teens.

My guess would be that they did a C-peptide test and a ketone test on your urine to see how much insulin you were producing and if you had ketones and deduced from those tests that you were not Type 1 or LADA. Unfortunately the urine C-peptide test is not particularly reliable and needs special prep by the patient which often they aren't advised of and therefore isn't followed which can skew the results, plus interpretation of the results needs to be looked at in context with other clinical factors such as your weight and fitness etc. I am Type 1 and I have not so far produced ketones, so again that test is inconclusive and my C-peptide (blood test) result was borderline normal/low (you would expect a Type 2 to be producing excess insulin at that stage, to overcome their insulin resistance). For me it was my GAD antibody test which confirmed my diagnosis as that was positive and that indicates that my immune system had attacked my insulin producing beta cells and killed some of them off.

In your situation, I might ask for a referral to a different consultant/specialist diabetes unit at a different hospital (your current consultant's attitude stinks by the sound of it) and see if they will review your diagnosis and push for another C-peptide test, ideally blood rather than urine this time and Type 1 antibody tests.

There are lots of possible explanations for your experience where the insulin didn't work and 2units is a relatively small dose, even if you injected 2 more and 2 more after that, depending upon what your starting levels were and what you ate or possibly the needle being blocked and not delivering the dose on one or more of those occasions.

How long were you using insulin?
Were you also using a long acting insulin or just a mealtime "fast acting" insulin?

I appreciate that you are putting a lot of effort into managing your levels through diet and exercise but clearly it is not enough and that suggests that you are no longer able to produce enough insulin to balance your BG levels now and to me it is time to explore insulin use again, which would be the sensible option regardless of what type of diabetes you have since max dose Gliclazide and Metformin are not being effective by the sound of it.
Click to expand...
Thank you Barbara for all of that. Sorry to hear you have suffered from depression also.

I obviously got everything confused as to what test was for what.

I was on insulin for about 18 months to 2 years I think...Both long acting and fast acting types. They took me off it in the end.
I have stopped taking Gliclazide now by my own choice, anyway.

I have a telephone appointment with a diabetic nurse tomorrow so I am going to quote from your messages and also ask about a new referral, LADA, and if I can start back on insulin.

I do think at my last appointment with a consultant (I never see the same one twice!) he was writing me off based on age.

I may be drawing my pension now, but there is plenty of life in this old dog yet!

I've done a one hour power walk and an hour on the bike today. Readings prior to bike 13.4...after 8.0...
An hour later, again after only a cup of tea....I registered 9.8...

Thanks again 🙂
 
Insulin therapy is complicated and it needs trial and improvement to get doses correct for each individual and what they eat and how much/little they exercise and a whole host of other factors..... and then just when you get it right and you think you have cracked it, it changes and you have to start figuring out new doses. A nurse setting your doses once every few months or annually doesn't come close to it and you really need to become the expert in your own dosing because only you live with it and we are all very different. Unfortunately most Type 2s who are started on insulin don't get any training in how to adjust their doses so it it doesn't work optimally for them. You can, however, learn a lot from this forum because we have more combined practical experience than any nurse or consultant plus you can dip into the forum at any time to ask questions or clarify things whereas most appointments with medical professionals are just 10-15 mins which really isn't enough to take everything in. The BERTIE online course is also a really good resource I believe.
It doesn't sound like you can exercise or diet your way out of your diabetes and the oral meds don't sound like they are working so returning to insulin is the likely solution, but with better support and understanding of how to use it.
 
Well....I have to say that all the dosage complication sounds depressing. So it seems I may be more like a Type 1 now?
I have a learning curve ahead of me!
I shall check out the BERTIE course you mention, as and when I might need it.
My appointment for today was cancelled, so I am no nearer getting a new meds regime. A receptionist rang to assess how urgent things are. They will re-appoint.

Thanks again for your insights.
 
Kevin J said:
Well....I have to say that all the dosage complication sounds depressing. So it seems I may be more like a Type 1 now?
I have a learning curve ahead of me!
I shall check out the BERTIE course you mention, as and when I might need it.
My appointment for today was cancelled, so I am no nearer getting a new meds regime. A receptionist rang to assess how urgent things are. They will re-appoint.

Thanks again for your insights.
Click to expand...
If it is LADA, then that IS Type 1 - just a slower-developing form of Type 1.
 
It soon becomes your new normal, but yes, there is a lot to learn at first and it certainly can be challenging. 🙄 There are plenty of us here to support you though and suggest tips and strategies to overcome particular problems you come across, once you get started.
Disappointed to hear your appointment today has been postponed. There is a lot of Covid going about again as well as other unpleasant bugs like Noro Virus, so not surprising if medical staff have been impacted by that. Hope you get a rescheduled appointment soon.
 
Hi Barbara....
Thought I would update you as you have been interested and helpful.

I had a telephone appointment yesterday with a diabetic nurse and she thinks I am very likely to have LADA, but wants to do a blood test next week. In the meantime she prescribed me some insulin to get started and I have.

Regards, Kevin
 
So pleased to hear you have insulin again and that the nurse will do tests next week.

Which insulin have you been given and what sort of dose have they started you off on?
 
It is a relatively low dose especially considering you don't have a bolus insulin for food and it is important to start on a conservative dose and gradually increase it rather than start on a higher dose and risk dropping your levels like a stone, which is not good for you physically or mentally.
Have they given you any advice about increasing the dose yourself or perhaps they want to keep it stable over the holiday period and reevaluate things next week?
Do keep us updated with how things go. It is helpful for others reading this as well as interesting for me personally. You would be amazed at how many people read these threads and learn from them or relate them to their own circumstances and find that helpful, without actually posting themselves, so even if you don't get any replies you can still be helping people just by posting about what is happening to you.
 
I think the nurse just wanted to get me started and review me next week. I did ask about the fast acting insulin but she said to wait and see after my readings this next week.
I fully expect I will get the 'bolus' too.

I will keep the thread going...

Thanks
 
Hi Kevin,
Did the nurse tell you what Blood test was she ordering. It should be written on the blood test form that she gave you,
 
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