new to this site, but type 2 for 5 years, need some friendly advise.

[LUSTFORLIFE]

hello! short history, really low and look forward to your advice, ive read a few posts and you seem an incredible friendly and helpful group, so here goes, diagnosed with type 2 5 years ago, 5 years of blood test, endless high sugar, I'm now on 240 tablets a month with no improvement, I had to instigate my last 2 blood tests as I heard nothing form my doctor, after a lot of pushing, im now being referred to a specialist, ive got to take blood sugar readings for 14 days the go and have a chat with my doctor, I feel that there is no urgency from the doctor, 5 years of high blood sugar is scary ( and im talking of 16 to 25 and more ),to add to my woes, ive lost 2 and a half stone due to the high sugar level, I wasn't overweight when I was diagnosed and im so skinny now that it gets me down, I eat a medetarianian type diet, and hardly ever eat anything sweet, I look forward to your input, with thanks

 

[Windy]

Hi lustforlife, welcome to the forum. Sorry to hear about the troubles you've been having, and the hassles you've had getting your doctor to refer you to a specialist.
Can I ask if they've confirmed that you're type 2 and not a different type of diabetes? It would have been a blood test for antibodies. I can only talk from my own experience as a T2, and diet, metformin and weight loss (through dieting) got my BG down.
It sounds like you're eating the right food for yours to reduce, but the unplanned weight loss isn't typical for T2s, which makes me wonder if your diagnosis is right. I've read about a fair few people on the forum who were originally diagnosed as T2, and ended up being a different type.
Any idea what blood tests you've had so far?
Sorry you're having to go through this, it must be hard work having to fight to get it looked into,
Sarah

 

[rebrascora]

Hi and welcome.

So pleased you have joined the forum but really sorry to hear you are feeling so low and that you haven't been given the support you clearly need. It sounds like you may be LADA (Latent Autoimmune Diabetes in Adults) which is a slow onset form of Type 1 and you probably should have been on insulin before now to help you manage those high levels and bring them down a bit. Unfortunately GPs know very little about the different types of diabetes and often assume you are Type 2 if you are a mature adult because they are under the misunderstanding that Type 1 only exhibits in children and young adults..... or even know that there are more Types of Diabetes than just 1 or 2. I think part of the problem is that they are under pressure not to refer patients to specialists unless it is absolutely essential and some don't know enough to know that they don't know enough.... so they muddle along trying different medications.... when it is not in the patient's best interests.

It is good to hear that you are now getting a referral to a specialist clinic but unfortunately many of the clinics and in particular the diabetes clinics, are badly backlogged due to Covid because the virus has increased their workload enormously. I would encourage you to ring the clinic and ask who you have been referred to ie which consultant or nurse and see if you can get a call back from them. If you don't hear from them after a week or two politely chase it up and be persistent until you get some help. Make a point of saying that your levels have been very high for 5 years and you are now losing weight rapidly and underweight and need urgent help. These are the important points to stress.... long term high levels losing weight without wanting to and underweight and not on insulin.

Let us know how you get on but do keep being persistent about speaking to someone at the clinic to get an urgent appointment. It may be that you need to leave a message on an answer machine. My clinic system works like that but they usually ring back within a couple of working days.

Keeping fingers crossed you can get an appointment sooner than later and start appropriate treatment soon. My guess is that you need insulin and ideally a basal/bolus system so you could potentially do some learning in advance so that you understand more when you get your appointment as it will mean you get the most out of what are usually quite short appointments. We can talk you through all this stuff or you can log onto the Learning zone (for Type 1) and improve your knowledge there, but do ask any questions here on the forum and we will be here to support you when you hopefully do get some insulin.

 

[LUSTFORLIFE]

Hi lustforlife, welcome to the forum. Sorry to hear about the troubles you've been having, and the hassles you've had getting your doctor to refer you to a specialist.
Can I ask if they've confirmed that you're type 2 and not a different type of diabetes? It would have been a blood test for antibodies. I can only talk from my own experience as a T2, and diet, metformin and weight loss (through dieting) got my BG down.
It sounds like you're eating the right food for yours to reduce, but the unplanned weight loss isn't typical for T2s, which makes me wonder if your diagnosis is right. I've read about a fair few people on the forum who were originally diagnosed as T2, and ended up being a different type.
Any idea what blood tests you've had so far?
Sorry you're having to go through this, it must be hard work having to fight to get it looked into,
Sarah

hi, thank you for your speedy reply, brilliant, as far as im aware, my blood tests have been the usual type 2 stuff, ie sugar over 3 months, liver and kidney function, the diabetic nurse sort of oohs and aahs and says things like "gosh, your sugar is higher now than when you were first diagnosed" ( by the way, I want to make it clear that im not at all having a go at the nurse or doctor, the nhs is brilliant, im just saying it as ive experienced it) ive always, in my own head, thought that there's something wrong with the diagnosis, ive read so much online, and I get the stats that loosing weight is a great step if your in that category, if im honest, the weight loss has impacted my life for this year especially, I go to work and shop, hardly anything else, I feel like tom hanks at the end of BIG, when his suit is huge as he turns back to a child, im 6.2, was 12 and a half stone, now 10 and a half and falling,

 

[Drummer]

If you are losing weight and not getting lower BG levels when eating a low carb diet (that is both starches and sugars) then that really doesn't tally with the narrative for a plain ordinary type 2 and should be causing concern and some extra testing being done to see if you are actually some other type and might require insulin.
You might be under eating, or there could be some other reason, but after 5 years surely the GP or the nurse should be thinking that there might be more to discover, even in these trying times.

 

[LUSTFORLIFE]

Hi and welcome.

So pleased you have joined the forum but really sorry to hear you are feeling so low and that you haven't been given the support you clearly need. It sounds like you may be LADA (Latent Autoimmune Diabetes in Adults) which is a slow onset form of Type 1 and you probably should have been on insulin before now to help you manage those high levels and bring them down a bit. Unfortunately GPs know very little about the different types of diabetes and often assume you are Type 2 if you are a mature adult because they are under the misunderstanding that Type 1 only exhibits in children and young adults..... or even know that there are more Types of Diabetes than just 1 or 2. I think part of the problem is that they are under pressure not to refer patients to specialists unless it is absolutely essential and some don't know enough to know that they don't know enough.... so they muddle along trying different medications.... when it is not in the patient's best interests.

It is good to hear that you are now getting a referral to a specialist clinic but unfortunately many of the clinics and in particular the diabetes clinics, are badly backlogged due to Covid because the virus has increased their workload enormously. I would encourage you to ring the clinic and ask who you have been referred to ie which consultant or nurse and see if you can get a call back from them. If you don't hear from them after a week or two politely chase it up and be persistent until you get some help. Make a point of saying that your levels have been very high for 5 years and you are now losing weight rapidly and underweight and need urgent help. These are the important points to stress.... long term high levels losing weight without wanting to and underweight and not on insulin.

Let us know how you get on but do keep being persistent about speaking to someone at the clinic to get an urgent appointment. It may be that you need to leave a message on an answer machine. My clinic system works like that but they usually ring back within a couple of working days.

Keeping fingers crossed you can get an appointment sooner than later and start appropriate treatment soon. My guess is that you need insulin and ideally a basal/bolus system so you could potentially do some learning in advance so that you understand more when you get your appointment as it will mean you get the most out of what are usually quite short appointments. We can talk you through all this stuff or you can log onto the Learning zone (for Type 1) and improve your knowledge there, but do ask any questions here on the forum and we will be here to support you when you hopefully do get some insulin.

thank you so much for getting back to me, ive just posted to windy, some facts in my case, and I want assure you and everyone else that I completely acknowledge the backlog in the nhs system and respect the nhs completely, I just want to present my experience truthfully and factually, im comforted by the fact that two replies in, there seems to be a thread of wrong diagnosis.

 

[rebrascora]

Yes, I am not having a go at the NHS as such, and in fact I have great sympathy for people working within the NHS, who must be at the end of their tether but just saying that particularly in the current circumstances, it pays to be politely pushy and persistent to get the help you need. Here on the forum we encourage people to be very proactive in the management of their diabetes, so that effectively they become the expert and the medical professionals are there to support them. Diabetes can be highly individual and a doctor or consultant who sees you for 10 mins (twice a year if you are lucky) is not going to be able to fully understand the ins and outs of what you as an individual are experiencing.

I would ensure that you have all the relevant facts, medication you have tried, HbA1c results since diagnosis, sort of food you eat to try to manage your levels and the sort of BG readings that you are regularly getting and of course your weight loss...... Out of interest, how did your diagnosis originally come about? Was it discovered via a routine blood test or were you symptomatic and if so, which symptoms?

 

[Windy]

These are the important points to stress.... long term high levels losing weight without wanting to and underweight and not on insulin

I echo what @rebrascora says, phone the clinic tomorrow and say about your high BG levels and unintended weight loss. Politely tell them how bad you feel and how tired you are. Ask if you can have a consultation sooner rather than later.

I appreciate you're not doing down the NHS (despite it's underfunding, the pandemic and it being overstretched, it's an excellent institution), but it looks like you've fallen between the cracks. It's important you get the right diagnosis so you can get the right treatment.

Best of luck, hope you get seen soon, and let us know how you get on.
Sarah

 

[LUSTFORLIFE]

If you are losing weight and not getting lower BG levels when eating a low carb diet (that is both starches and sugars) then that really doesn't tally with the narrative for a plain ordinary type 2 and should be causing concern and some extra testing being done to see if you are actually some other type and might require insulin.
You might be under eating, or there could be some other reason, but after 5 years surely the GP or the nurse should be thinking that there might be more to discover, even in these tying times.

hello drummer, thank you for your reply, as time goes on im getting more and more stressed with the situation, ive now, after 5 years and my nagging, been referred to a specialist, but no urgency in that, as regards under eating, I eat 2000 calories, a day, ish? im so down on my weight loss, but I read online that trying to cram calories in to gain weight can cause sugar spikes?

 

[Leadinglights]

hello drummer, thank you for your reply, as time goes on im getting more and more stressed with the situation, ive now, after 5 years and my nagging, been referred to a specialist, but no urgency in that, as regards under eating, I eat 2000 calories, a day, ish? im so down on my weight loss, but I read online that trying to cram calories in to gain weight can cause sugar spikes?

It will depend on what you are eating your calories as, if it is carbohydrate yes it will cause 'sugar spikes' but if protein and healthy fats then less likely to do so.
From everything you say I agree it sound much more likely you are Type 1 or LADA. I do think you need to press for an urgent appointment with a specialist diabetic clinic.
Depending on where you live there should be a clinic at your hospital with a contact number which you could try.

 

[LUSTFORLIFE]

Yes, I am not having a go at the NHS as such, and in fact I have great sympathy for people working within the NHS, who must be at the end of their tether but just saying that particularly in the current circumstances, it pays to be politely pushy and persistent to get the help you need. Here on the forum we encourage people to be very proactive in the management of their diabetes, so that effectively they become the expert and the medical professionals are there to support them. Diabetes can be highly individual and a doctor or consultant who sees you for 10 mins (twice a year if you are lucky) is not going to be able to fully understand the ins and outs of what you as an individual are experiencing.

I would ensure that you have all the relevant facts, medication you have tried, HbA1c results since diagnosis, sort of food you eat to try to manage your levels and the sort of BG readings that you are regularly getting and of course your weight loss...... Out of interest, how did your diagnosis originally come about? Was it discovered via a routine blood test or were you symptomatic and if so, which symptoms?

hi, my diagnosis was two fold, I noticed I was loosing weight, and my works medical flagged up sugar in my urine.

 

[LUSTFORLIFE]

I echo what @rebrascora says, phone the clinic tomorrow and say about your high BG levels and unintended weight loss. Politely tell them how bad you feel and how tired you are. Ask if you can have a consultation sooner rather than later.

I appreciate you're not doing down the NHS (despite it's underfunding, the pandemic and it being overstretched, it's an excellent institution), but it looks like you've fallen between the cracks. It's important you get the right diagnosis so you can get the right treatment.

Best of luck, hope you get seen soon, and let us know how you get on.
Sarah

thank you so much for your reply, and I very much feel like I have "fallen between the cracks", when someone else says it, it gives me some hope, thanks again.

 

[Windy]

There's some information about LADA on the main DUK site (in case you've not found it), the man's story seems similar to yours, tiredness, weight loss, diagnosed as T2, but didn't really fit the diagnosis.
Also, if you want to talk to someone, you can phone the DUK helpline:

0345 123 2399​

if you want more support. I think they are staffed in office hours.

Fingers crossed for a swift appointment and diagnosis, Sarah

 

[LUSTFORLIFE]

Yes, I am not having a go at the NHS as such, and in fact I have great sympathy for people working within the NHS, who must be at the end of their tether but just saying that particularly in the current circumstances, it pays to be politely pushy and persistent to get the help you need. Here on the forum we encourage people to be very proactive in the management of their diabetes, so that effectively they become the expert and the medical professionals are there to support them. Diabetes can be highly individual and a doctor or consultant who sees you for 10 mins (twice a year if you are lucky) is not going to be able to fully understand the ins and outs of what you as an individual are experiencing.

I would ensure that you have all the relevant facts, medication you have tried, HbA1c results since diagnosis, sort of food you eat to try to manage your levels and the sort of BG readings that you are regularly getting and of course your weight loss...... Out of interest, how did your diagnosis originally come about? Was it discovered via a routine blood test or were you symptomatic and if so, which symptoms?

I had a works medical which showed up a high amount of sugar in my urine, I also started to notice weight loss.

 

[LUSTFORLIFE]

There's some information about LADA on the main DUK site (in case you've not found it), the man's story seems similar to yours, tiredness, weight loss, diagnosed as T2, but didn't really fit the diagnosis.
Also, if you want to talk to someone, you can phone the DUK helpline:

0345 123 2399​

if you want more support. I think they are staffed in office hours.

Fingers crossed for a swift appointment and diagnosis, Sarah

very interesting I fit the picture for LADA, thank you so much for the website and phone number.

 

[Spathiphyllum]

thank you so much for your reply, and I very much feel like I have "fallen between the cracks", when someone else says it, it gives me some hope, thanks again.

Dear LustForLife-- your story makes me feel really quite angry. And it almost happened to me ...

My GP practice was offering 'health checks', so I went in for one last month. They took blood for routine testing, and also weighed and measured me-- I had unintentionally shrunk from BMI 18.5 (normal for me) to 16.

The head GP, Dr L, rang about 5 days later-- in the evening, while I was standing in the supermarket!-- and bluntly told me "your blood test results have come back, and you have diabetes." He started to say something about HbA1c, but I told him I wasn't in a position to discuss this now, and as it happened I had an appointment about something else with one of the other GPs, Dr M, the following morning; I would discuss it with her.

This meant I had the time, before speaking to Dr M, to look up information on diagnosis of Type 1 diabetes and Type 2 diabetes-- in particular the NICE guidelines: https://cks.nice.org.uk/topics/diabetes-type-1/diagnosis/diagnosis-adults/ on the one hand and https://cks.nice.org.uk/topics/diabetes-type-2/diagnosis/diagnosis-in-adults/ and https://cks.nice.org.uk/topics/diabetes-type-2/background-information/risk-factors/ on the other.

So when Dr M told me my HbA1c result was 101 (with 48+ meaning diabetes), I asked her whether she thought it was Type 1 or Type 2; she immediately said "Type 2"; I asked why, she immediately said "Because of your age"-- and I said 'But the NICE guidelines say "Do not discount a diagnosis of type 1 diabetes" simply because of the patient's age' ...

She ignored this at first and just went on about prescribing me Metformin! But I kept saying 'I really really don't think I have Type 2' and pointed out that that, according to the NICE guidelines, I had none of the risk factors for Type 2 but ticked three of the boxes for Type 1.

Eventually-- I think to get rid of me!-- Dr M suggested I have an appointment with the practice diabetes nurse. I said yes please, and could it be as soon as possible. Dr M said she'd speak to the nurse and get back to me.

When Dr M rang back-- my guess is that she had spoken to the nurse and the nurse had set her straight! She said she had now e-mailed the hospital diabetes unit for urgent advice; one of the hospital diabetes specialist nurses rang me a couple of hours later and asked some questions and then told me to come in to see them asap, the same day if possible, if not, the following morning. Went to see them and was diagnosed with probable T1D (since then confirmed by C-peptide and autoantibody tests) and immediately started on insulin.

If I hadn't looked up the NICE guidelines-- I might simply have accepted what Dr M said and taken the Metformin-- and god only knows what would have happened.

Admittedly, my case is more extreme than yours: you said above you're "6.2"-- 6 foot 2?-- and "was 12 and a half stone, now 10 and a half and falling", which would mean (I just used an online calculator) your BMI was 22.4 and is now 18.8. So you're still (barely) within the healthy BMI range. But-- it is a significant unintended weight loss, and that plus the fact that even at the outset your BMI was under 25, plus the fact that the pills aren't working, means you should get a swift referral to a diabetes specialist unit.

So-- do follow rebrascora's and Windy's advice-- try the DUK helpline, and be "politely pushy and persistent" with your GP! All the best, and hope you get proper treatment soon.

PS I too have huge respect for the NHS, and understand how overstretched and understaffed and underfunded they are. What makes me angry is not so much Dr M as a system in which GPs don't have the time to stop and think and make use of resources created specifically for them, like NICE's Clinical Knowledge Summaries ...

 

[LUSTFORLIFE]

Dear LustForLife-- your story makes me feel really quite angry. And it almost happened to me ...

My GP practice was offering 'health checks', so I went in for one last month. They took blood for routine testing, and also weighed and measured me-- I had unintentionally shrunk from BMI 18.5 (normal for me) to 16.

The head GP, Dr L, rang about 5 days later-- in the evening, while I was standing in the supermarket!-- and bluntly told me "your blood test results have come back, and you have diabetes." He started to say something about HbA1c, but I told him I wasn't in a position to discuss this now, and as it happened I had an appointment about something else with one of the other GPs, Dr M, the following morning; I would discuss it with her.

This meant I had the time, before speaking to Dr M, to look up information on diagnosis of Type 1 diabetes and Type 2 diabetes-- in particular the NICE guidelines: https://cks.nice.org.uk/topics/diabetes-type-1/diagnosis/diagnosis-adults/ on the one hand and https://cks.nice.org.uk/topics/diabetes-type-2/diagnosis/diagnosis-in-adults/ and https://cks.nice.org.uk/topics/diabetes-type-2/background-information/risk-factors/ on the other.

So when Dr M told me my HbA1c result was 101 (with 48+ meaning diabetes), I asked her whether she thought it was Type 1 or Type 2; she immediately said "Type 2"; I asked why, she immediately said "Because of your age"-- and I said 'But the NICE guidelines say "Do not discount a diagnosis of type 1 diabetes" simply because of the patient's age' ...

She ignored this at first and just went on about prescribing me Metformin! But I kept saying 'I really really don't think I have Type 2' and pointed out that that, according to the NICE guidelines, I had none of the risk factors for Type 2 but ticked three of the boxes for Type 1.

Eventually-- I think to get rid of me!-- Dr M suggested I have an appointment with the practice diabetes nurse. I said yes please, and could it be as soon as possible. Dr M said she'd speak to the nurse and get back to me.

When Dr M rang back-- my guess is that she had spoken to the nurse and the nurse had set her straight! She said she had now e-mailed the hospital diabetes unit for urgent advice; one of the hospital diabetes specialist nurses rang me a couple of hours later and asked some questions and then told me to come in to see them asap, the same day if possible, if not, the following morning. Went to see them and was diagnosed with probable T1D (since then confirmed by C-peptide and autoantibody tests) and immediately started on insulin.

If I hadn't looked up the NICE guidelines-- I might simply have accepted what Dr M said and taken the Metformin-- and god only knows what would have happened.

Admittedly, my case is more extreme than yours: you said above you're "6.2"-- 6 foot 2?-- and "was 12 and a half stone, now 10 and a half and falling", which would mean (I just used an online calculator) your BMI was 22.4 and is now 18.8. So you're still (barely) within the healthy BMI range. But-- it is a significant unintended weight loss, and that plus the fact that even at the outset your BMI was under 25, plus the fact that the pills aren't working, means you should get a swift referral to a diabetes specialist unit.

So-- do follow rebrascora's and Windy's advice-- try the DUK helpline, and be "politely pushy and persistent" with your GP! All the best, and hope you get proper treatment soon.

PS I too have huge respect for the NHS, and understand how overstretched and understaffed and underfunded they are. What makes me angry is not so much Dr M as a system in which GPs don't have the time to stop and think and make use of resources created specifically for them, like NICE's Clinical Knowledge Summaries ...

thank you, firstly, for taking the time to give your story and advice, currently I am on day ten of fourteen days of blood sugar monitoring so that I can go to the doctor where apparently he's going to have a "chat" about going on insulin. I have had to arrange my last two HbA1c tests as I heard nothing from the surgery, when I got my last results I expressed my concern that I am on 240 type 2 tablets a month, still loosing weight, still very high blood sugar, they said they would refer me urgently, I got a letter to make an appointment from the diabetic specialist at the hospital, they have since written to my doctor and said I need to be put on insulin, and can I give 14 days worth of blood sugar readings before making an appointment to see him, I could cry (and have), there seems to be no urgency, I asked my diabetic nurse at the surgery if I was possibly type 1, she really got snappy, im going to follow all the advice you and this brilliant forum are giving, and feel ready to push for help on my gp visit next week, thanks again.

 

[everydayupsanddowns]

I asked my diabetic nurse at the surgery if I was possibly type 1, she really got snappy, im going to follow all the advice you and this brilliant forum are giving, and feel ready to push for help on my gp visit next week, thanks again.

Sorry to hear you’ve been banging your head against a bit of a wall @LUSTFORLIFE

If you are happy to wait out the extra days of BG monitoring, then you might choose to do that, however if you get abdominal pain, breathlessness, nausea or vomiting, or an acetone / pear drop smell on your breath please go to A&E immediately.

T1 and LADA can plod along for a while just making you feel a bit grim, but if your T2 diagnosis isn’t right and it does end up being T1 or LADA then there can be a bit of a sudden crunch point, where suddenly you don’t have the beta cells to cope any more, and things can get pretty scary quite quickly.

If you are concerned in the meantime, you can always give NHS 111 a call mentioning normal weight at diagnosis, oral meds and diet having no lowering effect on BG, weight loss, rising BG levels and your suspicions you may have a different type of diabetes, and see what they say?

 

[LUSTFORLIFE]

Sorry to hear you’ve been banging your head against a bit of a wall @LUSTFORLIFE

If you are happy to wait out the extra days of BG monitoring, then you might choose to do that, however if you get abdominal pain, breathlessness, nausea or vomiting, or an acetone / pear drop smell on your breath please go to A&E immediately.

T1 and LADA can plod along for a while just making you feel a bit grim, but if your T2 diagnosis isn’t right and it does end up being T1 or LADA then there can be a bit of a sudden crunch point, where suddenly you don’t have the beta cells to cope any more, and things can get pretty scary quite quickly.

If you are concerned in the meantime, you can always give NHS 111 a call mentioning normal weight at diagnosis, oral meds and diet having no lowering effect on BG, weight loss, rising BG levels and your suspicions you may have a different type of diabetes, and see what they say?

hi, thank you for your reply and advice, when I see my GP next week, im going to thrash this out, ive really had a load of very interesting and useful information from the few days ive been on this forum, its going to be a huge help going forward.

 

[everydayupsanddowns]

hi, thank you for your reply and advice, when I see my GP next week, im going to thrash this out, ive really had a load of very interesting and useful information from the few days ive been on this forum, its going to be a huge help going forward.

Hope it’s a helpful discussion for you, and you are able to confirm your diagnosis either way, so that you can access appropriate treatment.

Let us know how things go.