Type 2 - no support from nurse and confused with no improvement. Advice!

[Leadinglights]

I did suggest that, but told no as my IBS is not an official diagnosis via tests. Years ago my GP summarised that as I had an upset stomach after milk products and other foods I avoided them, it went away, then I must have an intolerance or IBS. Just avoid those foods. But it’s jack pot when I eat out of my stomach is upset.

My GP are normally good. I think they think I am in denial and therefore not supportive.

I think people meant that you should ask for the c-peptide test to confirm or rule out Type 1 diabetes not a test for IBS.

 

[Holdbrook]

I would go and see your GP straight away. The nurse is wrong about Metformin. I have IBS and take Metformin SR which is slow release and dosent affect me. There are loads of other medications for Type 2 Diabetes but I would insist on a referral to hospital to rule out Type 1. I have a nurse who thinks she knows better than my GP. I see her at clinic and then see my GP. Don't worry it will be ok

I was diagnosed with diabetes t2 in early June through a blood test, due to sudden onset fatigue and brain fog. Hba1c was 98. Was referred to a diabetes nurse who I felt didn’t really give advice or support. She didn’t give me confidence in her advice or knowledge.

Her first words to me were you are not a typical type 2 as you are only 7lbs overweight and only 40 and no other signs apart from tiredness. I Asked why they think type 2 and she said it was my age. If I was in my 30s they would investigate late onset type 1.

I was offered metformin which she’d told me would cause upset stomach and bowel urgency. I already suffer from IBS, which can be sudden and painful. I explained my reluctance and asked if I could try another Medication m, but told no, best to try low carb diet for 3 months instead and buy a glucose monitor. No advice on how low carb to go or when to test. Got give a leaflet to read, which was mostly about type 1 diabetes.

I did my research and cut my carbs down to 100-120g a day. Use an app to calculate, alongside regular glucose testing, as bought a monitor from Amazon. Avoided most white carbs and upped my veg and meat intake to substitute, and avoiding foods that flare up my IBS. Go for a walk after my dinner and increased my weekly exercise. But my sugars have not changed since I started testing.

I wake with a baseline of 14.4. It spikes to 18.5 with a breakfast of Greek yogurt and fruit, can go to 20 if I have toast. Avoid bread now. During the day I stick to salads and fruit, but sugars don’t go below 12.9. Evening meal is salads and meats or stir fry veg, with maybe a small portion of brown rice or pasta. Bloods can spike to 18 on minimum carbs. I aim to stick to 35-40g carb per meal and 30g for snacks.

I am getting frustrated as no matter what I do, my bloods don’t go down. I thought my glucose levels would start to improve after 6 weeks - even a tiny bit. I love food and the restrictive diet is not sustainable abs I am starting to hate food.

I am still so tired. Has anyone experienced this? Could I be late onset type 1 if no improvement? What prompted a change in diagnosis?

totally confused with it all. Advice needed.

My Hba1c was 99 in February so I was diagnosed as having diabetes. My GP and diabetic team have been fantastic - they put me on 4 x 500mg Metformin and insulin and have followed up on my sugar levels and general health meticulously. They also sent me to have scans of my pancreas. My Hba1c is now 51 and my sugar levels are down to normal levels, from 33. I reduced my carbs and sugar intake and have already lost almost a stone. Does your practice have a diabetic GP and a diabetic nursing team? If not, then, as others have advised, talk to your own GP.

 

[Spoon]

I was diagnosed with diabetes t2 in early June through a blood test, due to sudden onset fatigue and brain fog. Hba1c was 98. Was referred to a diabetes nurse who I felt didn’t really give advice or support. She didn’t give me confidence in her advice or knowledge.

Her first words to me were you are not a typical type 2 as you are only 7lbs overweight and only 40 and no other signs apart from tiredness. I Asked why they think type 2 and she said it was my age. If I was in my 30s they would investigate late onset type 1.

I was offered metformin which she’d told me would cause upset stomach and bowel urgency. I already suffer from IBS, which can be sudden and painful. I explained my reluctance and asked if I could try another Medication m, but told no, best to try low carb diet for 3 months instead and buy a glucose monitor. No advice on how low carb to go or when to test. Got give a leaflet to read, which was mostly about type 1 diabetes.

I did my research and cut my carbs down to 100-120g a day. Use an app to calculate, alongside regular glucose testing, as bought a monitor from Amazon. Avoided most white carbs and upped my veg and meat intake to substitute, and avoiding foods that flare up my IBS. Go for a walk after my dinner and increased my weekly exercise. But my sugars have not changed since I started testing.

I wake with a baseline of 14.4. It spikes to 18.5 with a breakfast of Greek yogurt and fruit, can go to 20 if I have toast. Avoid bread now. During the day I stick to salads and fruit, but sugars don’t go below 12.9. Evening meal is salads and meats or stir fry veg, with maybe a small portion of brown rice or pasta. Bloods can spike to 18 on minimum carbs. I aim to stick to 35-40g carb per meal and 30g for snacks.

I am getting frustrated as no matter what I do, my bloods don’t go down. I thought my glucose levels would start to improve after 6 weeks - even a tiny bit. I love food and the restrictive diet is not sustainable abs I am starting to hate food.

I am still so tired. Has anyone experienced this? Could I be late onset type 1 if no improvement? What prompted a change in diagnosis?

totally confused with it all. Advice needed.

I had similar, though I am 10 st overweight. Nothing I did would bring my BG down including low carb and all the pills, and the addition of injections of Lyxumia made my BG worse! I had to fight but long story short - turned out I had glucose toxicity and needed insulin. Consultant said I was a very insulin resistant type 2 diabetic. Insulin brought the BG down. Fight for a gp consultation tell them your bg readings are too high and you should get an appointment. It’s worth getting ketone urine test strips - mine showed low levels of ketosis which sent alarm bells ringing at the gp. Good luck!

 

[PattiEvans]

Good luck getting C-Peptide on the NHS. I was told I could only have it if my BG went below 3.9 on a regular basis which I thought was BS

I think it is a postcode lottery and depends on who you see. I got a CPeptide test on the NHS, but it was authorised by the Endocrinologist who I was seeing about under-active thyroid.

 

[BlueArmy]

I think it is a postcode lottery and depends on who you see. I got a CPeptide test on the NHS, but it was authorised by the Endocrinologist who I was seeing about under-active thyroid.

My DN nurse read the criteria out from the computer that allowed her to refer me I think they are based on NICE guidelines. To be fair I am 100% type 2 as diet and exercise are having major impact, but I was interested to know if my pancreas was working ok and just tired and if I had a chance of getting it working normal again before he gets me regardless of lifestyle later in my life or if it was already spent.

However, I agree. The quality of care is a postcode lottery, my local hospital is one of the worst rated in the NHS as its up to its neck in debt sue to genius labour government and PPP and the local GPs can’t recruit as I live in a deprived area and there are better places to live and work if you have the choice!

 

[PattiEvans]

My DN nurse read the criteria out from the computer that allowed her to refer me I think they are based on NICE guidelines. To be fair I am 100% type 2 as diet and exercise are having major impact, but I was interested to know if my pancreas was working ok and just tired or if I had a chance of getting it working normal again.

That may explain why they were not eager to give you a CPeptide test. There were major doubts as to my type and along with the GAD I was proved to be T1.

 

[BlueArmy]

That may explain why they were not eager to give you a CPeptide test. There were major doubts as to my type and along with the GAD I was proved to be T1.

Yeah I get that, my DN was in my class at school. I know her. She was keen to help me but couldn’t which is why she read the criteria to me for referring one of which was repeated BG levels below 3.9 which was weird to me.

 

[PattiEvans]

She was keen to help me but couldn’t which is why she read the criteria to me for referring one of which was repeated BG levels below 3.9 which was weird to me.

Indeed I would have thought it was more pertinent to test if you were getting consistently high BGs.

 

[rebrascora]

@BlueArmy I would guess that those would be referrals to the clinic of Type 2 diabetics on insulin who were getting repeated hypos rather than misdiagnosed Type 1s who are not on insulin/gliclazide and therefore not capable of experiencing hypos. Basically the nurse at the surgery would be expected to manage the Type 2s on their books but in certain circumstances they may struggle and need to refer them to the clinic for specialized help and that is what those guidelines would cover. I think NICE are unlikely to set guidelines to cover for potential misdiagnosis.

 

[Paulines7]

I wake with a baseline of 14.4. It spikes to 18.5 with a breakfast of Greek yogurt and fruit, can go to 20 if I have toast. Avoid bread now. During the day I stick to salads and fruit, but sugars don’t go below 12.9. Evening meal is salads and meats or stir fry veg, with maybe a small portion of brown rice or pasta. Bloods can spike to 18 on minimum carbs. I aim to stick to 35-40g carb per meal and 30g for snacks.

Lalafil12, I am sorry to hear of the problems you are having regarding your blood sugar levels. When I was first diagnosed in 2014 my GP told me to have brown rice and pasta but they sent my blood sugar readings soaring up to 30. I have now substituted them with cauliflower rice and edamame pasta. The former is easy to make and there are many recipes online. The latter that I enjoy most is Liberto Organic Edamame Fettuccine which I buy from Amazon. They sell a black bean spaghetti too though I don't like it as much as the fettuccine.

I also have Greek yoghurt for breakfast but please ensure that the fruit you are having with it is a berry fruit and don't have too much of it. Occasionally I like to have bread so I buy LivLife low-carb bread from Waitrose. It lasts for several weeks if kept in the fridge and is ideal for cheese or eggs on toast. Each slice is 3.8g net carbs so two slices with cheese or eggs is a tasty low carb meal.

For the first year, I kept a spreadsheet record of every thing I ate and took my blood sugar readings before eating and 1½ hours afterwards. I found this very useful to look back on and I am sure it would be a great help to you if you start one now.

I agree with all the other posters on here that you may well be a Type 1 and if things don't improve for you soon, go back to your GP. Good luck Lalafil12, I hope you get things sorted soon.