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

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

lalafil12

New Member
Relationship to Diabetes
Type 2
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.
 
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.
If she would be considering Type 1 if you were younger, then she should be considering Type 1 for you now. There is no age limit to developing Type 1. I was age 51 at diagnosis, and many on here were similar age, or older.
 
So sorry to hear what a tough time you are having @lalafil12 :(

Does your DSN know how careful you are being about carbs @lalafil12 ?

Sounds like the assumption that the cut off for likelihood of it being late-onset T1 at 30 might be worth reconsidering?
 
how did you get diagnosed as type 1? I am happy to accept any diagnosis to get on the correct treatment plan. I don’t no think they are considering it due to my age
 
If she would be considering Type 1 if you were younger, then she should be considering Type 1 for you now. There is no age limit to developing Type 1. I was age 51 at diagnosis, and many on here were similar age, or older.
how did you get diagnosed as type 1? I am happy to accept any diagnosis to get on the correct treatment plan. I don’t no think they are considering it due to my age
 
They should be. Type 1 is less common as people age but it's very much possible. (Two examples: Theresa May, Sir Lindsay Hoyle, https://www.bbc.co.uk/news/uk-politics-50865877 )

(I don't mean you are Type 1, but they should be at least considering it given that your dietary changes don't seem to be doing much.)
I have said that. But they said first line of action treat as type 2. Did you get diagnosed as type 2 at first?
 
No follow up appointment at all? In that case I suggest you keep a diary detailing your food and your BGs before each meal and at 2 hours after, give it 2 weeks and if no improvement then contact the nurse again and ask for a follow up appointment. Also, if you are seeing high numbers I would go to the chemist and buy a tub of ketone strips (around £5) and use them when BGs are high. If you do have ketones it may indicate T1. I was 57 at diagnosis.
 
Did you get diagnosed as type 2 at first?
I was 15 years old and close to being in a coma (and had recent lost lots of weight, and I wasn't fat to start with), so I was the entirely classical presentation of childhood Type 1 diabetes. So not hard at all to diagnose.
 
how did you get diagnosed as type 1? I am happy to accept any diagnosis to get on the correct treatment plan. I don’t no think they are considering it due to my age
I was misdiagnosed as Type 2 at first, but I was lucky in that my GP was keeping a close eye because she said she thought it might turn out to be a 'weird Type 2', and when it eventually became obvious that the Type 2 meds I’d been put on weren’t having much effect on my levels, (nor the low carb diet I'd decided I needed) she referred me to the clinic at the hospital, who immediately suspected Type 1, and did a test for antibodies (which is a sign that your pancreas is undergoing an autoimmune attack). It still took a whole year to get proper treatment sorted out, though, because I didn’t know that I should have been pushing for a proper diagnosis.
 
No follow up appointment at all? In that case I suggest you keep a diary detailing your food and your BGs before each meal and at 2 hours after, give it 2 weeks and if no improvement then contact the nurse again and ask for a follow up appointment. Also, if you are seeing high numbers I would go to the chemist and buy a tub of ketone strips (around £5) and use them when BGs are high. If you do have ketones it may indicate T1. I was 57 at diagnosis.
Thanks. I will monitor for a few more weeks BC and see and then call. They did a urine test 5 weeks ago and all was fine.
 
I was misdiagnosed as Type 2 at first, but I was lucky in that my GP was keeping a close eye because she said she thought it might turn out to be a 'weird Type 2', and when it eventually became obvious that the Type 2 meds I’d been put on weren’t having much effect on my levels, (nor the low carb diet I'd decided I needed) she referred me to the clinic at the hospital, who immediately suspected Type 1, and did a test for antibodies (which is a sign that your pancreas is undergoing an autoimmune attack). It still took a whole year to get proper treatment sorted out, though, because I didn’t know that I should have been pushing for a proper diagnosis.
That’s interesting. I wasn’t too keen on first line medication as it would upset my IBS. I asked to explore other options and they said no. Try diet.

I dud push for an alternative diagnosis as my fatigue was so sudden. But they have diagnosed as type 2 due to age alone. I think they think I am in denial. Just confused as why my diet has not saw a change.
 
Hi. I had my T1 tests done privately. Worth the cost if your surgery aren't on the ball. You should be having follow-up appointments and do ask the DN for the GAD and C-Peptide tests for T1. You need Metformin SR (Slow Release) if you have IBS rather than the standard version.
 
Hi. I had my T1 tests done privately. Worth the cost if your surgery aren't on the ball. You should be having follow-up appointments and do ask the DN for the GAD and C-Peptide tests for T1. You need Metformin SR (Slow Release) if you have IBS rather than the standard version.
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.

@lalafil12 - push to see your GP, now. Slow release metformin is kinder on your stomach so you should of as a minimum been offered that. Your BG is really high and the sooner you get it down the better. Don’t let them fob you off.
 
Hi. I had my T1 tests done privately. Worth the cost if your surgery aren't on the ball. You should be having follow-up appointments and do ask the DN for the GAD and C-Peptide tests for T1. You need Metformin SR (Slow Release) if you have IBS rather than the standard version.
Thank you. I might do this. My BG does seem to fluctuate throughout the day, so I conclude I do have insulin in my body.
Was it expensive!
 
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.

@lalafil12 - push to see your GP, now. Slow release metformin is kinder on your stomach so you should of as a minimum been offered that. Your BG is really high and the sooner you get it down the better. Don’t let them fob you off.
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 read your first post about having your diagnosis given by a nurse, BUT as good and great as nurses are you need to talk to your GP or a Diabetic consultant and demand testing to confirm your type, you dont sound like a typical T2 from the comments posted.
To try and get your numbers better look at your carb intake more closely, there are no good carbs, white, black, brown, blue they are all carbs and your body is a master of turning them into glucose so dont assume that some are better than others at the moment, once you have a proper diagnosis then you can plan how to get a handle on the diabetes
 
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 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
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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