Levels not going down

[Kazzyscruff]

Hi all,

I’ve been a lurker for a while but decided to post and ask for some advice.

I’ve just had my most recent blood test and my levels have gone up again. I’m on 2 metformin a day but appear to be doing the right things.

I’ve lost 6 stone in the last 2 years

Exercise hard 5 times a a week for 30 mins (dance, HITT, rock climbing, running etc)

Most of my food is cooked from scratch. I eat loads of fruit, veg and fish

I work with a personal trainer at the gym to build muscle and lose fat. This is working well. I weigh in on a monthly basis on an in body scanned which not only measures my weight but body fat and lots of other measurements too.

Visceral fat around my middle has decreased massively.

You can physically see the changes and I’ve got the numbers.

I’m 43 and going through peri menopause.

My surgery nurse isn’t great. When I’ve had a test, she texts me to tell me the dangers of high levels and basically how I need to do more but what?

I’ve got an appointment with the community team next week who I’m helping may be able to help.

In the meantime, if anybody has any ideas they would be gratefully received. Thank you for reading

 

[Eddy Edson]

Hi all,

I’ve been a lurker for a while but decided to post and ask for some advice.

I’ve just had my most recent blood test and my levels have gone up again. I’m on 2 metformin a day but appear to be doing the right things.

I’ve lost 6 stone in the last 2 years

Exercise hard 5 times a a week for 30 mins (dance, HITT, rock climbing, running etc)

Most of my food is cooked from scratch. I eat loads of fruit, veg and fish

I work with a personal trainer at the gym to build muscle and lose fat. This is working well. I weigh in on a monthly basis on an in body scanned which not only measures my weight but body fat and lots of other measurements too.

Visceral fat around my middle has decreased massively.

You can physically see the changes and I’ve got the numbers.

I’m 43 and going through peri menopause.

My surgery nurse isn’t great. When I’ve had a test, she texts me to tell me the dangers of high levels and basically how I need to do more but what?

I’ve got an appointment with the community team next week who I’m helping may be able to help.

In the meantime, if anybody has any ideas they would be gratefully received. Thank you for reading

What BG levels are you seeing?

I can well undertsand being frustrated if you're not seeing improvements after what sounds like some really hard work!

 

[Kazzyscruff]

My results yesterday were 114 which is really high up from 104 last June

 

[Eddy Edson]

My results yesterday were 114 which is really high up from 104 last June

That is high! What are your doc/nurse like? Are they engaged, what do they say about it?

With the weight loss etc and the lack of & worsening response to Met, I think a common response around here would be to suggest that maybe you're actually Type 1 and to talk to yr doc about getting tested for that.

 

[Kazzyscruff]

I was diagnosed in 2017 as type 2 through a blood test. Is there a specific test for type 1 and could type 2 be mistaken for type 1? I’d never given that a thought.

Unfortunately the diabetes nurse isn’t very engaged at the practice. After a bad test she will text me and tell me what an awful job I’m doing but no practical support. She seems to think I’m not doing enough because the numbers are high. I really do want to get them down but I’m at a loss.

I tried Trulicity a couple of years ago but that made me quite unwell so I had to come off it

 

[42istheanswer]

I was diagnosed in 2017 as type 2 through a blood test. Is there a specific test for type 1 and could type 2 be mistaken for type 1? I’d never given that a thought.

Unfortunately the diabetes nurse isn’t very engaged at the practice. After a bad test she will text me and tell me what an awful job I’m doing but no practical support. She seems to think I’m not doing enough because the numbers are high. I really do want to get them down but I’m at a loss.

I tried Trulicity a couple of years ago but that made me quite unwell so I had to come off it

There are additional tests that can help to show if it's type 1, but they need to then be interpreted. The general test that shows you are diabetic is the HbA1c and they often then guess based on factors like weight and age whether you are more likely to be type 1 or 2 without testing further. I would definitely push for testing/referral to hospital diabetes clinic in your situation

 

[RBZ5416]

Assuming there's no error in the HbA1c numbers you've quoted I'm shocked that there's not significant intervention from your practice. Clearly the Metformin isn't sufficient for those levels, nor would I expect it to be. Not withstanding that we're all different, I was put on a full basal/bolus insulin routine when my HbA1c hit 117 in May last year following Covid.

Those levels would also place you at risk of DKA, so I'd recommend purchasing some Ketostix so you can test for ketones.

As above, I'd be asking the GP to refer you for further investigation & meds review.

 

[Eddy Edson]

I was diagnosed in 2017 as type 2 through a blood test. Is there a specific test for type 1 and could type 2 be mistaken for type 1? I’d never given that a thought.

Unfortunately the diabetes nurse isn’t very engaged at the practice. After a bad test she will text me and tell me what an awful job I’m doing but no practical support. She seems to think I’m not doing enough because the numbers are high. I really do want to get them down but I’m at a loss.

I tried Trulicity a couple of years ago but that made me quite unwell so I had to come off it

Type 1's being misdiagnosed as Type 2 is quite common, unfortunately.

Your nurse sounds like she has not much to offer. As suggested above, I'd push for a referral to a diabetes clinic.

@everydayupsanddowns - does DUK have some kind of resource doc for people who might be in this situation: how to go about getting referrals etc etc?

 

[Kazzyscruff]

Type 1's being misdiagnosed as Type 2 is quite common, unfortunately.

Your nurse sounds like she has not much to offer. As suggested above, I'd push for a referral to a diabetes clinic.

@everydayupsanddowns - does DUK have some kind of resource doc for people who might be in this situation: how to go about getting referrals etc etc?

Thank you. That’s really helpful

I am seeing the community team on Monday (because I am complex for my practice to deal with) so I will push for testing.

If it’s not type one, any other ideas on why the numbers are going up?

I’m mixed race with South Asian heritage so that may be a factor

Reply

 

[Ditto]

If it turns out you really are Type 2 then I'd lay off the fruit. If I ate 'loads of fruit' I'd be in the double figures. My body can't handle it, nor potatoes or rice. Congratulations on the weight loss, that's marvellous. Hope you get sorted.

 

[Eddy Edson]

If it’s not type one, any other ideas on why the numbers are going up?

Maybe worth looking at yr carb intake but anything anybody tells you would just be guessing - you need some competent qualified medical input.

Most important for now, whatever the reason for yr HbA1c being high, I think they should be looking at what to do about yr medication to bring it down.

 

[DaveB]

Many GPs assume if you aren't a child that by default you are T2. They may not be aware of Late onset T1 as the assumption is that all T1s occur in early childhood thru auto-immunity. If you are slim at diagnosis and have lost weight unexpectedly recently then LADA/T1 is quite likely. This was the case for me but my GP refused to accept that. If you have excess weight then being T2 is more likely. The two tests for T1 are GAD and C-Peptide. The former tests for antibodies but as there are other causes of pancreatic beta cell death this may come our negative and prove little. The C-Peptide tests your insulin production which will be below normal if T1. I had to have the tests done privately but my lovely nurse when I was finally given insulin referred me to the Diabetes clinic and have been managed well since then. Let's hope your Community Team offer you the tests and the appropriate medication. Metformin can't manage that high BS level by itself.

 

[Deb_l]

Do you have a blood glucose monitor at home so you can test daily and also test which foods are impacting your levels?

I found my monitor an invaluable tool in finding out I cannot tolerate much fruit at all (strawberries are still good). Potatoes, rice and bread are also no-go foods.

My GP surgery have been brilliant and I can't fault them but you can and should demand better interaction from yours. Diabetes is classed as a chronic illness and should be closely monitored by your health care provider.

 

[Leadinglights]

I think that as you are struggling so much to bring your level down from what is actually quite worryingly high then monitoring your blood glucose at home would both enable you to identify any foods which are causing huge increases in blood glucose but also provide some evidence that you are making every effort with your diet in terms of restricting your carb intake as that will indicate the medication and diet are not working. That will hopefully mean they will refer you to the diabetic clinic without too much persuasion. Also do push for the additional tests.

 

[everydayupsanddowns]

@everydayupsanddowns - does DUK have some kind of resource doc for people who might be in this situation: how to go about getting referrals etc etc?

Welcome to the forum @Kazzyscruff

It might help to call the DUK Helpline (9-6 Mon-Fri), they may be able to offer some help and advice.

Well done on all the positive changes you have been making @Kazzyscruff - especially the weight loss and reduction in visceral fat. That should really help.

Sounds like you are keeping a close eye on various body metrics/numbers to measure your progress. Are you monitoring blood glucose levels as part of that?

Many members here find that a very practical way to optimise their menu. Some members here have discovered that they are particularly sensitive to carbohydrates. It isn’t only sugars that you need to be mindful of. All carbohydrates get broken down into blood glucose, so finding the portion sizes and sources of carbs that suit your body best can be really helpful. Some find that their body hasn’t read the press release on which are supposed to be ‘slow release’, and have to choose the types that their own body responds well to.

You can use a BG meter, taking a reading immediately before and again 2hrs after the first bite of a meal, to see what the differences are, to see the ‘meal rise’ (initially in a way the numbers themselves matter less than the differences between them). Ideally you would want to see a rise of no more than 2-3mmol/L at the 2hr mark.

Once you can see how you respond to different meals you can begin experimenting with reducing portion sizes of the carbs where you see bigger rises. You might find that you are particularly sensitive to carbohydrate from one source (eg bread), but have more liberty with others (eg oats or basmati rice) - It’s all very individual! You might even find that just having things at a different time of day makes a difference - with breakfast time being the trickiest.

Over weeks and months of experimentation you can gradually tweak and tailor your menu to find one that suits your tastebuds, your waistline, your budget and your BG levels - and a way of eating that is flexible enough to be sustainable long-term. 🙂

If you need to self fund your BG meter, the most affordable meters members here have found are the SD Gluco Navii or the Spirit Tee2 - which both have test strips at around £10 for 50

Hope you are able to get a referral for cPeptide and / or GAD antibody tests to clarify your diabetes type - and also get a bit more help and support from your GP and perhaps some additional meds?