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[Buddug76]

This is my first thread hope I'm doing this right. I haven't seen a diabetic nurse in over 4 yrs (I've been T2 for about 20yrs) i just got mu Hba1c results bach today. In March it was 83mmol and today it's 41mmol. Just want to know really if this is a good results and where do I stand now if it's 41?? Fed up of waiting to see the diabetic nurse even though been chasing them for the last 5 months now.

 

[Lakeslover]

Hi, and welcome to the forum.

Firstly, yes you have created your first post absolutely correctly.

It’s very poor that you haven’t been able to talk to a diabetic nurse for that long.

41 is a very good result, and a massive improvement over your last result. What have you changed to achieve that? What insulins do you use?

How do you monitor your diabetes from day to day? Do you use a CGM (like libre or dexcom)?

My only worry with such a good result would be whether you are seeing any episodes of hypoglycaemia?

 

[Buddug76]

Hi, and welcome to the forum.

Firstly, yes you have created your first post absolutely correctly.

It’s very poor that you haven’t been able to talk to a diabetic nurse for that long.

41 is a very good result, and a massive improvement over your last result. What have you changed to achieve that? What insulins do you use?

How do you monitor your diabetes from day to day? Do you use a CGM (like libre or dexcom)?

My only worry with such a good result would be whether you are seeing any episodes of hypoglycaemia?

Hi thank you for your reply. Glad to hear that it's a good results feeling very happy and proud . I've always for yrs been on the really high side and have now problems with my eyes and nerve damage, and diagnosed in Dec with stage 3 chronic kidney disease. I take Toujeo and I think what has helped mostly is Mounjaro. Had to pay out of my own pocket for 8 months but waw the results all show in my Hba1c and my kidney results has come back from 20 to 11.7. But now I'm worried I've had to stop the mounjaro because of the price increase. I monitor my sugars with the libre sensor. But these last few weeks noticed a big change for the first time I'm having hypos, and they all happen mostly at nights.

 

[Lakeslover]

I’m assuming if you’ve been using libre for a while these lows are not due to you lying on the sensor (usually called compression lows)?

I think however hard it is you do need to talk to your diabetic nurse about whether your insulin dose needs adjusting to avoid these lows. Does your medical team know you’ve been using Mounjaro?

 

[Buddug76]

I never try to lie on the arm where my sensore is, plus has happend few times in the day as well. Ive been to doctors few times now about this all say I need to see the diabetic nurse, which I've been waiting now for months. Yes all my doctors plus the kidney specialist know I take the mounjaro and they say the can't prescribe it only the diabetic nurse, but they even see how much it has helped. So frustrating

 

[Jaylee]

I monitor my sugars with the libre sensor. But these last few weeks noticed a big change for the first time I'm having hypos, and they all happen mostly at nights.

Hi,

Welcome to the forum.

Sorry to read you now have problems with your eyes. What issues have been diagnosed with your vision?
Somtimes fast reduction in BG levels & HbA1c can cause issue with the eyes.? (I’ve been there.)
It’s recomended a slow descent on BG levels like a diver’s decompression?

Could you post a screen shot of when the night lows happen on your Libre graph? (I got this knack of spotting a compression low from a true hypo.)
Did you double check these lows against a blood glucose meter? It is always good to get a second opinion if the alarm wakes you up..

 

[Lakeslover]

It must be so frustrating to have to wait so long to see the diabetic nurse. I was referred to a hospital diabetic nurse and had to wait 4 months. Even that seemed like a lifetime. Only to be told they wouldn’t prescribe Mounjaro because I have background retinopathy and it isn’t appropriate where there are certain existing problems.

Maybe ask if you could see the DM urgently as you are now having recurrent hypos? It might bump you up the list. I’d discuss the Mounjaro and eye problems with them as well.

 

[grantg]

have you tried asking the consultant that deals with your CKD to refer you to the DSN to see if that can possibly speed things up for you?

compression lows can occur without actually laying on it. if i sit down back against chair (not touching sensor it will show a little lower too). usually compression lows will from prior to laying down level in graph will pop up within a very short time of standing up (approx 10-15 mins lag) to where it was prior to laying down.

 

[Buddug76]

have you tried asking the consultant that deals with your CKD to refer you to the DSN to see if that can possibly speed things up for you?

compression lows can occur without actually laying on it. if i sit down back against chair (not touching sensor it will show a little lower too). usually compression lows will from prior to laying down level in graph will pop up within a very short time of standing up (approx 10-15 mins lag) to where it was prior to laying down.

Thank you for that suggestion I'll deft try that when it happens . Thank you

 

[Buddug76]

It must be so frustrating to have to wait so long to see the diabetic nurse. I was referred to a hospital diabetic nurse and had to wait 4 months. Even that seemed like a lifetime. Only to be told they wouldn’t prescribe Mounjaro because I have background retinopathy and it isn’t appropriate where there are certain existing problems.

Maybe ask if you could see the DM urgently as you are now having recurrent hypos? It might bump you up the list. I’d discuss the Mounjaro and eye problems with them as well.

Ive been in contact with my doctor and the hospital and explained everything but still non the wiser with getting an app. I had laser on one eye and that's helped but the other eye..well...about 6 months ago they found that the optic nerve was swollen. Then about 2 months ago my eye sight started to go black just for few seconds and terrible headaches. I was rushed to hospital found that the optic nerve swollen even more. ( I do suffer from high blood pressure) I had a head scan and found i had pressure around the brain as well. Ended up having 2 scans a lumber puncture and an mri. But all clear. So still in the dark with what's happening. Going back on the 5th for more test. Ive now stopped the mounjaro because of the price but on the very low dosage of wegovy. None of the doctors have told me to stop it. Ive tried with my local nurse for now to change the dosage of my insulin to see if that helps with the hypos.

 

[Buddug76]

have you tried asking the consultant that deals with your CKD to refer you to the DSN to see if that can possibly speed things up for you?

compression lows can occur without actually laying on it. if i sit down back against chair (not touching sensor it will show a little lower too). usually compression lows will from prior to laying down level in graph will pop up within a very short time of standing up (approx 10-15 mins lag) to where it was prior to laying down.

Yes I asked the ckd specialist but all he said was he will write to my doctors and say it seems the mounjaro is helping and need to see the diabetic nurse ASAP. Well that was about 5 months ago. Plus was supose to see my ckd doctor again about 2 months ago for a review still waiting. Fed up going after everyone when I'm strygling myself health wise and work. But with the checking my sugars I will try what u suggested thank you

 

[Buddug76]

Yes I asked the ckd specialist but all he said was he will write to my doctors and say it seems the mounjaro is helping and need to see the diabetic nurse ASAP. Well that was about 5 months ago. Plus was supose to see my ckd doctor again about 2 months ago for a review still waiting. Fed up going after everyone when I'm strygling myself health wise and work. But with the checking my sugars I will try what u suggested thank you

 

[Rosie9876]

Re your CGM screenshots, I'm no expert, but I learned from an incident in which 3 successive newly attached Libre sensors read LO and 111 suggested I go to A&E, because I didn't have a glucometer to cross-check. My sensors were likely faulty (only time), but I have had readings just below range, like 3.6, and was told by doctor not to worry about it, as I'm not on medication which can cause hypos. Below 3.9 not unusual for non-diabetics. Those readings in red look scary, but it's to warn insulin users. Of course we should cross-check with fingerprick. I suspect your readings are not compression lows, but I could be wrong.

 

[Buddug76]

Re your CGM screenshots, I'm no expert, but I learned from an incident in which 3 successive newly attached Libre sensors read LO and 111 suggested I go to A&E, because I didn't have a glucometer to cross-check. My sensors were likely faulty (only time), but I have had readings just below range, like 3.6, and was told by doctor not to worry about it, as I'm not on medication which can cause hypos. Below 3.9 not unusual for non-diabetics. Those readings in red look scary, but it's to warn insulin users. Of course we should cross-check with fingerprick. I suspect your readings are not compression lows, but I could be wrong.

Hi. I have been crosschecking my readings with a glucometer when it happens to go low and they match. I know my reasings are in range but when for nearly w0yrs when my readings been between 18 to 32 coming down to below 4 all of a sudden we'll....think it's just going to take some time for my body to come to use to such low readings.

 

[grantg]

Hi. I have been crosschecking my readings with a glucometer when it happens to go low and they match. I know my reasings are in range but when for nearly w0yrs when my readings been between 18 to 32 coming down to below 4 all of a sudden we'll....think it's just going to take some time for my body to come to use to such low readings.

is that including checking via fingerprick in the middle of the night?

libre for me consistantly reads a little lower usually daytime 0.7- 0.8 out (some others find that it can read a little higher with a smaller percentage they can read bang on (when no fast changes - steady reading). daytime cross check usually more accurate for me nighttime tends to be out between somewhere between 1.1 and 1.4.

i guess you've taken into account 'acceptable' error of margin?

i'd suggest lay down like you do when in bed at night. when the graph is relatively flat and cross check then, would lay down for at least 30-45 mins.

i see on your graph you posted a rise in levels without a note near it? did you have food? i find it helpful marking all foods/exercise i do keeping detailed logs.

 

[Lakeslover]

Ive been in contact with my doctor and the hospital and explained everything but still non the wiser with getting an app. I had laser on one eye and that's helped but the other eye..well...about 6 months ago they found that the optic nerve was swollen. Then about 2 months ago my eye sight started to go black just for few seconds and terrible headaches. I was rushed to hospital found that the optic nerve swollen even more. ( I do suffer from high blood pressure) I had a head scan and found i had pressure around the brain as well. Ended up having 2 scans a lumber puncture and an mri. But all clear. So still in the dark with what's happening. Going back on the 5th for more test. Ive now stopped the mounjaro because of the price but on the very low dosage of wegovy. None of the doctors have told me to stop it. Ive tried with my local nurse for now to change the dosage of my insulin to see if that helps with the hypos.

@Rosie9876 just a reminder that @Buddug76 is an insulin user.

@Buddug76 Looking at the graphs they would be ideal if just a little higher…lovely flattish lines! It does look as if the insulin just needs slight adjustment. When you do see the DN I’d be inclined to suggest you reduce the insulin by a couple of units, wait for a couple of days to see what happens, then if it’s not enough reduce again by a couple of units etc, until you are happy with the levels. I.e making sure it’s in your control (but evidenced by your libre) and you don’t need to see them in future to make minor changes!

I don’t see any obvious compression lows.

It’s so hard when you need help and have to push so hard to get it. In some areas I think the NHS is crumbling under the pressure. I hope you get help soon.

 

[Buddug76]

Thank you yes I think i just need to adjust my insulin and see what happens. But yes trying to get app is awful. Trying so hard this last few months now to finally get some control over my diabetes. Ive also been struggling with bulimia for nearly 30yrs but noticed since I started the mounjaro my bulimia has been under control and actually been eating healthier and better and has helped with my diabetes. Its why I need to see my diabetic nurse I have so many things I need to talk about and need help and guidance. But doing this thread from only last night I've had more help and answers than I've had in yrs. So thank u to everyone

 

[Lakeslover]

That’s a really interesting side effect from Mounjaro. I wonder whether in the future it might be used as a treatment for eating disorders.

Just another thought. Is it the hospital nurse you are waiting to see? Could you try a complaint to PALs especially as your specialists have said you need to be seen urgently.

 

[Buddug76]

That’s a really interesting side effect from Mounjaro. I wonder whether in the future it might be used as a treatment for eating disorders.

Just another thought. Is it the hospital nurse you are waiting to see? Could you try a complaint to PALs especially as your specialists have said you need to be seen urgently.

I used to go to the hospital see the diabetic nurse and yes it's her I'm waiting to see. Doctors can only help me a certain amount. I need to contact the hospital again next week.