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Chelseagirl

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65 year old with T2. Gestational diabetes x 3, then lost a load of weight and diagnosed T2 when youngest was 3. Oral meds to begin with, which I really struggled to achieve anything with, then onto insulin when I suggested it, as I had been on it during last pregnancy. Many years on, still there! Been prescribed Dapa about 6 months ago. The thing that has helped me most though, is self funding Dexcom, which has tightened control no end. Now changed to Dexcom One+ which is just as good.
 
Hi and welcome.

Your history is interesting and I wonder if anyone ever considered that you might actually be Type 1 rather than Type 2. It is all too easy for Health Care Professionals to assume people are Type 2 when they develop diabetes later in life and are under the false impression that Type 1 just develops in children and young adults, but there are plenty of us here on the forum who developed it as mature adults. I was 55. The red flag is usually the sudden weight loss and a high HbA1c and needing insulin relatively quickly or oral meds not being effective. Did they ever do any tests to rule out Type 1?

Which insulins are you using and what sort of doses if you don't mind me asking? Just wondering if your doses are relatively low which again would also suggest Type 1.

Have you tried to get CGM on prescription. Libre 2 or Dexcom One (and both plus versions) should be available, even as a Type 2 on multiple daily injections (MDI) of insulin but as a Type 1, it is generally more straightforward to get it prescribed, which is wrong but sadly the way the system works. As a Type 1 there is also the possibility of an insulin pump which are not generally available to Type 2s.

Anyway, those are just my thoughts on reading your post so I included them in case they are helpful to you. There are a lot of us who were misdiagnosed as Type 2 initially so I suspect there are lots more out there who are still misdiagnosed and not getting the support they need.
 
rebrascora said:
Hi and welcome.

Your history is interesting and I wonder if anyone ever considered that you might actually be Type 1 rather than Type 2. It is all too easy for Health Care Professionals to assume people are Type 2 when they develop diabetes later in life and are under the false impression that Type 1 just develops in children and young adults, but there are plenty of us here on the forum who developed it as mature adults. I was 55. The red flag is usually the sudden weight loss and a high HbA1c and needing insulin relatively quickly or oral meds not being effective. Did they ever do any tests to rule out Type 1?

Which insulins are you using and what sort of doses if you don't mind me asking? Just wondering if your doses are relatively low which again would also suggest Type 1.

Have you tried to get CGM on prescription. Libre 2 or Dexcom One (and both plus versions) should be available, even as a Type 2 on multiple daily injections (MDI) of insulin but as a Type 1, it is generally more straightforward to get it prescribed, which is wrong but sadly the way the system works. As a Type 1 there is also the possibility of an insulin pump which are not generally available to Type 2s.

Anyway, those are just my thoughts on reading your post so I included them in case they are helpful to you. There are a lot of us who were misdiagnosed as Type 2 initially so I suspect there are lots more out there who are still misdiagnosed and not getting the support they need.
Click to expand...
Hi
I have asked this question a couple of times to DN and a consultant. They assure me I’m T2, but I agree that I feel I’m more likely to be T1, but who am I to question. I have a rubbish DN at the moment. Think she read a book about diabetes once to get the job. Weight went down to 8stones, and I’m 5’8” tall, so red flag hoisted. Don’t know where I can go from there. I did request a referral to consultant as I’ve moved house/area/hospital/GP, but this was reviewed by the hospital and refused.
As far as the CGM goes, again I’ve asked but been told no

I’m on Humalog three times daily, supposedly 6 units but do adjust to what I’m eating. Abasaglar x 14 units. 1500 mg Metformin, can’t tolerate more. Already own shares in Imodium! Dapa added 6 months ago.

This is the reply I received when asking the question re T1

Coded entry - Short message service text message sent to patient (XaMiI); ; Dear K; I have been through your notes as you said you had been quite thin when diagnosed so I wanted to check, we normally say if rapid weight loss at diagnosis then we do anti-body tests to check not type 1. However you saw a consultant at the N&N and he said you had diabetes in pregnancy and then went onto develop tyep 2 after this. ; You haven't ever had a admission with a condition called Diabetic Ketoacidosis have you ? or have any pain in you calves on walking?;

As far as I know I did not get any antibody checks.
 
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I have never had DKA and I believe it is less likely when you develop Type 1 later in life because the beta cells are killed off more slowly by the immune system, so you tend to have dwindling insulin production rather than a sudden crisis. I also think that some people are more prone to DKA than others perhaps due to other factors in their body chemistry.

I have no idea what the pain in your calves when walking has to do with anything? Can anyone else enlighten me on what that has to do with Type 1?

Your insulin doses are in line with Type 1. Generally Type 2 diabetics experience insulin resistance and need much larger doses to overcome that resistance. I cannot understand why they have put you on a flozin (Dapa) as well as insulin and Metformin and I would be surprised if either are helpful.

Sadly there is still a lot of ignorance within the medical profession regarding adult onset Type 1 and even within the specialist units in some cases at junior registrar and even consultant level. I was really lucky and had a switched on DN at my GP practice but that is partly because my consultant fosters an open door policy for those practice nurses within his catchment area to seek guidance if someone turns up who doesn't present as typical Type 2. I do wonder sometimes if there is a discomfort in overturning someone else's diagnosis and it is easier to just stick with the decision someone else made. This may be partly because those clinicians have no idea how much difference a correct diagnosis can make to a patient both in mental/emotional terms but also in the treatment they receive. There is a first and second class treatment system within the NHS for Type 1 and Type 2 diabetes and unless you have experienced both you don't realise how significant it is. It should not be the case but it does exist.

As regards getting Libre or Dexcom on prescription, you need to read and quote NICE guidelines and provide evidence of how you qualify. I imagine you may need to get a referral to clinic to achieve that.
An alternative might be to get Antibody testing done privately and a C-peptide. Unfortunately sometimes there are no significant antibodies left if the test is done many years after initial diagnosis, so it isn't always conclusive and it isn't cheap, but if it meant that you got a positive result and got CGM on prescription as a Type 1, then you would save money overall as self funding them is not cheap. The C-peptide test shows how much insulin your own body is making and can help to suggest if you are Type 1 (not producing very much) or Type 2 (producing more but resistant to it)
It should not be the case that you need to go private to get a proper diagnosis because you were simply assumed to be Type 2 by the NHS, but it might be worth it in the long run.
 
rebrascora said:
I have never had DKA and I believe it is less likely when you develop Type 1 later in life because the beta cells are killed off more slowly by the immune system, so you tend to have dwindling insulin production rather than a sudden crisis. I also think that some people are more prone to DKA than others perhaps due to other factors in their body chemistry.

I have no idea what the pain in your calves when walking has to do with anything? Can anyone else enlighten me on what that has to do with Type 1?

Your insulin doses are in line with Type 1. Generally Type 2 diabetics experience insulin resistance and need much larger doses to overcome that resistance. I cannot understand why they have put you on a flozin (Dapa) as well as insulin and Metformin and I would be surprised if either are helpful.

Sadly there is still a lot of ignorance within the medical profession regarding adult onset Type 1 and even within the specialist units in some cases at junior registrar and even consultant level. I was really lucky and had a switched on DN at my GP practice but that is partly because my consultant fosters an open door policy for those practice nurses within his catchment area to seek guidance if someone turns up who doesn't present as typical Type 2. I do wonder sometimes if there is a discomfort in overturning someone else's diagnosis and it is easier to just stick with the decision someone else made. This may be partly because those clinicians have no idea how much difference a correct diagnosis can make to a patient both in mental/emotional terms but also in the treatment they receive. There is a first and second class treatment system within the NHS for Type 1 and Type 2 diabetes and unless you have experienced both you don't realise how significant it is. It should not be the case but it does exist.

As regards getting Libre or Dexcom on prescription, you need to read and quote NICE guidelines and provide evidence of how you qualify. I imagine you may need to get a referral to clinic to achieve that.
An alternative might be to get Antibody testing done privately and a C-peptide. Unfortunately sometimes there are no significant antibodies left if the test is done many years after initial diagnosis, so it isn't always conclusive and it isn't cheap, but if it meant that you got a positive result and got CGM on prescription as a Type 1, then you would save money overall as self funding them is not cheap. The C-peptide test shows how much insulin your own body is making and can help to suggest if you are Type 1 (not producing very much) or Type 2 (producing more but resistant to it)
It should not be the case that you need to go private to get a proper diagnosis because you were simply assumed to be Type 2 by the NHS, but it might be worth it in the long run.
Click to expand...
Right. The pain in calves can be a symptom of Peripheral Artery Disease, which can be a side effect of the diabetes ( along with so many other things!) and if she had read through my notes, she would have seen that I had a blocked Femoral artery bypass four years earlier. The DN said she had put me on Dapa as I’d previously had a heart attack (very mild, but silent which is also typical of diabetics I was told when transferred to Cardiac unit). As it doesn’t seems to have helped my BG levels any, it has caused weight loss amounting to 8 kilos roughly, which is no bad thing I guess. She has also told me not to change my insulin doses. Said request has been ignored to a certain extent. Oh and never to change my long acting insulin.
The point of trying to get a consultant referral was to mention the CGM use as it has woken me during the night as I’m a bit crap at waking with low BG which I believe is a possible route to getting it prescribed. Without the Dex, I have been 2.5 or 2.8 before it woke me. Also to get comfirmation that I am capable of adjusting my own insulin as required. This was fine with my previous consultant in Norfolk, he was a T1 himself so was really good. Apart from not wanting to take any actions to confirm T1/T2.
 
PAD can happen with Type 1 or Type 2 because it is a symptom of high BG levels and nothing to do with what caused the diabetes, so I don't understand why it is relevant with regard to a possible misdiagnosis.
Are you aware of the limitations of CGM? They are prone to what we call compression lows, whereby if constant pressure is applied to the sensor for 15+ minutes, it will gradually start to read falsely low. Any low alarms though the night should be double checked with a finger prick because lying on the sensor in your sleep can cause one of these compression lows. It is however normal to have a lower threshold of hypo awareness during our sleep because many of our awareness signs are sensory and whilst we are asleep our senses are more shut down. It is also normal for non diabetics to drop below 4 during the depths of the night as that is part of the natural circadian rhythm, so is is normal not to wake up at those mid 3s levels at night. I would definitely check they are not compression lows though. You can usually see on the graph when your levels suddenly dip, whereas a genuine overnight low is usually a slow steady decline.
I will link to the thread we have where there is a list of CGM imitations which is useful to be aware of....
forum.diabetes.org.uk

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...
forum.diabetes.org.uk forum.diabetes.org.uk

If you are experiencing compression lows, then placement of the sensor can help. I believe Dexcom are less prone to this problem when placed on other parts of the body but with Libre only being certified for use on the arm, it happens more often.
 
rebrascora said:
PAD can happen with Type 1 or Type 2 because it is a symptom of high BG levels and nothing to do with what caused the diabetes, so I don't understand why it is relevant with regard to a possible misdiagnosis.
Are you aware of the limitations of CGM? They are prone to what we call compression lows, whereby if constant pressure is applied to the sensor for 15+ minutes, it will gradually start to read falsely low. Any low alarms though the night should be double checked with a finger prick because lying on the sensor in your sleep can cause one of these compression lows. It is however normal to have a lower threshold of hypo awareness during our sleep because many of our awareness signs are sensory and whilst we are asleep our senses are more shut down. It is also normal for non diabetics to drop below 4 during the depths of the night as that is part of the natural circadian rhythm, so is is normal not to wake up at those mid 3s levels at night. I would definitely check they are not compression lows though. You can usually see on the graph when your levels suddenly dip, whereas a genuine overnight low is usually a slow steady decline.
I will link to the thread we have where there is a list of CGM imitations which is useful to be aware of....
forum.diabetes.org.uk

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...
forum.diabetes.org.uk forum.diabetes.org.uk

If you are experiencing compression lows, then placement of the sensor can help. I believe Dexcom are less prone to this problem when placed on other parts of the body but with Libre only being certified for use on the arm, it happens more often.
Click to expand...
Yes, I’m sure as I don’t treat to the CGM. Dex One+ is upper arms and abdomen. Tried abdomen but it wasn’t as accurate. Have mine on front of upper arms as I am a back sleeper. Very accurate amd causes no probs there. Apart from white circles during the summer!
 
everydayupsanddowns said:
Your nurse wouldn’t get on well with my approach then - I change my basal dose at least once a month, sometimes 2-3 times a month!
Click to expand...
I need to change my evening basal dose (I am on twice a day Levemir) on an almost daily basis otherwise I am either hypo or high all night. It varies between 0 and 5units depending upon how much exercise I have done over the preceding days. My morning dose is much more stable at 20-22 units but if I didn't adjust my evening dose regularly I would be in a mess. It is one of the main reasons why I love Levemir so much, because it allows me that flexibility.
 
Chelseagirl said:
She told me not to change it as it’s based on my weight and the pre evening meal reading.
Click to expand...

Well as a starting point, so was mine I suppose.

But I experience observable seasonal variation in insulin sensitivity (need less insulin in warmer months) and also as levels of activity / stress / and other diabetes randomness ebb and flow during the year.
 
everydayupsanddowns said:
Well as a starting point, so was mine I suppose.

But I experience observable seasonal variation in insulin sensitivity (need less insulin in warmer months) and also as levels of activity / stress / and other diabetes randomness ebb and flow during the year.
Click to expand...
Think I need to do more research on this!
 
Chelseagirl said:
Think I need to do more research on this!
Click to expand...

Well one possibilty is to systematically check how your dose is performing during the 24 hours.

Ideally if basal is the only active insulin and you aren’t being madly active it should *just* hold your BG levels steady, wherever they are, until your next mealtime.

There’s a write-up here. Written from a T1 perspective, but suitable/adaptable for anyone on MDI.

www.mysugr.com

How To Successfully Test Your Basal Rate

Are you looking for basal rate information and testing instructions? Perfect! You're in the right place!
www.mysugr.com www.mysugr.com

I found the technique of basal testing made a huge difference to me when a member suggested it on a different forum. Suddenly a lot of my diabetes randomness made a lot more sense!
 
everydayupsanddowns said:
Well one possibilty is to systematically check how your dose is performing during the 24 hours.

Ideally if basal is the only active insulin and you aren’t being madly active it should *just* hold your BG levels steady, wherever they are, until your next mealtime.

There’s a write-up here. Written from a T1 perspective, but suitable/adaptable for anyone on MDI.

www.mysugr.com

How To Successfully Test Your Basal Rate

Are you looking for basal rate information and testing instructions? Perfect! You're in the right place!
www.mysugr.com www.mysugr.com

I found the technique of basal testing made a huge difference to me when a member suggested it on a different forum. Suddenly a lot of my diabetes randomness made a lot more sense!
Click to expand...
Thank you! Lots of reading there that I’m sure it will help.
 
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