10 years on and now a newbie!!

[pippaandben]

Originally diagnosed 2011 and put on insulin within 6 months with me pleading for insulin as oral route not working. Beiong unhappy with support during Covid which lead me to change GP. Could not have made a better choice. Have been referred to Dabetes clinic with numerous twice weekly telephone consultations and adjustments to Levemir dose. Questionned as to why I was treating myself as a type 1 with card counting and correction doses (it was how I was taught initially with GP refusing to test me as "it is too expensive and doersn't matter as you are on insulin anyway") The result is I am currently waiting for the result of my cpeptide test, My basal is now 22 units morning and 24 at 10pm with humalog dose of 2 morning 2 lunch and 4 evening from 12am ,11 bedtime and carb count ration of 1/;9gm cars and correction dose 1;2 meter reading. My BS was regularly high teens and weekly in the 20-30. Clinic horrified at the lack of support previously and having been banned from correction doses, gradually increasing levemir over 8 weeks I am re-reading the books I got 10 years ago and learning how to be a possible true Type 2 (also testing for LADA). So definitely not a true newbie but it certainly feels like it.
Hope this pushes others to make more of a fuss about getting a true diagnosis as I now realise that it is not just taking insulin but a totally new ball game with a spluttering engine!!

 

[everydayupsanddowns]

Goodness @pippaandben

What a turn up!

Glad you are getting some appropriate support at long last.

Let us know the results of the checks and investigations when your classification has been confirmed.

 

[SB2015]

Hi @pippaandben

I am glad that you are now getting to the bottom of your diagnosis, and the c peptide test will tell you how much insulin you are still making. if diagnosed as adult it can be confusing as it often develops more slowly, so people often manage on different regimes than are common.

let us know how you get on When the results come through.

 

[pippaandben]

Have been told that test results will be about 6 weeks as there are very few laboratories in the country carrying out the C peptide tests! My regime is 1 unit humalog at breakfast, 2 at lunch and 3 dinner regardless and to forget about carb counting and correction doses. Am re-reading my books "thinking like a pancreas" and "Type 2 first year" with new understanding! Just hoping I get an early birthday present as that is Jan 19!

 

[trophywench]

Calling @Pattidevans - took her years to get a C peptide test even though aged 40+ she had dropped so much weight and since it was pre forums she'd joined the only diabetes Newsgroup that then existed and where no less than Alan Shanley had told her he thought she presented much more like T1, not T2. By then shedloads of other folk with diabetes had agreed with Alan. That's no use to anyone though if your GP isn't listening .....

Brill anyway! - jolly good luck determining which type you actually are so you can proceed accordingly!

 

[pippaandben]

Originally diagnosed 2011 and put on insulin within 6 months with me pleading for insulin as oral route not working. Beiong unhappy with support during Covid which lead me to change GP. Could not have made a better choice. Have been referred to Dabetes clinic with numerous twice weekly telephone consultations and adjustments to Levemir dose. Questionned as to why I was treating myself as a type 1 with card counting and correction doses (it was how I was taught initially with GP refusing to test me as "it is too expensive and doersn't matter as you are on insulin anyway") The result is I am currently waiting for the result of my cpeptide test, My basal is now 22 units morning and 24 at 10pm with humalog dose of 2 morning 2 lunch and 4 evening from 12am ,11 bedtime and carb count ration of 1/;9gm cars and correction dose 1;2 meter reading. My BS was regularly high teens and weekly in the 20-30. Clinic horrified at the lack of support previously and having been banned from correction doses, gradually increasing levemir over 8 weeks I am re-reading the books I got 10 years ago and learning how to be a possible true Type 2 (also testing for LADA). So definitely not a true newbie but it certainly feels like it.
Hope this pushes others to make more of a fuss about getting a true diagnosis as I now realise that it is not just taking insulin but a totally new ball game with a spluttering engine!!

Result of peptide test is that I am on the cusp!! Don't know what measurements mean but I am 0.03 away from being Type 1 so am possibly MODI. However after much changing around of Levemir I am now 29 units am. and 12 evening and just one unit humalog at each meal. This was at my last appt on Friday which was my first one face to face but still getting more and more hypos - 3 in one day 9 days ago. Usually on waking but a couple when out shopping. Now am using discovery sheet before next face to face appt.
Still finding out what I have been doing wrong eg must not pinch skin for injections, must change needle every time ( this would have meant 12 needles 9 days ago so am just changing daily), must have breakfast, lunch and dinner ( haven't had breakfast for 20 years!), must not carb count or do correction doses and so must not look at nutritional info, must eat 2 biscuits after a hypo but not a jam sandwich!! I am being praised for doing things right as a type 1 but it was all the wrong thing for me. The objective is to rely on long acting insulin only apparently as my pancreas is dumping insulin at inappropriate times they think.
Any comments, thoughts on questions to ask at next appt welcome.

 

[pippaandben]

Due to multiple hypos levemir dose changed to 33 units am and 9 evening with one unit humalog at breakfast and dinner. Have to contact centre if have more hypos itherwise telephone consultation next Thursday
y pm. The c peptide test was a urine sample test - can anyone enlighten me on my 0.03 reading?

Result of peptide test is that I am on the cusp!! Don't know what measurements mean but I am 0.03 away from being Type 1 so am possibly MODI. However after much changing around of Levemir I am now 29 units am. and 12 evening and just one unit humalog at each meal. This was at my last appt on Friday which was my first one face to face but still getting more and more hypos - 3 in one day 9 days ago. Usually on waking but a couple when out shopping. Now am using discovery sheet before next face to face appt.
Still finding out what I have been doing wrong eg must not pinch skin for injections, must change needle every time ( this would have meant 12 needles 9 days ago so am just changing daily), must have breakfast, lunch and dinner ( haven't had breakfast for 20 years!), must not carb count or do correction doses and so must not look at nutritional info, must eat 2 biscuits after a hypo but not a jam sandwich!! I am being praised for doing things right as a type 1 but it was all the wrong thing for me. The objective is to rely on long acting insulin only apparently as my pancreas is dumping insulin at inappropriate times they think.
Any comments, thoughts on questions to ask at next appt welcome.

s

 

[Northerner]

Sorry @pippaandben, just catching up with this 🙂 I do wish the medical profession would realise that it's really not black and white with these things! Whilst it's it's good to establish some of the basics, the only real correct treatment for you is what you find works well and allows you live as normal a life as possible. As you may know, I'm very much in the Type Weird category. After 7 years since stopping needing basal insulin (which I needed for 4 years after diagnosis) they finally decided to give me a c-peptide test. I'm afraid I can't remember what the exact results were, but the upshot was that my body was producing a 'reasonable' amount of insulin - they said I was producing more insulin than 95% of people with Type 1. I'm now officially 'Type ?, treated as Type 1'. I had to correct my GP last year at my review because they had me as Type 2 - I have to explain every time! 😱 I'm not Type 2, and I'm a puzzling Type 1, but I know how to treat myself so I achieve stable blood glucose levels with minimum impact on my lifestyle 🙂

My point is that, whilst it's good to have input to your control, it is through your own experience that you will learn how much insulin you need and when you might need to alter things - I found the key was to keep good records at all times. I know of a few others who are neither one type nor the other, and therefore need to be treated as individuals rather than being pigeon-holed. The biggest help for me was getting the Libre on prescription - I have virtually eliminated hypos because I can spot them before they happen, and I also understand the effects of my meal choices and timing of my insulin doses much better, because I can see exactly what happens when I eat 🙂

I just did a quick google and found this:
What C-peptide level is when diabetic?

C-peptide levels are associated with diabetes type and duration of disease. Specifically a c-peptide level of less than 0.2 nmol/l is associated with a diagnosis of type 1 diabetes mellitus (T1DM).

So, on that basis you are producing ever so slightly more than this threshold 🙂 The normal (non-diabetic) range is 0.26 – 1.27 nmol/L 🙂

 

[trophywench]

So would you say, like me, that the patient is producing insulin Yes - but absolutely not enough to rely on 24/7/365 - or what?

It is an absolute fact that the Joslin Institute have proved that some Type 1s though not by any means all, are still producing some of their own insulin even when they've had T1 for 70+ years. Nowhere near any useful amount - but 'some'.

 

[Northerner]

So would you say, like me, that the patient is producing insulin Yes - but absolutely not enough to rely on 24/7/365 - or what?

It is an absolute fact that the Joslin Institute have proved that some Type 1s though not by any means all, are still producing some of their own insulin even when they've had T1 for 70+ years. Nowhere near any useful amount - but 'some'.

Even when you are producing a 'useful' amount of insulin, it might not be enough - I don't need basal, but I do need bolus when I eat (and sometimes when I don't e.g. when ill). A former member here has been T1 for a similar length of time to me, but had an even more surprising experience, no longer needing insulin at all, just the occasional half tab of gliclizide 😱 A lot of that might be attributable to the amount of exercise the person does - far more than me! 😱 🙂 This isn't to say, of course, that anyone can 'wean their self off' it, just that it happens for a few people. (even Halle Berry, perhaps! 😱 )

 

[pippaandben]

Update after 2 face to face appts cancelled due to covid which meant an urgent call from different nurse.
Told yesterday that I would be getting appointments for dietician and also to have a glucose level monitor fitted at the hospital. The concern they have is the number of hypos I have (2-3 a week) rather than the high levels of glucose. I am being taken off Levemir and going onto tojou (might not be how you spell it!). The intention is to have one injecton a day - currently 28 units am and 9 after dinner to be replaced by 30 units once daily - doesn't matter when but must be same time each day. Don't know how I actually get the new stuff and pen. Having told me all that they then add to take humalog at 1 unit breakfast, 1 lunch and 2 dinner but not to inject humalog if my reading is less then 5.
Any comments from current users of this monitor please and in particular what questions to ask. Apparently a special case had to be made for me to be able to have one as I am an official type 2!
Talk about going on a journey this seems to be a marathon with all ground rules being changed at random.