Not a Typical T1...?

[Greyhound Gal]

Hi Everyone. I've not posted for a fair while although I do read posts a few times a week to keep up with all the news 🙂.
Not having posted for so long I feel a bit guilty asking a question but it is going round and round my head and I wondered if anyone could help.
I'll keep it as short as I can!
I started a libre trial in Sept, despite having already self-funded for 3 years. I had my 3 monthly review last week. The DSN was amazed as I am regularly 97%+ in target (4 -10) and have hit a 7 day 100% twice. I can eat what I want until mid-afternoon before my BG are affected, including chocolate, crisps, cereal bars. I normally have about 20-30g cbh at lunchtime which I take no Novorapid for and my BG doesn't change at all, and my evening ratio is now 1:36g so there are days I take no bolus at all. I take 6u Lantus before I go to bed, and this may well reduce again after Christmas.
Both my basal and bolus requirements have been slowly dropping over the past 18 months but the last 4-5 months have reduced quite a lot.
I haven't lost weight (indeed I have put a few pounds on 😱).
My DSN suggested that I may want to have some genetic tests as she does not feel I am a 'typical T1' , she says I am definitely not a T2, but I may be MODY. Also, given my low insulin requirements I may actually be able to come off insulin and have an oral medication instead.
She gave me a web site of the testing facility in Exeter to look at (Diabetes Genes) but I don't seem to fit any of their profiles for the MODY categories.
My pancreas is obviously producing insulin again.
One thing I come back to is that since last Dec, I have been on an immunosuppresent to control my psoriasis and I have a niggle in my head that the build up of that in my system has made my immune system stop attacking my beta cells, hence more insulin being produced.
Does anyone have any ideas what may be happenning? Am I just odd?🙂🙄
@Northerner - I did mention to my DSN that someone on the forum only needed to take Basal - did that come about in a similar way as I seem to be going and are you still classed as a T1?

 

[Kaylz]

Hi I was wondering where you'd gotten to!

Northerner hasn't really been posting much this last week or so, in his case though its that he doesn't take basal and only uses bolus, I'm sure he posted something the other month about when he's due to consultant so might be worth having a look for that post

It's great to hear from you again!
xx

 

[Northerner]

Hi GG 🙂 Well, I could have written that myself! 😱 I stopped using basal 4 years after diagnosis, so still need bolus for carbs - my requirements had been coming down after the first 18 months or so, and eventually I was down to 2 units. I decided to see what would happen if I stopped, so I did - and I was fine! 😱 This was nearly 8 years ago now. I'm not quite the same as you as I need to have novorapid with any carbs, but this can fluctuate a lot. I'm currently using about 20 units a day, but a couple of weeks ago I was down to only 5 for the entire day. In June the consultant decided to do a C-peptide test and discovered I was producing a 'reasonable amount' of insulin. I was also advised to look at MODY, plus I also came across neonatal diabetes, which can go into remission as a baby but then reappear, usually in early adulthood. I saw the consultant again last week and we discussed these possibilities, but agreed I probably don't fit any of them. What he did say was that there is a very small percentage of people under the Type 2 umbrella who don't suffer insulin resistance and that may be a possibility, but he kept my designation as Type 1 because they couldn't really categorise me and I might lose the Libre if they changed my type 😱 So, I'm Type Weird 😱 🙂

Interestingly, I discovered a FB friend of mine (who was a member here when she was diagnosed 10 years ago) is similar - diagnosed Type 1, but has now reached a point where she doesn't need insulin and only occasionally has a gliclizide tablet i.e. not every day. They continue to classify her as Type 1, I believe.

Seems we are a growing club! 🙂

 

[Greyhound Gal]

Thanks Kaylz, it feels good to be back.

 

[Greyhound Gal]

Thanks Northie. I had a c-peptide at diagnosis and it was inconclusive.
We can be the 'Weird Twins' together'!

 

[ianf0ster]

Sorry but I can't find the study references for the following, but I do remember reading some studies (or perhaps just anecdotal evidence) on this situation for Type 2's who needed Insulin, but after Low Carb lifestyle and external Insulin, their Beta Cells recovered enough to either come off external Insulin or to significantly reduce their dose.
There was another study which found that something like 95% of Type2's on long term external Insulin actually have near normal Pancreatic function - and so theoretically (with the right 'Way Of Eating' might be able to come off their external Insulin. I will search around in 'the other diabetes forum' to see if I can find the links that I followed to find those studies - so I may edit this post.

This isn't the one I was looking for - since it is in the Lab only: https://www.eurekalert.org/pub_releases/2019-05/uoe-rri051519.php

 

[Lucy Honeychurch]

Good to hear from you again GG 🙂
It just goes to show how complex the D can be and there must be other sub types that have no definition 🙄

 

[trophywench]

Well the Joslin centre in Boston (USA) have done long-term studies on T1 diabetics and discovered that a great many of us still produce some insulin even 70 years post diagnosis but by no means all of us and if we do - not often a 'useful' amount.

 

[Ljc]

I strongly suspect your immuno depressant meds’ may well have a lot to do with it and now those beta cells are not under such an onslaught .....

 

[rebrascora]

I strongly suspect your immuno depressant meds’ may well have a lot to do with it and now those beta cells are not under such an onslaught .....

Makes you wonder if maybe immunosuppressant drugs might be worth researching as a treatment for Type 1 diabetes, particularly in newly diagnosed patients still in their honeymoon period.
My partner takes them for his very severe eczema and whilst I was really apprehensive about them, particularly as he helps out on a farm and gets cuts and grazes which are then exposed to filth, they seem to be helping with no untoward health impacts so far and he is more than a year down the line with them now.

 

[Robin]

I think strong immunosuppressive drugs are held to have a greater risk to the body than taking insulin, and this is why pancreas transplants aren’t routinely done, only when the patient needs a kidney as well, and is going to need immunosuppressants anyway. There was a case locally a few years ago where a young teenager on strong immunosuppressants died of chicken pox, because her body couldn’t fight it off.

 

[Deleted member 25429]

I spoke to my diabetic nurse this week as I only use 5 units of lantus and 5 of nova on a normal day . I do eat a very low carb diet , my first consultant made the comment you don’t take enough insulin to be type 1 . The blood test results confirmed I was . I may still be in the honeymoon period as only diagnosed 7 months ago following admission to hospital with DKA . I do need an awful lot more nova if I eat potatoes in any form

 

[rebrascora]

my first consultant made the comment you don’t take enough insulin to be type 1

I would be concerned about the knowledge /experience of a consultant who made such a comment.
Another member of my DAFNE course had been Type 1 for exactly 50 years and only took 2 units of long acting insulin a day and 3 of NR because she ate low carb and only ate once a day and she was hypoing almost every night and then often in double figures through the day. A consultant should know there is a huge variation in insulin needs and not make sweeping generalisations.

 

[Deleted member 25429]

I would be concerned about the knowledge /experience of a consultant who made such a comment.
Another member of my DAFNE course had been Type 1 for exactly 50 years and only took 2 units of long acting insulin a day and 3 of NR because she ate low carb and only ate once a day and she was hypoing almost every night and then often in double figures through the day. A consultant should know there is a huge variation in insulin needs and not make sweeping generalisations.

I have changed consultants !! She denied I’d had a DKA even though I had a letter from the hospital quoting all the levels which were all DKA levels . I Thought I was a fraud as don’t need much insulin but reading your comment confirms just how different we all are

 

[rebrascora]

"I thought I was a fraud as don't need much insulin but reading your comment confirms just how different we all are"

Meeting other Type 1s is very helpful in realising that and is one of the main benefits of going on such courses. We all have the same condition but we all suffer different problems/frustrations in trying to manage it. The only downside was that there was one young woman on my course who had been newly diagnosed and had perfect in range readings every day and she ate whatever she wanted and injected with a ratio of 8g carbs to 1 unit of insulin which she calculated in her head for every meal. Clearly the Diabetes Fairy was not in possession of her address for house visits and it did make the rest of us feel a bit pathetic that we were doing so poorly with our results!

 

[Deleted member 25429]

"I thought I was a fraud as don't need much insulin but reading your comment confirms just how different we all are"

Meeting other Type 1s is very helpful in realising that and is one of the main benefits of going on such courses. We all have the same condition but we all suffer different problems/frustrations in trying to manage it. The only downside was that there was one young woman on my course who had been newly diagnosed and had perfect in range readings every day and she ate whatever she wanted and injected with a ratio of 8g carbs to 1 unit of insulin which she calculated in her head for every meal. Clearly the Diabetes Fairy was not in possession of her address for house visits and it did make the rest of us feel a bit pathetic that we were doing so poorly with our results!

I’ve stopped beating myself up now if I have one high reading . I have tried to take a more relaxed view now . I do eat low carb as it suits me and I’ve still got a final stone of weight to loose

 

[rebrascora]

If I had just one high reading I wouldn't be too concerned either, especially as I also eat low carb but I am currently on day 3 of constant double figures despite being very controlled with food over the festive season and increasing both bolus and basal insulins. Arrgh!

 

[Deleted member 25429]

o dear hope you manage to bring them back down