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Help Type 1 and really struggling

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Casper2614

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4
Hi Everyone
So I've had type 1 diabetes for 10 years and was diagnosed at 35. The first ten years I was on Levemir twice a day and Novorapid for meals and my carb ratio was generally 1:10 throughout the day and my HBA1C was good for all of the 10 years. I ate what I wanted when I wanted and did have regular hypos but just drank a bit of lucozade and all ok. Then after turning 45 I suddenly started having strong hypo's in the evening after eating. I had lost probably 10 pounds in weight through dieting and all of a sudden I just kept crashing. I have always had to take more Levemir in the morning then the evening (was taking 40 units AM and only 14 units PM and would go low at night but just drink some lucozade) I had to take 14 units although a bit too much as was going low overnight I had to take this to stop the dawn phenomenon. So you can see that my liver obviously cuts back drastically in the evening as I would often see my numbers start to come down by themselves after 6pm.

Anyway for the past 6 months it has been such a struggle, due to the crashing hypos I developed hypo anxiety and started keeping my numbers high (I live on my own). I worked myself into such a frenzy I couldn't bear to see the numbers coming down. My diabetes team tried me on Lantus and Tresiba but they were all too strong in the evening and come 6pm the numbers just kept going down by themselves without any novo being injected. I tried reducing dose but it didn't seem to make any difference. My numbers were probably 18-19 for much of 4 months whilst I was dealing with the anxiety. I then lost 15kg (nearly 3 stone) in weight and although I am still healthy for my height (5ft 11) I am now on the brink and still really struggling to keep my weight steady. I would like to put on weight if anything. I feel so down all the time. Coupled with having a dexcom CGM where I can see what is happening all the time it probably adds to the anxiety. My Carb ratios are pretty much all over the place and even though I eat the same meals every day the Novo rapid I need differs from day to day which it never used to. If I eat pasta I have to act like my own insulin pump and start with 2 units and then inject as and when BG starts going up as if I inject straight away I drop quickly. I'm scared all the time and don't enjoy meals anymore but I do eat to stop me from losing more weight. I still struggle being under 10 and most of the time I am 10-13. I am currently on 16 Levemir AM and only 3 PM so you can see what a massive reduction I have since taking 40 AM and 14 PM. Nothing is predictable and as I am still high most of the time the weight keeps dropping off and I thought it would stabilise a little once the numbers went down from 18-19 to 10-13.

Has anyone else encountered bouts of complete rollercoaster and lack of being able to get under control. I thought I would be able to sort this out but 6 months on I am still struggling. This morning I woke up 15 (my dawn phenomenon had kicked in) and gave myself 1 unit of Novo to go down before breakfast and my usual 16 Levemir. Within an hour it had dropped from 15 to 11 and was still going down - Why? I just don't get it. Why all of a sudden does it drop so quickly when other days I am struggling to get it down. For the rest of today I have had to reduce my Novo and whereas I would usually take 4-5 units with a bowl of pasta I only needed 2 units today and stayed level. Again why? I just seem to get different results day after day.

My diabetic team are not putting me forward for a pump and I hope to have one in February but apart from that they are not helping in any way. Although they did give me numerous tests to check thyroid, celiac disease, digestive enzymes, test to see my hormones were ok and not pre-menopausal as well as checking my cortisol levels and everything has come back OK. So why are my blood sugars so all over the place and why are my carb ratios changing all the time.

I also find that I seem to be more insulin sensitive on the weekends then during the week - has anyone else experienced this?

Just feel like I have been newly diagnosed and haven't got a clue how to get back on track and feel so alone

Hope anyone out there can atleast say they have struggled with the same issues and got back on track

I have even paid to see diabetic consultants privately and all they said was to increase my background Levemir but this causes me to go low in the evening so can't do that either. Hoping pump will be the answer

Thanks
Anna
 
Last edited:
I found when dieting (eventually 5 stone) I had to completely start again with both fast and base insulin as if just diagnosed about every one stone loss. Hospitals use a crib sheet to calculate initial doses based on mainly weight. I would guess a diabetic nurse will have access to these sheets.
 
Casper2614 said:
Hi Everyone
So I've had type 1 diabetes for 10 years and was diagnosed at 35. The first ten years I was on Levemir twice a day and Novorapid for meals and my carb ratio was generally 1:10 throughout the day and my HBA1C was good for all of the 10 years. I ate what I wanted when I wanted and did have regular hypos but just drank a bit of lucozade and all ok. Then after turning 45 I suddenly started having strong hypo's in the evening after eating. I had lost probably 10 pounds in weight through dieting and all of a sudden I just kept crashing. I have always had to take more Levemir in the morning then the evening (was taking 40 units AM and only 14 units PM and would go low at night but just drink some lucozade) I had to take 14 units although a bit too much as was going low overnight I had to take this to stop the dawn phenomenon. So you can see that my liver obviously cuts back drastically in the evening as I would often see my numbers start to come down by themselves after 6pm.

Anyway for the past 6 months it has been such a struggle, due to the crashing hypos I developed hypo anxiety and started keeping my numbers high (I live on my own). I worked myself into such a frenzy I couldn't bear to see the numbers coming down. My diabetes team tried me on Lantus and Tresiba but they were all too strong in the evening and come 6pm the numbers just kept going down by themselves without any novo being injected. I tried reducing dose but it didn't seem to make any difference. My numbers were probably 18-19 for much of 4 months whilst I was dealing with the anxiety. I then lost 15kg (nearly 3 stone) in weight and although I am still healthy for my height (5ft 11) I am now on the brink and still really struggling to keep my weight steady. I would like to put on weight if anything. I feel so down all the time. Coupled with having a dexcom CGM where I can see what is happening all the time it probably adds to the anxiety. My Carb ratios are pretty much all over the place and even though I eat the same meals every day the Novo rapid I need differs from day to day which it never used to. If I eat pasta I have to act like my own insulin pump and start with 2 units and then inject as and when BG starts going up as if I inject straight away I drop quickly. I'm scared all the time and don't enjoy meals anymore but I do eat to stop me from losing more weight. I still struggle being under 10 and most of the time I am 10-13. I am currently on 16 Levemir AM and only 3 PM so you can see what a massive reduction I have since taking 40 AM and 14 PM. Nothing is predictable and as I am still high most of the time the weight keeps dropping off and I thought it would stabilise a little once the numbers went down from 18-19 to 10-13.

Has anyone else encountered bouts of complete rollercoaster and lack of being able to get under control. I thought I would be able to sort this out but 6 months on I am still struggling. This morning I woke up 15 (my dawn phenomenon had kicked in) and gave myself 1 unit of Novo to go down before breakfast and my usual 16 Levemir. Within an hour it had dropped from 15 to 11 and was still going down - Why? I just don't get it. Why all of a sudden does it drop so quickly when other days I am struggling to get it down. For the rest of today I have had to reduce my Novo and whereas I would usually take 4-5 units with a bowl of pasta I only needed 2 units today and stayed level. Again why? I just seem to get different results day after day.

My diabetic team are not putting me forward for a pump and I hope to have one in February but apart from that they are not helping in any way. Although they did give me numerous tests to check thyroid, celiac disease, digestive enzymes, test to see my hormones were ok and not pre-menopausal as well as checking my cortisol levels and everything has come back OK. So why are my blood sugars so all over the place and why are my carb ratios changing all the time.

I also find that I seem to be more insulin sensitive on the weekends then during the week - has anyone else experienced this?

Just feel like I have been newly diagnosed and haven't got a clue how to get back on track and feel so alone

Hope anyone out there can atleast say they have struggled with the same issues and got back on track

I have even paid to see diabetic consultants privately and all they said was to increase my background Levemir but this causes me to go low in the evening so can't do that either. Hoping pump will be the answer

Thanks
Anna
Click to expand...

Hi @Casper2614

Have you tried LCHF? Your description of life sounds familiar to those on a high carb lifestyle where trying to match the carbs with insulin in an ever-changing life is far from easy, exposing you to hypos and hypers; especially when there is a routine change such as at a weekend.
As we age, our bodies requirements change and we need to adapt; having read up and asked many questions since diagnosis with D, I find that we (the D community) notice the changes more as we are acutely aware of the impact they have on us.

Since following the LCHF lifestyle, I have been able to wean myself completely off insulin (closely monitored by my team). This does not mean I am cured, but simply that my D is very well controlled, and has a minimal effect on my lifestyle.

I understand your concerns of being alone; another reason why it was imperative that I found a way of getting good control myself.
 
I had the dawn phenomenon problem with rollercoasting. Went onto a pump with resulting much better control.

Couple of points - as already mentioned - losing weight significantly affects your insulin sensitivity/resistance (yes even in type 1!). I lost 20kg and went from 120u/day to 40u/day - although some of this was due to switching to pump therapy that naturally lowers daily insulin requirements in itself.
Also - hypo's release several hormones such as adrenaline, that will tend to increase bg for up to 24 hours - long after the hypo has resolved. This is difficult to compensate for using your typical correction bolus. You are ptobably best leaving it 24 hours before trying to correct back down to a normal level, let it run a little higher than normal during this time rather than over-correcting.

Finally - the hypo phobia may make you eligible for 24 hr CGM funded by the NHS in combination with your pump, if you do start this therapy
 
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