Rock and hard place - Help!

[Maradie]

Hi

I am a 28 year old female who was diagnosed Type 1 over 15 years ago.
I have had problems in the past with hypo fits at night, which my Diabetes team told me was due to my hormones changing during the teenage years. The fits did ease off and I went a couple of years without them.
I am currently overweight and following Slimming World/DAFNE principles to manage my food and insulin intake and have lost 20lbs in the last 8 months. I have approximately 30lbs to lose before I am considered to have a healthy BMI.
I am under a consultant at my local hospital as I have bleeding in my left eye and I am in regular contact with my DSN.
I have a history of hidradentitis and abscesses (with surgical removal for three in the last 4 years).

My current medication:
NovoRapid
- morning 1.5:1 ratio
- afternoon 1:1 ratio
- dinner 1.5:1 ratio
Levemir
- 10u at 9.30am
- 12u at 9.30pm
Simvastatin
Fluoxetine
Anti-Biotics for Hidradenitis

My main problems are that I am having hypos nearly every afternoon after my lunch meal and injection. I am also having evening/night fits.

I have reduced my morning ratio from 2:1 to 1.5:1, which has brought my pre lunch BM closer to the correct levels. I have also reduced my afternoon ratio from 2:1 to 1:1 (with a 1.5:1 trial in middle) which has reduced the severity of my afternoon hypos but not the frequency.
My background has been reduced in the mornings from 12u to 10u at the same time as my afternoon ratio reducing.

As well as reducing my insulins, I have changed what I am eating at lunch to make sure I have long lasting carbohydrates instead of potentially short acting carbs.

None of the changes have stopped me hypoing and it is starting to really affect my work. I cannot concentrate when I am hypo and I often drop so suddenly that my colleagues are the first to notice. I have had fits while at my desk and I am extremely lucky to work in an office with trained nurses who know what to do. Without my colleagues keeping an eye on me I would have a lot more severe hypos and fits while at work. I am extremely grateful to my colleagues for caring about me but I feel like a liability most days. If they weren't keeping an eye on me, they would get more work done.

I am also having nighttime hypos and fits. Occassionally I will wake up around 2am-3am feeling hypo and check my bloods. I have some orange juice (and a digestive if my blood is very low) and go back to sleep. However, I often do not wake up and end up fitting. I wake my parents up banging my head on my bedroom furniture and they have to give me a glucagon injection and then hypo foods (hypostop, weetabix, orange juice etc) once I am conscious. I often hurt myself badly with the fits and cannot walk or talk properly (due to biting my tongue) for a couple of days after the fit. This leads to me not being at work and my sickness absence level is steadily creeping up.

I have spoken to my DSN and the Diabetes trained practice nurse at my GP surgery who have all suggested I lose more weight, reduce my insulin and check my bloods regularly.
I am doing all of these things but am really struggling with the day to day living with my condition.

The latest advice from my DSN was to run my bloods higher than normal so that I stopped having such regular, severe hypos. I was wary of doing this because of the bleeding in my eye but did as I was asked, as I was causing myself more harm bouncing between lows and highs so often.
After running my bloods high, 8-12mmol/l most meals, my hypos did calm down.
Unfortunately the extra sugar in my blood caused my Hidradenitis to flare up and I had a very large abscess come up on my chest. I had to have it removed under general anaesthetic and was off work for a week. I also have smaller lumps and abscesses that are continually active and painful. My GP has put me on new anti-biotics to help with these but at the moment they are not having a significant effect.


I feel like I am stuck between a rock and a hard place.
If I try to get a better control on my blood sugars, I have more hypos that turn severe without warning and I fit causing me to be off work sick. I often cannot focus during the day as I am going into or coming out of a hypo.
If I leave my blood sugar to run slightly higher than average, I get infections in my skin that are extremely painful and often need surgery to remove, causing me to be off work sick. I feel sick and very tired when my blood sugar is high.
When at work, I am not left on my own as my work colleagues and family are worried that I will have a sudden hypo and not be able to correct it myself, putting me and others at danger.
When at home, my parents do not leave me on my own for the same reasons.
Although my GP has not officially taken my driving license, I have not driven for over a year as I am nervous of hypoing while driving and potentially causing an accident and hurting someone.

I am 28 years old and cannot be left on my own.
I would like my life back.
Any help or advice would be greatly appreciated!
Thank you for reading.

[Lisa Holmes]

Goodness what a difficult situation for you to deal with. Going to have to spend a bit of time looking back over your post to try and see if I can give you some suggestions.
Will post later

[Dr Masud Haq]

Dear Maradie

Thank you for your post.

I think you're clearly in need of further specialist input and would recommend your DSN discuss your case with your diabetes consultant. I think you've taken all the correct steps so far in reducing your meal time ratios and background insulin.

If you're still fitting at night and these are associated with hypos it's essentially you treat your hypos following all the DAFNE principals you've learnt. Please ensure you take adequate quick carbohydrate and repeat this after 10 minutes if your BM's are still low. Once they have returned to normal then make sure you take adequate slow acting carbohydrates as this will prevent your readings falling in the night leading to a hypo associated seizure. I would recommend not going back to sleep until your readings have risen to above 6-7 mmol/l. If would be a good idea to regularly check your BM's before you go to bed and aim for a BM of at least 8 before going to sleep. I would also recommend dropping your background levemir by a further 2 Units at night if you're still having problems.

It sounds as if the hypos are becoming unpredictable and without warning. I agree that you should avoid driving.

If you're still suffering with loss of hypo awareness and unpredictable glucose control then you may need to be considered for an insulin pump but this needs to be discussed with your consultant first who needs to assess the whole situation.

Best of luck.
Masud

[Maradie]

Hi Masud (Dr Haq),

Thank you for your reply.

I will follow your guidelines for night hypos. I think I am so sleepy and confused during and after a night hypo that I often fall asleep without being a 100% sure that my bloods are above 8mmol/l.

I was contacted by my hospital to move a Diabetes consultant appointment from the beginning of July to last Saturday (23rd June) which I went to.

My consultant has also suggested I drop my background insulin by 2u which I have started from Saturday. He has also suggested I drop my lunchtime ratio from 1.5:1 to 1:1 which I have started again from Saturday.
Hopefully this week I will find out whether these two changes have affected my diabetes control and stopped the hypos in lunchtime and evenings.
My consultant has also asked me to focus on removing the hypos by loosening my blood control and not correcting so heavily when I am high. He hopes that by doing this my blood control throughout the day will stabilise and then I can focus on tightening up in areas that need it.

My consultant has also said that he will put me forward for an insulin pump as all of my health issues meet the criteria. This was really good news to me as I have spoken to a lot of people with Type 1 over the years and those who have had similar issues to me and then gone to the pump have managed to get some real long term control back on their lives. I am really hopeful that I will get through the whole process successfully but am aware that funding is a major issue at the moment.

Thank you for taking the time to answer my questions and for providing me with such useful information.
I have just noticed that you work for my local health Trust so my consultant is probably one of your colleagues. Please thank Dr Kumar for listening to me on Saturday

Maradie (Lorna)

[Lisa Holmes]

I am so glad you have been put forward for an insulin pump as hopefully this will help deal with many of your problems. Hope that the alteration to your regime is helping too.

[Dr Masud Haq]

Best of luck Maradie.
Hope all goes well!!
Best wishes
Masud