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Brittle diabetes??

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loopylolly

New Member
Hi

I was wondering if anyone has or knows of anyone who has/suspected brittle diabetes??

My boyfriend is having an awful time at present and is finding monitoring/stabilizing his glucose levels near impossible resulting in constant extreme hypos to the stage where he is a danger to him self and others around him.

Not having control of his life at present is really bringing him down to the point he has tried an insulin overdose as he feels he is too much of a inconvenience to myself, his family and everyone around him. Obviously this is untrue we all are there 100% behind him and just want to help him through this awful time.

He is type 1 and uses novorapid and levamir to supposedly control his diabetes. We have made many MANY trips to Drs, Diabetic nurses, consultants etc all advice resulting in no real improvements atall. Just this evening he went out for a meal with his family and no more than an hour later his sugar levels dropped to 1.3 for no apparent reason.

He had a severe seizure Wednesday morning resulting in a trip in an ambulance to a&e for several hours for observation and since home has required paramedic attention 3 times (in 2 days!!) it is all getting a bit ridiculous now and no medical professional seems to have a clue what to do to help us. :(

If anyone has any experience or knowledge of brittle diabetes it would be good to know how others have overcome the hurdles of getting it more under control 🙂 or anyone who could offer any advice would be great

Thanks x
 
Hi loopylolly, I'm very sorry to hear of your boyfriend's problems :( We do have members who have suffered similar things, so hopeflly they will be along to share their experiences. Has he been considered for an insulin pump? It certainly sounds as though he fits the criteria, and this may help him gain better control. I'd suggest looking at the website Input who are extremely good in helping people get access to pumps. If you are in Scotland, the equivalent site is IPAG
 
hi loopylolly

Sorry that your BF is having a bit of bad time with it all, can you say why you think that it may be brittle diabetes?

A couple of questions..

Does he carb count and adjust his insulin (novorapid) to what he's eating?

How good is this at this!

Does he routinely check his BG's and writes them down, with events such as exercise, changes in routine and/or well on that day he's feel ill, stressed or a lounge around day etc?

This could be partly the reason..

Another one which is rare is Addisons disease, has his team done a test to rule this out of the equation?

Tell him not to fret I know it's hard,

Tell him not to fret as he's not alone and their are plenty of people who are willing to share their experience with him, and tell our experience of how we regained the control so it may help him
 
They are rarely given to folks on MDI, but a CGM would be a great help I'd think. A continuous monitor that measures glucose levels in interstitial fluid every 15 mins or so. The Paradigm Veo pump can have one built for the ultimate D gadget!
 
Hi I'm really sorry to hear about his problems. If he is carb counting and matching the insulin appropriately has he checked if his levemir is at the right level? other members on the site can provide details about this. If He has done these things and still has problems it may be because of something called gastroparesis which causes erratic blood sugars including low sugars after meals because the food isn t being digested quickly enough. please do not hesitate to ask with any questions that you may have
 
Hi all thanks for your replies,

We saw a different GP on Wednesday who mentioned an insulin pump but until now one has not been mentioned so are hoping to look into this further.

He doses his insulin according to his meals etc and the GP has played round over previous months with the amount of insulin, size of needles etc all with no improvement.

I'm interested in hearing more about the gastroparesis, will do some online research and see what I can find this has never been mentioned before only the term of brittle diabetes has been used, and even then its always been used loosely as not enough of the GP's or consultants seem to know enough about it.

Thanks again x
 
loopy

When you say his GP has played around with his doses, does your BF adust himself or relies on what his GP!

Pumps are only has good as the user, sadly they aren't pug and play, there is some hard work involved getting up and runing on them.. But saying that once you up and runing it does get easier to maintian control etc... I wouldn't be without my pump at all now..
 
Is there any reason he sees a GP over a consultant? If he's really struggling, I would recommned using Patient Choice and being referred to one of the teams ie at Kings or Oxford. Somewhere like that should be able to really help and should be able to get him on a pump asap. As Ellie said, pumps are lots of work and need loads of input - but can help in cases like this.

Keep us up to date! 🙂
 
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He see's his consultant every 3 months and the GP liaises with him in between appointments. They are all working as a team along with his diabetic nurse.

Yes he adjusts the insulin in accordance with what they all recommend and occasionally when he feels it isn't working will play around with doses himself sometimes with a success others not.

There seems to be no fixed pattern, he could eat the same meals with the same dose of novorapid and every time resulting in different sugar levels.
We decided between ourselves to try a fixed/planned diet to test this, so he has a weekly meal plan to try and figure the meals which have the greatest effect,which cause the biggest highs and lows, what to avoid etc but seems to be no correlation between anything, all seems extremely random at the min.

The worrying thing is when he gets so low what a danger he is to himself aswell as the people around him. He's jumped out of moving cars on a dual carriageway, turned very violent many times and has completely no awareness of danger whilst in the hypo. They all come on so quickly with little to no warning and trying to get some sugar into him once he's showing symptoms of being low is near impossible as he becomes violent when you try to intervene. He can have a levels of 5-7 and within half an hour of testing can be in a massive hypo and all of a sudden they can be as low as 1.2
 
That sounds very scary for all of you LL 😱

No idea what to suggest, but a CGM would certainly help. Pumps are great, but won't on their own reduce the risk of hypos as far as I can see. At least a CGM can be programmed to give warnings.

Has he been advised to try and keep his BG slightly high until they can find some solutions ?

The other thing to look at is injection sites, but I guess that's been covered by his team. Using the same area can make absorption very erratic, which would in turn make his BG unpredictable.

Rob
 
I would definitely push for a CGM. Request to see his consultant - or a DSN at the hospital so that they can liase with the consultant - to discuss it. He meets the criteria for a pump without a doubt.
 
thanks everyone, until I joined this site it somehow seemed like we were on our own, but in a strange way its a comfort to know there are others around who have experienced/are going through similar/know what they are talking about!! He was diagnose when he was 8 but was always much better controlled so he is a lot more used to it than me, we have only been together just over a year so still all very new to me.....

Will speak to the DSN on Tuesday about the CGM and the posibilities of a pump and see what she advices and hopefully we can get ontrack to a more normal life together 🙂

Thanks again
 
Glad we can help 🙂 it's great when partners etc come on here, it shows how much you care 🙂

He should definitely get funding for a pump (if not - message me) as he meets the criteria for a pump. CGM, even for people who *need* it, is still really hard to get hold of full time - it is definitely worth asking for a trial one from the hospital to wear for a week or two so you can see what is happening where. Good luck!

Where are you based?
 
thanks Shiv, He's in London under consultants at Ealing hospital.

Hopefully we can get somewhere with all this and get things back on track soonish 🙂
 
loopylolly said:
Hi

I was wondering if anyone has or knows of anyone who has/suspected brittle diabetes??

My boyfriend is having an awful time at present and is finding monitoring/stabilizing his glucose levels near impossible resulting in constant extreme hypos to the stage where he is a danger to him self and others around him.

Not having control of his life at present is really bringing him down to the point he has tried an insulin overdose as he feels he is too much of a inconvenience to myself, his family and everyone around him. Obviously this is untrue we all are there 100% behind him and just want to help him through this awful time.

He is type 1 and uses novorapid and levamir to supposedly control his diabetes. We have made many MANY trips to Drs, Diabetic nurses, consultants etc all advice resulting in no real improvements atall. Just this evening he went out for a meal with his family and no more than an hour later his sugar levels dropped to 1.3 for no apparent reason.

He had a severe seizure Wednesday morning resulting in a trip in an ambulance to a&e for several hours for observation and since home has required paramedic attention 3 times (in 2 days!!) it is all getting a bit ridiculous now and no medical professional seems to have a clue what to do to help us. :(

If anyone has any experience or knowledge of brittle diabetes it would be good to know how others have overcome the hurdles of getting it more under control 🙂 or anyone who could offer any advice would be great

Thanks x
Click to expand...
 
Hi, I have it myself....I know that many people get impatient, and say ridiculous things- sadly, even some health care workers are ...erm….badly educated about it!! I got told by one, "you have type 2 diabetes, so you should be sticking to your diet then all of this would go away"....How wrong can a GP be?!! The things I have found helpful-though they don't eradicate it-are becoming gluten and lactose free, and reducing my intake of carbs. Walking is a good exercise, and ( weirdly!) for me, making sure that I have enough mental stimulation. Things like scrabble on line have helped me. Also, Ruby Wax puts posts on Facebook about Mindfulness. It sounds a bit "new age" but does work! Breathing control before bed time, and slowing down when you are eating, concentrating on taste and texture, and [ boring, I know!] ensuring you have enough water to drink has helped me. Cutting down on tea and coffee has also made a difference.
As for the health care people, request a NON fasting HbA1c, and see what that is doing......the levels will be all wrong, I think, so they will need to do something!
I have always found that if you keep on speaking to your Diabetes team, they are usually very helpful. Unfortunately, it's just sticking with a regime and that can be ….repetitive! One last thought....is your BF keen on any sort of gardening? I only ask as I find that therapeutic too. I think if he finds out how to slow his life down, and concentrate on slowed down activities, he might start to feel better. Speak to your local MP about the services in your area, and make certain that you fight for your BF to get PIP.....It's difficult, but I have just done it!
Good luck!
Caroline tomtom
 
Hi @carolinetomtom welcome to the forum Please feel free introduce yourself in our newbies forum and ask any questions you may have re diabetes, sadly this is an old thread so the Earlier posters may no longer be onThe forum
 
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