Type one diabetic

[Marnie83]

I started an insulin pump 2 years ago and doesn't seem to have helped any I'm classed as a fragile diabetic I've had it since the age of 6 so I've had it nearly 27 years now I'm new to this site so not 1sure how to use it yet thanks

[jan-ran]

hi marnie, I have not heard of the term fragile diabetic, not sure what that means. I guess it's something to do with your age. Talking to people here gives you access to others with similar problems who can chat and advise and generally support you. have you told your gp about your concern with the insulin pump? Keep in touch. JanR

[Marnie83 in reply to jan-ran]

Hi Jan no when I became diabetic age 6 they said to my mum it's not just diabetes it's fragile or another name acute diabetic it means I don't react the same as other diabetics my sugar levels will never be stable the list goes on. I've tried everything they put my insulin up and I have hypos about 6 a day and my sugars go down to one I don't get any warning signs that my sugars going low and they put my insulin down my sugars run in there high 20s I've tried everything to get them down but nothing works I'm not really getting any help or support from gps and nurses feel like I've just been left with the pump to figure it out myself I phone them and they don't get back to me it's difficult x

[Lisahelen]

Hi and welcome. I have a friend who has the pump, about two years as well. His diabetes up to that point was described as unstable. The pump hasnt been a magic cure for him but it has helped somewhat. He is a lot older than yourself (58) and has had many diabetes related health problems over the years(disgnosed age 14).

[Marnie83 in reply to Lisahelen]

Hi Lisa yeah it's difficult being diabetic people think it's just a case of taking a jag or using ur pump not thinking of the lumps and testing your sugar alot I test mine 15 times sometimes more a day depending on my sugar and the feeling there's alot more to diabetes than people think x

[Kitten-kat23]

Welcome, Hello I hope you find yourself feeling more confident of the site, I find playing around with different buttons useful. Having said that it took me a year to work out how to write a post lol.

[Marnie83 in reply to Kitten-kat23]

Lol yeah it seems easy so far and hopefully the rest will come the more I use it. But I think this is a great idea because sometimes you feel like your the only one and alone in it all x

[Kitten-kat23 in reply to Marnie83]

I know, but you never are.

[Marnie83 in reply to Kitten-kat23]

That's true

[DharmaGirl]

Hi Marnie

I do know what fragile Type 1 is cos I have it myself, plus a nice collection of diabetes complications as a result. Was left without proper treatment till 3 yrs ago when i finally got an insulin pump & carb counting training, having started having comas too. The pump did bring my HbA1c down but think it'll be back up again next time as have had difficult time recently with my blood sugars. And although i don't have comas anymore & have enough hypo signs to drive now, i do still have hypos everyday and have a 24/7 struggle to control my blood sugars. So i really do sympathise with u. Pumps aren't the be all and end all are they, tho they can in some people improve things enough to be able to function a bit better.

Hope u don't mind me asking but do u have good support, from a medical professional trained in pumps & fragile Type 1? And did u get good training & refreshers in using your pump? If not, it may help to try & access some. But it is a 24/7 high maintenance thing using a pump 'successfully' with fragile Type 1, and guess u have very little time, energy or mental space to do this with two children with their own medical problems. Guessing this may be a big factor with u and hoping that u get some help & support at home.

Wish i could help more. Would definitely help u tho to be in touch with other fragile Type1's. Diabetes UK's online support forum helped me a lot when reached the end of my tether before i got my insulin pump - obviously there's posts there from people with all kinds of diabetes to plough thru so the best way is to do your own post and u should get loads of helpful replies then. And this site will email u with relevant posts which is very useful.

Hope this helps a bit. Stay strong, karen

[Marnie83 in reply to DharmaGirl]

Thanks Karen yeah it's difficult being a fragile diabetic I done a dafnie courses thwn an insulin pump course my sugars always have been all over the place for the 27 years I've had it but as you my hba1c has came down and now they are saying it's to low as it's only 4 so they have adjusted my insulin and now my sugar levels are a way up at 20 Im supposed to see the diabetic doctor every 6 months but haven't seen her for over a year as she keeps canceling her clinic I see the diabetic nurses every 6 months same as I did before the pump so don't feel I'm getting any help and support I never see the dietitian and my feet are starting to go black so I'm terrified I need to have them amputated as they said at my last appointment that would be the next step I'm only 32 and have kids to run about after and take them to hospitals I don't no how I'm going to be able to do it all myself but I'm just off the phone from the nurses I phoned on thur as my sugars were sky high I changed my pump put on 60% more insulin and my sugars were just going up and up so I phoned them again and again no one answered or got back to me so I ended up having to take 3 injections thankfully that worked but I had high ketones and couldn't go to hospital with a 2 and a 6 year old I don't have any help so I kept drinking and finally got them down to 0.2 from 5+ I got admitted in November for ketoneasados I have never known another fragile diabetic so it's good to talk to someone who understands. How long have yoy been diabetic? X

[DharmaGirl in reply to Marnie83]

So sorry Marnie, that sounds like a dreadful situation ur in right now. Have a lot of complications myself & feel like a sitting duck at times. Have they trained u & are u confident enough to change your basal rates etc yourself? Sounds like a lot of waiting around for your team to ring back every time and if u know what ur doing it can be a lot easier to change things yourself - tho u do need to keep a record book, watch for trends (if any!??) and only change one thing at a time. Apologies if ur already doing that, and know that sometimes it's just impossible to find any trends & u really do have to call your team. I have times where mysugars just go crazy and just have to wait till they settle down or else ring for help. Sounds like u were having constant hypos to have an HbA1c of 4 (!) but obviously they reduced your basal rate (and ? bolus ratios) too much. Know what it's like, so difficult to get the right formula and even if u do it doesn't last long. Find i have to really fine-tune everything to get any level of stability and usually not within target range even then, so often better just doing it on my own. Tho is time-consuming we really have no choice but to prioritise this whenever we can. U can get an app/PC software to help u make sense of your results with most pumps tho.

And yes, appts the same with me. And just see nurse/dietician pump team even on appts that supposed to be with consultant. Good as they are, it's not enough - the state of the NHS i guess eh.

Worries me tho that your ketones were 5 and u werent able to get medical help - that should have been a 999 call and amazed that u managed to get them down yourself without keeling right over!! Do u have anyone at all who could step in & look after your children in these situations, cos we both know what could have happened again. And have u had detailed training on how to deal with high sugars/ketones with a pump? I was given a 'system' to use, tho if sugars/ketones too high for comfort then jump straight to step 2 or 3. And u double the correction dose if your ketones are above 0.6 - scary but seems to work ok. Apologies if u do all this already. And do u have a Basal Rate Profile (BRP) system on your pump - very useful if u can get it. Would have put a higher temporary basal rate on too if my sugars/ketones had been as high as yours - in some circs will put the highest possible BRP on as well as a 250% temporary basal rate. This would increase your background insulin by 300% so needs extreme care, especially with a big correction dose too, but sometimes u just have to bring in the big guns.

About your feet, just so sorry they're so bad - have imagined this & how i would deal with it many times as have PAD too in arms as well as legs, and have been told i will definitely have "problems". But when it actually starts happening it must be a hell of a knock to take. Again, is there anyone at all who can step in to support u & your children if u do have to go thru surgery & the rehabilitation process? Ud need all sorts of help if that did happen and ur very entitled to it - in fact u could do with it & are entitled to it right now by the sound of it. Would start by contacting a good disability advocacy charity - sounds like u need a really good team advising, supporting & speaking for u & your children, and getting all the practical stuff in place for u all. There's a very good one near us called Disability Can Do - they may be able to signpost u to a similar charity near u. Number is 01495 233550/233559.

Lastly, have a friend who is also a very brittle Type 1, who may be happy to email with u as well. Could ask her if u like.She has a little girl and is about your age, and she's such a positive, inspiring person despite all her probs. she doesn't have a pump yet but should be getting one soon. Anyway, i hope this has helped a little. Take good care now and keep in touch. Hoping & praying that u won't have to have surgery and things will improve for u all. Thinking of u x

[Marnie83 in reply to DharmaGirl]

Hi yeah I know how to change my basal and ratios but they are saying I've just to change my basal just now and see how I go as they don't want me having all these hypos again which to be honest I feel ill just now with my sugar running so high and I'm on antibiotics as I have a kidney infection I've had training in dafnie course and pump course but my sugar was in high 20s and struggled to stay awake during the pump I don't have any support and I have dyslexia so it's hard for things to sink in with me yea that would be great if you could get me in touch with your friend aswell I was at the diabetic clinic yesterday only to see the nurse and she said she will send out an appointment for my feet but my bloods came back crp is really high and I don't know what this means but she said it's to do with inflammation I also have under active thyroids and she said my thyroid hormone is low but my thyroid level is high so I'm not sure what this means wither so I went to my gp and he wasn't much help and had an attitude with me so I have took it apon myself to lower my thyroid tablets from 175 to 150 so hopefully this helps. I'm scared with the pump to be honest that's the 1st time I've put on as much as 100% more insulin I go in for 2 operations next week for my guy so I'm hoping that makes me feel better to. Aw I'm so sorry to hear that. I hope your well and hope to hear from you again soon x

[DharmaGirl in reply to Marnie83]

Hi Marnie, Good to hear from u and really hope your surgery goes well. Bit concerned tho that you've lowered your thyroxine dose, as it sounds like u need more thyroxine not less. The reason that the medics told u that one of your thyroid hormones is high (even tho u have an underactive thyroid) is that there are a few different thyroid hormones that interact together, and there is one in particular that when it goes high this makes your thyroid more under-active. So u actually need more thyroxine not less and your medics should have raised it for u. Know it sounds back to front but have had this myself with my thyroid. Know you've got loads of serious stuff going on but would check on this, cos if it's left u could end up putting on loads of weight & it affects your thinking/memory too - which won't help u at all. It's happened to me - was left with a high level of this thyroid hormone for 18mths and put on 2 stone which have no hope of getting off with my hypos, arthritic knees etc. Plus it ruined my meditation practice which is my lifeline. Don't want this to happen to u too. What are your ops for by the way? Assuming they're not for your feet as u said the vascular nurse was sending u an appt for them. All the best with the ops tho and with your feet - will be thinking of u. Hope your kidney infection settles down quickly too - and hopefully your sugars/ketones will come down a bit then too. It's such a pain isn't it when this happens on top of the usual daily struggle with blood sugars. And yes know what u mean about the pump team wanting to get rid of your hypos all the time, even tho that always means very high blood sugars instead for people like us. Had my basals lowered a lot too before Xmas for similar reasons, but dreading my next HbA1c now and my next pump appt in couple of weeks as my sugars have been a lot higher since. And not had a lot of time to stay on top of it lately - crazy cos it's the most important thing of all eh! Anyway all the very best next week and will ask my friend about contacting u when I see her next, hopefully soon.

Take care now & stay strong x

[Marnie83]

Yeah I'm concerned about it as I phoned diabetic clinic and they said lower the doze was right but I'm so confused about it because the hormones low which I thought I would need more and the thyroid levels high so I thought I would need less so I'm really confused I've never heard of it I thought it was just a case of my under scriven thyroid so take tablets to keep it level but seems there's more to it and they haven't explained it to me. I'm going in to get op as they said there's problems with my gut/intestines she said there's a name for it but I can't remember it diabetics are prone to it. I've put on 2 stone Ive no energy at all since just before Christians it's hot worse I'm exhausted mentality physicaly and emotionally my kids are the only thing that keeps me going but even that it's hard as they have health problems and need me to be strong. I'm the same they took all my bloods last week for my pre op appointment I asked them to do my hba1c and they haven't so I've asked to get these done next week aswell but salvaged what it's going to be as my sugars have been so high. You seem like your going through alot with your diabetes aswell. Yeah I'm the same daily struggles and kids health comes before my own I keep getting told to look after myself but I try and it's hard with kids health obviously I put them before myself but they need me so things need to change I think my main problem is my stomach just now I feel that if that was sorted I wouldn't be in as much pain I wouldn't be as tired and no energy what pump are you on? Hope to hear from you again take care x