Living without hypo awareness

[Flowerpot]

I'm struggling at the moment. I haven't had hypo awareness for over a decade and rely on CGM for warnings. Recently I've been getting low readings too often, night and day. I'm working with my pump clinic to try to sort out why and tweak my basal rates. Due to all the complications I've got I need to keep my bg tightly controlled and can't relax it for a while.

I try not to let diabetes scare me too much as I've been through a rough time losing most of my sight and am currently battling to save my leg. CGM is fantastic technology but it isn't hypo awareness and losing awareness affects the whole of diabetes management, I can't tell when my bg is dropping or when it's increasing after treating a hypo, there is such a lot of doubt in my mind all the while.

I did start to go down the pancreas or islet cell transplant route a few years ago but backed out due to the significant risks and the consequences of taking immuno suppressant drugs all my life. Is there anyone out there who has undergone either islet cell, pancreas, or pancreas/kidney transplants and can tell me if the hypo awareness you hopefully get back is the same as the olden days, shaking, sweating, dizziness or if it is more subtle. I also wonder if you can loose all warning signals over again.

I'm hoping the new SmartGuard technology in the Medtronic 640g pump will act as an efficient buffer to prevent me from having too many hypos and restore some of my confidence again.

 

[CarbsRok]

Hi Flowerpot, just a suggestion to stop you dropping into hypo so often. Can you change the level for hypo warning? So instead of 4.4 set it to alarm at 5? This way you can keep an eye on the readings and treat before hypo, until you sort your basal out.

 

[Flowerpot]

Thanks CarbsRok , yes I've increased the level for hypo warnings after my pump clinic yesterday in the hope I can stop dropping so rapidly. It is a balancing act though as the pump/CGM keeps predicting hypos when I'm in the low 4's and not really dropping. Still, a few extra alarms are a lot safer than crashing into the 2's and 1's whilst I try to sort out my basal.

 

[mangobe]

So sorry to hear of your struggle @Flowerpot
I rejected a transplant for similar reasons, and have been surviving with no hypo awarenes for 20 years now (and no pump or cgm either although I'd dearly love a cgm), so I'm very glad you have a cgm and hope that 'smartguard' and other new technology will help restore your confidence. At the time I was offered a transplant I was told thatit would restore my hypo-awareness semi-permanently, although the transplant itself wouldn't last, but that was some years ago now, so a transplant specialist with up to date data would be in the best place to advise you now that more time has passed since the earliest transplants and the latest records may show new trends. My consultant is/was the head of the Transplant unit at Kings College London, but perhaps you should ask for a referral to see someone at the nearest specialist centre to you.

As far as the repeated unexpected hypos go, it may be that sometime later you'll look back at this period and find it easy to identify a standout feature that is the obvious cause of your frequent lows. Sometimes it's been hard for me to recognize that I was making big changes in my habits or lifestyle at the time it was happening, so I've sometimes looked back at periods when I've had unusually frequent hypos and been able to clearly identify the cause only in retrospect, although it usually turns out to be something glaringly obvious that set it off, with the consequent lowered tolerance level bringing more hypos to follow. Changes such as going to stay in my brother's 6th floor flat in Paris, where I had to climb multiple stairs and do lots of walking every day, I drank wine at every meal and was served tiny, healthy portions of French food ththe contents of which I had no control over, but being so dazzled by enjoying gay Paris it didn't occur to me how different this lifestyle was, nor how much it would affect my BG's

I empathise with your stressful situation, struggling to avoid hypos while also avoiding complications due to hypers, and am sorry you (and all of us) can't have some time off the diabetes treadmill.

 

[mlm]

Hi Flowerpot, I had islet transplants in sept and nov 2011. I'd been hypo unaware for quite a long time and got the funding for cgm about 6 months before the going on the transplant list. I totally agree a cgm doesn't replace warning signs but it's better than nothing. My hypo signals started coming back quiet quickly after the transplant. Are they exactly the same as I used to have - I'm not sure. It had been a good number of years since I've d had full awareness. But I get the tingling lips, suddenly feeling sweaty, lack of concentration.work are no longer picking up the fact that's' hypo before I do. I did find within the first year after the transplant that if I had a run of hypos 3 or 4 within a couple of days that I could start to lose awareness again- but if I got on top of them the warning quickly came back. For this reason I'm still running a hba1c of around 6.7 -7.4. I'm impressed that you can get a hba1c of 6.2. % without awareness. You must be working really hard at juggling everything. I sat at 8.4 to 8.8%pre transplant and still had life threatening hypo.
The immunosuppressants do have side effects but I decided that they were worth putting up with to get the hypo awareness back and to get some sort of life back. If you have an islet cell transplant you are on lower doses than for a kidney or pancreas transplant. Initially the side effects seemed worst, but lessened over time - I got itchy skin, a slight temor, feeling sick, and high blood pressure. The blood pressure was sorted out with medication. The itchy skin was intense the first week or so but gradually reduced and isn't a problem now. The feeling sick was sorted out by changing the make of the immunosuppressant, I still occasionally get tremors, but I just put up with it. Personally I felt and still feel it was all well worth going through. I know I'm now at higher risk of getting certain cancers but I' ll deal with that if and when it happens and I do all the prevent I can. Healthy diet, exercise, uv protection even in winter. At least I'm now not at risk of dying during a hypo. In the long term I do think that once my transplant fails - as I'm only in my late 30's, it won't last me for the rest of my life, I may gradually lose hypo awareness again, the doctors have never been able to give me a straight answer on that on. But it shouldn't happen straight away. So I' m thinking positively that I will get a long life out of the transplant and by the time I lose awareness again treatment may have further improved. I did pick up a few bugs the first year that needed hospital admission because of immunosuppressants, but I've not had any admissions recently.

I can't explain what it's like to no longer stress continuously about low blood sugars, to worry I'm not going to wake up one morning, that I'm going to have a seizure in public, that I' m going to lose my job. the increase in energy, after you've recovered from the op, because you're no longer battling swimming blood sugars is amazing. The ability to sleep through the night because you aren't having to respond to cgm alarms, or just checking your sugars because you're not sure the cgm is picking everything up accurately. I was under the care of a mental health team cause my diabetes had such an impact on my, within a year of the transplant I'd stopped all that and just see the GP because I still need a few drugs to keep my mental health stable - but much lower doses.

Where do you live in the uk? There are a number of transplant centres. It may be worth at least getting a referral to get up to date information. You could also ask if they could put you in touch with a patient who has had a transplant to give you the patient 's perspective . I see the team inEdinburgh and has spoken to couple of people who were been assessed and wanted to ask another patient questions. My sister has had a islet transplant with the team in Oxford and I know that she has also talked to a couple of people who wer been assessed and wanted to speak to someone who has had it done. I also know there are teams in London and Newcastle. I think there is another centre in the uk, but I can't remember where.

 

[Flowerpot]

Thank you @mangobe and @mlm for your replies.

It is very interesting reading about how you feel after your islet transplant mlm and the beneficial effects it has had on your life plus needing a lower level of immuno suppressants for islet cell transplant. Thank you for that information