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Major Problems

Ha Ha! Just glad I'm alive!
I was offered a pump but turned it down as it doesn't suit my lifestyle (I teach yoga) and having had pancreatic drain bags & a colostomy bag (have neither now) I really cant stand anything attached to me, so I spend my days living in 2 hour windows (which is good as my job is only 90 minutes a time).. however left to take class at 7.2 and half hour later was 3.1
 
 
Hi Neil, your situation sounds very difficult. Every diabetic is different, and i realise my own experience might not help greatly - but maybe it might - so here goes -
Firstly, are you regularly tested for other related auto immune diseases, including being given full auto antibody screens? In my own experience, and from others i have spoken to, some of these can make control even more difficult. For instance, do you have regular tests for autoimmune hypo thyroid disease (I found this affected my brain and speed of thinking and responding), and also celiac disease ( this latter, untreated, can affect how food is absorbed) ? Have you been investigated for a range of gastric problems? Again, these can affect how food is absorbed.
Secondly, i realise you use the CGM (i have never done, though am on the pump) but I understood that it was not meant to be a substitute for testing, and 4 tests a day, especially on a pump, seems quite impossible. And impossible for many Type ones not on a pump. I find Type one management is very difficult - my insulin is not stable any day, and has never been. I find that control has to be worked at so much more than medical professionals think. For me it also entails learning hypo avoidance systems, and re-assessing every few months. i find, for instance, that symptoms while active - even a mild walk - are diminished. it may be helpful , after any hypo, however minor, to write in as much detail how you were feeling in the couple of hours before in minute detail, or try to go through it with your wife if it may be difficult for you to do - tiresome, but doing this can become second nature . In my own case it still helps add to a very very long "symptoms and feelings which are possibly hypo related" list - I find some symptoms may disappear for ages, then - maybe just once or twice - they are back, so i find it is worth keeping the whole lot learnt ( or if you find it difficult to remember, write the list down, add to it continually, with the date you are writing, and, as you are having such severe problems at present, refer to it daily. As many have observed in a lot of posts on this forum, as the years go on into over 25 or 30 years and more, of Type one, symptoms of hypos become more subtle. Yet i find that it is much more difficult and takes much longer - i mean more than a day - to recover from what appears a 'mild' hypo, whereas once i could bounce back from a seemingly much worse one. Raising control has been the only option, as I have been advised, it is essential - i treat any reading under 6.0 or 6.5 mmol/l as i might have once treated a 4.5 mmol/l - with a few CHO, and a re-test in half an hour, and a think as to how i got there. This works to an extent ( average blood glucose over 8.0 mmol/l is still called good control, and works out at a bit under 7% HbA1c ) but one has to work very hard to get pump settings right, and run a bit higher at night, waking at least once to check, if possible. I find the pump very good, as the temp base rates can be used at all sorts of times - even when in any doubt, or when tired (when symptoms of hypos are less), or when ill.
Porcine insulin is available, as CarbsRok says, and is preferred by some - i use it myself - but it does not sort everything in my experience - i find that at present nothing does. If you do change to porcine, it has, for me, a different action profile from human (and from some of the various pork insulins that used to be available) . I find that each insulin may have a given profile, but may act in an individual way. i would advise extensive blood testing to find out your profile, and give yourself a lot of time. Years ago, when we all had the changeover to human, this extensive testing was not advised. I think it is now. Best wishes
 
Again I would like to thank everybody for their input into this, I have and am still having major problems but hopefully some great news on the horizon, firstly and update from my memory situation.
I am now getting help with my memory problems and after a recent MRI and other scans and blood tests I have been diagnosed with early on set dementia, the scans show a few small abnormalities which now show up on my scans, this did intrigue my clinic who as most people consider the link between type2 diabetes and vascular dementia. As is the usual case this is being investigated with few funds in the US, as with a lot of drugs the long term effects of new are not fully understood, this is apparently the case with the Human Insulin. I was put on this 26 years ago and lost my signs of hypoglycaemia a good 20 years ago now, during this time when going into coma during the nights as well as anytime in the day some diabetics suffer Generalised seizures or Grand Mall Seizures, these are what I suffer virtually every time I go into coma. This in turn the doctors say has caused the damage to my brain, according to the doctors it isn't very common, those who do have them usually only have the odd one or two over a period of years.
Because of my last few coma's which have lasted a period of hours rather than minutes they are now concerned that at anytime my next seizure could be my last. I was in intensive care on oxygen due to a massive fall in my levels and I awoke the next day even though my glucose levels went up past the 19 mmol mark.
I have now been referred to a Doctor at Manchester Royal infirmary called Dr Rutter, he has a new clinic and is the leading Dr dealing with both Pancreas and Islet transplants, I will be having a number of tests over the next few weeks and at the end of this he will help me decide which transplant will benefit me most. Until recently Pancreas transplants were only considered if you needed a kidney or other organ but now this is available if both the doctor and patient agree. The Islet transplant is the easier option but, although you can go up to a year without injections for food or drink, it doesn't cure or stop you from having insulin, the major benefit is hopefully a massive improvement in diabetes control. Also you will usually need two or even three transplant over a period of months and take small amounts of insulin to help keep the pressure off the liver and pancreas, you also need to take anti rejection drugs for the rest of your life, to me a small payment.
The Pancreas transplant can leave you insulin free hopefully for a number of years, obviously this is a major organ transplant to risks are higher of rejection and complications, the reason I feel this is the better option for myself is the fact that Hypo's would be a definite thing of the past if everything goes well. At the age of 50 and with the on set of dementia I feel it will slow that down to a minimum and hopefully give me maybe 10 years or so of life without worry. My wife who cares for me as well as working full time would be able to go to work and not worry, never have to find me fitting and get a good night's sleep which can at times be very rare for her.

I will try to keep you all updated on this and for those who are young out there, it may lead to a cure one day, if not the operation may be available countrywide to all diabetics!!!!!!!!!!!!!
 
Just to let people know I am at Manchester Royal on the 23rd July, I've been looking closely at both the Islet transplant and the Pancreas transplant, making a decision on which to have if given a choice can be difficult. With me being 50 years old and diagnosed with early onset dementia I feel does push me in the pancreas transplant direction, hoping for up to 10 years insulin free is a major +++++, but I also have considered the risks attached too, a risk of cancer is higher as well as rejection. The Islet transplant I would have felt more comfortable with if I was in my 20's or 30's, it is fantastic technology and the future for it will change diabetics lives in the future when it hopefully becomes more available to more people. You usually need at least 2 transplants over a four or five month period to get the Islets working properly, you still need to take small injections of insulin to take the pressure off the pancreas but it improves control even if the transplant isn't 100% successful.
If I do have the pancreas transplant and it is successful I may not need any insulin until I reach the age of 60, I'm also realistic as 1 in 5 transplants fail for rejection reasons usually, I just think the prospect of a 10 year break would mean my dementia will be slowed down to a minimum, no hypo's and ambulances.
I would also just like to apologise to Brian_H, who sent me a message but because of me not knowing anything about the message system I have only just found it. Brian I will message you my phone number or exchange and I will ring you as soon as I've had my appointment I really do apologise!!!!!
 
I would just like to let people know that after being taken on by Manchester Royal Infirmary regarding an Islet or Pancreas transplant.
On Monday the 20th October I went to see the doctor who performs the full pancreas transplants, after a long discussion about all the pros and cons it has been a family decision as well as the doctors themselves that I will be, if my tests on the heart and the kidneys come back OK, be going on the full transplant list.
Because of my age 50 and the fact I've been diabetic for 30 years now that this would be the best time in my life to take this opportunity in having the pancreas transplant. Having seizures with my hypos and no signs puts me high on the risk of losing my life to a prolonged hypo, although the islet transplant is an excellent alternative if it didn't work well it would mean I could still have to take injections having the risk of hypo's although greatly reduced. The pancreas transplant, although having more risks and 5 weeks or so hospitalisation if successful would leave me insulin free for what could be the rest of my life, I know I'm not looking at living for another 30 years so I'm being realistic.
I looked very closely into both options and picked what we felt was right for both my situation, my age and for what is right for my family who deal with the aftermath of the hypo's.

Anybody out there who , like myself struggles daily with no signs and unstable diabetes don't afraid of pushing to get this help. I had to push and push before being heard properly in Derby so I know how hard it can be to get people to listen, after trying all the help available there was no alternative but to give me the opportunity to get real help for what was life threatening 24 hours a day. The Islet transplant is getting better with time and more of these operations are being done, the success rate is around 40% after the first year being insulin free although you still have to take small injections to take the pressure of the new Islets, so if you think this would help you then push and go for it!!!!


I would just like to thank everybody on this site for their great help with my situation and advice that has been very helpful at times. When and if I get onto the waiting list I will again update those interested, hopefully it won't be too long and I can't wait to be listed. If my test are for some reason not up to standard it may be that I will have to go for the Islet transplant, the good thing is there is a back up and it's not a bad back up!!!!

Many thanks to everybody Neil
 
Hi Neil, I have just come across your post and read about your problems. I'm sorry you have struggled so much with your diabetes. It sounds like good news that things are moving in the way you hoped, but I notice you don't mention anything about your diet, insulin doses etc. It seems like you are willing to try anything that would help your situation, so have you ever considered a low carbohydrate diet? I know how what you will think at first; 'I'm having loads of hypos, so why would I take away the main thing that raises blood sugars?' Well, I have been low carbing for almost a year now, and I have a tiny fraction of the hypos I used to get. Basically, you get your energy from protein and fat instead of from carbs and sugar. You also take much less insulin. You say that the human insulin you are on is the main problem, so having less of it in your system would be a good thing I imagine. A pancreas transplant is a massive commitment, which may well be exactly what you need. However, I advise you to explore all the options before going down this route. At least have a look into the idea of low carbohydrate, and the facts behind it. Worst case scenario you spend a week checking out the relevant material and decide it's not for you. On the other hand, it may be as much of a revelation for you as it was for me.
I would suggest that you read Dr Richard Bernstein's Complete Diabetes Solution. He is a Type 1 diabetic himself, and has been since childhood. He is now in his 80s, and is in very good health. Also, even if you do nothing else, check out this video: It was such an eye opener for me. Whatever route you take, I wish you the very best, and hope that you gain the quality of life you so desperately want.
 
Yes I have tried low carbohydrate diets over the years, I have a very close relationship with my dietition, the thing is with all the problems and other illnesses I have and have suffered over the years the low carb diet caused me other problems and situations. I feel also that these adds by third parties can be very misleading, it is not always just about diabetes control as a simple sugars and carbs = the same amount of insulin for everybody. Other illnesses and other factors in life have an impact on this debilitating illness when control cannot be found. None of this considers people who suffer third party effects e.g. dreams and nightmares can lower sugars, we all dream different and it affects individuals in different ways. Exorcise again is very individual, some of us are unable to do it and we all our metabolism's generate different uses of sugars. Medicines we take as type 1 diabetics who have had this illness from a young age can have a major effect on control.
I can go on and on and on about what can effect an individual with diabetes, AND may I add we are all indivual, different lives with different ways and means of coping and living with this illness.

I do not wish to be ignorant, abusive or in anyway transparent to what you are saying but I saw the man who is going to be conducting my operation less than three weeks ago. He is the leading pancreas transplant surgeon in the country based at both Manchester and London, his prognosis on my condition combined with all the other illnesses I suffer was as follows:

My daughter accompanied me to the appointment as I have been classed as Disabled for 25 years, I can't drive due to 0% hypo awareness, I have in the past 6 months had 12 ambulances called out and been entered into hospital twice with keto acidosis on the verge of intensive care and spending ten days having to get not just my sugars back down but other communication including my potassium and other chemicals that are part of this life threatening complication.

The team who look after me and who said I have no option but to have surgery either by Islet or full pancreas transplant have been at a loss as to treating my diabetes, it's been a fight for me for over 25 years and yes I've read everything including what you are trying to sell. I do not like some of the headlines and assertions that your literature leads diabetics into believing. My advice for anybody seeing these books to take them as they should be taken, a sales ploy to make money. If diabetes was so easy to control, so easy to maintain and so easy as a lot of these publications push, diabetes would not be the problem it is.

Please do not use my thread to advertise how people can cure diabetes because you are embarrassing to those of us who can see through you, at a minimum you are a danger to diabetics out there who want to believe that there is a miracle cure!!!!!!!!!!!!!!!!!!!!!!!!!!
 

Could you clarify who the post that I have quoted was aimed at?

It comes directly after a post by @Charles Robin , but it does not seem appropriate to the content of his post.

Was it addressed to a spam post that has been deleted by a moderator?
 
This morning I logged in on my fire phone where I saw the @Charles Robin post but when I clicked the video link it took me to a site where it was offering if I remember rightly, A thirty second cure for diabetes and it kept linking me to a site wanting me to sign up and be cured never needing needles or injections again, I tried several times and being put through to rubbish which I felt was not only unsuitable but dangerous and full of information I felt angry about when I clicked the video. After receiving your mail I logged in on my computer and have been taken to a different link which is by Troy Stapleton, I'm a little confused about what is going on and I have the Stappleton video already downloaded on my computer from some time back, at the time when I was logged in on my fire phone I breakdown the email quite quickly and directly hit the video button. That's when I got what looked like a sales ploy and if I had been elderly or new to diabetes could have been pointed to rubbish that could have been damaging. I'd appreciate your advice as I feel a little foolish at the moment!!
 
How weird!
I've just clicked on @Charles Robin 's link and got the correct, LCHF lecture.
I can't speak for Charles, of course.
But maybe a glitch on your phone link?

(And if you knew how many errors, mis-posts, misunderstandings and general incompetent f*ckups I have made on this forum, you wouldn't feel nearly so alone!)
 
Wishing you all the very best, I hope you get your transplant and find some relief from this ordeal you have been through.

Ali
 
Thanks for that information and I would like to apologise to @Charles Robin 's link. Yes my phone is a new phone and I'm not sure what the security settings are at the moment as I've only had it a few days but again I went to the link on it and the same video link came up which I looked at more closely and yes it is a utube video but not the Troy Stapleton link which I get on my computer. I shall make sure that I only use my computer at the moment to access the diabetes.co.uk site as I must look into the security settings on the phones internet. New technology is not my greatest asset at my age and I wonder if it is possible for me to remove my comment on here, your advice would be most welcome!!!!

Thank you for your wishes, I would like to keep people up to date on what's involved and how the operation evolves over time, I am optimistic but very scared too.
 
Hi,

I think you can delete the comment yourself.
If you look at your comment, you will see buttons below it, Edit, Delete and Report.
Just click on the Delete option, and you will be asked why you want the deletion.
Ok your decision, and the comment disappears.
It takes just seconds.
I've had to do it myself, when I accidentally duplicated a post.

Hope that helps.
 
No worries Neil, and I'm sorry you had trouble with the link. It was definitely meant to be the Troy Stapleton video, not a link to someone selling snake oil.
 

@Neil Fowkes, you might be interested to read about Liraglutide and alzheimers. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1741
As I understand it there is firstly the suggestion that alzheimers is linked to insulin resistance within the brain (it is now believed that insulin is indeed used within the brain) Secondly it appears that 'brain inflammation' is a contributing factor.
 
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