Antibodies to insulin

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quinny

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My daugter has been insulin dependant for 21years . She is now 25 . In the last few years she has suffered with unexplained highs , that come on with in hours and that canot be controled with with insulin ajustment. We have in the past had to inject up to 30 units of quick an hour with no change . She always ends up in hospital with readings of30+
Doctors have no idea what is happening and now have decided that she has built up antibodies to the new quick acting insulins and put her back on the old 20min befor food insulin . Not good lots of hypos!!!! Please has any one come across this befor.
 
quinny said:
My daugter has been insulin dependant for 21years . She is now 25 . In the last few years she has suffered with unexplained highs , that come on with in hours and that canot be controled with with insulin ajustment. We have in the past had to inject up to 30 units of quick an hour with no change . She always ends up in hospital with readings of30+
Doctors have no idea what is happening and now have decided that she has built up antibodies to the new quick acting insulins and put her back on the old 20min befor food insulin . Not good lots of hypos!!!! Please has any one come across this befor.
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Hiya

Sorry this is a problem, not one I've heard of but I'm amazed they have put her back onto old insulin, I'm presume you are talking about mixes. Why haven't they put her on a pump ! They surely have to try that. You can use Novorapid or Humalog in pumps, you never know buy by using quick acting through a pump it could make a huge difference in how it works for your daughter.

She may have tried a pump, I don't know, but if not ask and try one. She is a person who will definitely qualify under the NICE guidelines.

I hope you get the highs and lows sorted out.
 
SHE IS ON HUMULIN S AND LEVAMIR. wE WERETOLD THAT SHE HAD TO DO THE CARB COUNTING COURSE OVER 5 WEEKS WHICH WAS OK AS SHE HAS ALWAYS CARB COUNTED. tHAT SHE WAS TOLD WOULD GET HER ON THE LIST FOR A PUMP. WE HAVE NOW BEEN TOLD THAT SHE DOSN,T FIT THE CRITERIA.AND THAT THEY ONLY HAVE ONE NURSE TO YRAIN AND THERE ARE MORE NEEDY CANDIDATES!!! sHE IS DEVISTATED. !!! WERE DO WE GO FROM HERE. ?She injects 5 times a day and does at least 5 bm,s. We talk all day to try to control highs and lows. She had a bad hypo at work last weEK and had to call me in. Neither of use is living a normal life. (she lives in her own flat)
 
quinny said:
SHE IS ON HUMULIN S AND LEVAMIR. wE WERETOLD THAT SHE HAD TO DO THE CARB COUNTING COURSE OVER 5 WEEKS WHICH WAS OK AS SHE HAS ALWAYS CARB COUNTED. tHAT SHE WAS TOLD WOULD GET HER ON THE LIST FOR A PUMP. WE HAVE NOW BEEN TOLD THAT SHE DOSN,T FIT THE CRITERIA.AND THAT THEY ONLY HAVE ONE NURSE TO YRAIN AND THERE ARE MORE NEEDY CANDIDATES!!! sHE IS DEVISTATED. !!! WERE DO WE GO FROM HERE. ?She injects 5 times a day and does at least 5 bm,s. We talk all day to try to control highs and lows. She had a bad hypo at work last weEK and had to call me in. Neither of use is living a normal life. (she lives in her own flat)
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Hiya

That is rubbish, she does fit the criteria, they are fobbing you off. There are a few criteria. One is that if MDI (what she is doing) doesn't work, well it seems to me it isn't working so she fits that one.

Another is if her HbA1c is over 8.5 % I'm guessing it may be if she has been high for ages.

But anyway she fits the first one.

You need to get in touch with John Davis from INPUT
http://www.input.me.uk/

He is a phenomenal man, I know him personally and well. This is his non profit company and he is on an insulin pump himself. He has won awards and he will fight your corner and tell you how to get an insulin pump. Email him through his website. Read the website as well, there is so much info including the NICE guidelines.

Your daughter is being told rubbish and I really wish I could come and fight for you.

Where abouts in the country are you?
 
Welcome Quinny
Sorry to hear you and your daughter are having problems with ther insulin. I guess you have to trust the medics, as they know the full story. However, just wondered if all the short acting insulins have been tried? Obviously if the types used in pumps no longer suit your daughter, then a pump isn't an option, but finding a suitable short acting insulin seems a good aim - perhaps even one of the older animal based insulins? But if a pump is the way forward - and it's relatively easy for your daughter to chack herself against NICE guidelines (if she lives in England or Wales - there are others, but similar, for Scotland and Northern Ireland) and then, if local hospital can't help, get referred to another, even if that means more travelling.
 
Thank you,for the responces. We live in wiltshire , but attend Royal United Hospital , In BATH. I will look at the web site you have recomended.
 
Her HBA1C was 11, but when they put her on the older type insulin it droped to 8. But this was because she was living in a constant state of HYPO.As HUMonlin S lasts up to 6-8 hours , it,s hard to adjust at meals as we have always done. We have lowerd it by 10 over the last few days and she is bouncing all over the place.
 
Hi Quinny

I'm sorry to hear about your daughter's plight. I got a lump in my throat reading it.

I'm no expert and can't offer any advice. I can only agree with what Adrienne and Copepod said about pumping and second opinions.

Edit: I've just had a brainwave... Could you ask your daughter to see if the doctors can test for insulin resistance? Could she really be an insulin dependent Type 2 diabetic? Can I suggest getting a doctor's opinion on using something like Metformin as well as insulin?
 
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Hi Quinny,

I agree with what Adrienne has said and i think you have been fobbed off.

We live in Wiltshire and go to the new hospital, is there a reason you go to Bath? Your daughter is allowed a second opinion and she is allowed to be referred to another hospital if she prefers. The hospital we attend has pumpers (although we are in the childrens dept as my son is 11) - but i do know that there are adult pumpers at the adult clinic. There is a member on here who goes to this clinic, I am hoping she reads this and contacts you. Dont settle for second best healthcare - you dont have to.
Just to let you know we/my son loves the pump and he has only had it for 2 months now. Its so much easier to control hypo's and hyper's as things change very quickly on a pump. 🙂Bev
 
Todays readings have been . 8am hypo at 3 and 6 after
1pm- 7
5.45-15?

How can she adjust insulin when it throughs that at her out of the blue. Hope were not on our way to hospital AGAIN!!!!!!!!
 
iS ANYONE USING ANTHING OTHER THAN NOVARAPID OR HYMLOG INSULIN IN THERE PUMP?
aPPOLIGIES FOR MY SPELLING AND TYPING , NEW TO COMPUTERS. bUT SOME THINGS ARE TO IMPORTANT TO LET DISLEXIA GET IN YOUR WAY.
 
quinny, we really don't mind about your spelling/typing, although you do seem to be shouting 😛 i think you have your caps lock on the wrong way round! no worries 🙂

has your daughter kept a log of her blood sugars, what she eats and how much she gives for the food? that can help spot trends - like if she goes high every evening, or low at certain points.
 
She fills out a book with lots of details. Insulin dose, bm,s ,ajustments, Changes to her normal working day and so on. We have found that because her job is long hours and pysical during the week , she counts in 1,s and at the weekend she counts in 3,s. She has been told that she is already on a very high dose of insulin for her body weight so she is always aware of how much this increases at the weekend.
 
Hi Quinny,

I also use a pump and use it with just Novorapid. Although I have never used any other fast actings I have tried a couple of basals and this novorapid only is definately the easiest way of striking a balance I could find.

I am sorry your daughter is having such a crappy time, it all sounds like a complete nightmare and I sympathise. Last year I also got to a really hugh HbA1c of 10%, I was mortified and feeling pretty horrific. I have found that pumping has changed completely the way I manage myself and my diabetes. I agree with what Adrienne and Bev are saying, and to be honest I think it stinks that you are told she does not meet the criteria- it sounds as if you have been given an excuse? If they dont have the adequate staffing you should be offered an alternative. I hope you persue the suggestion of contacting John Davis, he will most certainly advise.

I really hope things get sorted soon Quinny, and by the way I adore your perserverance (?sp) with the computer, good for you and best of luck.

Louisa
 
Hi Sugarbum, I,v been in contact with john and hopefully he can help. We just hoped that if the antibody thing stoped us using the normal insulins, that there might be some other soluision out there. Oh well we,ll see what they have to say next teuesday when we see the hospital again.
 
Thats good news Quinny, I wish you lots of luck with that. x
 
has she tried aprida? thats another analogue bolus insulin.
people used to use actrapid in the pump before the newer insulins came out so maybe that would be an option.
We had a member here who used beef insulin in a pump so there are other options, even if they are not the norm.

Hope she finds something that helps
 
quinny said:
Hi Sugarbum, I,v been in contact with john and hopefully he can help. We just hoped that if the antibody thing stoped us using the normal insulins, that there might be some other soluision out there. Oh well we,ll see what they have to say next teuesday when we see the hospital again.
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Hiya

That's great news. If anyone can help with pumps and insulins in pumps, it is John.

I wish you well and please keep us posted.
 
antibodies to human insulin

Just a quick up date for you . My daughter has just come home from a week in hospital AGAIN. !! They put her on a sliding scale to sort out the high readings, but this time it took 3 atempts to get her off the intravenouise insulin. As soon as she injected , she went sky high. So they think she has so many antibodies to the human insulin, that she can no longer tolarate it. so as of 3 days ago she is on pig insulin. Seams to be working ok. But more inportantly they have agreed that she should be on a pump. Thanks for all the help and contacts. now we wait !!!!!
 
quinny said:
Just a quick up date for you . My daughter has just come home from a week in hospital AGAIN. !! They put her on a sliding scale to sort out the high readings, but this time it took 3 atempts to get her off the intravenouise insulin. As soon as she injected , she went sky high. So they think she has so many antibodies to the human insulin, that she can no longer tolarate it. so as of 3 days ago she is on pig insulin. Seams to be working ok. But more inportantly they have agreed that she should be on a pump. Thanks for all the help and contacts. now we wait !!!!!
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Excellent news. Its about bloody time they woke up. If someone has this much trouble with all the injection regimes thrown at her she is a prime candidate for a pump. I get so upset when I see parents like yourself and you daughter having to go through so much heartache so unnecessarily. These med professionals really need to start listening to parents who really are the experts of their child and their diabetes. No child is text book which is what they are having to go by or comparisons which you can't do either.

I would keep on their backs about this. Ask them for time lines ie when with pump clinic be, have they got the funding sorted, has the letter for funding gone off, when do they think she will be pumping. Don't be fobbed off by them, you know more now and can fight them if you have to but nicely (I always add that bit as I know I always want to go to places and shout the odds at people but it really gets you nowhere, you know what I mean). 🙂

They can't expect your daughter and you to have to go through this hospital scenario time and again so they need to get their fingers out and rush this through.

Good luck and please let us know how you get on.
 
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