Sorry this is long winded. I have a type 1 late teen Daughter who was dignosed 13 years ago. For the 1st 6 years she was what the hospital called a "poster child" the insulin she was on ( mixtard 30) was withdrawn within 6 weeks of using the new insulin she suffered her 1st fit and it has progressively got worse, even been in a coma. she has tried nearly all available insulin & I mean tried. she has spent the last 7 years constently hypoing even when on very little insulin & sometimes no insulin even while in hospital. Everything is checked & double checked. All she keeps getting off her Doctors is they don't know !! which does not help. I have had to watch her going from somone who was becoming independent & confident to manage every aspect of her treatment. To somone who is constently trying to gain control. She goes to all her appointments, she follows what they ask her to do to the letter, she is keeping food diary's, she is weighing everything just to make sure she is not over or under estimating her carbs. nothing is working. what can be ruled out is she is definitely type 1, not making her own insulin, does not give herself too much insulin, All her medication is stored properly & she has an excellent diet. I think the problem lies in the way her body breaks down the newer insulins eg an ingredient. I am open to suggestions. I just want her to get her life back.
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Type 1 Any Suggestions
- Thread starter darceeday
- Start Date
kitedoc
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- Type of diabetes
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- Pump
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Hi @darceeday, Sorry to hear of your daughter's plight and the stress and worry of it all.
Have the "i don't know" doctors or a DN ever suggested that your daughter try using of an insulin pump as a way to better control what is happening?
Particularly if linked to continuous glucose monitoring the pump can show her BSLS in near real time and one brand of pump is programmed to automatically reduce the insulin rate if BSLs drop. And cyclic ups and downs in BSLs can be handled relatively easily as women on this forum using insulin pumps can attest.
Why not a pump? That would be my first question. Maybe it has been considered. Not being in the UK I do not have local knowledge but your local CCG should have a list of criteria for who needs a pump (they are rationed by each CCG) and I am absolutely certain from other threads on this forum that frequent, difficult to prevent hypos and a fear of them fits one of the usual criteria. Others on this site will know and can also share their experiences of what helped in running the pump "gauntlet".
Type 1 diabetes is enough of a challenge without all the ups and downs of teenage years.
I recall going through the growth spurts in teenage years with insulin doses sometimes tripling over 2 weeks or so as the growth hormones surged and insulin resistance peaked as a result. Then as the growth spurt finished the hypos started and the insulin sensitivity increased like billyo. Down came the doses - like the music (Flight of the Valkyrie).
You sounds like you very much support your daughter in her endevours, and that is so important as unfortunately some (but not all) health professionals blame the patient when things are not going right and they do not know why.
Let her know we are all barracking for her and please ask questions along the way, such as about tips for control, pumps - types, criteria etc, food habits etc. Maybe she would like to use this site too.
There is a Pump forum as well as the Type 1 forum and many other forums and threads beside.
Have the "i don't know" doctors or a DN ever suggested that your daughter try using of an insulin pump as a way to better control what is happening?
Particularly if linked to continuous glucose monitoring the pump can show her BSLS in near real time and one brand of pump is programmed to automatically reduce the insulin rate if BSLs drop. And cyclic ups and downs in BSLs can be handled relatively easily as women on this forum using insulin pumps can attest.
Why not a pump? That would be my first question. Maybe it has been considered. Not being in the UK I do not have local knowledge but your local CCG should have a list of criteria for who needs a pump (they are rationed by each CCG) and I am absolutely certain from other threads on this forum that frequent, difficult to prevent hypos and a fear of them fits one of the usual criteria. Others on this site will know and can also share their experiences of what helped in running the pump "gauntlet".
Type 1 diabetes is enough of a challenge without all the ups and downs of teenage years.
I recall going through the growth spurts in teenage years with insulin doses sometimes tripling over 2 weeks or so as the growth hormones surged and insulin resistance peaked as a result. Then as the growth spurt finished the hypos started and the insulin sensitivity increased like billyo. Down came the doses - like the music (Flight of the Valkyrie).
You sounds like you very much support your daughter in her endevours, and that is so important as unfortunately some (but not all) health professionals blame the patient when things are not going right and they do not know why.
Let her know we are all barracking for her and please ask questions along the way, such as about tips for control, pumps - types, criteria etc, food habits etc. Maybe she would like to use this site too.
There is a Pump forum as well as the Type 1 forum and many other forums and threads beside.
Kittycat_7_
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- 492
- Type of diabetes
- Type 2
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Hi,
I'm so sorry to hear of your daughter's plight, is she getting any help from a diabetes specialist nurse with paediatric experience?
Hope she stabilises very soon.
Must be a very worrying time for you all, here to listen too.
Take care
I'm so sorry to hear of your daughter's plight, is she getting any help from a diabetes specialist nurse with paediatric experience?
Hope she stabilises very soon.
Must be a very worrying time for you all, here to listen too.
Take care
therower
Well-Known Member
- Messages
- 3,922
- Type of diabetes
- Type 1
- Treatment type
- Insulin
@darceeday . So sorry to hear of your daughters struggles. She sounds an absolute star and an extremely strong person to be able to give so much and still be in the position she is in.
I can’t really offer any personal advice but I’m going to tag @tim2000s . This guy knows and uses some of the most up to date control methods for diabetes. Whether it’s the latest insulin’s or newest techno devices for blood monitoring, he will have some great advice and hands on knowledge.
Hope you can find answers you are looking for.
Good luck.
I can’t really offer any personal advice but I’m going to tag @tim2000s . This guy knows and uses some of the most up to date control methods for diabetes. Whether it’s the latest insulin’s or newest techno devices for blood monitoring, he will have some great advice and hands on knowledge.
Hope you can find answers you are looking for.
Good luck.
Hi @darceeday - Sorry to hear about your daughter's issues. Thanks for tagging me @therower
Mixtard 30 was a combination of Insulatard and Actrapid, which are both insulins that are still available from Nordisk, so it should be possible to have the clinic offer those up, if they haven't already.
What I'd suggest is that she uses them in the same way she used to use the Mixtard, ie I assume she was on Twice daily, so if she took 10u in a single dose, use 3u of Actrapid and 7u of Insulatard. Worth bringing up at the clinic?
That always assumes that these haven't already been tried (I suspect they may not have because many clinics would focus on the newer Analogues insulins from multiple manufacturers rather than the older ones, which these are).
Mixtard 30 was a combination of Insulatard and Actrapid, which are both insulins that are still available from Nordisk, so it should be possible to have the clinic offer those up, if they haven't already.
What I'd suggest is that she uses them in the same way she used to use the Mixtard, ie I assume she was on Twice daily, so if she took 10u in a single dose, use 3u of Actrapid and 7u of Insulatard. Worth bringing up at the clinic?
That always assumes that these haven't already been tried (I suspect they may not have because many clinics would focus on the newer Analogues insulins from multiple manufacturers rather than the older ones, which these are).
dancer
Well-Known Member
I agree with @tim2000s, it sounds like the older insulins were better for your daughter. If she is able to take them in appropriate doses, it could solve the problem. If the problem isn't solved, then @kitedoc has made another good suggestion of using the insulin pump. Maybe even using Actrapid in the pump would help your daughter (only quick acting insulin is used in the pump).
Engineer88
Well-Known Member
I would also recommend if your local diabetic clinic have run out of knowledge which can help go up a level so you would attend a teaching hospital (like oxford/Cambridge local examples to me)
kitedoc
Well-Known Member
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- 4,785
- Location
- Adelaide, South Australia
- Type of diabetes
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- black jelly beans
Hi Again @darceeday, I missed the bit about your daughter being on Mixtard was it? I am not sure how many different types of insulin your daughter has been prescribed and what effect did they each have and what problems.
One of the reasons newer insulin were developed was that the older insulins including Insultard. Mixtard, Actrapid (and Soluble and Protophane) had irregular absorption from the injection sites. I cannot believe doctors would not know this.
The newer insulins, short-acting such as Humalog/Novorapid/ etc and longer acting ones such as Lantus/levemir have much more predictable absorption. Maybe one of the troubles in the past was this irregular absorption which may have led to high sugars one day and low ones the next?
A bit more detail, particularly about insulins and what has been tried for your daughter and what has flummoxed the doctors, would all help us to use collective experience to make suggestions for you and your daughter to take to the doctors.
Despite the above some people seem to do well on say, soluble insulin in a pump if there is say, an antibody problem, with newer insulins.
One of the reasons newer insulin were developed was that the older insulins including Insultard. Mixtard, Actrapid (and Soluble and Protophane) had irregular absorption from the injection sites. I cannot believe doctors would not know this.
The newer insulins, short-acting such as Humalog/Novorapid/ etc and longer acting ones such as Lantus/levemir have much more predictable absorption. Maybe one of the troubles in the past was this irregular absorption which may have led to high sugars one day and low ones the next?
A bit more detail, particularly about insulins and what has been tried for your daughter and what has flummoxed the doctors, would all help us to use collective experience to make suggestions for you and your daughter to take to the doctors.
Despite the above some people seem to do well on say, soluble insulin in a pump if there is say, an antibody problem, with newer insulins.
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