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son of 14yrs diagnosed in sept 16 feels ill goes to bed

L

Lebsky

Member
Messages
8
Type of diabetes
Type 1
Hi i would just like some advice. My son who was diagnosed in 2016 with Type 1 diabetes. Started on Lantus and nova-rapid. After about 3 months he started to feel really fatigued and had pains in his limbs and stomach. i went online to search these symptoms and found that others had these symptoms and said it was caused by the Lantus slow release. I stopped giving him the Lantus and within a day he started to feel better and his humour and personality came back. After speaking to diabetic nurses i was told it could not be the Lantus and i should not stop him taking it. His levels did start to creep up especially at night time. After further research online and speaking to the Independant Diabetes Trust https://www.iddt.org/ who one lady had the same problem when her daughter was taken off Hypurin Porcine Isophane and or Neutral and put onto Human/analog type. she became ill after a few months and quality of life for a teen was nil, consequently went back on Porcine and all illness and symptoms went away within days.
With these findings i spoke to my sons consultant and asked if my son could trial the Hypurin Procine Insulin, he was horrified and said we don't use this anymore and if i continue down this rout he could not continue to be my sons consultant. As my sons was not taking a slow release insulin and his levels where creeping up at night he persuaded us to Try Levemir. But after a few weeks he became ill again. Next meeting with consultant explained been unwell so consultant suggest he take Levemir in morning and no other insulin during the day except to take with his evening meal, hes been off school more than ever and started having hypos. I want my son to trial the Procine Insulin but my consultant wont prescribe it. Does anyone on here from UK use it? and what area do you live in? and does anyone else have similar problems and any advice.

Feeling desperate as sons quality of life is diminishing and i can see his spirit is fading.

Julie mother of 14 year old boy with type 1 diabetes
 
Hi @Lebsky - sorry to hear about the issues your son is having. Human Porcine insulin is much harder to obtain now - I'm tagging @CarbsRok as a user who can give advice.

What I would suggest is that you talk to your consultant about putting your son on a pump if he is having issues with the longer acting insulins, as you haven't mentioned any issues with the short acting analogue insulins and this might fix the problem. I'm surprised that this wasn't mentioned by the consultant in the first place if I'm honest.

When you say Levemir is making your son ill, what are his symptoms?
 
Hi Lebsky, first of all, I would never ever stop him taking his insulin, it's keeping him alive. I was diagnosed when I was 14 (I'm now 42) and the pains I got were awful (leg cramps, stomach pains etc...) but I think they were some kind of growing pains, as your body has been starved of insulin, when its introduced, your growth hormones go in to overdrive. I was on a mixtard back then. And I'm going off memory and what I was told by the consultants at the time. Is your son eligible for an insulin pump? If so I would recommend one, its done wonders for me.

Good luck, and I'm sure you will get some amazing advice on here.
 
If you son is ok with Novorapid and is only experiencing issues with the slow release insulin then a pump maybe the answer as they only use fast acting insulin. Novorapid would be drip fed continuously via the pump so would always be in your son's system rather then in and out again after a few hours as it is currently used.

They are more work initially but the rewards with better control and freedom are worth it in the long run. You will have to demonstrate your/your sons understanding of carb counting/potentially attended courses before being considered for a pump depending on the consultants/hospitals policy.
 
please dont stop his insulin there are ways around this problem. get your consultant on side. especially if you want a pump.
 
I still use Porcine insulin and live in Lancashire. It can be used in an insulin pump by the way. There is a lot of nonsense talked about it, I'm afraid. Most consultants/DSNs have no experience of it being used and I believe that is the real reason it is seen as a problem. I had a complete loss of warning symptoms with the introduction of 'human' insulin. When I was bullied into using an analogue, once again I abruptly lost my warning symptoms and reverted to my previous Porcine insulin in about a fortnight.

I'm sure there have been other people on the forum who have complained about the effect Lantus has on them. Perhaps it might be an idea to mention Lantus problems in the title of the thread ? That should attract the attention of those with bad experiences of Lantus.
 
I agree with those who have suggested a pump. In the meantime make sure he is taking Levemir or Lantus. Even if it is making him ill it is keeping him alive. Without background insulin in his system he could go into DKA quite quickly which is fatal. You could also try Tresiba, or NPH (though NPH works differently than these other basal insulins and can be unpredictable).
 
ask to try degludec (Tresiba). levemir and Lantus didn’t work great for me, and I was getting headaches and sickness 20minutes or so after injecting and painkillers weren’t helping. Since switching to degludec I’ve had better controlled blood sugars, less headaches, and feeling better in my self.
hope you find something to help solve your problem
 
Thanks for the advise i will as about the pump at our next meeting.
 
Thank you for your advise, i will enquire about Tresiba
 
Thank you so much for your advise i will let the consultant know that its still prescribed in Lancashire, as according to him its not available anymore.
 
He is very tired and has a throbbing stomach he still eats but just feels unwell and is like a zombie mostly just going to bed.
 
Another vote for trying Tresiba. Or a pump. Finding porcine insulin could be a problem these days. I was on it when I was first diagnosed, then Humulin came out pretty quick, but I used "Ultralente" long acting for a number of years before Lantus. It worked just fine IMO (and it was cheap/generic).
 
This may not be accurate, it's just my personal impression, but I am starting to think that lantus makes me feel like **** as well. Usually I take it in the morning and it seems to be running out by the following morning. A while ago I traveled to a time zone where I was taking it in the evening and in the late afternoons I felt not great but better than I had in ages and ages.

Again this is just my impression, nobody should make any sort of decision based on this, but the short version is yeah me too.
 
Porcine insulin is freely available in the UK, it's only the bovine that is being stopped due to no more beef crystals to make it.
It's your son's right to try an insulin of his choice the consultant concerned needs an op on his rear end.

Your son's GP can prescribe the porcine insulin. Just ask to try it so you can eliminate it from the list of not suitable or as others have suggested request a pump.
 
tim2000s said:
Hi @Lebsky - sorry to hear about the issues your son is having. Human Porcine insulin is much harder to obtain now - I'm tagging @CarbsRok as a user who can give advice.
Click to expand...
I'm highly allergic to porcine insulin so used bovine insulin. I now use Fiasp in my pump as bovine is being discontinued.
Porcine is freely available and will continue to be so.
 
Hi was i got type 1 diabetes in 1979 Porcine was the insulin of choice but soon as they made Actrapid by human means everyone was swapped over due to it being cheaper. When i was swapped over i lost all my hypo awareness which made my diabetes harder to control. If it is still available then your son should be allowed to have it but your local health authority may have told the consultant that it is no longer able to perscribe it. If that is the case you may want to contact your LHA and ask why he cannot have it, if its about cost then ask about a pump as he will not need any long acting insulin. There was a stage when hospital would change my insulin on a regular basis and one of the DNS told me that the drug companies would make a deal with trusts to use there drugs. I found out that this is also true with insulin pumps at the hospital i was at had a deal with Medtronic so that was the pump i was given. If your son is having problems now then it is time to act as the longer he is unwell it may be causing damage that you cannot see. Ask the consultant about a pump to see what he says, if you have no joy then see your GP, LHA or even get to see your local MP and explain about how your child is suffering, diabetes is hard enough without having more problems with the medication he is taking to keep him alive is making him bad. At the end of the day it is all about money but the thing is if a diabetic is healthy and good BS then they will save in the long run as you will not be at the GP or hospital as much but you have to fight for what you believe is right for your son
 
Have you considered giving him an antihistamine a hour or 2 before the lantus? It might help reduce some of the allergy symptoms.
 
Hi there. I am really sorry your teenager is feeling unwell. I'd get him seen.
 

I missed this thread, I hope all is sorted now? all the consultant is saying is that he does not use/like it, i do not think he can refuse to prescribe, even if he could, I agree that it's up to the patient and the GP. Hypurin is freely available in uk, and perfectly fine - Any reasons given as to why don't like make no sense -porcine formulations, and beef ones, were used for more than 60 years, all over the world and if you are able to read the reports of the time, were seen as a miracle medication, restoring people who were near death to healthy life in a short time. Human insulins were not even on the scene, and not available even when i was diagnosed 38 years ago. It is true that in some areas they are used less - in my local area, i am the only person getting it from my chemist, but that is no problem at all. Your GP can arrange for your son to go to another consultant, also check the NICE rules, i am pretty sure your son has a lot of rights, see CarbsRok above, and one is to have his choices respected etc etc. The consultant is not infallible, it would best to go to your local Healthwatch, if it is still there for advice. There is also POhWER. Hypurin is good in the pump, safer for those who cannot tolerate hypos, if a pump could be an alternative, but why force your son to manage on a not ideal insulin without trying porcine first, it may take at least 6 months or more for a real trial. The exhaustion your son has sounds like what happened to me when i changed from porcine, and i did not change back for some years, and took ages to recover a sense of wellness. Everyone is different, we all have different genetic makeups, what suits some may not suit another.
 
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