Lethargic

[colin@henhouse]

Hi. I am nearly at my wits end. I have been diabetic for 55 yrs, and for the last 5 or so years have felt totally unwell. I used to be on levemir + actrapid, and felt fine, but was changed to insulatard due to needing ever increasingly large quantities of levemir. My consultant decided I was no longer responding to the levemir. Ever since being on insulatard + novarapid I have felt unwell. I have been tried on various others, (humilin I comes to mind) to no avail and have just recently after much badgering been tried on Lantus. First day was marvelous. Felt really well. Day 2 felt awful slept nearly all day then same old same old. I spoke to my G.P. and consultant who said I havn't given it a chance. I now have a pain in my right hand side, ?? which my GP says is muscular due to being too fat, and had the feeling that a fly was landing and walking on my legs and backs of my hands. I have constantly requested to try Hypurin which I keep reading good things about, but they both tell me its not available/or is from the dark ages. Yesterday after 5 weeks I reverted to Insulatard and immediately the fly sensation has gone, and the 'muscle pain' is lessened. I must add that my blood sugars on both insulatard and lantus have been better than for years. with I think my last b.m? being 6.8 I am just totally washed out and lethargic. I have had blood tests for everything under the sun with nothing being found. I have a good balanced diet, (though my gp wants me to go onto a 'pulse' only diet to loose weight, I am 103kg & 6' tall) I am trying to walk for half an hour every day, which I am finding difficult. I am retired so these days not as active as I used to be. Any suggestions for me to pass to my 'experts' especially regarding 'pig insulin' will be more than welcome Thanks Colin Shurvell

 

[catherinecherub]

Looks like your post has been missed @colin@henhouse.

I will bump it up for some replies.

 

[azure]

Hi @colin@henhouse

I've moved this to Type 1 for you to hopefully get more replues.

I'm on Hypurin Porcine Neutral insulin (I have a pump so don't use basal insulin) I feel a million times better since I changed to this insulin. I was previously on Humalog and had awful tiredness, weak and aching muscles, painful joints and GI problems. Those problems cleared up totally when I changed to porcine.

I found the IDDT very helpful:

http://www.iddt.org/about/gm-vs-animal-insulin

Different insulins suit different people. Some people don't do well with human insulin and the analogue insulins can cause particular problems. You should have an insulin that suits you.

There are other people here on porcine and also bovine insulin.

 

[colin@henhouse]

Hi. After many months of trying, my diabetic clinic (Exeter RD&E) has agreed to let me try Porcine insulin. I have to wait for them to inform my GP. Apparently they are suggesting porcine isophane to be used in conjunction with novorapid as they suggest that I wont be able to control my blood sugars on porcine alone. As its some 20 or more years since I last had porcine I can understand their concerns and just cant wait to give it a try. I have gone back onto insulatard after trying and hating lantus for 5 weeks, The 'creeping skin' effect I was getting with lantus has stopped, only to be replaced by severe back and joint pain. Will give an update when I finally get to use porcine after 2 years of asking. Hoping it is the wonder cure I'm looking for. I have to add that my blood sugars have been excellent on both lantus and insulatard,. I just feel dreadful on either. Cheers Colin

 

[colin@henhouse]

Well got my porcine y'day after a heroic effort by the chemist, did my first injection last night, dont feel any different, but thought maybe it will take a few days to rid the insulatard from my system, then happened to look at the packaging only to find I have been given 30/70. Checked with the chemist who said that the script clearly asked for that even though the letter states isophane. Blood ok this am at 6.1 but chemist said to be very carefull over the weekend and maybe cut right back on novorapid doses and try to speak to my GP on mon. Why is nothing ever straightforward. Cheers Colin

 

[brendan101]

Let us know how you get on Colin. There is another background insulin called Tresiba which I have been using for some time. It is a Human insulin but it's completely flat for me with no peaks like Lantus. Lantus is not regarded as a full 24 hour basal and some peoplke take 2 injections a day. The Tresiba provides me with full coverage and for 24 hours and far less hypos overnight (although you have not mentioned an issue here). I have used the inhalable insulin Afrezza too which gave me a massive boost in energy, less muscle pain in my legs and an overall feeling of wellness which I don't have on Humalog. Maybe I am experiencing the 'Human' problem too. When I read the above link from IDDT, I suffer all the symptoms.

 

[colin@henhouse]

Its only been 2 & a1/2 days on Porcine, but unfortunately I dont feel any better. Also I have a massive back pain (which I was blaming insulatard for) which hasnt so far lessened. Will continue with porcine, and speak to someone on mon as to why they prescribed 30/70 instead of isophane as suggested by the diabetic clinic. Having said that so far my blood sugars have been ok. Maybe its just an age thing. Though I did feel marvelous for nearly a day when I started on Lantus. Unfortunately it only lasted a day before I began to feel 'odd'. Maybe if I can sort the back prob I will start to feel better, but it isnt looking promising. I had asked if there was anything else I could try when they were refusing me porcine, but they said there wasnt. ?? I would say it would be worth your while trying porcine Brendan, until my disappointment with it that is, but it is really annoying when you know that you have the ability to feel well but cant unlock the secret. PS. I have managed to lose a kg in the 2 days I have been on porcine, and that is without doing any exercise due to my bad back. PPs, I used to get overnight hypos and was advised to take my nightime dose with my evening meal which completely solved the problem. Cheers Colin

 

[brendan101]

I have had some independent advice on Porcine. I have heard that your dosages can lessen on Porcine and this will also help with weight loss. Using Humalog my weight fluxuates a lot and I feel very sweaty all the time, bloated, exhausted and generally unwell. I am speaking to my diabetes centre today hopefully if they return my call and I will demand that I trial porcine for 3 months. I cannot go on feeling like this. INcidentally when I imported Afrezza from the States my energy and wellness shot up amazingly well. Was this because I was no longer using Humalog? Give it some time Colin, a least 3-4 weeks. Watch your BG levels. I know you said they were good with the other backgrounds you used. My HbA1c is 6.2% but I wouldn't mind it being 6.9% if I felt better. The gold standard for diabetics is a lower HbA1c. The target has been driven down whilst at the same time more diabetics than ever are being admitted to hospital in comas due to hypos. The gold stadard should be quality of life. Everyone should be listened to. Keep going with the porcine. Try to watch your diet and get out and do some very gentle exercise if you are able to. It will all help. Also when you next speak to your team mention Tresiba as a background insulin. I find it amazing for BG control.

 

[azure]

@brendan101 It was Humalog that I believe made me feel so ill. Swapping to porcine made me feel so much better.

It's worth a try.

 

[colin@henhouse]

Got my 'correct' isophane porcine y'day took some last night and have to say dont feel any different at the mo. But the 'stand in gp' did say that insulatard is so invasive it may take a day or to to clear from the system. Even if I don't feel any better I will stay on it because at least it is a natural product not some GM cr-p trying to trick the body. I did have high hopes of being 'transformed' Also the gp says that my sudden 'bad back' which appeared when I went back onto insulatard, is probably coincidental, and has put me on codine sulphate ?? to help with the pain. He did say I shouldnt expect too much until my bad back goes. Good getting old isnt it. Cheers Colin

 

[Engineer88]

Have you considered a pump? it would take away the need for background insulin which seems to be making you feel a bit pants!

 

[brendan101]

Here is my update. So I did have some Novorapid in the fridge from my affair with an insulin pump some time ago that didn't work for me. I took Novorapid today and I feel a lot better. I have done this before where I was feeling poorly on Novorapid and then I switched to Humalog and have been using this for a few years. I feel markedly better today. I would say it's a Human insulin thing for sure and I cannot wait to trial porcine insulin. I only hope the diabetes team get back to me because I have a habit at times to get frustrated and demand that they help me but this does not always endear me to others. There is a big difference n how I feel today. That said Colin I would stay with it. Your back issue sounds like a totally different thing for sure. I do get a lot of pain in my calves and I take codeine for this. When I started using the inhalable insulin this strangely went away very quickly. I also feel throbbing in my feet and general unwellness. There is something in it for sure. This illness does not appear in standard blood tests but you know your own body and in general people don't become upset and worried about their health without something causing this. Trust that you are right Colin. We would all be very keen to know if your ills go away and you start feeling normal again. I ended up in a dark place with this as how can you feel so exhausted all the time without something showing up but you CAN feel bad. I guess we are opening up a can of worms with the human vs animal insulin debate but there would not be a company in the UK producing animal insulins if there was no need for it and everyone was doing great on human 'equivalent' GM insulin. Think about it....

 

[colin@henhouse]

Well its been a while, but here is an interim update. My back is still playing up and in desperation my GP is giving me acupuncture tomorrow. (didnt no you could get it on NHS) In desperation I tried going back to lantus (which first time round made me feel great ) one day only, and strangely my back felt much better for one day but I didnt ??and it didnt last. so I went back onto porcine. My pharmacist said it could just have been the body reacting to a change in medication helped. So I am still on Porcine isophane + novorapid. My blood sugars have never been better, have not had a single hypo, bs range between 4 & 8 which for me is brill, but still feel like c--p. ?? The back thing isnt helping. In the meantime I wrote to my MP (Mel Stride) re relative cost of insulin as my chemist told me, porcine is 'only saving' about £20 a month (wow) I was amazed and thrilled to get a reply today saying he had asked jezzer (that poor man needs our support) and had received a reply from Lord Prior who says the NHS gets best possible value for money and looks at each case individually. That wasn't really my question but still, at least they looked at it. I suppose my next thing is to ask if I can try instant pig instead of novorapid to see if they dont like being mixed ?? Beyond that I really dont know. I do know that there is a way forward as when I first went onto Lantus I felt great for one day only. (I did try it for 5 weeks) So thats how I want to feel all of the time. Sorry to go on Cheers Colin

 

[azure]

If you're concerned it may be the human/analogue insuoin, then it would make sense to try the fast acting porcine.
I hope your back improves. Back pain is horrible and can be so wearing on a daily basis.

Thank you for the update : )

 

[brendan101]

Hi Colin,

I am in the unique position that I managed to ditch rapid acting analogues in favour of Afezza, the inhalable insulin from the States. The transformation was amazing. Afrezza is an amazing insulin for many reasons but this is not what's of concern in this thread.

I have tried Porcine neutral insulin and so again ditched the rapid acting analogues Novorapid and Humalog and amazingly within 24 hours most of my issues went away. My problems were bloating, digestive issues, leg pain, fatigue and brain fog. I also had an issue with sweating. My levels are much flatter and despite a long week and a night out at an indian last night, my levels are perfect! I did not change to animal insulin because I wanted better control as my HbA1c is around 6.5% which is not bad for a type 1. I was just feeling so unwell all of the time. I should mention that like when I used Afrezza, I now have better feeling in my hands and toes which I was not expecting. The only drawback is the slow onset of porcine neutral but the insulin is definitely more physiologic. I feel pretty amazing. I inject and eat after 45 minutes. Unlike Humalog I don't have a rapid decline in levels within 15 minutes and feel as if I need to eat to save my life! It seems to be more forgiving too, where one unit too much or too little is not catastrophic!

To continue this journey I am ditching Tresiba tonight and moving to Bovine Isophane. I have been advised that bovine isophane is flatter than porcine isophane. I am injecting 36 units of Tresiba and I have also been told that I need to split this one injection AM and one PM with a greater dose AM. My doc is unsure what to do so I will inject 16 units tonight at 11pm and 20 units at 8am tomorrow and see how I go. Although I feel better atm I would like to ditch the Tresiba and see how I get on.

I would suggest Colin that you try Hypurin Porcine Neutral. I have also been told that it can take up to 3 months for a difference to be noticed. I noticed a huge difference within 24 hours! Tresiba for me was also much much better than Lantus, chalk and cheese really. Tresiba is available on the NHS. Good luck mate and keep us informed.

 

[colin@henhouse]

Hi Brendan. Thanks for that comprehensive info. I have emailed my specialist at the hospital, but as yet have had no reply, re changing from novorapid to porcine neutral.(He is a junior doctor so it sometimes takes a second email to solicit a reply) My GP is not prepared to help. Interesting that you felt better after 24hrs. That is what I would hope for and expect. The good news is my bad back has all but gone following acupuncture (no effect) followed by a serious week long tummy bug. (Could it be I had a kidney infection ??). My sugar levels have suffered somewhat during the illness but are starting to recover. Just a thought, I was on 97 units daily lantus, and am now on 56 am 52 pm porcine, the evening injection which I take with my evening meal as way back when I was on insulatard, I was constantly having hypo's in the night and the diabetic nurse suggested bringing it forward from bedtime to meal time, which seemed to work much better, so have continued with that regime with good results. Hoping Your change to porcine works for you. I am a bit despondent with my results but hope that a eventual change from novarapid will be the magic ingredient. Cheers Colin

 

[brendan101]

Thanks for the update Colin. Most GPs will not change your insulin and will refer you to your endocrinologist. Most endos won't believe that animal insulin is a good treatment for diabetics because they are heavily bought over by big pharma. There is a guideline by NICE that was updated in August 2015 that says:
"If a type one diabetic has a preference for an alternative mealtime insulin, this should be respected and the insulin prescribed."
Your doctor cannot refuse animal insulin if you have a strong enough argument that justifies why it is worth trying. I wrote down all my side effects etc and my endo put up no resistance. Hypurin is definitely available. I have lots of it in my fridge. The neutral is clear much like the rapid acting analogues and I have no irritation when injecting. You mentioned feeling tired all the time. I had the same. Also muscular pain in my legs for which I had codeine 16mg x 2 tabs whenever it was problematic. I also felt blood throbbing in my legs. Everyone is different. However the fact that you are on slightly more porcine compared to lantus is what I am experiencing too with the lantus equivalent (Hypurin Bovine Isophane twice daily). I was taking 36 units of Tresiba once daily previously and now I am taking slightly more isophane. I am taking mine at 6am and 6pm. I have heard that with Porcine Neutral, the mealtime insulin, I may find that I need slightly less of this compared to the Human analogues. I have not been on animal insulin long enough to say that this is the case yet but will keep you posted.

Diabetes is different for everyone and this is why it must be very frustrating to work in the field and advise patients. I am feeling much better on animal insulin compared with Human genetically engineered insulin. It's early days but I am hoping to be able to get my life back. There is tired and then there is this unnatural tiredness that incapacitates. I am going to the Independent Diabetes Trust annual conference on Saturday 15th October and I am looking forward to that. It's in Northampton.

 

[colin@henhouse]

Well its been a 12 month or so since I went onto porcine, and unfortunately I don't feel any better. I saw my diabetic specialist on Tues, and suggested that as I don't feel any better, and have 'complications', ie, the feeling of wanting to go to the toilet much of the time, yes ive had the camera etc (all clear) plus i have put on weight which I cant lose, I asked if I could go back onto Insulatard/novorapid. He said no, your blood sugars are better than they have ever been, give it another 3 months then phone my assistant ??. I also have been suffering the last 2 months with a condition which feels like shingles on the right of my chest. My gp, says I have torn a muscle ??? and it will go, but it is getting worse. The specialist looked in his little (big) book and said there are no reports of any of these symptoms with porcine. I do feel guilty as I pressured for a 12 month to go onto porcine. However in desperation I saw my gp yesterday and he has agreed to put me back onto 'insulatard/novo as a trial. I'm hoping that the 'shingles' feeling (there is no external marking) and the poo feeling are porcine related, as they have only manifested since being on it. My specialist had mentioned maybe experimenting with tresiba in the future, but having read up on it i'm not keen. Also my specialist said since allowing me to go onto porcine, he has put 5 others onto it and 4 of them are showing great improvements, so it can work, just not for everyone. I also understand there is a cost advantage. (Good). Will update in a few days, when I hopefully will have stabilized and hopefully lost weight and some of the pains. Incidentally, I have the greatest admiration for the NHS and my GP. and get very annoyed by the Knockers (Mr Corbyn and friends come to mind) we all know of people who have had a bad experience but thats the nature of illness. Its about time they were appreciated for the fabulous work they do. Cheers Colin Shurvell