Help please from people who use Porcine insulin...

[Heathenlass]

A couple of things spring to mind, @artemis are you vegetarian low carbing ? I can't remember if you said you were veggie ? As @robert72 pointed out, there are symptoms that match yours from low carbing, but usually they pass very soon after starting as the body adapts .

However, the symptom list also matches those that people have reported on Lantus and Levemir . More so with Lantus, but that's been around longer than Levemir, so there's been less time for people to report back. It's also been a problem for people to get the HCP's to take them seriously when they report such symptoms. I'm not saying that's what it is, just a possibility

I had all you describe and more, including crushing night time hypos on as little as 2 u of Lantus at night . Going back to an oldie but goodie insulin for basal, Insulatard, worked very well for me, but Tresiba may be good for you, if they prescribe it in your area, mine won't as they balk at the cost

The reason I asked about you being veggie is that you say that novo rapid seems to miss the peak. Whether you are veggie or not, a meal that contains slow release carbohydrate and/or fat can peak later, as much as three or fours hours after novo rapid misses the mark, first of all showing a dip in BG then high levels later. This is most marked if you are eating pulses and soya .

There is a middle road between porcine and bovine insulins, and the newer analogues such as novo rapid, and these are the earlier human insulins, Humulin being one. They have a different profile, needing to be taken about 30 minutes before eating, and peak slightly later than novo. Speaking for myself, they work much better with LCHF or even LC medium fat . There are also others you could try that could hit the peak. It's unlikely that you would be prescribed porcine, sadly the reaction is much the same as if you ask for a course of leeches

I would suggest that if you are able to print out your BG levels from your meter as a graph as well as the stats, it's very useful to take those along to your appointment, as it's easier to match them with different insulins profiles.

It's easy to feel as if you are going nuts when you have symptoms that apparently you shouldn't have I heard the lot - " it's insulin, it doesn't have side effects "' ? " Lantus doesn't give you night time hypos " Oh really ? LOL ! It does seem to me that some consultants and DSN's have their own pet preferences ( hint - watch out for coffee mugs and toasters with a pharma logo knocking about the office ) All joking aside, it is worth asking that you try different ones and give each a fair crack of the whip to find one that suits you. It makes all the difference

Signy

 

[CarbsRok]

@CarbsRok - I think I see you use Porcine...?

I use bovine insulin.
It has the same action time as porcine though. People tend to run the animal insulin's down due to not having the test strips and or the understanding on how to use it properly in times gone by.

You can use animal insulin on an MDI bases just remember the neutral has quite a long duration.... at least 6 hours so mind the stacking of your insulin. Bolus at least 30 min before you eat as well. I've used bovine insulin for almost 50 years and am so far complication free. Have a collection of other autoimmune conditions but no complications lol.

 

[-Artemis-]

Hi Artemis,

I'm not type 1 or insulin dependent, but I do have decades of experience of reactive hypoglycaemia, where my own body produced too much insulin.

And that list



Including weight gain, fitted me perfectly.

It is only now that I am type 2 and have insufficient insulin, that I feel half way human.

.... interesting @Brunneria... do you mean that you think I may be having too much insulin...? Wouldn't I hypo if that was the case...?

 

[-Artemis-]

A couple of things spring to mind, @artemis are you vegetarian low carbing ? I can't remember if you said you were veggie ? As @robert72 pointed out, there are symptoms that match yours from low carbing, but usually they pass very soon after starting as the body adapts .

However, the symptom list also matches those that people have reported on Lantus and Levemir . More so with Lantus, but that's been around longer than Levemir, so there's been less time for people to report back. It's also been a problem for people to get the HCP's to take them seriously when they report such symptoms. I'm not saying that's what it is, just a possibility

I had all you describe and more, including crushing night time hypos on as little as 2 u of Lantus at night . Going back to an oldie but goodie insulin for basal, Insulatard, worked very well for me, but Tresiba may be good for you, if they prescribe it in your area, mine won't as they balk at the cost

The reason I asked about you being veggie is that you say that novo rapid seems to miss the peak. Whether you are veggie or not, a meal that contains slow release carbohydrate and/or fat can peak later, as much as three or fours hours after novo rapid misses the mark, first of all showing a dip in BG then high levels later. This is most marked if you are eating pulses and soya .

There is a middle road between porcine and bovine insulins, and the newer analogues such as novo rapid, and these are the earlier human insulins, Humulin being one. They have a different profile, needing to be taken about 30 minutes before eating, and peak slightly later than novo. Speaking for myself, they work much better with LCHF or even LC medium fat . There are also others you could try that could hit the peak. It's unlikely that you would be prescribed porcine, sadly the reaction is much the same as if you ask for a course of leeches

I would suggest that if you are able to print out your BG levels from your meter as a graph as well as the stats, it's very useful to take those along to your appointment, as it's easier to match them with different insulins profiles.

It's easy to feel as if you are going nuts when you have symptoms that apparently you shouldn't have I heard the lot - " it's insulin, it doesn't have side effects "' ? " Lantus doesn't give you night time hypos " Oh really ? LOL ! It does seem to me that some consultants and DSN's have their own pet preferences ( hint - watch out for coffee mugs and toasters with a pharma logo knocking about the office ) All joking aside, it is worth asking that you try different ones and give each a fair crack of the whip to find one that suits you. It makes all the difference

Signy

Thanks Signy - brill as ever

- I am veggie - well, I eat fish... and just re-introduced eggs - but otherwise, yes. So what you say about the slow release carbs and higher fat makes sense.... it's also why taking porcine or bovine would be a bit of a "challenge" for me :-/

- is Insulatard a "human" insulin...? I had a conversation with Jenny at the IDDT this morning and she said that the likelihood (though not at all guaranteed) is that if I'm reacting so quickly and strongly to the analogue, then I will likely not do great on the human ones either - and the analogues are derived from the human ones.... any thoughts?

I'm so desperate to feel better that I may just beg my DSN to switch me to animal tomorrow - and see what happens...

 

[-Artemis-]

... An overall update: I have been up reading since about 7am - and that, in combination with the things I've read last night - make me very much feel like porcine is worth a shot - no pun intended.

You've probably seen this, being the very clever people you are - but just in case you've not, I found it this morning: http://www.theguardian.com/uk/1999/mar/09/1

- and I've also spoken with Jenny at IDDT - who's daughter had exactly the same reactions I seem to be having, which all went once she switched to porcine... I also read this: http://www.iddt.org/wp-content/uploads/2009/10/30-year-report-oct-2007.pdf

.... I'm not remotely trying to herald porcine as the holy grail - I'm actually pretty terrified it might not help - as I don't know if I can cope with a potential lifetime of feeling as awful as I do now - particularly as it only seems to be getting worse... anyway - I'm waffling - but just want to say thanks, as always, for your great advice - and I'm seeing my D(S?)N tomorrow so will discuss with her about switching and see where that gets me...

 

[CarbsRok]

The normal reaction from dsn's and consultants is no, it's not made any more. Translated this means we haven't used it know nothing about it and have no intention of finding out about it. So be warned.

 

[noblehead]

Hmmm... I'm not sure? Its a Diabetic Nurse at my local hospital in the Diabetes centre there... it's where I also see my Endo - so possibly is a DSN...? I guess I can just ask, and if she says no, ask to be referred for an appointment with my Endo...

Yes they'll be a DSN.

It's good that you've spoken with the IDDT that Rob mentioned, I notice the article you posted from the Guardian is quite an old article (1999) and a lot of those concerns were misplaced, although as we now know some people do have a bad reaction to analogues but there's many more that don't.

As a process of elimination you could try switching to animal insulins or try human insulin first to see if this resolves your issues, I do think in the mean-time you should see your Dr and have some blood checks to rule out anything else (although I would expect that your Endo will suggest this before moving you over to alternative insulins).

Do keep us updated on your progress.

 

[Brunneria]

.... interesting @Brunneria... do you mean that you think I may be having too much insulin...? Wouldn't I hypo if that was the case...?

Ok, so I'm speculating with far too little medical knowledge to do anything BUT speculate:

Insulin is the hormone that tucks glucose away into fat cells, and we all know about insulin resistance.

But there are other hormones that act as insulin antagonists which stop insulin from dropping a normal person into a hypo.

I speculate that, for years, my hormones were screwed up (I have other hormone stuff going on too), and I think it went far beyond my insulin production. I think my whole cocktail of insulin antagonists are/were screwed up too.

But I have absolutely no way of testing this theory. But I suspect it affects my dawn phenomenon (growth hormone) and my hair trigger stress/cortisol/adrenalin blood glucose reactions.

The thing that seems to work best is low carbing, because it seems to reduce both my insulin production, and therefore the other hormones too...

I repeat, this is pure speculation!

And of course I don't know if any of it has any relevance to you...

 

[-Artemis-]

Thanks @CarbsRok - my team know I'm a bit "persistent" ;-) so hopefully they'll be open to helping me / shutting me up...

Great advice as always @noblehead I'll defo keep you posted...

And that's interesting @Brunneria - especially the mention of cortisol and adrenal in the link you sent... I have also long suspected these, particularly, are screwy for me (living in a war as as child probably didn't massively help) - so it would/could fit that the insulin has triggered an even bigger "what on earth are you doing" response.... Even if the hormonal aspect is partially to play - which I imagine is a strong possibility - I"m guessing that being on the most well tolerated insulin (for me) that I can be, surely has to help calm down everything else too....? Also speculation, of course... but I'm grateful for all angles nonetheless

 

[Heathenlass]

The normal reaction from dsn's and consultants is no, it's not made any more. Translated this means we haven't used it know nothing about it and have no intention of finding out about it. So be warned.

I've got to agree with that Of course it's still available but as @CarbsRok said, they will bluff to get out of learning something new or refreshing their knowledge It's so much easier to have people on a limited range of insulin, less info to take on board

In the end @artemis, we become the experts on our OWN diabetes, and how our bodies feel and react to certain things. As it's comparatively recently you have been put on insulin, they may well be reluctant to change your insulin at this stage. But, and it's a big but, if there is a chance that one or the other is making you feel unwell, then change should be considered. You will need to be quietly assertive until you feel happy with what is being offered, which may involve a compromise of some kind. It is possible to be the best you can be in regard to insulins and methods of delivery, but you may have to hack through a few thickets to achieve that


Signy

 

[-Artemis-]

Ah.... thanks @Heathenlass .... I think that's my biggest worry - feeling as I've been feeling lately, it would be impossible to be the better me; the me I want to be.... I kept thinking it was a settling in period - but everything is getting worse, not better.

Earlier this week I was wincing trying to lean over and touch my toes, the pain along my entire back and hips was so sore - it was like I'm 87 - and that's doing the 87 year olds a disservice! That's a major sign something isn't right for me... well, that and the 10 pound weight gain in two months... well, those and the unrelated to anything / uncontrollable crying... :-/

And this is from someone who walks 4 miles a day, swims three times a week, and practices yoga...
My point is - something definitely not right. Whether it's the insulins or something else, I don't know - but these things started when I started insulin... though I do accept they could have "aggravated" some other imbalance. The point is, I *have* to try something.... so, wish me luck...!

 

[phoenix]

I'm almost reluctant to add this but you describe how I felt before I was diagnosed with hypothyroid (my reluctance is that I've heard thyroid problems being blamed as the cause for every possible problem ) There are though I'm sure other possibilities including the insulin you are using.

 

[-Artemis-]

@pheonix, did you get diagnosed with that before or after starting insulin...? I'm defo going to ask if I can have various hormones checked - I think the most likely for me being thyroid, estrogen etc...? I do suspect a reaction to one has knocked out the other... I'm just very much hoping I can get the balance back...


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[phoenix]

I'd been using insulin for 7 years when I was diagnosed with hypothyroid (autoimmune); probably I'd had symptoms for 6 months to a year but never mentioned them to the doctor.
(and since an ultrasound showed it to be quite atrophied I suspect that the process had been going on for some time)

 

[ElyDave]

It's a long time since I used it, but here goes. It's slow acting so you have to take it 30 mins before you eat, it's action is such that it peaks much later than analogues and this is why a small snack is needed between meals. I'm not sure about it's suitability for someone on a LCHF diet, perhaps the likes of CarbsRok might help out here or the IDDT (that Rob mentioned earlier) may know.

I can't think of any other issues with it except that you had to shake the insulin vial before injecting, I used glass syringes back then with big needles and they caused all sorts of problems with injection sites, with the modern pens and disposable syringes I'm sure it would be much better to inject now than back then.

I don't have the same issues with Novo, what I do is inject 10-20 mins before I eat (depending on the food) to match the spike, Gary Scheiner (Think like a Pancreas book) goes into this in great detail, suggesting people can inject up to 40 mins before depending on the food eaten, insulins like Novo & Apidra are sold as rapid-acting insulins and you can take them just before or after eating, however in most cases nothing could be further from the truth.

Do see a specialist Artemis and don't put up with this any longer than you need to.

I'm reading this with interest, as a general knowledge widening thing.

One of the problems i can have is that I don't always know what I'm eating until it's there in front of me, particularly at restaurants, cafes etc. That's when I can find the NR missing the spikes, what do you tend to do in those circumstances?

 

[noblehead]

I'm reading this with interest, as a general knowledge widening thing.

One of the problems i can have is that I don't always know what I'm eating until it's there in front of me, particularly at restaurants, cafes etc. That's when I can find the NR missing the spikes, what do you tend to do in those circumstances?

I just inject when the food arrives when eating out, as I don't do this that often I don't worry about the occasional spike, plus if it's a Chinese, Italian or Indian Restaurant I'm dining in the fat content of the meal delays the spike anyway. Generally if it's a bar meal I usually know the portion size as I tend to stick with the same pubs where the food is nice, so in these cases I just have eat my starter then inject knowing that the main will arrive in the next 10-20 mins, providing it's not too busy in which case I'll wait until the food arrives.

You could if you wish bolus some insulin upfront and then count the carbs and give the rest before or after eating, this will in some way stop your bg spiking too high.

 

[-Artemis-]

I'm reading this with interest, as a general knowledge widening thing.

One of the problems i can have is that I don't always know what I'm eating until it's there in front of me, particularly at restaurants, cafes etc. That's when I can find the NR missing the spikes, what do you tend to do in those circumstances?

.... do you mean you're reading about the use of porcine insulin with interest @ElyDave - or about how to manage insulin timings in general...?

@noblehead I forgot to say, the lady at the IDDT says her daughter (t1) doesn't really eat carbs.... it was in conversation and I was too absorbed in other stuff to ask her to expand - but she seems to not be on a "typical" high carb western diet, and does well on porcine.... I will ask her more - sure I'm bound to speak to her again ;-)

 

[-Artemis-]

A general update - saw the diabetic nurse at the (hospital) clinic today.... first up, she's non-prescribing - they all are apparently (?) - anyway, explained all - and she wasn't remotely surprised and didn't even vaguely suggest a) that porcine insulin wasn't available or b) what I was saying sounded odd.... In fact she said they've several patients who were on porcine, switched to the all-singing-and-dancing new insulins, felt terrible, and switched back.... and are on them to this day.

So, she wasn't all that "surprised" by what I was saying - which was a relief - even if she's not able to actually prescribe it!

Anyway - my Endo lectures on a Wednesday - so wasn't there - so she's going to track him down tomorrow and try and get me a prescription by lunchtime.... if she can't, I'm actually going away for a long weekend, so she'll arrange for me to have an appointment with him next week.... So, I'm not "there yet" - but it went better than I was bracing myself for...

In other news - I didn't mention it as I wanted to see what happened - but I've not used my levemir at all for almost 48hrs - and I cannot tell you how much better I feel already - I am somewhat gobsmacked by the dramatic change for the better so I don't want to jinx it - but it's convincing me even more that something was really not suiting me in the analogues. One final note - I'm not advocating stopping a background *AT ALL* - but I'm still in the honeymoon phase, and am being extra low carb - so I can just about get away with it. Obviously I would never suggest someone else do this - I just can't get over how different I feel...

 

[robert72]

Good news that your DSN is receptive to you using porcine, even if it will take a few days to get hold of it. Also interesting that stopping Levemir is relieving your symptoms. Are you still taking the the Novo?

 

[-Artemis-]

Thank you @robert72

I won't hold a sigh of relief till I've actually got it though; I wouldn't be surprised if I still may have to battle a bit with my endo - but at least I'm on the right tracks...!

Its really quite remarkable the difference since stopping the Levemir - I was close to looking for the nearest bridge on Monday :-/
- And re Novo, I am, yes - but in super small doses; partially cos I'm exercising lots to counteract the lack of basal, partially cos I'm honeymooning, and partially cos I've cut the carbs even further due to no basal - plus, apparently, is the long acting ones that people react the most to...


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