Side effects of analogue insulins?

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Catherine-louise

Well-Known Member
Relationship to Diabetes
Type 1
Hello,
I don't post often but am a long time browser of this forum.

I'm a type 1 diabetic who has currently had an insulin pump for approx the last six years - pumping using NovoRapid for both background basal rates and also boluses.

I remember when I first went on an insulin pump, being in university and I remember thinking "gosh, my mind feels so foggy..." But just putting it down to the stress of studying at Uni.

Since then however the brain fog has only amplified along with a myriad of other symptoms. I am pretty much exhausted all of the time, despite getting a minimum of 8 hours sleep a night (the fatigue gets worse after meals). I temporarily go light headed and lose vision whenever I stand (my heart has been checked and I've been given the all clear). Heart palpitations/tachycardia. And I cannot go for more than an hour or so without eating. I can eat a big bowl of porridge with a chopped banana and bolus, but feel weak and shaky within an hour or so (despite my glucose levels being far from low, it almost feels like a hypo).

I have had blood test after blood test which has tested for vitamin deficiency, iron levels, thyroid and all have come back normal. I even cut out all wheat, gluten and dairy, increased my fluid intake, increased my salt intake (as advised by my GP) but still these symptoms seem to persist.

I am now at a stage where I am wondering if it is NovoRapid that maybe causing these symptoms. I am interested in maybe trying out a switch to a porcine or bovine (animal) insulin rather than an analogue insulin. Have any of you experienced similar problems with analogue insulins? I am really trying not to get my hopes up about an insulin switch solving all of my symptoms but even a slight relief from some of these debilitating symptoms would be wonderful.

Apologies for such a negative post. I look forward to hearing from some of you.
Cate
 
Hi Cate, that sounds awful. Before you went on the pump what kind of insulin did you use? Might be worth trying a different insulin if the docs have ruled out everything else.
Hopefully someone who knows something more will be along soon...
 
Thankyou for such a speedy response

I was diagnosed in 2002 and was put on Humamix, and then in 2003 I was switched to Humalog. I don't remember having any side effects, despite these also being analogue insulins.

I was then switched to a combo of Lantus/Glargine background and NovoRapid with mealtimes (these were injections).

And then I was placed on an insulin pump (which I adore and am very grateful for). So now I just use NovoRapid background and bolus (in the pump).

I seem to be ravenous all the time. I even wake in the small hours feeling like I need to eat, even though my blood is always usually above range. It's bizarre.
Cate
 
Have your cortisol levels been checked?
I use bovine neutral in my pump without a problem and many use porcine in pumps.
 
I'm not sure if my cortisol levels have been checked. Would that be in with the routine bloods that GPs/consultants usually do? It's definitely food for thought and something to mention at my next appointment so Thankyou.

I did have a 24 hour urine sample taken last year, that came back normal also.

That's really great to hear I could still use animal insulin in my pump. Do you mind me asking what made you choose an animal insulin or analogue? Had you previously been on an analogue type? Did you notice a big difference, or was there a big change in blood sugar levels? Was the transition okay? (Sorry for the twenty questions!)

Cate
 
Have your thyroid levels been checked?
 
Edit: the 24 hour urine sample was for to check for catacholomines (which was clear), and I've just checked and my cortisol levels have been tested a few months back. I haven't heard anything back so I assume they were normal.
I am so stumped.
-C
 
Thyroid has been checked numerous times. GP tells me this is also normal. Are standard NHS thyroid tests accurate? I asked my GP for a more in depth one but she tells me that the TSH test is the standard.
 
Catherine-louise said:
I'm not sure if my cortisol levels have been checked. Would that be in with the routine bloods that GPs/consultants usually do? It's definitely food for thought and something to mention at my next appointment so Thankyou.

I did have a 24 hour urine sample taken last year, that came back normal also.

That's really great to hear I could still use animal insulin in my pump. Do you mind me asking what made you choose an animal insulin or analogue? Had you previously been on an analogue type? Did you notice a big difference, or was there a big change in blood sugar levels? Was the transition okay? (Sorry for the twenty questions!)

Cate
Click to expand...
Hi Cate,
I tried synthetic insulin when it first came out back in the 1980's I have no hypo warning with it at all and refuse point blank to use it again. I've been on insulin for almost 52 year 🙂 My A1c is normally around 6.4% You just have to make sure you adjust your basal at least 2 hours before it's needed and bolus 30 mins before you eat.
 
You have to adjust your basal two hours before its needed?
So can you not set it to tick over automatically via the pump for example, I am automatically given 0.7 units of NovoRapid every hour? Does it not work like this with animal insulin?
-C
 
Pumper_Sue said:
Hi Cate,
I tried synthetic insulin when it first came out back in the 1980's I have no hypo warning with it at all and refuse point blank to use it again. I've been on insulin for almost 52 year 🙂 My A1c is normally around 6.4% You just have to make sure you adjust your basal at least 2 hours before it's needed and bolus 30 mins before you eat.
Click to expand...
Ps well done on such a great a1c!
 
Catherine-louise said:
You have to adjust your basal two hours before its needed?
So can you not set it to tick over automatically via the pump for example, I am automatically given 0.7 units of NovoRapid every hour? Does it not work like this with animal insulin?
-C
Click to expand...
Well if you have a basal pattern that is the same over a 24 hour period then yes fine but mine isn't flat.
 
I'm gobsmacked also that your insulin profile is flat - I dunno if I've ever heard of anyone at all on a pump where that's the case?

When was your last basal testing done?
 
Well, my basals were all over the place last year, I had lots of different basals. So when I told my diabetic nurse how I was feeling, she suggested starting me back on a flat basal rate and seeing how I went from there. Making adjustments accordingly.
Cate
 
Catherine-louise said:
Thyroid has been checked numerous times. GP tells me this is also normal. Are standard NHS thyroid tests accurate? I asked my GP for a more in depth one but she tells me that the TSH test is the standard.
Click to expand...
What a load of rubbish. Firstly you should get a opy of your result. Normal just means you are within the range, optimal means you are a better place in the range for you. Are you optimall? There are other tests which should be done. Antibodies, to find out if you have Hashimoto's. This is an auto immune condition the same as type 1 diabetes and if you have one auto immune condition you can well have another. The other tests are free T4 and free T3. They rarely do free T3 but they should. However a TSH is worthless without the Free T4. This is going to be long sorry but my experience shows why just doing a TSH and it being normal does not mean you do not have hypothyroidism. My TSH was right in the middle of the range and I was told I was normal and all my aches and pains, tiredness, IBS symptoms and many more were because I was depressed. I went and had a private test done and it was found that my T4 was the lowest number in the range and the free T3 was below range. T3 is the active hormone. T4 is a storage hormone that converts to T3. Your vitamin D and B12 (I think there are others too) should also be checked as if you are lacking in them it can stop the conversion.

Another experience which is really frightening. The endocrinologist wanted a thyroid blood test done and my doctor did also. I had two forms. I decided that it would be better to do it all at once. So they took two lots of blood. When I went to see the endocrinologist he said I need more medication. I asked for a printout of my results (as I always do) and the nurse printed them out for me. She asked if I also wanted a copy of the results for the doctor. I said yes. Looked at one and presumed the other was the same. When I went to see doctor he could not understand why the consultant wanted to increase the medication when according to the tests I was over medicated and needed to reduce it. This puzzled me so when I got home I compared the two results. It was dated the same day, same blood, and they should have had the same results but no, one said I was very high the other very low. More scary is the fact that I told the consultant and my GP about this. As I had not heard anything (whether I am having more or less) I phoned the lab and spoke to the HEAD lab technicial. It took me 10 minutes for her to understand what I was talking about. She kept telling me they must have been done on two different machines. I said yes, I understand that, but both machines, even if different numbers should both show high or both show low. She finally got it, although didn't give any indication that she was concerned. She also had not heard from the consultant or the doctor about this.
She asked if I would like to be teststed again but did not see the sarcasm when I asked on which machine will it be tested on. So neither consultant or doctor cared about the discrepancy, especially when it would affect my medication. The lab technician gave a shoulder shrug over the phone (that is what she sounded like). So how many people have been misdiagnosed, or given wrong mediction beforehand and how many after. Maybe it is still happening. I do not trust the TSH anyway. It is NOT a thyroid hormone test, TSH is a pituitary hormone.
 
Oh Gosh, this scares me. It really does. And a quick Google search reveals so many similar stories.

I am beginning to have so little faith in our NHS Doctors. I didn't want to mention to my GP that I had read so many similar stories on the net about people being misdiagnosed. Silly I know, so I told her a 'friend' had been misdiagnosed because of the THS test and to ask for a more in depth thyroid panel to be done and she just shrugged and said 'no, there are no other thyroid tests, the TSH is the standard'. And I got the impression she was a little frustrated at me questioning this so I refrained from pursuing it any further.

How can I get a more in depth test done? I have emailed my nurse and ask her to ask my consultant if I can have a more in depth thyroid screen done, but haven't heard anything back. Are these tests only available privately and if so how much do they cost and where can I get this test done?

I am simply despairing at these symptoms now. After six years, I just want my life back. Thankyou for all of your suggestions on this thread, it is much appreciated. I don't even know where to begin to try and 'fix' whatever it is that seems to be broken. I'm clueless.
 
I've had a look at the last two blood tests I've had done. TSH levels were 1.2 and then a few months later 1.5. Can anyone help me interpret these or are they pretty much useless pieces of info without the other lab results from T3, T4 etc?
 
If you join www.tpauk.com or thyroid.uk you will be able to find out from them the place where to get a private blood test. They both have discounts on them. I am not sure whether you have to be a paid up member of thyroid.uk to get that information. tpauk information is free. Do NOT go to British Thyroid Association/Foundation. They are the ones encouraging the doctors not to do any more tests other than the TSH and if you do not get on with levothyroxine then it is all in your mind. Just as doctors have been told that human insulin (synthetic) is just as good as animal insulin and they do not even offer animal insulin and completely discourage it. I remember years ago Diabetes UK (I think it was called the Diabetes Society then) tried to fight to keep animal insulin available. The succeeded in getting people who were already using it to be able to carry on using it, but any newly diagnosed diabetic was put on human insulin regardless. This is a bit like the thyroid situation. Have you also had your B12 tested as that can cause similar symptoms as well. However there again the rule is an injection every three months whether you need them closer together or not. So there seems to be a pattern here. They are trying to save money on people with chronic conditions, not by being up front and honest about it, but trying to convince everyone that there is no need for extra or difference (more expensive) medication, and tell patients who complain of symptoms that it is all in their head and will offer anti depressants out like sweeties. I think the pharmaceutical companies have a hand in this too. By keeping patients sick they are keeping customers. They do not want to cure as that loses a customer, same as they want to keep them alive - but just. If they keep someone who has many symptoms without the correct medication then the doctor prescribes so many more tablets to counter act each and every symptom. So instead of one pill which might cost £10 you get 12 pills for the symptoms costing only £1 each. Doctors think they are saving money because they are prescribing such cheap medicine and not prescribing the dear one. One word of advice, keep copies of all your test results.

Yes the tests are a bit expensive and it is better to get the full test plus B12 whilst you have the blood because it also costs to get it drawn at a private hospital. NHS wont do it for a private doctor. Also you have to give a practitioners name on the forms, both tpauk.com and thyroid.uk allow you to put their name as your practitioner, but the results go back to them and they have to forward them on to you. Just like this forum they are knowledgeable about their own subject (thyroid). Although you can be a free member of Thyroid.uk they make a charge to be a full member and I do not know whether you have to be a full member to get the discount on tests. tpauk.com do not charge anything at all to be a member and all members get the same discounts etc.

I too am wary of the medical profession. Sorry it is a long one again.
 
Wow, that's really helpful. Thankyou. So it definitely isn't available on the NHS? I'm unsure whether I would be able to afford private testing at the moment.
Cate
 
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