Side effects of analogue insulins?

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Catherine-louise said:
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?
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First of all you should also get the reference range with them because say 2 in a range of 1 - 500 would be rather low but 2 in the range of 1 - 4 is not too bad. I think it depends a lot on your symptoms. People usually feel better when the figure is about 1 and if your T4 is in the upper quarter in its range then it could be something else, but without the Free (not total) T4 and preferable Free T3 as well you are not getting the full picture. They will sometimes do antibodies if they are asked but a lot of doctors feel there is no point because they treat both the same anyway.

With TSH the higher it is the more hypothyroid you are, with T4 the higher it is the less hypo you are (same with T3) Ideally both T4 and T3 should be in the upper quarter of their range and your TSH 1 or below within range. Although the top of the range is about 5 or 5.5 or even 6 on some machines, a lot of doctors will leave it to 10 before they will treat on first diagnosis.
 
Catherine-louise said:
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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Well yes you can get them tested on NHS but mostly it is when you have a problem and an endocrinologist asks for them. They do not do it for doctors. However there is a bit of a post code lottery here. You will find they are more likely to do it if you live in parts of Yorkshire and parts of the Lake District. Actually Thyroid UK and tpauk.com have a list of doctors (private AND NHS) who are more knowledgeable and have been known to take T3 into account and even prescribed it. Where I live in Essex there is no chance of them testing T3. I have been taking T3 now for 16 years, first from a private doctor and then I buy it myself from America.

After 12 years of doctors and consultants raging at me that I must stop, but never doing a T3 test, they finally did a T3 test and found I did need it and I had it prescribed. Just recently the pharmaceutical company has put the pills up from about £30 a packet to hundreds of pounds a packet. As the NHS cannot afford this they are now stopping prescribing it. But how can you tell a patient who has been made well on it (like I have) that they are going to take it away and make them ill again. Not very ethical. So they come up with every reason they can think of why you do not need it and one of the ways is that they do not do the test.

If they do not do the test there is no way of knowing whether that is what you need or not. But then when I showed me GP the results of the private test that my T3 was below range, she said that they do not take any notice of T3. Well that is like telling a diabetic that they take no notice of insulin. I had some terrible symptoms and I think I was on the border of myxodema coma and was slowly dying. So I have been buying my own medicines for 16 years so far. I have to buy it from abroad as it a prescription medicine and they wont give me a prescription, unless I get a private prescription, but as I can get it without the prescription, and it is dear enough anyway than pay extra to a private doctor, I just order it myself. Fortunately it is cheaper from abroad than the NHS are being charged from the UK company. Although after 12 years it was prescribed it was nowhere near enough so I still had to supplement it. But it has kept me well with all the major symptoms gone and I would rather give up a holiday to be well all year round and anyway I could not enjoy a holiday whilst I had the symptoms.

I was recently referred back to endocrinologist because GP wants him to say whether she can carry on prescribing T3 but he is one that does not want me to have it. He tells my doctor I am over medicated because TSH is very low, but the T4 is still in the lower half of the range and he has not done a T3. The T4 should indicate I am not over medicated and I have no hyper symptoms, but they want to stop prescribing the T3 and they have to justify it somehow. If they say I am over medicated so will stop the T3 I shall ask why not stop the levothyroxine instead and see what they say to that.

.
 
Oh wow, that is shocking. So awful. I don't even know where to begin with getting this checked out then. I really need to find a Doctor who is on side (needle in a haystack springs to mind).

(According to my blood results the normal TSH range is between 0.30-6.00). So would that suggest 1.2-1.5 as being at the lower end of the scale?

Thankyou for your help. You're obviously very informed on this.
 
I wonder if my diabetes consultant might be inclined to check these levels? I think she also specialises endocrinology. I am really hoping I can get her on side.
 
Catherine-louise said:
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?
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The first thing to say is your TSH measurements are perfectly normal. In answer to your second question, No it is not a useless piece of information, and you have no worries about your thyroid, which has absolutely nothing to do with your originally reported symptoms. How this discussion became obsessed with the thyroid I have no idea, but you can forget all about it. Please don't spend any money on private tests, you would be wasting your money.

In answer to your perfectly reasonable question right at the start of this thread, your symptoms started as soon as you went on the pump. So before you go delving into the depths of body biochemistry, any reasonable person would associate your symptoms with that change. Analogue insulins are all slightly different. It seems likely that you are reacting to that insulin because your symptoms seem to be worse after eating, that is, after a bolus. So if your symptoms worsen after a bolus, it is odds on that it is the insulin causing the problems, and a change of insulin, possibly to an animal insulin, might make all your symptoms disappear. Discuss this with your diabetes nurse or GP. Don't worry about having any other condition that doctors can't find, it strikes me as being blindingly obvious that should be the first thing to do, so please sort this out with your doctor, and let us know how you get on.

All the best
 
I'm just up out of bed correcting an unexpected hypo:confused:

Sorry if I sounded a little stern, Cate, but I thought you might be getting worried about stuff unnecessarily. If your symptoms persist after the change, just shoot me😉🙄
 
No it makes absolute sense. I do find myself getting overwhelmed and mentally going down all sorts of avenues; thyroid, food sensitivities, vitamin deficiencies etc, the list is endless!

A trial insulin switch would absolutely make sense as the first place to begin.

Thankyou
-C
 
Catherine-louise said:
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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Get the list of doctors from tpauk.com and see if any are near you on the NHS, or within the distance you are prepared to travel. You cannot be referred to that particular doctor but to the hospital but there are ways of making sure you do see that doctor, although it might take a longer time. The forum members will tell you how to do it.
 
Of course Mike is right (trust a man to bring logic into it). First things first.
 
Catherine-louise said:
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
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I don't have any answers. But i am following this thread with interest. It could have almost been me writing the same thing you did. I feel exactly like what you have described. I'm also pumping with novo rapid and have been on a pump for six years. As i said i cant really help, but i sympathise massively with you. Hope we can both find some answers xx
 
Catherine-louise said:
Will keep you informed. I am going to telephone my nurse tomorrow.
Cate
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You will be told it isn't available or it's going to be discontinued and or it doesn't work in pumps 🙂
 
Yes, that is the standard line, but Wockhardt UK will supply it, and are apparently committed to do so for the foreseeable future. And you could stick any insulin into a pump, as you know Sue.🙂
 
....... or - you could just swap it to Humalog or Apidra both of which are freely available on the NHS and would cause no major problems getting them and of course every one has a different recipe and totally different ingredients so if you don't react well to one it doesn't necessarily mean you'll react badly to them all.

After all - after being on Porcine insulin for 15 years it stopped working on me! They used to just swap you to Bovine or vice versa cos it was reasonably common for it to happen apparently, but anyway they'd invented the new ones by then so they swapped me straight over. I personally (or rather my own body doesn't, I personally am quite willing LOL) don't get on at ALL well with any Humulin products or Lantus - and look at how many thousands of folk do perfectly OK with either !

I'm just thinking - we all know very well if you do actually need Animal insulin - you definitely do have to jump through hoops - so before doing it, it's probably fairer to your own body/brain and everyone else involved in your care to show them that you definitely DO ?
 
trophywench said:
....... or - you could just swap it to Humalog or Apidra both of which are freely available on the NHS and would cause no major problems getting them and of course every one has a different recipe and totally different ingredients so if you don't react well to one it doesn't necessarily mean you'll react badly to them all.

After all - after being on Porcine insulin for 15 years it stopped working on me! They used to just swap you to Bovine or vice versa cos it was reasonably common for it to happen apparently, but anyway they'd invented the new ones by then so they swapped me straight over. I personally (or rather my own body doesn't, I personally am quite willing LOL) don't get on at ALL well with any Humulin products or Lantus - and look at how many thousands of folk do perfectly OK with either !

I'm just thinking - we all know very well if you do actually need Animal insulin - you definitely do have to jump through hoops - so before doing it, it's probably fairer to your own body/brain and everyone else involved in your care to show them that you definitely DO ?
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You do have a point. And I don't recall having many symptoms when I was first diagnosed and was on Humalog. Although it was an awful long time ago.

I am just so desperate to get my life back that I am almost afraid to try another analogue insulin for fear of wasting anymore time. It has been six years since I have felt well or had some form of life without these symptoms.

Do I take the risk and go for another analogue or stick to wanting to try porcine?

I'd love to hear from others who have successfully tried porcine insulin and noticed an improvement in their general wellbeing?
Cate
 
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