Does anyone else hate this? <clickbait>

I always ask for a paper copy to be mailed to me for this very reason. Plus I get labs done for various doctors and I want to be able to compare.

I agree this is annoying because what is considered "normal" for one person might not be normal for another. You start to know your body and understand which levels signify trouble. (example: my ferritin levels dropping always mean extreme tiredness about to hit...)

In the US, I see all my lab results online. Unfortunately, our HIPAA law prevent every hospital from using the same system so sometimes I can't see lab results depending on which hospital I use. It completely defeats the purpose of having an ongoing trail of how your results change over time. UC people know that we have to constantly look for patterns to control this disease.

The good news is that my nurse is going to send me a paper copy of the results. The bad news is that they didn't do ferritin or B12. Urrrghhhh -_-

If Gary wants a legitimate criticism of the NHS, then this is one: it's still in the Dark Ages about giving out test results. My GI personally is fantastic on that front: he'll print out copies of tests without my even having to ask him. But he'll only do that while I'm in his office. If I go to the hospital to get blood tests, I will never, ever get the results back unless I chase them up. That gets boring, especially when the IBD nurse is away on leave, etc. (I once asked my stoma nurse for blood test results and she told me she wasn't allowed to give them out.)

iPoop - I agree, online is by far the easiest way of checking results. Some of you seem to use 3rd-party services. As far as I know, the only one I can use is Patients Know Best and it's not even fully functional.

I always get a copy of lab results to share with whatever doctor didn't order it. They appreciate seeing it because they much rather discuss numbers than how I "feel", they want evidence.

malaika said...
That really sucks NCOT, St Marks and my GP surgery always give me results promptly whenever I ask for them.

St Marks have changed since my time there then! Literally never got one result out of them. To be fair I didn't ask, which is something which I certainly would do now.

Bit of a long shot, but I don't suppose your GP surgery is in Enfield Road is it? If so, that was my one.

I saw one IBD nurse, but I'd be surprised if she was still there - barely remember her to be honest. I can't say I've had great experiences with IBD nurses: most have been nice, but just utterly clueless whenever I asked them anything. I remember asking my IBD nurse at St Marks why my diarrhoea never went away - this must have been 2003 or 4, maybe even 5. Everything I had read online had seemed to indicate that there were periods of remissions and flare-ups. I even got speaking online to an Australian who was an ex-IBD nurse and she told me that in her experience it wasn't normal, and that she thought something else was going on. Anyway, I expressed my worries to this IBD nurse at St. Mark's and she just gave me the complete fob off. I wasn't confident enough to pursue it; I wish I had done, because even back then I knew something was wrong.

They didn't even make up for their cluelessness by particularly helpful. I can't think of one instance where an IBD nurse really helped me out (unless you count the latest one sending me blood test results).

PS: I'm so sorry. I went off on such a rant, I missed the rest of your post! >_>. Ah okay, it was in Nottingham: never been there. It's great that it was run so well; my newest GP surgery is massive but sadly is clearly not a well-oiled machine. I'm even thinking of leaving it if I can muster up the energy to switch surgeries, but I suspect where I am none of the GP surgeries are good: it seems to be a bit of a black hole for physical and mental health care.

PPS: Only a few hospitals are doing the Patients Know Best thing at the moment. Not having much luck finding out what hospitals they are, but if it ever takes off, I imagine it'll eventually be rolled out to all hospital. (Agree on the patronising-sounding name, btw.)

Post Edited (NiceCupOfTea) : 6/22/2015 11:10:49 AM (GMT-6)

I've asked for a copy of my results of any tests since I joined here.....I didn't realise I could/should do that (d'uh). They're very helpful for sharing, comparing and research. Very helpful to know.

q

Hey malaika, I graduated from University of Nottingham 2 years ago. Sorry I know this isn't relevant to this discussion but I was so surprised to see it mentioned. Small world!

I hate it too (UK too here)! It's movements in our range that can make a difference. I ask for print outs always and it helps when I get my bloods done via GP to take to the hospital as they will do a print out for me. The worse is my consultant's secretary, absolutely refuses to help other than post results to the GP. Every now and then I get complete copies from the hospital via the medical records department but they charge for that. They can't refuse you the copies here but they can make it darn hard to get them. I see it always too in my patients (mental health worker), I ask how their thyroid, iron levels etc were and they say, oh, normal...but then you might find out that they are on the absolute borderline..with thyroid people can feel off at the borderline and it's pointless to go digging in therapy for reasons that may not be there for anxiety, low mood etc.. My IBD nurse actually said to me that she can't understand why people want to know the numbers. I guess to her they don't seem so relevant as she will see major symptoms with major imbalances but I think most of us can feel the small differences between borderline low and mid range and high for certain things such as iron and B12. Sometimes too I just like to see when my inflammatory markers are low (not that they often are), as that cheers me up.

Malaika - that's absolutely awful about that nurse. If she still exists she should be educated about the cytokine model of depression - i.e. inflammation and depression often go alongside and if we are suffering inflammation in our bodies due to UC etc, we are very vulnerable to depression. There's even some theories emerging now that anti-depressants may work, in those that they help, due to dampening inflammation

oh, and you are right too NCOT that it is only by seeing the results that we can be sure we were actually tested for everything we presume we were. When my liver was going crazy on Aza I had one set of results back that the GP said were fine but when I looked at my copy to take over to the IBD nurse I saw that LFTs had actually been missed off!

Jonny_Murray said...
Sorry to hear that some have had such bad experiences with their IBD nurses. I have to say my experience has been the opposite, for me they've always been helpful, approachable and knowledgeable.

Recently I was being treated at a new hospital as I have moved house and my new IBD nurse was excellent. Really friendly and as I was starting Infliximab, she took the time to discuss thing with me in specific detail and was really helpful.

Not really understanding the blood test thing either. Here is Scotland, my blood test results are logged on a central system which can be accessed by the hospital or my GP, so its very straightforward and there is no confusion. As for print outs of my blood test results, I don;t feel I need them, I prefer to discuss things face to face with my IBD nurse, consultant, GP. Not sure what me having print outs of my blood tests would achieve.

Sounds like Scotland is better organised than England then, since there is no centralised system here. My new GP surgery can't give me my hospital results for instance, so it's no good asking there (but then if I went to another local surgery it would be just the same - my hospital is out of the county and thus out of their remit).

And I seem to be the only one who has had bad experiences. Just feel utterly paranoid, like nobody likes me. I'm polite and pleasant enough face to face, I think, so what is about me which makes medical staff treat me with total disregard?

London Lurker said...
I ask how their thyroid, iron levels etc were and they say, oh, normal...but then you might find out that they are on the absolute borderline..with thyroid people can feel off at the borderline and it's pointless to go digging in therapy for reasons that may not be there for anxiety, low mood etc.

Exactly. It's the borderline results I'm trying to weed out - I've had my GP tell me that a B12 result in the low 200s is "normal", when really it is not. If my ferritin is, say, 100 and haemoglobin 14 or whatever, I'll accept that as being totally normal. But if my ferritin is 5, then I won't because I know that means my iron stores are virtually gone, even if the Hb is still normal at that point.

Ditto thyroid. I want to see if the results are truly normal or borderline - if borderline I'm going to ask my GP to increase my levothyroxine to 100mcg.