I have regular blood tests for my RA medication (rituximab). When they throw up small anomalies the GP does a follow up test. This has got worse since September so that I've had almost fortnightly tests and phone calls to debrief. i've reached the point where this is undermining my self confidence. I grew up in an environment dominated by my mother's health worries and try to focus on broader things - this is what helps me. I have a GPs appointment in the new year for yet another set of tests and want to ask them to slow them down and limit them. I'd be interested in any one's experience of asking a similar question - to limit the number of investigations. Did any one thing really help to make the point? I'm inclined to emphasise the harm being done by how they provoke anxiety and the burden on overstretched resources. Any ideas or better still common experiences?
Too many investigations making me anxious. How to tac... - NRAS
Too many investigations making me anxious. How to tackle this with GP
Your body, your choice!
I have from time to time had tests which show incidental findings - like a scan showing a growth on my thyroid. Which is hugely common and virtually never cancerous. So when they wanted me to to do follow up tests I just said no, I will wait until there is another reason to have more scans.
So often incidental finding are just that - completely incidental and irrelevant. But doctors have a moral duty not to ignore them.
I would be blunt and say you don’t want any extra testing unless there is a significant reason, and that the result could be a cause for a change in treatment. And that this is explained and discussed with you.
That is a good way to phrase it. I thought I'd mention the word 'harm' suggesting nicely that the investigations are giving rise to unnecessary anxiety. I have refused an endoscopy at the hospital - years ago - and they took it in good part, offering a scan instead. But the relationship with the GPs is more important and I'm keen not to seem uncooperative. Perhaps I'll say that. Thanks Helixx2
I agree with HH if nothing is coming from it maybe lengthen the time between tests instead of the ongoing system that seems to be happening and then reduce ing the anxiety. Just talking to your GP And how growing up re your Mums health I am sure they will adapt or explain the reasoning.
I have had monthly blood tests for several years due to neutropenia and a low WCC. I asked my GP why we were bothering as we know what the results will be. She was keen to continue, as an early warning system (for what ?).
I asked the GP pharmacist, whilst speaking to her about something else, what if I don't have the monthly bloods done ? My leflunomide prescription would not be fulfilled if there was not a recent blood test, so I took it upon myself to just have bloods taken the week before I submit my prescription request.
First month I did this, my lymphocytes and monocytes fell significantly, they hadn't done this before. The pharmacist contacted my rheumatologist who stopped my meds for 2 weeks. I'm now on fortnightly bloods for the next wee while.
But, having investigations that you don't want is a different matter. HH gives some good advice.
Cathie darling they are keeping on top of your disease darling. I had to have bloods done every fortnight for six weeks. xxx
hi Cathie- they’re just keeping an eye on you so try and run with it. It’s a pain no doubt but it ll pass. I went through a phase of blood testing over summer- it was a blinking nuisance; but it passed. Have they qualified why they are doing fortnight tests? That’s a lot of testing over the last few months? Ultimately is the medication working well and are the anomalies serious issues or is the GP overly zealous.
dear Cathie
Wow your post really resonated with me. After years of blood tests with the hospital and my lovely old rheumatologist- now sadly retired (a moan for another time) - who basically shrugged about most blood anomalies, I now do my bloods at the local surgery. Wow you are right…those gps can be a zealous bunch! I get horribly anxious before each test as it is, and just like you I was finding myself being sent for kidney panels thyroid you name it.
My solution may not be doable for you but I have found two lovely and sensible practitioners who I book to do a follow up call the day after the bloods. They know me and know how Rheumatologists think In terms of what they actually think are worrying blood results. That way we get to have a sensible conversation and I get a say in what I do or don’t follow up.
It is so much easier for me to pop to my surgery rather than shlep to Charing Cross but I genuinely thought about it for a while because it was making my poor brain even more fried with anxiety.
I hope you manage to find a way through this: my anxiety blights my life at the best of times and I really feel for you because so many of these results are not important in the grand scheme of things.
Please let me know how you get on
Bon
X
thanks it helps to share things. My GPs are easy enough to talk to I think I’ve been a bit unnerved by the attention after things being managed at arms length for the past three years!
That does seem as if your .GP is doing them for her information doesn’t it? Have you spoken to your rheumatologist about all these tests?As far as I know my GP never even looks at my blood results….my rheumy checks them& he decides if they need adjusting.
You say 'my GP' well since before the pandemic the practice works as a group so I dont always see the same doctor. Which is fine, they obviously keep one another informed at regular meetings. There was a practice specialist nurse who'd been there for ages and she was the person I saw the most. Most of the GPs are women too - which I like. These days I rarely hear from the rheumy - but I have no complaints about him. I think the anomalies are around kidney and liver function. I went through a period of having abnormal potassium results which turned out to be because I had a big glass of orange juice and a banana at breakfast which was reflected in the bloods!
I’m finding this post interesting as I have the opposite. There must be something they need to keep checking on surely. My GP never does my blood monitoring unless I ask. They also don’t share with Rheumatology when I ask for them to be done as my Rheumatologist is in a different area on a different system. I often have abnormal or observation on results on app but they don’t get looked at again 🤷🏻♀️ in a way I’m glad as I only have one decent vein which always hurts as lots of notches in it now. I would definitely speak with your GP & ask what he is looking for x
They're supposed to do monthly bloods because I'm on leflunomide. They check things like my kidney function and that seems to be marginally unusual. When my (roughy) six monthly rituximab infusions come up I have blood tests to make sure I'm OK to have that. I've learned to drink a lot before the blood test to plump up my veins and they use a butterfly needle which seems to make it easier. During the pandemic a lot of this went into abeyance until this summer when they started micromanaging my blood tests. I know that they can throw up different things - from 20+ years experience of biologic infusion tests. But getting a phone call out of the blue from my GP who was hard to contact for the past few years unnerved me!
Yes I can understand that. Do try not to worry. Yes like you I’ve been on Biologics for 19 years including Rituximab where hospital always did bloods beforehand. Sometimes if they have time the phlebotomist will use a butterfly needle which is great. When having Rituximab I remember having to sit with my arms in a bucket of hot water for 30 mins before they could insert cannula. I’m supposed to have shared care but not sure GP knows what that is. So I’m guessing you don’t know why your GP is ringing. I hope it’s not too big a problem & it gets sorted soon x
I completely sympathise. I have many long and involved stories I won't bore you with, but some tests and investigations clearly do more harm than good.
I think it's worth mentioning these anxieties with your doctor next time you speak - even if only to remind them that a blood test is not nothing to the patient.
Anyone really interested in this subject, I recommend reading The Patient Paradox by Margaret McCartney. It changed my perspective on a lot of things and gave me the confidence to assess my individual risk and say no to some things.
I dont know that reference so thankyou! I wonder whether the pandemic has made medics more jumpy than they were before. I try to think about how that has affected them as well as us. There was one test - more than a year ago - when after a blood test a doctor I didnt know phoned and suggested that I go to a department of A&E which had been set up to monitor patients for GPs. That was when I had high potassium so I had heart monitoring, an xray, blood tests the works! All it proved was that I was pretty normal but in that context it was a bit traumatic. I may be concerned in case that happens again. Thinking about it, I couldve said no thanks. I have done so before with the proposed endoscopy about something else.
I use to work in the labs doing the blood tests, ive read through your replies, some blood tests are really quite more acute and urgent that others. If i were you i would want to know specifically what tests you are being made to repeat as like you describe it causes alot of anxiety.
Without causing more anxiety a Dr would he negligent not to follow up a high potassium (a genuine high K+ is a medical emergency), I would never ever advise on not getting a repeat potassium test .
So I think without knowing your medical history I don’t think it would be appropriate to advise either way to keep on having these tests or not. I personally would ask specifically why you are having these tests and explain the amount of stress you are under having them. Some are really important whilst others not so much!
Hope you get this sorted and come to a decision what would be best for you.
thanks. Potassium sorted for now.
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