Blood Test Results

[Jaysharp]

RA 6 years, managing on 2mg prednisolone, no DMARDS. Last three blood tess have started Ishowing RDW out of range on the high side. Hemoglobin is low but within range. Does anybody have this and what can i do about it? My Rheumi simply says not to worry. But that begs the question what's the point of a 'nornal' range then? Does anybody have any ways to get this RDW number down again either with medicine, supplementation or diet etc.?? Much appreciate any advice.

[OSTEOARTHRITISRA]

Hi not personally with RDW but other issiues borderline and slightly out of range and told not to worry ,know where your coming from

Maybe someone may come along about the RDW

[Jaysharp in reply to OSTEOARTHRITISRA]

Thank you for your support OST, I've been lookng at EVOO and claorie restriction or fasting to bring those numbers down but haven't tried yet. It's the Omega 3 I need more of apparently, and just being younger would help! What bothers me is the attitude of some people inthe medical profession who just don't seem to care unless there is a symptom they have a remedy for. They don't really look at optimising health, only treating sickness.

[medway-lady]

I think that normal is just a word and this could be a case of over thinking things. If the Consultant isn’t worried, and it’s just a guide plus you’re feeling ok then it’s highly likely that nothing needs doing, if on the other hand you’re not feeling well then talk to your GP. I wonder these days if we get too much information sometimes and it frightens rather than informs. The science of these things I’d imagine is very complex so only a medical professional can really give you advice.

[Amnesiac3637]

Agree totally with medway-lady. Blood results are always taken in the round so singling out one higher or lower value is not anything to unduly bother about and as your consultant has told you not to worry then that’s the only advice to take.

They will monitor your results and if they’re concerned by anything which looks as if it’s going in the wrong direction and you have symptoms to go with it you’ll be treated for that problem.

I was a clinician in the NHS and we do care. What we don’t have time to do, and are not incentivised to do by the system, is to treat people holistically but by symptoms which are presented and can be managed. There is no time to optimise health -I wish there was and people must take a lot of responsibility for doing that themselves too- but the NHS is in the business of treating sickness as its main function. Health promotion provision has been sidelined for some years and often wholly axed so I hope you’ll understand that until there is a massive shift in the way the NHS operates we are destined to continue with the model for which we currently are funded.

[medway-lady in reply to Amnesiac3637]

So true, if I look at my blood test results it’s just numbers. Might as well be Russian! I have access via PKB to my records but once the novelty of seeing things wore off(very quickly) I just don’t bother. I’m sure that treating holistically is impossible with the pressure on services and expectations have to be managed with reality. And NHS resources are finite.

[stbernhard in reply to Amnesiac3637]

I think it's time we recognise that we have to take responsibility for our overall wellbeing. Diet, exercise, meditation and positivity play a great role in a balanced mindset. We need to look at ourselves in a holistic way. Many NHS staff look at more than just the symptoms in my experience and I'm very grateful to them to find the time for that.

[Jaysharp in reply to Amnesiac3637]

Hi Amne, I wasn't trying to be disparaging., just venting my frustration. I know the vast majority of NHS staff have been fantastic and I am forever grateful for what they do and how hard they work. But my GP and my current Rheumi are both quite dismissive of my concerns and this leads me to question. I don't like to leave everything in their hands and just be dictated to about my condition and meds. I want to understand everything - and so when I see them which is very rarely - after reading tons online and in books, i am always loaded with questions for them. And I think they misiterpret that as anxiety when I just really want to know. So they try to reassure me rather than explain. For example I've been on low dose prednisolone 1.5mg and no other drugs since 2022 and am finding it hard to get off them by tapering. My rheumi said it was an almost homeopathic dose and not to worry, but surely it's a significant dose and long term steroid even low dose can be dangerous (as I'm lead to believe) but there was no suggestion about trying find another DMARD. Then when I see the blood marker going out of range I feel that I need more info, but she doesn't seem to care. When I approached my GP he just said something along the lines of..well you're not showing any symptoms so there's nothing to do...But I'd rather deal with things before further symptoms develop and was hoping for some practical advice. Anyway. it's just frustrating.

[lilyak in reply to Jaysharp]

Please, relax. That is a tiny dose of steroids, and at that dose, is just as safe as any other DMARD long term. Even up to 5mg, if there are no other options, is acceptable. I am on 20mg daily and have been for a number of years. That is a high dose with very serious side effects. But I have no choice.

I mean no disrespect, I am trying to help, but why do you not trust your doctors? I mean, when they tell you its nothing to worry about, you are still worried. Have they let you down in the past? I honestly thing there is something to work on there, for your own healths sake. Of course they should answer all your questions, fully and completely. However, they do seem to try and you do not seem to believe them. I think you should ask yourself why.

[Jaysharp in reply to lilyak]

Hi lilyak, I'm sorry to learn of your steroid dose and I'm aware that most people on this platform have worse RA than me and have often been through the mill with a variety of meds and regime changes as well as dealing with pain and disability. My heart goes out to you and others who find themselves with this awful disease. And I can understand how my small dose seems like nothing to most. For me though I've learnt that the adrenal gland puts out the equivalent of 7.5mg of prednisolone in cortisol every day (in those not affected by adrenal insufficiency). So 1.5mg is 20% of that and since I start to develop pain and stiffness quite quickly when I cut down it is to my mind a significant dose. I guess the Drs and Rheumi are also seeing my condition from the point of view of comparison with their other patients. To me this is wrong. Absence of disease symptoms is not necessariy the same thing as good health, and optimal health isn't even on the radar of the medical profession. So I am concerned that there are things i could be doing to improve my condition even if it's impossible to cure completely. I refuse to give up and just take what they say without deeper explanation or understanding. For me information sets me free. Free to choose what's the right path for me - and as a rule, no i don't trust most professionals. I am a profesisonal at what I do, and I expect people to challenge me when i haven't made myself clear - and some people are more interested and want more depth to answers which is fine by me. Medics are not different - they are just trying to get through the day like everyone else. So it's natural to take the line of least resistance and just give platitudes and simple explanations when they have huge case loads. But just because they are not worried doesn't mean there's nothing that I could be doing or eating to improve those numbers. Hence me posting the question here. ...and relax Best wishes. J

[Amnesiac3637 in reply to Jaysharp]

I do think you may be getting all this out of proportion and your health anxiety is beginning to control you. You’re on such a minimal dose of steroids it’s hardly worth having them prescribed. I can’t think where you get the idea that 1.5mgs is a significant dose - if you’ve read it online that is totally inaccurate. You have no significant current illness, are not on any immune suppressants and your experienced and highly trained consultant who deals with RA patients day in, day out is trying to reassure you that all is well, as is your GP..

By all means have questions and ask them as much as you feel necessary but for your own peace of mind accept that you are pretty fortunate to have so little in the way of signs and symptoms and are taking so few drugs that most of us on here would give their eye teeth to swap places with you! I hope you can accept that no one is trying to disregard what you’re saying but as Lilyak has also pointed out, maybe relax and stop worrying while you’re well. All the very best.

[AgedCrone]

If neither your rheumy nor your GP are worried & you have no unusual symptoms …I wouldn’t stress over it.

I was sent to a haematologist because of unusual blood test results & ended up waiting three months on tenterhooks for the result of one particular test, only for it to come back normal!

[Tottie10]

I certainly keep an eye on my blood results as I am usually out of 'normal' range on about 5 of them. The comment that the Doctor gives is that the out of range is 'normal' for me! My rheumy gives me levels that I should look for and flag if necessary ( self management). The fun starts when a locum has to comment on my results ...........

[oldtimer2]

Sounds like the borderline mild anaemia that we get with long term inflammatory disease. Worth keeping an eye on it but if it stays there not a worry. Are you are only on prednisolone 2mg? and not on any other immune suppressant of any sort at all?

Mine got worse and worse and eventually had to go on high dose steroids plus methotrexate for a while because the inflammation/autoimmune condition was affecting the bone marrow. This is very rare apparently, but responded well to treatment. Worse bit was having the bone marrow tests!

[Jaysharp in reply to oldtimer2]

Crikey oldtimer, Sorry to hear that. I certainly hope mine doesn't develop along those lines. Yes the prescription is for 2mg but I'm trying to get them down. Currently 1.5mg. I've managed this over the last 6 years by changing my diet drastically with the help of the ZOE project -including microbiome tests, continuous glucose monitoring, personalised food recomendations etc & excersising more regularly. park runs, swimming etc. I've lost most of my extra fat (not that I was outside normal BMI before) 12stone 9lbs back down to 10stone 6lbs. I reckon that it's taken 20 years of poor nutrition and bad habits to create this disease so it'll take 20 more to undo the damage as much as possible. If I survive that long! I've always had low (but in range) haemoglobin but my ferritin levels are normal - but I'm not getting advice from the profesisonals about what I can do to fix it. I have to do my own research and hope I'm doing the right thing. I hope you cndition is stable and you're not suffering.

[tyncwmmarchhywel]

m a y I ask how high your crp was

[Jaysharp in reply to tyncwmmarchhywel]

Hi tync. My CRP came down rapidly when first diagnosed end meds were high. but have been under 10 for about 4 years. typically 6. Earlier this year three successive blood tests have shown the high RDW and my inflamation had increased to 15. i think I was getting over a virus or something because I could feel that my body was fighting something when I had the blood test. So I wan't surprised by the higher CRP.

[Marionfromhappydays]

RDW illustrates the variety/spread of the size and shape of red blood cells. Certain conditions ie macrocytic anaemia caused by folate/ B12 deficiency can cause the red blood cells to get bigger and this would raise the RDW

Various other conditions can cause a raised RDW and if you are having regular liver function and u&es (kidney) blood tests and they are normal these raised RDW will be looked at in conjunction with these and determind as clinically significant or not.

I was a biomedical scientist in a NHS hospital for years, some results are more significant than others.

I always think it's a good thing for patients to be aware of their results, it is hard though to know what should be something to be concerned about and what's not, this is where we do have to have some trust in our medics. Medical consultations are a 2 way process where you should be comfortable asking questions. From personal experience some Dr's aren't up to speed with all aspects of lab results 😬

[Jaysharp in reply to Marionfromhappydays]

Thank you Marion. That's very helpful.

[Braecoon]

It’s so enlightening when I hear others trying to self manage and self care for themselves, and wanting to engage in dialogue with their professionals regarding this subject. I like you have experienced some of this professional unwillingness to engage with the patient and feel like at times we are being fobbed off with platitudes and can’t wait to get you out of the door (this is the current state of the underfunded and mostly exhausted NHS).

From beginning of year I have been below the normal range for my haemaglobin results. I have been tested and found not to be deficient in iron or B12. It is called anaemia of chronic disease, and will be treated with a blood transfusion if it falls to a critical level. There is nothing I can do to improve this situation. Annoyingly, my GP and Rheumy team say this is my ‘normal’. I want to scream and shout at them, this is not normal. I am beyond exhaustion and thankfully I took early retirement otherwise I would not be able to work!!!!

Then there are the friend/family health advisors, ‘just take some iron tablets’ or ‘you should eat a bit more liver’ who finally shut up when I tell them you can get iron toxicity doing this when your iron stores are already at their capacity.

I am sure You are doing everything you can (eating healthily, etc.), so pat yourself on the back and keep up ‘the questioning attitude and garnering you wish to engage fully with your health professionals’, despite the obstacles. Some day in the future, we may have a fully functioning holistic NHS. Adopt the attitude, it’s not me, it’s them and smile and do all the good things you are trying to do to manage and care for yourself.