I had my yearly appointment with the haematologist over the phone yesterday. I explained that I am worried about covid and cll as I am still prone to getting sinusitis which then sometimes ends up with chest infection. Also have some minor other issues. She then said that I should have an antibodies test before my next check up, which is in a year's time!! Think she said that last antibodies test was done in 2015
I sometimes wish I could see a different consultant. I never see any of my blood results, I know I should ask for it but actually feel scared asking. I don't feel comfortable with my haematologist it is if my blood test looks good there is nothing eIse to worry about or discuss. Also said I did not need to shield for covid.
I am wondering if I should ask my GP if they can have the test done.
I was diagnosed in 2013 and had 6 rounds of FCR. Would appreciate any advice please.
Stay safe.
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Ellebele
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Oh dear....I suggest you get a new hematologist. Obviously you are timid around your doctor and that is not good. My hematologist goes over my test results and gives me copy as I walk out. If I had to have Telahealth- she has portal to check all my results.
Are you like that with all your doctors?
Trying to understand why you can't ask for copy.
I had FCR 3 rounds- 2 years ago and doing great. Are you 13q mutated? 7 years remission is great for you and you need to know your blood levels so you can monitor your status.
I don't think I ever had an antibody test. Not sure where on my blood test I would find it. Why would you need that? Would you do anything different if you had that test?
Get an updated blood test from your GP and research another hematologist.
You really should not have to put up with this situation. I am sorry you are feeling unhappy about - I would feel the same in your situation.
Above is a link that you may care to follow up on this Webinar. Could be useful for you.
I see you are UK based - so I would advise you to go and see your GP (or however you get to talk to your GP at this time of Pandemic) explain your feelings and request the GP sorts something out.
Options to see another Haematologist will depend a little on where you live. Perhaps another in the same hospital.
One further point - is your Haematologist a CLL expert? If not you you could ask to see and be cared for by one.
On the matter of antibodies - there is not a great deal you can deduce from a random level. Certainly not whether you are Covid safer.
I had FCR 2018, my Lymphocytes are still flat lining and very low - my Haematologist suggests antibody testing will be of no use and one can not extrapolate from the levels anything useful. I know mine are low - but I dont get infections... possibly because I have good T cell function. Not had had T cell levels done.
This is bit of an unclear area of CLL. I have asked of CLL experts for clarification - responses have been non committal.
Anyway - looks like you need a new friendly helpful Haematologist, and you certainly should know all your blood results and understand what they all mean.
Interesting you say you've never seen your bloods, I know after I've seen my specialists they send a letter to my GP which is copied to me & this always includes a copy of the bloods we discussed.
I think doctors see a range of patient types..- those who are hard to judge, but maybe would only worry with extra details
- those who don’t want all the detail to worry about
- those who want all the detail to understand things in detail
They do take some of the cues from us patients - “it takes two” !
To change the situation you need to say something, such as, “Please could I have a copy of this and future blood results — I’ve decided to start following the test trends.”
You can equally request a few copies from your GP surgery — only need talk to the receptionist to organise this - or send an email to ensure you write a really clear and friendly message.. they can send them to you.
I am lucky with having access to most results via Patient Knows Best service website.
Sadly Shedman that is in a perfect world. I know of patients not getting letters, surgeries not getting letters and surgeries and hospitals being on different systems so they can’t always access test results.I get copies of letters but rarely do they mention blood tests, except for highlighting a couple. Because I am having monthly IVIG I am able to get copies of tests that day.
I am in a large London practice but they don’t have the facility for emails either.
No. It is not in a perfect world! What are you talking about?
We are talking of a situation for a patient that is not perfect.
The question is, where to go from here and how?
What should be her next step?
Of course, I too can work on the basis that everything is doomed to fail, but I don’t think that approach is empowering to anyone.
This patient group have some difficult journeys, and we are not all equal as regards our confidence in speaking up for ourselves — the same applies to myself [childhood trauma, blah blah blah.. no, it left me lacking for trust in the world and confidence variously] — but in responding to a question about such a situation we must still look at the evidence and try to look for a positive explanation and a straightforward approach that minimises fear and despair.
So..
1. Ask GP surgery: Sorry, I did not get a copy of my blood tests - do you have them? Could I collect a copy please?
2. If GP surgery says they did not get them, ask your haematology team whether they sent them to GP surgery.. and whether you can have a copy in the post please?
I was surprised only last week — visiting my GP surgery practise website.. they no longer support email, instead, perhaps in line with increased remote video/telephone consults, the website is via a new provider and has contact forms and all sorts..
— I’d be astonished if you are unable to contact your large London surgery via contact forms from their website.
“I get copies of letters but rarely do they mention blood tests, except for highlighting a couple“ — But if you want a copy of blood tests, either have the mind-reading receptionist print and hand them to you, or, in the real world [sorry to be tough about this], you will actually need to ask them, “Please could I have a copy of my blood results?” - it should be no problem.
We need to learn to speak up, else our doctors won’t necessarily know what we are thinking/feeling/wanting.
But there is always the telephone.
—
An aside: I reset my Patient Access password, but was disappointed to find that it provided nil access to blood results.. likely this is just how local NHS trusts are organised; instead I have Patient Knows Best.
Shedman I know we are all under varying degrees of stress right now, but I just don't understand your heightened reaction to what Colette has said here. Please remember she is simply trying to be helpful to Ellebele here, the same as you are.
NHS members please feel free to correct - my understanding is that the NHS rarely uses email to correspond with patients. Not because the health service has yet to arrive in the 21st century, but because of the real risk of data breaches. They do use SMS to confirm appointments and prescriptions. All the personal medical info I've received has been verbal or by letter.
It does seem a bit of a faff to get printouts of all lab results, one has to push.
Agreed,The data protection issue is very complicated. Thought I have heard from some of my group ( but in a different health service ) that they can email their practice. I have received emails from mine but then when I tried using the link I was firmly told not to. To add to the complication different health areas use different operating systems.
Blood test results are also complicated and not always easy to access. So I am lucky to have the time sitting in the day ward having IVIG and to be able to get the results back and take home a copy.
By antibodies test, I wonder if you mean the levels of your antibodies, which perhaps are better known as your IgA, IgG and IgM immunoglobulin counts? It is important to have these checked occasionally. If you had these last checked in 2015 and have been having frequent infections, then it is definitely worth having these checked. You may need your IgG boosted via IVIG or subcutaneous IgG to reduce your frequency and severity of infections.
Please do either find a way to gain access to your blood test results from your haematologist or a new one with whom you feel more comfortable. Doing so is empowering and you have a right to your own blood test results.
Importantly, given you've made it to 7 years of remission after FCR, there's an excellent chance that you may never again need treatment for your CLL (but you might still need your IgG boosted). Those who are IGHV mutated and make 7 years remission are approaching 20 years without relapsing. It's unlikely that your IGVH mutation status was tested, given you live in the UK, but if your lymphocyte counts remain stable, you may well have achieved effectively a cure for your CLL, which would be why your consultant only wants to see you in a year's time!
Hi Ellebele,I feel I had the same experience as you at the beginning. I decided to bite the bullet, and I emailed the CNS and asked for a copy of all my results. I said I would be happy to have them via email. I received them within the hour. I now do this following every appointment. They can send a screenshot, it is really quick for them to do, and then I can spend hours poring over them 😂
I am sorry to hear about your lack of test results from your doctor. That can lead to a lot of needless anxiety. Here in US, I request a copy of my blood test before I even see my doctor about tests, so I can prepare any questions. I also can access all my medical records online from my home computer. I would ask for copy of tests. Blessing
My hematologist schedules me every two month' : I get to the clinic at 1:00 PM. A lab tech draws for the tests at 1:15 in a room where a half a dozen lab techs draw for tests at the same time for other patients. The lab tech leads me to a small examination room at 1:15. At 1:20 the hematologist walks in and gives me a copy of the CBC with PLT Diff.: I am back almost to normal after two years of IMBRUVICA after Stage 3 CLL. We both agree that I am "alright". He gives me order to take to the scheduler for the next appointment in two month'. He also tests each time CMP, Immunoglobulins, (sometimes a smear), and per my asking to spare a separate trip to a general lab: A1c and TSH. Last time I also asked for a urine test and for the next appointment a "lipid profile". He leaves the room within less then five minutes, since I do not mention any problems of significance. The other test results appear on the internet site within four days with history of texts since years. I needed to know about Shingrix shot for me and the hematologists nurse responded on the net on the following day: Yes, get it ! I avoid the "primary" now because the group is located in a hospital.
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