This is a good YouTube video explaining what various blood cell types on a CBC mean. Here in the UK I’ve had to struggle to get copies of my blood counts from GPs and specialists alike. At the moment one of the clinical nurse specialists on the team at SASH ( Redhill) will email them to me if I ask so I’m starting to build up a reasonable series of numbers
I’m feeling really tired and depressed, and although I’ve got a fair amount going on in my life, I know that I could cope a lot better if the haematologist I’m seeing at the moment would let me have a blood transfusion to keep my haemoglobin up closer to 120, the lower limit of normal,(120-140) rather than insisting that it be well below 110 before I can have a unit of blood . The reason given is that if I have more blood transfusions now, I won’t be able to have another blood transfusion later on down the road because of iron build up
I would rather judge for myself whether I need the higher HgB now , rather than in the future.
To my US friends, here in the UK we talk about haemoglobin levels, where is in the US you work in terms of haematocrit. The useful video I gave a link to explains the difference, but because I ‘m also fuzzyheaded when I’m anaemic, I can’t quite remember now. )
I did some statistics at one stage in my career, and it also irks me that numbers on blood tests aren’t given with associated measurement error.
In the UK, there is a fashion for specialists not to release data to patients until they, the specialists , have seen and approved it.
The rationale given is – wouldn’t it be awful to find out that you had cancer just by looking at the results of a test without your specialist at hand to explain it to you.
Myself, I would rather have the option of knowing as soon as possible. At least that way I get to see the report. Rather than waiting for somebody who knows even less about the hospital IT system than I do, to click the right button to release the information to me. And it’s very rarely the actual specialist.
Its a waste of NHS funds not to make maximum use of test results: results need to be with the patient, not buried in hospital systems
I’m likely preaching to the choir, as they say, but its a source of huge frustration and stress.
Rachel
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Rachelthepotter
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You are preaching to the right choir about access to lab results. The patient owns the data in the chart, not the provider nor the healthcare system. It should never be up to the providers to decide when to release the information. The information does not belong to them. Withholding information because it might upset patients is needlessly paternalistic and demeaning. We are adults and capable of handling information about ourselves.
Having said that, I understand that docs want to see the results so they know why we might be calling them up. None of my systems seem to do that anymore, but some ease into more rapid release by automatically posting labs and reports 24 hours after they post. A needless delay but one I could live with if necessary. Note that at my hematology office, I am handed a copy of my CBC 5 minutes after the test. All of other labs post in the portal as soon as they are available.
You really have to dig to find the level of sensitivity of your labs. It varies from lab to lab and test to test. I have learned to just go with the flow and always assume that tests done at two different labs may not look quite the same. It would be nice if they all used a standard reference range too, but that is not going to happen.
HGB = amount of hemoglobin in your blood by volume (my lab uses g/dL)
HCT = percentage of total blood volume comprised of RBCs.
These two number vary in proportion to each other. HCT is usually roughly 3x HGB (g/dL)
It sounds like a more nuanced discussion with the hemo-doc may be in order. Do note that my lab shows the bottom of reference range for HGB to be 11.20 g/dL (or 112 - I think at your lab). I can understand the doc's reluctance to order a transfusion until you drop below reference range given the long-term risk of iron overload. On the other hand, you have a perfectly valid point about your quality of life and the need for relief now rather than later. That should be the proper discussion to have - meeting your treatment goal of not feeling so constantly tired/drained and depressed by the situation. Perhaps there are other options to be explored, like a change in medications. Momelotinib is in the approval process. Perhaps it will become an option soon.
I definitely understand the fuzzy-headed thing. When I was so iron-deficient (without anemia) from the venescetions I had trouble conentrating and lacked normal energy levels. it is a big part of why I switched by PV treatment plan. I am doing much better on Besremi.
I do hope you can talk to your MPN care team about viable solutions to feeling so tired. If they can offer no solutions, perhaps a second opinion old be helpful. You deserve to be listened to about your concerns and have your care team explore a range of options to meet your treatment goals.
I agree on access to blood results. My provider also requires Dr see it 1st. But as long as the Dr is in I see CBCs in about 5 minutes, same as Hunter, and I get CMP by 9PM same night. We see here that UK is not consistent in these things.
Interesting on the Hb vs HCT, I do more relate to HCT, being a US person.
We often see a 3X relation predicted, but mine are quite different from that, ~2.8. For example if I used 3xHb for one of my CBCs, my HCT would be 45, while that one actually showed 42.3.
There is a precise relation for HCT=RBC x MVC/10, and I think this is where HCT comes from. But it does not use Hb.
I don't know what to make of all this except it seems HCT and Hb might measure different things with relevance to our red cell control.
This study found differences.
<<The crude relationship between Hct and Hgb levels was significantly different from 3, and this was modified by age ... the corresponding Hgb levels cannot be derived with an acceptable accuracy using the value 3 as a conversion factor>>
The problems balancing present low Hb levels and potential future iron overload are truly a catch 22 situation. Unfortunately though the latter is a danger.
You mentioned in a previous post that you had had EPO injections in the past. Has this been discussed as a potential treatment again to help your problem now? I know from experience how debilitating and depressed one feels when anaemic and you obviously have a lot on your plate at the moment.
I find that if I keep above 10(100) the haematologists are pleased even if I feel very tired. However I now have a high ferritin level from too many transfusions so they are no longer an option. It sits at between 1300 - 1500, not massively high compared to other people who have posted. This has to be treated though to prevent future liver or heart problems and as long as my EPO injections have got me above 10 I have a venesection. This is
a bit miserable as then I drop to 8 until the injections bring it up again. Personally and it is only my own view I wish I could have avoided being in this position but the transfusions were essential at the time.
The alternative is chelation treatment. Neither of my last two consultants were keen on this and there are a lot of side effects.
I hope your haematologist can come come up with a plan to help the anaemia problem.
H8 RachelSo sorry you are frustrated & depressed re blood results.I am English living in France,my nurse comes to the house for the ‘pris de sang’over 12 yrs we have become friends having the same interests in art & horses.The blood goes to the laborartoire,I then get the result within 2 days,my G P gets it,my consultant gets it.Any problems I am notified .I am so lucky & feel so angry that others on here do not get their results easily.I have ,like you problems with carcinomas,very depressing.I am at present having awful depression & anxiety panic attacks,never happened to me before.I am having help & only yesterday had an Urgence appt with my G P as I was so scared with my panic attack.I read your posts & I want to wish you all the very best.I would like to come back to U K but I know I will not get the excellent care I get here.
Keep strong Rachel & be assertive re results ,I have read on here it is the only way to be.Very Best .Sally.Ps I take Jakavi have PV.
Thanks Pte ,I am tested monthly for everything but whitewash.All is as normal as poss with P V. Dr has put me on anti depressant which at last is helping me to be more myself.So getting better slowly.Best to you .Sally
I email my haematologists secretary and she sends my results by return so that I am fully in the picture when I have my haemo appointment. Otherwise I find I am more interested in getting my results than I am actually listening and it wastes time too. Some people prefer not to know all the details but some like me need to know and get more out of consultation by going in armed, if you like. Some phone appointments have been very quick when figures are good which allows my haematologist to spend more time with someone else.
This iron overload has us flummoxed! My wife has MF and at the last blood tests was very anemic with Hgb at 86, and hematocrit at 0.27 yet she has quite regularly been infused with iron. The last time only a few weeks before these test results. We were expecting a much higher Hgb. Since having the Covid jabs, of which she has now had five, the platelet counts have been all over the place, and now the Hgb and white cell count are erratic. She doesn't have red cell transfusions as she reacts quite badly with them, very high temperature and breathing/oxygen levels drop then pneumonia. Though each time this has happened we ask if the blood has "travelled" too far which can damage it. But are "reassured" that it couldn't be that. Yet, since Wales has gone solo from the UK with blood products, and her blood has to travel up from South Wales to North Wales on the back of a motorbike she has had problems with blood transfusions. Getting some numbers from the consultant is now ok but he keeps back most of them.
Rachel - so sorry about the frustration! Completely agree that at the end of the day the results belong to the patient..we are fortunate here, in Israel, that the labs are controlled by our health funds and the information is available to doctor and patient simultaneously (for CBC within a couple of hours; CMP by later the same evening and special tests (such as Jak2 can take up to 2 weeks). Also, mot good doctors welcome knowledgeable and questioning patients - they see our care as a team effort directed by us and led by them on the medical front.
On the flip side, it can be jarring to see raw data or learn something without the additional context a specialist may provide (this was our experience when we found out my wife was battling Stage3 Breast Cancer - we looked at the results and saw what was going on before the doctor had a chance to speak with us..it was a very difficult time but I agree with you that we would rather have access to the data as soon as possible. Even in that very difficult situation, knowing permitted us the opportunity to try and pull together key questions for our initial consult..something we would not have been in a position to do if the first we were hearing about the condition was at the consult itself.....
Hi, sorry you are goi g through a bad patch. When I attend clinic I take a screen shoot of my blood results .what is your haemoglobin reading? I have ET and even when I had a haemoglobin reading of93 I wasn’t offered one😪. My ferritin level was and still is too high.
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