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Blood

trophywench

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
I eventually had my appointment with the Haematology consultant yesterday. What I've got is CLL - BUT that is no longer considered to automatically mean cancerous, simply chronic raised lymphocytes - which apparently 10% of adults over 60 have, 20% of over 70s, 30% of over 80s etc etc. There is a rare complication, so they need to do a specific blood test for that to find out whether I have that or not, so they took the proverbial armful - will get another appt in approx 8 weeks-ish when they'll tell me the results - if it is that, they will prescribe tablets and continue to monitor me, if not, no treatment necessary or possible so will be signed off.

Nice, approachable lady so I asked her something. Told her that years ago the diabetes 'press' used to say if you were anaemic, the HbA1c test wasn't reliable therefore a test for fructosamine content of blood should be carried out instead, so is it the same with high lymphocytes? Answer - Yes that's still exactly the same with anaemia but you are definitely not anaemic nor do increased lymphocytes affect the normal test.
 
trophywench said:
I eventually had my appointment with the Haematology consultant yesterday. What I've got is CLL - BUT that is no longer considered to automatically mean cancerous, simply chronic raised lymphocytes - which apparently 10% of adults over 60 have, 20% of over 70s, 30% of over 80s etc etc. There is a rare complication, so they need to do a specific blood test for that to find out whether I have that or not, so they took the proverbial armful - will get another appt in approx 8 weeks-ish when they'll tell me the results - if it is that, they will prescribe tablets and continue to monitor me, if not, no treatment necessary or possible so will be signed off.

Nice, approachable lady so I asked her something. Told her that years ago the diabetes 'press' used to say if you were anaemic, the HbA1c test wasn't reliable therefore a test for fructosamine content of blood should be carried out instead, so is it the same with high lymphocytes? Answer - Yes that's still exactly the same with anaemia but you are definitely not anaemic nor do increased lymphocytes affect the normal test.
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Glad to hear that your initial blood test results are not considered serious and probably just need monitoring. Hope the follow up test results are OK.
 
@trophywench there always seems to be another little challenge waiting for us. 8 weeks for a blood test result???? Are the bloods waiting on the next rocket to be tested on the International Space Station:confused:
 
martindt1606 said:
8 weeks for a blood test result???? Are the bloods waiting on the next rocket to be tested on the International Space Station:confused:
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No, of course not - but you suspected they wouldn't anyway! They'll be tested in the path lab on the top floor of the very same hospital. However I have absolutely no idea whatever whether the different tests they needed all the different vials for (and they were 10ml Vacutainers rather than the now usual 5ml ones the NHS use for all the other tests I have to have for my various conditions, so same width but longer ones) take 5 minutes or 5 weeks. (Some test samples for some things still need to be kept for hours/days/weeks to see if this happens or that occurs. Or not.) And I hope she was being truthful knowing even if she got all the results back yesterday afternoon, no chance of another appt slot for 8 weeks. 'After Christmas, anyway.'

So I'll have to be a patient patient !
 
trophywench said:
So I'll have to be a patient patient !
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Glad it was good-ish news (with a wait for the final clearance, or commencement of tabs) TW.

Hope you found it reassuring, and will be able to ‘park’ thinking about it until after Christmas.

Do you think the results might make it onto your record as-displayed in the NHS app (or Patient Access) before then?
 
everydayupsanddowns said:
Do you think the results might make it onto your record as-displayed in the NHS app (or Patient Access) before then?
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Hospital tests never go into my nhs app only GP ones.
 
GPs can see hospital blood test results, if they choose to look for them. In my experience they actively choose not to, and if asked to do so, decline. (Yes, having been told by a Consultant what they need to look in, my GP stated they did not have access to that system, then went onto explain they needed to consult exactly that system for something else.. Eh?)

In my more supportive moments I conclude they don't want to get into areas more specialised than their experience or knowledge, and may they may not be able to give appropriate responses to queries.
 
Ditto to @AndBreathe. Our lot (including our optician when he needs to refer you to the hospital eg cataracts) have to put a thing like a credit card into a slot on their computer keyboard, to access the hospital system, then choose which bit they need to access. Then remember to log out of it to access their own again.

Never done without an audible sigh!
 
Glad to hear it is not classed as serious. Those statistics about over 60s, 70s and 80s are interesting. I was not aware of that.
 
I am surprised to hear blood tests do not get sent to GPs. Mine when I have them are done by GP though so they are sent back to them by our hospital. They normally go through them and phone if there is a serious problem or write if it is routine.

I can access them on the nhs.app but probably not a good idea for an anxious worrier like me. These are results from tests GP has requested though so I suppose if hospitals are doing them it would be different.
 
Maz2 said:
I am surprised to hear blood tests do not get sent to GPs. Mine when I have them are done by GP though so they are sent back to them by our hospital. They normally go through them and phone if there is a serious problem or write if it is routine.

I can access them on the nhs.app but probably not a good idea for an anxious worrier like me. These are results from tests GP has requested though so I suppose of hospitals are doing them it would be different.
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It is not the one order by GP , it is the ones ordered by and taken atbthe hospital. I had bloods taken in April in A&E, flowing a faint resulting in head injury. A few weeks later I ha an abnormal result take for my GP and asked what was it when I had bloods in A& E , and told they no access to them.
 
If I have blood drawn by my GP surgery for a hospital test (sometimes my thyroid monitoring just falls on time with my GP annual tick box exercise, then the results go to both GP and the hospital clinic.

If the blood is drawn by hospital phlebotomy or in clinic itself, they stay within the hospital and are not reported back, directly, to my GP.

It's all a game. 🙂
 
trophywench said:
I eventually had my appointment with the Haematology consultant yesterday. What I've got is CLL - BUT that is no longer considered to automatically mean cancerous, simply chronic raised lymphocytes - which apparently 10% of adults over 60 have, 20% of over 70s, 30% of over 80s etc etc. There is a rare complication, so they need to do a specific blood test for that to find out whether I have that or not, so they took the proverbial armful - will get another appt in approx 8 weeks-ish when they'll tell me the results - if it is that, they will prescribe tablets and continue to monitor me, if not, no treatment necessary or possible so will be signed off.

Nice, approachable lady so I asked her something. Told her that years ago the diabetes 'press' used to say if you were anaemic, the HbA1c test wasn't reliable therefore a test for fructosamine content of blood should be carried out instead, so is it the same with high lymphocytes? Answer - Yes that's still exactly the same with anaemia but you are definitely not anaemic nor do increased lymphocytes affect the normal test.
Click to expand...

Hi trophywench, I don’t post on here much these days but the subject of CLL always stirs my interest having had it for over 12 yrs and onto my second round of treatment (now oral chemotherapy). CLL if diagnosed by a blood test called flow cytometry is most certainly a blood cancer but it sounds as if you may just have lymphocytosis at this stage (raised level of lymphocytes) and that’s a condition called MBL.
Monoclonal B-cell lymphocytosis (MBL) is a condition where there is an abnormally high number of identical B cells in the blood. MBL is asymptomatic and doesn't require treatment, but it can be a precursor to chronic lymphocytic leukemia (CLL).

CLL is very heterogenous and when contracted much later in life can be more indolent and never require treatment. However, for some it’s more aggressive especially if diagnosed earlier (I was early 50’s). It’s essentially a cancer of the immune system.

Hopefully it will be indolent for you or easily manageable but obviously be more careful with infections. I know from bitter experience and many hospital admissions that CLL and diabetes don’t play nicely together!

Best wishes, Amigo
 
Thanks @Amigo - and sorry you have CLL but glad you are having treatment for it though it's always a B when any cancer can't just be one lot of treatment and that's that. Can't actually cut blood cancer out and incinerate it, after all. (Sigh)

I hope mine isn't that - and the consultant doesn't think it is either. So - we await results and if I have trouble interpreting what's said or what they mean - I hope you won't mind me asking if you know - though I hope I won't need you to!
 
Hi Jen, sorry to hear you have "one more thing" to contend with and keeping fingers crossed that you have the benign version.
 
trophywench said:
Thanks @Amigo - and sorry you have CLL but glad you are having treatment for it though it's always a B when any cancer can't just be one lot of treatment and that's that. Can't actually cut blood cancer out and incinerate it, after all. (Sigh)

I hope mine isn't that - and the consultant doesn't think it is either. So - we await results and if I have trouble interpreting what's said or what they mean - I hope you won't mind me asking if you know - though I hope I won't need you to!
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Absolutely Jenny, I meant to add that but I hope you don’t need to either. I’m an admin on the huge international site and over a long period have had to learn a great deal about CLL.
I’m afraid with CLL being incurable, it’s always a matter of trying to tame it into remission for as long as possible. Thankfully there have been masses of developments since I was diagnosed because my life expectancy wasn’t much beyond 10 yrs back then! Feels like trying to push the tide out some days.
The average age of diagnosis for CLL is actually 71 but we have members as young as in their 20’s. It’s a wide range and for a third, they never need treatment and die with it not because of it. Sound like you’re awaiting the results of a flow cytometry. I’m sure all will be well. The haematologist will already have a fair bit of info from your labs and sounds reassuring. Boring is always best with CLL 😉
Just a word of advice, even if it’s MBL, they’ll be some degree of immune compromisation so watch your skin. The condition increases skin cancer risk by 8 to 12 times. I’ve had a malignant melanoma due to immune dysregulation and have never been a sunbather! Resolved early enough thankfully. Incidentally, anaemia has never impacted my Hba1c levels either.

Best wishes.
 
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