High LDH and increasing

[PiperAlfie]

Hi, this is my first post. i have non cirrhotic portal hypertension (caused by sepsis,4 years ago) with varies in gut stomach and now also oesophagus. Last year, from around March I felt really unwell and I had blood tests taken privately. My LDH was 771. My NHS consultant arranged for further tests to be taken, and told me not to worry as there was no guarantee that I have CLL. However, I seem to have fell through some cracks and have had to chase the results. Since October I have had a telephone appointment booked for February and after I chased the results the consultant has changed the appointment to a face to face. I have established from my consultants secretary that my LDH is now over 800.

What questions should I be asking? Are there specie tests I should ask for? I appreciate its very difficult to comment on one aspect of blood results. I have anemia and also haemolysis.

Any help very much appreciated

[cllady01 Former Volunteer]

PiperAlfie, Welcome and thank you for joining us.

The following link is to an article that explains LDH in an understandable manner and relates it to the areas it is used to assess. And gives the name of a specific test that can give the Dr. information as to the specific area(s) being the source of the rising LDH.

You can get an idea of questions to ask in regard to sorting this out.

medlineplus.gov/lab-tests/l...

Best wishes for getting your more complicated health situation sorted and tended to.

Please keep us posted.

[PiperAlfie in reply to cllady01]

Thank you

[lankisterguy Volunteer]

Hi PiperAlfie,

-

From your post, it is difficult to tell if a doctor has diagnosed you with CLL?

-

Normally when there are strange blood test results,

patients are referred to a haematology specialist

and that doctor uses a FLOW test for Immunophenotyping

to identify the typical characteristics of different types of blood problems or cancers.

CLL is one of about 60 different blood cancers/conditions.

cllsupport.org.uk/informati...

cllsociety.org/2016/03/diag...

my.clevelandclinic.org/heal...

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A high LDH is a broad measurement indicating that many cells in your body are being disturbed/broken/killed, so it is not specific to blood cancer or even cancer in general.

-

Len

[PiperAlfie in reply to lankisterguy]

Thank you Len. The gastro/liver consultant said (over the phone in October) “ that is not not definitively CLL”. He would order more tests, run the results past haematology . There was a mix up with the bloods or it was if no tests were taken or the results lost so no one got back in touch. I chased and had to go for a further round of tests. Last week it was confirmed that all the results are now in and rather than calling me to discuss he has made a telephone appointment that was organised October into a f2f. I accept that the blood results I have are not straightforward and it is not clear what is wrong. I also agree with you that it may not be CLL or any kind of cancer. I have had nasal cancer in the past and am recovered.

[AussieNeil Partner Administrator]

So you have two issues for your consultant; what's causing haemolysis (and how is this corrected) and do you have CLL?

Determining and addressing the cause of your haemolysis is your highest priority, so good on you for getting that F2F appointment next month. Your haemolysis is also probably responsible for your high LDH readings. There's a higher concentration of LDH inside blood cells than in blood plasma, so when blood cells are destroyed e.g. through haemolysis, the concentration of LDH increases in your blood test. ncbi.nlm.nih.gov/labs/pmc/a... I expect your consultant will order additional blood tests, including a Coombs/Direct Antigen (DAT) test to see if you have Autoimmune Haemolytic Anaemia (AIHA).

CLL does put you at higher risk of developing autoimmune blood conditions, where usually it's the red blood cells or platelets which are attacked, but neutrophils can also be destroyed. CLL disrupts the helper T cell process whereby healthy B cells that develop with antibodies that attack body cells are normally sidelined. I expect your consultant will order an immunophenotype flow cytometry blood test, which checks if there's a monoclonal population of lymphocytes (blood cancer) and examines the pattern of specific CD markers on these to determine which blood cancer it is.

So your questions, which I expect would spread over a couple of appointments. would be along the lines of what's causing your haemolysis, how will it be treated, do you have CLL and if so what stage are you at and how will it be managed.

Neil

[PiperAlfie in reply to AussieNeil]

Thank you Neil, this was really helpful. It’s been dragging on now for ages. I kind of thought something was wrong when the private clinic I went to originally told me to go to NHS! I think I would’ve happpy just to get an answer to why I am feeling under par. I have undergone 2 sets of further blood tests since the initial private ones . These results are definitely with the consultant (I asked the secretary) and he has discussed them with haematology . I don’t have long to wait now for the results thank goodness.

After reading your response I checked and my lymphocytes are slightly low (1.1) . Not sure if that makes any difference.

Thank you again for your response, I like to be prepared for the consultation . Janice

[AussieNeil Partner Administrator in reply to PiperAlfie]

You are very unlikely to have undiagnosed CLL with a low lymphocyte count.

[PiperAlfie in reply to AussieNeil]

Thank you again Neil. This has been very helpful .

[Jm954 Administrator]

Haemolysis will cause a raised LDH and haemolysis is a serious condition as it can vary significantly in its severity. If you have had a blood test and a consultant face to face appointment I'm hoping that he will have seen your results and will act if there is anything worrying. Thankfully, February is around the corner. Let us know what the outcome of your appointment is.

Jackie

[PiperAlfie in reply to Jm954]

Thanks Jackie. As you say Idon’t have long to wait