Haematologist / outcome

[lynnwin]

Hi I have just seen a professor of Haemotology in Cambridge UK

I asked for a referral from my GP as my B12 has be sky high at 2000 for 9 years and my ferritin is high .. I suffer from peripheral neuropathy and have had it since 2003

But recently had a flare up ..

The haematologist is saying I could have a hidden cancer and also noticed my lymphocytes are over range although I did flag this with my GP and he said it’s from the infection I had ?? He suggested a body scan and blood slides .. Has anyone here been diagnosed with a blood cancer in respect of a high B12 and lymphocytes?

I don’t have any symptoms apart from my neuropathy which is driving me mad .. Any input would be great thanks in advance xxxxx

[EPguy]

Have you checked all the foods and vitamins you're taking. Excess vitamins can add up hiding on the labels of many things as I discovered. You're 2x the upper limit if they use the same scale as my provider.

Have you done a B6 test? It could be your B6 is also high. This is a less common test but B6 is toxic at high levels and can cause neuropthy. I was 4.5 X over upper limit while my B6 intake was not that extreme. But I was surprised how many things I ate/took had B6 in them.

B12 is not supposed to be toxic in the way B6 is, but your accumulation of it seems similar to mine for B6.

[lynnwin in reply to EPguy]

Hi yeah I haven’t even had gluten free cereal because of the vitamins ( I’m coeliac )

I’m normally deficient in b2 b6 but my B2 came back ok this time and I forgot to to my B6 .. so I will be adding that to my next tests .. as I’m taking folate now as although in range apparently it’s low at 6 ?

I am careful with foods being a coeliac I check everything . I do eat mainly red meat I don’t like chicken 😞

I will retest soon and add b6 thank you xx

[EPguy in reply to lynnwin]

I understand you're looking at possible blood cancers. Is there a suspicion of MPN? If so high lymphocytes can be one indicator. But one or both of hematocrit and platelets should also be high.

I haven't checked B12 info till now, this comes up-

"Conditions that can increase B12 level include:

...Myeloproliferative disorders (for example, polycythemia vera... "

mountsinai.org/health-libra...

But you need more blood test results to go down the PV route.

I can't find any similar info for B6.

[lynnwin in reply to EPguy]

Yes saw a professor of haematology today he said not PV .. my haemocrit is top of range platelets fine my ferritin is high .. and my lymphocytes high which my GP put down to infection my red cell count is high .. He is saying I need a blood film and free light chains ..

I will check my B6 thank you x

[AndyT]

I don’t know my B12 level but as far as I’m aware it’s not raised.

I do have raised lymphocytes however, initially diagnosed as monoclonal b-cell lymphocytosis, which isn’t blood cancer, but now confirmed as chronic lymphocytic leukaemia, following a further increase in my lymphocyte count and genetic testing carried out by my haematologist.

I still have ET, diagnosed in 2003 and there’s apparently no link between that and CLL, just a rare coincidence that I have two separate types of blood cancer!

[Arami]

Hi, my B12 levels had been high, in the 2000 range since I was diagnosed with MF. Same for lymphocytes and ferritin. I was told that the high levels are due to the disease. Wishing you best of luck!

[lynnwin in reply to Arami]

Hi thank you for your post .. would you mind telling me what symptoms is any before your diagnosis? Can you have stem cell transplant for that ? Xxxx

[ainslie]

B12 often appears raised in PV but it’s not really raised, there are several tests for B12 and one can show raised and the other may not with PV , however I note you have been told it’s not PV.

Hopefully you will have a clearer diagnosis once your prof runs the suggested tests

[lynnwin in reply to ainslie]

Hi thank you for posting .. I’ve had no testing for PV but the haematologist said yesterday it’s not PV ? I’ve had b12 blood test and active b12 my b12 has been at 2000 since 2015 😞 xxxxxx

[ainslie in reply to lynnwin]

yes Active B12 is the one i was trying to remember, I know little about Hemochromatosis but wondered if thats been ruled out?

If it were me I would keep the pressure on them to test until you are satisfied with the answers you get , sometimes if they dont know the answer they can fob people off a bit.

Many of us here had MPN many years before diagnosis and had lots of symptoms and sometimes unusual bloods and were told there was nothing wrong only to be diagnosed eventually. In my case it took 2.5 years of seeing multiple docs at multiple clinics before I was finally diagnosed.

Hopefuly in your case they will find a more innocent cause , however nothing will take the place of persistence , you deserve and need a clear diagnosis.

[lynnwin in reply to ainslie]

Hi thank you for your reply

I did ask about haemochromatosis and he said NO .. what annoys me my b12 has been at 2000 since 2015 my GP never flags it just puts normal no further action 😡 and my ferritin is increasing now 516 and top of range 150 .. I’ve only pushed things as I have neuropathy.. That in itself is driving me nuts .. other than my neuropathy I don’t feel poorly .. He did mention MF I was thinking maybe PV but he said no

Xxxxx

[ainslie in reply to lynnwin]

my two cents is that asking people like us on here can be useful but also can put your head in a spin as we dont have the answers to your situation which is a bit of a puzzle, we are not docs, its a bit like Google it can be good and bad and sometimes hugely misleading , okay for simpler things perhaps so dont let any of the answers youve had on her worry you, I think the answer is to keep at the docs to get a correct diagnosis, there has to be one,

[lynnwin in reply to ainslie]

Thank you xx

[RCBr]

I think it's very important that you get tested for haemochromatosis. Myself and my ex husband turned out to be carriers of the same gene, and my Son was diagnosed with it at 15yr old. It is important to have treatment...which is regular venesection initially to bring the ferratin levels down.

Note that some people can have both PV and haemochromatosis.

You need to advocate for yourself, and insist on the relevant tests. Otherwise I think I would be tempted to have the initial tests done privately x

Good luck moving forward, but continue to push for an accurate diagnosis.

Note that in the Uk it is not the haematology team who deal with haemochromatosis....its the gastro team. It's just a simple blood test you need to check for it too.

Rachel

[lynnwin in reply to RCBr]

Thank you so much 😊 the haematologist said it wasn’t haemochromatosis?? Dunno why just looking at my blood test results ? Not recommended a test for it .. Do you know where I can get that done privately?

Many thanks xxxxxxx

[RCBr in reply to lynnwin]

You should be able to get it done at your GP surgery being that you've already had such a high ferritin result.Do you use the NHS app? If you do...fill out at online request for an appt. Tell them the ferratin level...explain any symptoms and request the blood tests also reminding them of your other issues.

Ask them to test for haemachromatosis and if they refuse put in a complaint.

To go private your GP can refer you to your most local private hospital .

It can be difficult advocating for yourself, but it is often necessary these days due to the pressures x

Rachel

[lynnwin in reply to RCBr]

Thank you .. it’s a nightmare and I work NHS as a phlebotomist.. get no perks the haemotologist discounted it on Tuesday .. as I showed him my results and he is writing to my GP to request more bloods and it won’t be for haemochromatosis 😞 xxxxc

[RCBr in reply to lynnwin]

Good that they're requesting more bloods, but still message the GP yourself about the haemochromatosis test. It may not be that but needs ruling out x

[lynnwin in reply to RCBr]

Thank you I will if he won’t do it I will pay private xx