WBC dropped again

[davtay]

I was wondering if I could get a little advise.

I have Throbocythemia which is JAK2 positive , atrial fibrillation, lupus and have had 4 strokes in the past 3 years

Just recently I’ve been feeling really tired and lethargic I go to bed tired and wake up tired , I went to my GP on Tuesday who advised me to go my local A&E

Blood test were carried out and for the 3 FBC in 3 months my white blood count has dropped 2.6 9*7 whatever that means haemoglobin level 112g/l

All my doctors seem to be holding back info from haematology down to my GP.

Would anybody have any idea of questions I could ask or info I should request as my wife is getting very concerned.

[MaryF Administrator]

Hi, I think it would be a good idea to send an email to the secretary of your Haematologist, marked for the consultant's attention asking them if they could urgently forward any test results or letters to your GP as a matter of urgency. Keep it short and concise, and do mention how unwell you are. You also need them to explain your blood results, or get the GP to do this. Unfortunately there has been a lot of cutting back in terms of clerical support in the NHS, so it may just be delayed.

As well as your current tests, it might be an idea to ask your GP to look at your vitamin D, B12, Folate etc and your Thyroid, as any of these not being good enough can make you more tired. If your Haemoglobin is bit low, they will certainly discuss that with you.

You could also copy your email to the practice manager at the surgery, so they can see you are trying to get hold of your paperwork.

MaryF

[davtay in reply to MaryF]

Thank you for such a quick response Mary

B12 levels are normal at 481 ng/L , Folate is low at 3.05 ug/L serum C protein level is 11mg/L which is abnormal apparently. Red blood count is low at 2.71 also my MCV and MCH volumes are high to be honest all the above means nothing to me.

I shall call haematology dept tomorrow and try and get hold of the lead consultants secretary and try and get a meeting if possible.

[MaryF Administrator in reply to davtay]

Low folate can indicate Pernicious Anaemia, (B12 deficiency), have a read of this, worth asking your GP to look into it: nhs.uk/conditions/vitamin-b...

MaryF

[davtay in reply to MaryF]

Thank you Mary

[KellyInTexas Administrator in reply to davtay]

Has your Hematologist checked you for a condition called hyperhomocysteinemia?

I did test positive for this also. Not genetic as I understand it from my Hematologist.

I am prescribed 1 mg methylated folic daily. It is important it is methylated.

You might ask your Hematologist about this?

It is an added clotting risk.

[Lure2]

Hi,

I have read you are triplepositive incl Lupus Anticoagulant and also that you are on Warfarin and I wonder how your INR behaves?

The INR is very important as we have too sticky blood and not all Doctors understand that we must keep a steady and rather high INR to feel ok. I am also triplepositive and live in Stockholm and I need an INR around 4.0 to reduce my risques to get symptoms back.

That is why your GP is not the most knowledable person to understand APS but I hope you also have a Specialist of autoimmun illnesses who is taking care of your Warfarin-issues.

[davtay in reply to Lure2]

Good morning Lure2. Yes my INR readings are all over the place at present 5.2 but needs to be at 4.5 so there close.

[Lure2 in reply to davtay]

An INR of 4.5 is a rather high INR. Can you selftest to make it easier for yourself or do you only take vein-tests at a lab? Do you have a Specialist to talk to?

[davtay in reply to Lure2]

Vein testing only sadly machine are so expensive and test strips costs are huge. I see my haematology doctor at the end of the month just seems a long time to wait for a possible explanation.

I think there thinking of 4.5 INR is to try to prevent atrial fibrillation and further Strokes well that’s my understanding any way.

[Lure2 in reply to davtay]

How often can you veintest at a lab? That is the only way for you to know if the INR is too high or too low.

Prof Huges always say that we do not bleed from APS but clot, but we can not go too high in INR for a longer time like you on an INR of 5.2 in the vein. I think you should talk to your Specialist if they can find a better option for you as you are not able to

[Lure2 in reply to Lure2]

test more often with your rather high INR. I only know Warfarin-treatment but talk to your Specialist how to avoid bleeds etc. I do not know how old you are. When older we can not tolerate too high INR either.

[KellyInTexas Administrator]

I’m at not familiar with JAK2 positive-so I cannot comment on that.

I will tell you that my specialists tell me that being positive for lupus and it’s associated overlap illnesses very often result in a chronic low total WBC count. I struggle with mine in the low to mid threes. ( 5 being the lowest range of normal.)