Urgent Help please for Lady with Polycaethemia Vera - she is getting worse

[marigold22]

Can anyone help PLEASE ? URGENT help needed.

I am posting for a friend as she is very ill. She has not managed to move forward with her health in at least two years. She has given up with her GP as she has not found her to be at all helpful or understanding. In desperation, she sought out a psychiatrist, who only gave her anti-depressants.

She has a genetic blood disorder in her family called Polycaethemia Vera, along with kidney problems and thyroid problems. But getting someone to test her is a nightmare.

Her RDW is high and she says this goes with deficiencies but worries her so much as her heart feels like it shakes rather than beats.

Her Vitamin B12 was around 200 on June 2017 blood test. But despite not taking any supplements or eating any greens, it is now around 400.

Her Ferritin is still on 19 and optimal is 70. Plus the NHS have discharged her from the Iron Infusion Clinic.

She also has low Vitamin D and low Folate.

She is dizzy, short of breath, ridiculously weak, shaky and has stomach pain..

Her anxiety is off the scale and is absolutely exhausted.

She told me that the fermenting in her belly is back. It adds to her anxiety and low mood . She said : “I feel like I need to cut it out with a knife”.

She is stumped and says “ I can’t be making all these symptoms up. I’ve got weaker this last couple of days.”.

After giving up with her GP practice, she started along the private route by paying for blood tests. But as she says, she is now stumped by it all.

Thank you to anyone who can help advise in any way. I have warned her that she may need to get herself to A&E (preferably 4th January if she can hang on that long) in order to be taken in as an In-Patient, to get as many blood tests, scans etc as possible.

[Sleepybunny]

Hi,

Sorry to hear that your friend is having a hard time.

Might be worth her joining and talking to PAS (Pernicious Anaemia Society) if she wants more info about low B12 and PA.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

"Her RDW is high"

High RDW can be a sign that blood has both microcytic (small) and macrocytic (large) red blood cells. Microcytosis can be found in people with iron deficiency and macrocytosis can be found in people with low B12 and/or low folate.

labtestsonline.org.uk/under...

Has she had a blood smear, also known as blood film? May be able to get this done privately.

patient.info/doctor/periphe...

labtestsonline.org.uk/tests...

HDA patient care trust

hdapatientcaretrust.com/

UK charity that offers free second opinions on medical diagnoses and medical treatment. I think they use a network of specialists across UK.

Lots more B12 info in pinned posts on this forum and on B12 Deficiency Info website

b12deficiency.info/

I have written some very detailed replies on the forum, may be worth searching for them.

B12 Deficiency Symptoms

pernicious-anaemia-society.... See Checklist PDF on right of page.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk factors for B12 deficiency and PA

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

UK B12 documents

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BNF Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

UK charity that supports people with polycaethemia vera plus some other blood conditions

mpnvoice.org.uk/contact-us/

I am not medically trained.

[fbirder]

If your friend has been diagnosed with polycythaemia vera then B12 isn't a cause.

Abandoning professional help is a really bad idea. There are no home remedies that will fix the symptoms. No private blood tests will provide any useful information.

Your friend needs to have the PV treated. That means going to see a GP immediately. At this time of year that may be difficult, so I would get to A&E as soon as possible. They will be able to give a temporary fix to the problem (too many red cells) and suggest seeing an expert who can look into long-term management of symptoms.

Failure to get proper treatment can be fatal. Deep vein thrombosis is a distinct possibility. My grandmother had PV and that's what killed her.

[marigold22 in reply to fbirder]

Thank you both, Sleepybunny & fbirder . My friend abandoned professional help as her GP was extremely unhelpful. It seemed that her GP did not know what to do with her. I actually met her on the Thyroid Forum; I personally have fully recovered from hypothyroid, and she was searching on the thyroid forum for help with her thyroid. After many private messages over a week or so, I picked up that in fact her thyroid was not the main problem, but it was her blood. I have advised her to get herself to A&E so that hopefully she will taken in as In-Patient and get immediate help. I don't think she fully realises how desperately ill she is. She has an 11 year old son, is a single mum and her own mother has ditched her. A very sad story.