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.
Written by
marigold22
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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.
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.
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.
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