We’ve been contacted by a journalist working for a National Newspaper in the UK who is looking for someone who had itchy skin as one of their symptoms of Pernicious Anaemia.
Here’s what she says:
“I am looking for a case study of a person with pernicious anaemia for whom one of the main symptoms was itching skin. I wondered if you might have any members of your organisation who might be interested in talking about their experience and raising awareness of PA and that the symptoms can often be difficult to pin down and can make a diagnosis a lengthy process”.
The interview will be via the telephone and you will be paid for your time.
Please note ONLY MEMBERS OF THE PERNICIOUS ANAEMIA SOCIETY can be recruited.
If you are interested please email re******@pa***.uk
The deadline is Thursday 22nd March. Thank you in advance!
I am a very new Member. Have been appalled and saddened to read such dreadful treatment by those who could change peoples lives. My own, and family and friends have experienced difficulties also.
It really needs a serious dose of investigative journalism and lobbying doesn’t it?
Keep up the amazing work Martyn et Al. Hope to get to meeting on 7th April.
Have emailed as possible case study (al**************@pa***.uk ; prob. not) No pay necessary would donate.
Kindest good wishes and regards
Eve.
Hi
I am concerned I have pernicious anaemia – my B12 is low and GP has prescribed folic acid as folate very low. I have itchy dry skin along with lots of typical
Symptoms but GP says will not give me B12 injections as NICE guidelines do not allow if over 180
My level was 220 and has risen to 280 after taking
Oral spray for months. I know I don’t feel well.
Can you advise where I go from here
I have seen severe B12 deficiency, with a wide range of neurological, psychiatric and physical symptoms, in someone whose B12 level was 260 pg/mL. (1) So a level of 220 does not rule out deficiency by any means. As Martyn Hooper says, the B12 test is next to useless. Far too often it falsely reassures the doctor that there is no deficiency. I am conducting a systematic review of the standard B12 test compared to methylmalonic acid (MMA) as a reference test. So far, in ALL studies I have reviewed, the standard B12 test detected less than 50% (and sometimes a lot less than 50%) of people who had abnormal MMA levels. (2)
NICE guidelines should be used as guidelines. There is no such thing as guidelines ‘not allowing’ doctors to prescribe B12. They could check for intrinsic factor antibodies [positive in 40-60% of patients with pernicious anaemia, but not in other causes of B12 deficiency], and for coeliac disease. Both are blood tests. Also, they could carefully document your symptoms before and after start of treatment. If your symptoms improve significantly, this provides further evidence of B12 deficiency.
However, it will take many months for your B12 levels to fall below 180 so you can get a diagnosis. If you can’t get a diagnosis any other way, continuing to buy your own B12 is probably the best strategy. Make sure you get at least 1,000 micrograms daily as a sublingual or oral dose. Methylcobalamin or hydroxocobalamin the best form to get. Cyanocobalamin releases cyanide 🙁 and certainly people with kidney problems or smoking-related eye disease (Leber’s optic atrophy) should not take cyanocobalamin.
All best Linda and so many others who have undiagnosed B12 deficiency. It is a huge public health problem that no-one is willing to tackle.
(1) RIETSEMA, W. J. 2014. Unexpected recovery of moderate cognitive impairment on treatment with oral methylcobalamin. J Am Geriatr Soc, 62, 1611-2.
(2) RIETSEMA, W. & WORTHINGTON, M. 2018. How Sensitive Is the Total B12 Test for Diagnosis of B12 Deficiency? A Systematic Review. Age and Ageing, Accepted for publication.
I had Itchy skin and other symptoms. My B12 level were around 68!
Visited 6 doctors for diagnosis..but no success. Finally I did it