I have just finished loading Jabs for b12 deficiency and I have been told I will receive no more injections. My red blood cells were enlarged however my PA test was negative.
I had neurological symptoms, walking into things, dropping things, memory loss and confusion. I also had physical symtoms of fatigue, muscle soreness, basically a zombie. The loading injections have made a massive improvement on my symptoms.
GP has said its my diet however I eat meat and dairy ?!? Do I need a second opinion?
Thanks
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BlueTurtles
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Highlight the bits on page 501 and 502 about AbNegPa - like this bit.
Patients negative for IFAB, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response
Send the printout to your doctor with a letter explaining that you want to be treated properly as "treatment should not be delayed to avoid neurological impairment." (summary Point 4).
There are a few people who do OK on the NHS system but so many for whom it is just not enough.
Before I tried it I thought SI must be terrible but actually it's fine and now I have to do it when I get up or I wouldn't remember whether I'd done my jab or not!
"GP has said its my diet however I eat meat and dairy ?!? Do I need a second opinion? "
Short answer
Yes
Slightly longer answer
If GP thinks it is due to diet, I suggest writing out a typical weekly diet therefore proving you eat plenty of B12 and folate rich foods and enclosing it with a letter outlining concerns about diagnosis/treatment
If you were tested previously for Coeliac, did GP do both recommended tests below?
1) tTG IgA which tests for an antibody to gluten
2) Total IgA which checks which patients have IgA deficiency
People who are IgA deficient will need alternative tests for Coeliac.
Did GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?
One reason for a negative result in Coeliac test is that patient was not eating enough gluten and therefore not enough antibodies to gluten were in the blood to register a positive result.
Any chance of internal parasites eg fish tapeworm?
Do you ever eat raw fish eg sushi/smoked salmon?
One potential sign of fish tapeworm infection is a rise in eosinophil levels. Eosinophils are a type of white blood cell WBC and result for eosinophils can be found on Full Blood Count FBC results
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"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 with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Neuro Symptoms
"I had neurological symptoms, walking into things, dropping things, memory loss and confusion"
Has GP got a list of every neurological symptom you have got eg tingling, pins and needles, migraine, tinnitus, restless legs syndrome, muscle twitches, word finding problems, insect crawling sensation (formication), problems with proprioception ( awareness of body in space) plus others.
I hope your GP is aware of the potentially severe consequences of under treatment. Untreated or under treated B12 deficiency can lead to permanent neurological problems including spinal damage.
If neuro symptoms present, is GP aware that treatment for patients with B12 deficiency with neuro symptoms is more intensive?
GP can find info on UK recommended treatment in their BNF book, Chapter 9 Section 1.2
BNF info is also online. See BNF link up page.
UK recommended treatment for adults with B12 deficiency without neuro symptoms is...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
UK recommended treatment for adults with B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
With neuro symptoms present, have you been referred to
1) a neurologist?
2) a haematologist?
NICE CKS link (up page) indicates that GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. Has your GP done this if in UK?
Other referrals
If gut symptoms present, have you been referred to a gastro enterologist?
Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori plus other possibilities.
Some UK GP surgeries have online access to a summary of results/records. Details will be on your GP surgery website.
Warnings....
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
3) It can be helpful to take a supportive person with you to appointments that might be challenging. It's my opinion that GPs are sometimes kinder if a witness is present.
Help for GPs
May be worth drawing Gps attention to
1) PAS website has section for health professionals. It is free for them to join PAS as associate members.
2) PAS website has section with useful leaflets/articles which PAS members can print out for GPs eg "An Update for Medical Professionals: Diagnosis and Treatment "
3) May be possible if PAS member for GP to talk to PAS. Would need to discuss with PAS first.
"The loading injections have made a massive improvement on my symptoms."
Are you keeping a symptom diary that tracks fluctuations in symptoms over time with treatment?
This may at some point provide useful evidence that the B12 treatment really does make a difference.
"I have been told I will receive no more injections"
Have you asked the GP directly (but politely) why they have stopped your injections?
Knowing the reason why something has been done can make it easier to challenge the decision.
1) Some GPs will stop B12 jabs if B12 levels go above range
If this is the reason, you could show them relevant passage in BSH guidelines that suggests testing of B12 levels after treatment has started isn't necessary.
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