Yet again I feel in limbo! I am yet to have a diagnosis but am awaiting homocysteine and MMA test results from the haematologist. I was self injecting twice a week in October and by the end of October I managed to go for a short run. I had the haematologist appointment come through for start of December so stopped my SI at end of October (in a vain attempt to not skew results knowing that a month is probably not enough time). I was honest with the haematologist about SI but he frowned upon the high frequency of dosing because of potential for low potassium levels. I'd have thought the logical approach would be to tell me to keep going on SI and they'll test my potassium. No! His letter to GP stated "do not increase frequency of B12 above once 3 months". So here I am back in limbo feeling worse than ever - peripheral neuropathy feet, legs, hands, arms, face; so so tired now I can barely function; head tightness and deafening tinnitus etc etc.
I'm off to the GP this morning to discuss as my other half is becoming more and more reluctant to inject as she sees it as me bleating on about "my illness" all the time with very little other evidence to support it.
Deep down I think I should go back to SI and listen to MY OWN body, but I am very worried about low potassium (although I drink coconut water and eat bananas and have low salt now).
Just looking for a bit of support and encouragement from you guys and I feel so alone and sense I am slipping into a dark place.
Written by
Rheadster72
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I can't believe that the haematologist said that about potassium.
B12 can cause low potassium, but only for a short period, and only if the patient had been suffering from macrocytic anaemia.
When B12levels are raised to a useful level the body goes into a burst of red cell formation (reticulocytosis). This can use up potassium faster than normal. But once that burst is finished the body's requirements for potassium drop to normal.
I have been taking 400 folic daily while taking B12. Haematologist incidentally gave me 5mg daily for 1 month plus other B vitamins (except B12) to help with my energy levels! I know, I was shocked at that too!
Been to GP now who seems to enjoy his conversations with me and is fine testing my potassium levels and is also fine with me doing monthly SI. He also had a few thoughts on potential other conditions so left me to go away and think. At least he listened and gave rationale thoughts.
When I had exhausted all possibilities of NHS treatment I chose to self treat.
I was scared of the dementia type symptoms and pins and needles in my spine. Many of my symptoms disappeared or improved which was confirmation for me that I had B12 deficiency.
BNF/NICE link below mentions possibility of hypokalaemia (low potassium) during initial treatment. I cannot find any mention of a continued risk after initial period but I'm not medically trained.
I think Martyn Hooper has talked about the strain PA and B12 deficiency can put upon relationships in his books. There is a section on PAS website for Carers and Family.
(His letter to GP stated "do not increase frequency of B12 above once 3 months")
Very surprised by haematologist's comment above as BNF and BSH Cobalamin and Folate Guidelines mention 2 monthly maintenance B12 jabs for those with neuro symptoms.
Do you have a follow up appt with haematologist? I have taken a copy of BSH guidelines with me to appts.
I have sometimes written polite, brief as possible, letters when unhappy with an appt.
Link below about writing letters to doctors about under treatment of B12 deficiency with neuro symptoms.
PAS can offer support and info about PA. Probably best to ring. They are busy at times and may not have resources to help non-members. PAS membership costs £20 for a year.
I think PAS local support groups can be a great place to talk to people who understand B12 deficiency. Not every PAS member has a PA diagnosis, partly due to difficulty in getting a diagnosis.
Person who runs B12 Deficiency Info website can be contacted by e-mail. Details on website. She also organises occasional "B12 Pop-up Cafes" in Leicestershire.
Thanks SleepyBunny. To be honest I get fed up repeating myself to the various healthcare professionals. Having seen the GP today I am going to try a positive mental attitude and (along with a bit of SI of maybe 1 per month) try and live as normal a life as possible and hope it all sorts out!
The GP this time was quite understanding and thankfully had time to chat through things. It is a shame though that you get so many different opinions on this from the different healthcare professionals that my own thoughts on my condition get muddled. Also not having a firm diagnosis adds to my hesitation.
Sleepbunny, out of interest, and I know everyone is different, but what regimen/frequency did you start off with when you started SI and what frequency do you do now? Thanks
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