Pernicious Anaemia Society
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Treatment update

I spoke to one of my doctors today to discuss my recent blood tests. well as expected I didn't get anywhere

I explained that since last June my levels of b12 vitamin D folate had dropped and I felt ill and gave a list of symptoms . Saying that it looks like I have a absorption issues

Well I was told that my levels remain in range and they don't treat at my levels . She said to buy vitamin D from asda she didn't recommend self injecting vitamin b12 and wouldn't discuss folate she said they wouldn't treat b12 until it reaches 120 range she said as my levels boasted last May after taking vitamin c I should just take that again.

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Hi pet-lamb I am so saddened to read this.

Did you manage to quote the references from The British Society for Haematology and the N.I.C.E guidelines on the treatment of B12/Folate deficiency?

You may want to consider joining the Pernicious Anaemia Society - click on the link below and scroll down

healthunlocked.com/api/redi...

It costs £20 for a year's membership and they will be able to give you the best advice as to your next steps.

Take care now.

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Thank you clivealive yes I brought up the N.I.C.E guidelines and NHS protocols she asked me where I was getting my information and I quoted them and mentioned health unblocked .she claimed the guidelines I mentioned weren't NHS. And said I new more than she did on the subject. she asked me why I thought I have a absorption problem. so I said I'd read that the elderly and people with thyroid disease( there are others)can't absorb these vitamin well because of low acid in the stomach and reminded her that my levels had dropped considerable she said everyone's levels drop in winter .i argued that over 200+ units in less than 12 months is a significant drop as is the drop in the other ranges .As she continued to deny me treatment I said I'd self inject b12 and by my own vitamin D etc that was recommended in the protocols In the end she said she could organize more bloods tests in 3 months time. I said that might help to see if my vitamin d had risen but it wouldn't help with the b12 as it wasn't recommended after treatments had started .I asked for a trial of b12 loading doses but was refused I asked for the first b12 injection to be administered at the surgery in case I had a reaction she refused. she said they wouldn't treat anyone with a B12 over 120. Protocols for this area are 150 or under if going on levels. At this point I gasped and told her that was too low and that I wasn't waiting another 3months for treatment feeling ill as this has been going on almost a year at least. She invited me to visit the surgery it was at this point I ended the phone call because when I asked if it was to discuss this further she wouldn't say.

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I think you do need to join the P.A. Society or find a doctor who knows who N.I.C.E are - they are the people who instruct doctors on how to treat patients. Ugh!

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Thanks clivealive yes as a retired nurse (mental health) I could have told her but I think my doctors are just not interested in my health problems unless it's something like my recent injuries (i twisted my knee in September picking hazelnuts 😘 )they certainly don't like me knowing more than they do on any subject I'm sure it gets their backs up no matter how diplomatic I try to be. but yes I will join the P.A society.

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This seems to be a new trend - the range is 150 - but they won't treat (in your case over120)

I saw, somewhere, that in my area, although the range is 180-1000, they are not treating over 150. Has anyone else noticed this.

clivealive is right - very ugh.

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Different labs will have different ranges.

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Hi fbirder

I will try and find the reference - it said (I think) to only treat under 150 although the range here is 180 - 1000. Of I may have misread it.

However I was only able to get 5 loading injections, a retest, and we will see you in 9 months, this with B12 of 103 and severe neurological symptoms.

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That's sad. At least in India, doctors usually get alarmed if your B12 is under 400-500. I have recently been diagnosed with B12 deficiency (206) and been given 10 injections - twice a week. I am a Vegeterian and eat eggs once in a month.

Few of my symptoms have gone - Burning sensation in hands, left arm, left leg, just over upper lip, shoulder blades and twitching left eye, shortness of breath, tingling sensation in fingers etc

For 2 weeks, I had mild/dull chest pain (My ECG and blood reports are normal) and I am as of now dealing with anxiety/depression - thanks to chest pain. My 10 jabs are done and would now get blood report done next week. Dr said, he might put me on tablets for some time now till my symptoms are gone.

One thing that I have learnt: B12 deficiency is NOT an easy thing to fix. Even though my blood must be having a high level of B12 (Post 10 injections), all my symptoms ain't gone yet (Anxiety and disturbed sleep)

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Thank you linkerror yes it's sad that someone untrained in bloods and vitamin mineral deficiencies should have to research and self treat and medicate themselves due to professional indifference or out dated guidelines. I'm pleased you're feeling better now except for the depression anxiety I hope they improve soon .As for me I joined the PA society last night. I intend to source b12 k2 and vitamin D and anything else I need and self treat. This is a big step for me because I hate taking medication of any kind. My symptoms include

Burning tingling from knees down to and including both feet.

Tingling tongue and roof of mouth

Light headed

Tired falling asleep during the day breathlessness increased heart palpitations

To name just a few but I also have hashimotos and under active thyroid

And osteoarthritis and my vitamin D is low at 48

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