Advice

I was diagnosed with a B12 deficiency at the beginning of January. I've had all my loading doses. My symptoms came back last week after feeling better for a few weeks and I went to the doctors today. he said it was a placebo that I felt better and you wouldn't expect to feel better for a few months. He said there was no way that what I am feeling is down to b12 but even though my symptoms are that. Any advice welcome xxx

7 Replies

oldestnewest
  • Hi,

    I'm sorry you are not feeling well. It is possible that you may have run out of B12 but more likely you may now have become folate and or iron def and the injected B12 on its own is not helping you now. B12 and folate and iron (and other B vitamins) are needed in good supply for good blood production. Taking a good multi vitamin can help. It is not uncommon that when starting B12 treatment the storage of folate and or iron depletes because of the increased demand with the newly added B12. Also other conditions such as thyroid should be checked as they are common with PA/B12 def.

    If you are not doing well on current treatment then it should be investigated as to why so I'd walk out the door mat at the surgery, insist on a referral to a haematologist if not taken seriously as recommended see:

    cks.nice.org.uk/anaemia-b12...

    Symptoms persist despite maintenance vitamin B12 treatment

    What if a person is still symptomatic despite maintenance vitamin B12 treatment?

    •If a person's symptoms recur before the next injection is due, seek specialist advice from a haematologist.

    Basis for recommendation

    •Some experts acknowledge that there is a small group of patients who report a recurrence of their symptoms earlier than 3 monthly.

    ◦CKS could find no guidelines or evidence on the management of this group.

    ◦Feedback from expert reviewers differs with regard to whether or not more frequent intramuscular injections of hydroxocobalamin 1 mg are required, and if they are, what regimen to suggest.

    ◦In the absence of evidence and expert consensus, CKS suggest seeking specialist advice in this situation.

    I hope this helps,

    Kind regards,

    Marre.

  • Thank you. My doctor was quite dismissive and almost had a smirk. I had to mention folate and then when he looked at my bloods he said he would give me 5mg of frolic acid for a month and then 400mcg for maintenance. I also mentioned about a haematologist and he said no he would be referring me for a camera down my throat as there must be something wrong with my digestive system.

  • Seeing a gastro will not do any harm, could be very helpful. Not nice procedure but over and done with in 10 minutes, its more the prep that is a bit boring if its a double dip..hum, will not go into detail just jet. But its OK. Seeing a gastro can help give explanations as to why you may be B12 def.

  • Unfortunately Danniih21 you are among so many people on this forum experiencing this treatment from some GPs and you have to decide whether to fight your corner, which is stressful, or self treat if three monthly injections are not adequate. My relative with severe B12 def. and neurological symptoms has been struggling for months to get more frequent injections, but we have both now found that Jarrows B12 5000 mcg dissolved under the tongue effective - in her case improving numbness, tingling and glossitis. Some people find sprays, patches, etc. work better for them.

    The link in the latest research document gives info on when to refer to a specialist and also a helpful summary if you think GP might listen !

    cmim.org/pdf2014/funcion.ph...

    (I hope it works - it doesn't always)

  • Thank you so much for posting this link! I had bookmarked the brief summary but at that time subscription was required for full article and I hoped it would soon be accessible. Leilani

  • Thank you for your support everyone. If the symptoms become to debilitating I will self inject. Otherwise I am going to play the game and hope for the best......

  • That's really upsetting- I had the same experience with a GP and neurologist. It was a "coincidence" that B12 helped my B12 deficient symptoms! Really?! I decided to come straight out and say that if they had an alternative explanation I would be very willing to hear it- nothing. I brought up the issue of placebo and said I was aware they may well think it was placebo and if it was, it was one hell of a placebo! But that I was not willing to take that risk with my health and stop B12 after the improvement I had had.

You may also like...