Worsening symptoms on maintenance dose

I developed mild sensory neuropathy about 3 years ago. Mostly permanent pins & needles in feet, occasionally hands, with occasional sharp stabbing pains in feet. Many tests. Spinal scan revealed no significant abnormalities. Nerve conduction studies revealed sensory & motors responses within normal limits. Nutritionist said diet fine. I have IBD but gastroenterologist doesn't think I have an absorption problem. Some B12 deficiency in older relations. Diabetes runs in family.

Original testing in 2014 B12 was 203. They said it was normal range. But I insisted and got loading doses but only the 6 i.e. the regime for no neurological symptoms. The stabbing pains went away but symptoms had not stopped importing when loading doses stopped. Since them 3 monthly maintenance doses.

Lately noticed pins & needles progressing from feet up lower legs. Also in last month.stabbing feet pains have returned. Full blood test results 31.3.17:

Total Vit D (serum) 100nmol/L (>50.0)

Serum folate (42U5) >20.0 ng/ml

Serum ferritin (XE24r) 50 ng/ml (20.0 - 350.0)

Serum B12 level (XE2pf) 1201 ng/1 (200.0 - 960.0)

White blood count 7.9 10*9/l (4.0 11.0)

Red blood count 4.53 10*12/l (3.5-5.5)

Serum TSH (XaELV) 2.69 mlU/L (0.3-5.0)

Plasma fasting glucose level (44g1.) 5.7 mol (3.3-6.0) Doctor said I may be diabetic within a few years.

There are lots of other blood cell things, but not sure how relevant it is? All in normal range.

The doctor is now saying that B12 is normal so didn't need more loading doses with neurological regime. I asked him to consult haematologist. He said today "I've spoken to haematology and

- they can see no logical reason from results why Vit b12 could be causing further neurological problems

- however they admit this is still a grey area and no conclusive proof from studies either way

- there is no actual harm in having a further 3 week loading dose as discussed.

Therefore given our previous discussion I'm happy to support a further 3 weeks of 3 times a week injection (9 in total)" I had said to Dr I thought pointless testing serum B12 since I have maintenance doses.

So I will get more loading doses but they don't seem to think B12 is the issue. I spent quite a lot of last night awake with pain/discomfort in feet. Can any one please give any advice. I am worried about my symptoms.

4 Replies

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  • Serum B12 doesn't mean much if you are on B12 shots.

    It may just be that the new doses are kicking off more healing and that can mean a period when symptoms seem to get worse - I think of it as being like having turned up the radio because signal is poor and then it gets better and it is deafening. Keep a diary of symptoms - to see what improves but also to keep an eye on when they start to return.

  • Thanks Gambit62. The Symptoms were worsening whilst on 3 monthly maintenance doses (last one mid February). They had slightly improved when I had the 6 loading doses 3 years ago but hadn't stopped improving. When I went to GP to report worsening symptoms & ask why I wasn't on the neurological impairment regime, he insisted on rechecking blood and then said I didn't need more loading dose. At my insistence he has now reluctantly agreed to 3 weeks of 9 loading doses. I've had one of these so far, next one due tomorrow. I felt better even after one, but am starting to doubt myself as the GP & haematologist seem to think there is no point in this re-loading! Are haematologists so badly informed i thought they would be up to date with literature?

  • unfortunately haematology is a big subject and B12 is only a small part of it - which means that B12 is often not well understood by haematologists.

  • Thanks. I'll stick to my guns then and hope these loading doses work. Next challenge is to get two monthly maintenance...

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