Pernicious Anaemia Society
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Questions about folate and neurological symptoms

Hi there,

I have tried to read as many posts as I can but get a little confused and my GP doesn’t help the issue.......

I saw my GP with my partner after my first 2 month jab after loading doses to ask for more frequent injections. My neurological symptoms had worsened too. We spoke of the guidelines but she was not interested and said that maybe I didn’t have PA as my MCV was 95.7 back in end of Nov when she diagnosed me and now it was 92.4 ( range 80-100). She said it would have been higher.. it this true?

I have started injecting every other day and feel much better. It’s my 5 th tomorrow and I feel that things are starting to improve. My question is.. do I continue injections every other day until my neurological symptoms stop Improving or until all my symptoms stop improving?

I have just started taking methyol folate on advice from my other previous posts but are concerned that as my folic acid/folate level rose to 22 from 3.2 (range 3.7-18.7) that I should wait for this to go down. I had read that even if I have a mutant gene or malabsorption issues that I should be able to use some of it? And that it is not good to have high levels in your blood of unmetabolised FA? ( I have sent off my sample for the 23 gene test).

At present, I am not taking any other supplements as I want to get results for them first, so I know where I am. Will I know if one becomes too low by deteriation in my B12 symptoms? I am looking out for the signs too and eating a verygood diet and taking on the advice about potassium and magnesium etc.

I know my last question is really for the thyroid forum but must just wondered if I should be concerned. My TSH rose from 2.32-3.66 over 9 weeks (range 0.27-4.2). My GP of course said this was fine. I am re-doing my thyroid test as my sent sample was void.

Without this forum I would be so lost, so thank you to everyone who posts so much to help us all.

7 Replies
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Hi Southy12 the N.I.C.E. guidelines say continue injections every other day "until there is no further improvement"

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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Hi clivealive,

Thank for your reply. All your reply’s in peoples posts have helped me so much!

When people say they are injecting three times a week, would you consider this to be the same scenario? I know that I have read by people that this can be for a long time depending on how long you have had the symptoms and recovery takes time...... of course not all symptoms may recover. My memory, intellect and ability to hold a conversation has deteriated so much.....I was a teacher. I have read that memory can take a long time to recover........

Thanks again clivealive

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The "three timer a week" or "every other day" (until no further improvement) I referred to was in connection with "loading doses" at the beginning of a course of B12 treatment after diagnosis.

However there are folk on here who find it necessary to inject even as often as daily to keep their symptoms at bay.

No two people are alike and I guess we each have to learn to become "patient patients" and find the best course of treatment for ourselves regardless what the doctors or guidelines say.

One consolation is that you cannot "overdose" on Vitamin B12 as any excess is excreted via your urine.

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macrocytosis is a very common symptom of B12 deficiency - larger rounder red blood cells - but it is just a symptom and 25% of people don't present with it. So whilst MCV would be higher in most cases MCV being in range can't be used to rule out B12 deficiency (though many GPs think it does.

TSH will vary - particularly depending on time of day - but really you need to be talking to TUK ... and ideally your GP shouldn't be using TSH as the only measure for your thyroid.

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Hi Gambit62,

This helps to know, so thank you.... all you replies to people’s posts have really helped me. Thanks again....

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Yes tsh is higher earlier in morning so if first test was later in day than first that could be reason for change.

Folks on thyroid forum recommend testing first thing in morning for every test so variation is reduced.

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Thank you...it was 830am in morn and other one in afternoon.... will donantibody check to be sure....

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