Update 3 private result and gp - low folate question

Update 3 private result and gp - low folate question

Hi anyone who read my last two posts - dr has just phoned to tell me a 3 month prescription of folate has been left at chemist - my folate must be low she said (receptionist)

Does this mean my symptoms are folate not thyroid (tsh 0.17) subclininal hyper

Or does low folate indicate another problem (e.g. Why would my body not naturally store it like it always has in the past?) would this explain headaches and memory loss. Chills and sweats thanks

29 Replies

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  • Niaandboo,

    The symptoms of anemia that occur due to folate deficiency include:

    persistent fatigue.

    weakness.

    lethargy.

    pale skin.

    shortness of breath.

    irritability.

    Folate Deficiency: Causes, Symptoms, and Diagnosis - Healthline

    healthline.com/health/folat...

  • Niaandboo Did you have B12 tested as well? If not ask for it to be done before you start the folic acid. Supplementing with folic acid can mask a B12 deficiency.

    NHS Choices information about folate/B12 deficiency

    nhs.uk/conditions/Anaemia-v...

  • They won't tell me rang them and they are getting drs permission to tell me

  • What aren't they telling you? Whether they tested B12 or the result? If they have tested your B12 without your knowledge they are in the wrong, they have to have your informed consent, so you should have been told if they were testing it.

  • They tested it but she said she's only allowed to tell me the specific result the dr has commented/prescribed on

  • Go to the surgery and ask for a print out of your results. As long as the GP has seen them they must give them to you, you are entitled to them under the Data Protection Act 1998.

  • They think I'm anxious don't want to compound the problem - I'm actually just trying to figure out what's wrong x thank you hopefully they will ring back with it soon

  • They think everyone is anxious who wants more information. Just tell them that under the Data Protection Act 1998 you are legally entitled to have copies of any of your medical records including blood test results.

    You should only be charged a tiny amount for one or two sheets of paper. If they try to charge you lots more e.g. £10, then I suggest writing them a letter asking for copies of all your medical records held electronically. They aren't allowed to charge more than £10 by law.

    nhs.uk/chq/Pages/2635.aspx

    Alternatively you could ask if they have online access to medical records available. Only a minority of surgeries have made it available so far but eventually they will all have to do it. (They should have all had it available a couple of years ago I think - they are dragging their heels.)

    To access your records you will have to provide proof of identity. They give you a sheet of paper with some codes on it. Take it home and register online with the codes you've been given to get access to your own records.

  • I forgot to say - they can't charge you if you just want to see your records. But if you ask for access to view your records they have to give you a chaperone to make sure you don't try and look at something they don't want you to see. Rather than do that they sometimes just give people copies for nothing.

    Obviously if you are only looking at results you will have to write your own results and reference ranges down.

  • They said b12 is 334

  • B12 is what they said is 4.5 as I understand it

  • Niaandboo Is there a range? That doesn't look right for B12, that could be your folate result.

    B12 is normally something like

    <140 Deficiency

    And then goes to top of range something like 725.

    Anything under 500 can cause neurological problems, recommended is very top of range, even 900-1000.

    You need to clarify:

    1) Have you had B12 tested

    2) What is the result

    3) What is the range

    As you are folate deficient (they wouldn't prescribe folic acid if you weren't) you could very well have a low B12 or B12 deficiency as folate and B12 work together. If you are very low in range or B12 deficient you need testing for Pernicious Anaemia. This should be done before supplementing folic acid as that can mask B12 deficiency.

  • I've just been reading about this condition and I tick all the boxes my main concerns last week were falling over unsteadiness and memory getting worse also starting to mess up when typing spelling getting muddled pins and needles in hands and feet etc... I also look anorexic can't gain weight

  • falling over

    unsteadiness

    pins and needles in hands and feet

    Classic low/B12 deficiency symptoms.

    You really need to get that B12 result, and it won't be 4.5

  • 334

  • Niaandboo There you are then, under 500 and causing neurological problems.

    Take your B12 and Folate results over to the Pernicious Anaemia Society forum here on Health Unlocked and see what they say - they are the experts. Give them all background information, results and ranges.

    healthunlocked.com/pasoc

    You may just need a sublingual methylcobalamin supplement for the B12 but you need to sort out your supplement for low folate if the folic acid is making you sick.

  • I took the 5mg folate about an hour ago just got really dizzy ringing in ears and threw up but this happens sometimes I have a really sensitive stomach

  • Reading your other posts you say you have PCOS

    This is associated with gut issues, leaky gut & gluten - have you tried gluten free ?

    pcosnutrition.com/should-al...

    pcosdietsupport.com/diet-ti...

    PCOS is also linked to Hashimotos which also often responds fantasticaly well to gluten free diet too

    drhagmeyer.com/women-pcos-o...

    Low B12, folate and vitamin D can also have gluten or gut absorption cause

    Have you had vitamin D level checked? If not ask GP

    Or can get privately via

    vitamindtest.org.uk

    A functional nutritionist could offer testing for leaky gut/gut infections - candida, h pylori, etc

    pcosdiva.com/2014/04/leaky-...

    conqueryourpcosnaturally.co...

    hypothyroidmom.com/hashimot...

    Also gluten can be underlying cause of anxiety (was for me) - you don't necessarily need to have any obvious gut issues

    ncbi.nlm.nih.gov/pmc/articl...

  • I have ibs as no other cause for heart burn nausea and very loose stools/fast metabolism type symptoms

  • Thank you so much for all of this will have a good read once the kids r in bed xx

  • Medics don't seem to recognise or treat gut issues

    Functional Nutritionist more likely to understand - but not cheap - reading a lot/everything about gut / nutrients is first step

    I had over 20 years terrible Hashimotos - (medics were useless) help on here has been invaluable, plus going strictly gluten free & sorting low nutrients (more on my profile)

  • Thank you I will have a look - have often wondered about food intolerance I definitely have a hard time with things like pastry and bread but not sure what that is, is that likely to be gluten? Thanks :)

  • Yes sounds highly likely.

    Personally I had absolutely no gut symptoms- but difference was astounding after even just 24 hours, then continued improvement over following months

    It's easier than I expected to go gluten free, but it does need to be 100% to work

    Lots of GF options around. You do have to read labels carefully and look out for hidden gluten e.g. Soy sauce, beer/lager, marmite, some pickles or ketchup etc

    But can get gluten free versions

    M&s are brilliant- I just had "proper fish & chips" - gluten free & delicious

    Most GFree bread is pretty dire - but some is pretty good - my own favourite is M&S brown seeded for toast with Sainsbury's "marmite" which is GFree

    I make own GF muesli using GFree oats plus lots nice dried fruits, seeds & nuts

  • Brilliant thank you this is all making me look at my diet xx

  • I've been referred for a brain scan after failing the gp memory test and endoc as suspect thyroid

  • Supplementing folic acid can mask/hide low B12

    Low B12 can affect memory, balance & may cause pins & needles

    nhs.uk/Conditions/Anaemia-v...

    ncbi.nlm.nih.gov/m/pubmed/1...

  • B12 was 334 on the same bloods that picked up folate deficiency is that ok I was told in pa it was I think x

  • It is within range - but UK range is very wide.

    Many countries consider anything below 500 as too low.

    But you are unlikely to be offered injections here in UK unless below range

    You can supplement yourself but definitely don't start until after been evaluated by endo

    It takes months for levels of B12 to fall if you supplement even for a short time - so would badly affect any follow on blood tests & would not get diagnosed

    The other issue may be that you are taking folic acid rather than folate. Folate is the natural form of folic acid (marginally more expensive than folic acid - but both are cheap. NHS never pay the extra for folate - easy to buy on Amazon or similar)

    Some people have trouble using folic acid

    See 4th reply in this post below for good explanation of folate and why better than folic acid

    healthunlocked.com/thyroidu...

  • I bought b12 patches on eBay was wearing one a week for 24 hrs for a month before these bloods as been feeling so tired which means it was probably lower

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