B12 and Folate test results - Pernicious Anaemi...

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B12 and Folate test results

marlathome
marlathome
10 Replies

Hi - my first time posting and I've had B12 and folate tested, along with other bloods. My GP is unconcerned about the results but I am worried and would appreciate anyone's advice:

Serum vitamin B12 172 ng/L reference range 177 - 771

Serum folate 2.0 ug/L reference range 1.9 - 25

I have no thyroid gland and thyroid meds are totally out of whack. Also low in Cortisol, Vitamin D and Calcium!

I've recently been diagnosed with atrial fibrillation and am taking blood thinning medication along with something to slow my heart.

I feel ill - exhausted, brain fog, dizziness, pins and needles in arm, fingers and numbness in right thigh. I'm breathless, which could be as a result of heart, but basically dragging myself around most of the time, or asleep. I'm going on holiday next Wednesday and, at the moment, dreading it.

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JMN2017

Hi marlathome

Sorry to hear all this. I can understand you being so tired and exhausted, especially with your B12 level so low. My B12 was, like yours, just out of range and my GP claimed it was 'fine'. I decided to SI and am now very noticably so much better which, to me, proved my point but the GP won't be changing his mind, of course :(

Also your Folate is very low and will, too, have similiar impact to lack of B12 as they are necessary to work together.

As for the other results, I can't comment as I'm not knowledgeable enough but others, who are decidedly have more knowledge, are likely to be along later and will hopefully be able to guide you in the right direction.

In the meantime, you're not alone and you will be able to do something to help how grotty you feel. For now, here's a (virtual) {{{Hug}}} ;)

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fbirder

Your B12 and folate are both too low. You could treat the folate by yourself, but it's not a good idea to do it with an untreated B12 deficiency.

Were other blood tests done? Specifically, MVC and RDW. These can tell if you have macrocytic anaemia.

You need to go back to the GP and demand that your two deficiencies are treated (the B12 with injections). You also need a referral to a neurologist as your other symptoms are likely caused by nerve damage due to low B12.

Your heart problems can only be exacerbated by your low B12 and folate. A deficiency in either can cause high levels of homocysteine which can cause cardiovascular problems. Show your doc this article from the British Medical Journal - bmj.com/content/325/7374/1202

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marlathome
marlathome
in reply to fbirder

Thank you for your response. I don't know what MVC and RDW are but I'm certain I haven't had these tests.

When you say nerve damage, what specifically do you mean? Is that the pins and needles/numbness?

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fbirder
fbirder
in reply to marlathome

Yes. The pins and needles and numbness are signs of peripheral neuropathy. They are the first signs that something is causing damage to your nerves. That something is most likely to be your B12 and/or folate deficiencies. Left untreated it can become very serious - pernicious-anaemia-society....

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Ritchie1268

What fbirder has said is totally correct. I have small fibre Neuropathy caused by low B12. What started with tingling feet, is now painful when walking so far. Sadly, you are one of many who have a clueless doctor. Hope you get some answers & please take the advice along with you to your doctor from fbirder. Good luck.

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Siddjani87

If your pins and needles just started recently then I don’t think there is a real need to panic, but you will need to be treated with B12 shots as soon as possible, left untreated it could cause permanent damage. Also B12 shots should be given aggressively in the beginning. If your GP doesn’t relent find another doc but aggressive treatment in the beginning is important. My GP put me on weekly shots for a month and biweekly for another month and that’s not good enough. Injections should be given alternate days for the first 2-3 weeks. Also people say here Folate needs to be monitored too, I personally haven’t been treated with it yet but after my MRI and Neuro appointment I plan to start the Folate as well. Hopefully you will be better soon. All the best.

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lownskater52

172 is low. The b12 tests are absurd with the lower range being so low. Mine was 159 and I had been deficient for 10 years and suffered from anemia, left leg wasting, depression, and decreased nerve motor function. I would definitely supplement if I were you.

From the sound of it, your digestion is seriously challenged. How's your diet and lifestyle? My suggestion is to shift to a mainly plant based diet with easy to digest fruits and salads while heavily supplementing b12 at the same time. Probably injections as your digestion sounds like it's on its last leg. Once you clean up your diet/digestion and get the b12 issue taken care of, you can then dial in your thyroid meds properly.

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Yogijo

My B12 was 179 and was tested twice because they said it was borderline and they didn’t want to treat unnecessarily. Interestingly they were using a different range as normal (190-900). Mine was picked up on tests for something else. GP & nurses didn’t seem concerned so I assumed it wasn’t a big deal and I didn’t think I had any symptoms- I’d felt tired for a long time but assumed it was something else. The B12 loading dose made a massive difference to the tiredness although unfortunately after 8 weeks it’s wearing off. So, the B12 levels could be a big part of why you feel tired. Even if your GP seems unconcerned you should push for the injections. Of course, if it’s beta blockers that you are taking for the atrial fibrillation then common possible side effects from them include tiredness and shortness of breath. Rarer side effects include dizziness, pins & needles, mood changes- not to mention a load of others! I suppose you need to try to work out what the timeline is in terms of symptoms and when you started the heart meds to see if there is a correlation.

I hope you manage to find a solution & get your life back, feeling too tired to do anything is rubbish!

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Cherylclaire
CherylclaireForum Support

My B12 level was found to be 196 ng/L with a range of 197-771 ng/L. I was put on loading injections straight away. That was in Feb 2016. I still get 1 injection every 2 months from the NHS.

Unlike Yogijo, I really felt no effect at all from the loading doses. In fact I didn't feel anything at all until just before Christmas 2016 ! When I say anything, I mean I couldn't feel the injections in any way - in fact I had to ask "are we done yet ?" Because I was also getting no symptom relief, and injections were in the backs of my arms, I was starting to think that they weren't doing them at all !

It might be difficult for GP to untangle all your problems and be able to attribute symptoms properly, so recording all your symptoms daily on a chart would help. I still do that now - it helps me realise that yes, I am getting very slowly better. Also helps when consultants ask questions about frequency, severity and so on.

B12 deficiency should be taken seriously and folate levels should be addressed afterwards too. Ferritin and Vitamin D are often also low.

Have a look at a few comprehensive and sensible symptoms lists online: Pernicious Anaemia Society have a good one. Highlight any that are relevant to you. Take this to your GP - it might help you get treatment.

You have a lot to contend with at the moment. Can you get to see anyone before you go on holiday ?

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waveylines

Am so so sorry to hear of your plight.

I too have hypothyroidism, B12 deficiency and AF. My AF was caused by necessary cancer treatment (remission for over 4 years 😊).

Your thyroid medication that you are taking will be hindered by your too low B12 so the conversion and uptake of thyroid hormones will be poor adding to your problems.

Its vital you get the B12 treatment you really need. Go onto B12d.org and look up their symptom checker. ...its very useful. I would fill it in and show it to your doctor alongside the recommendations that NHS, NICE, and Haematology uk make.

As you have neurological symptoms then they should offer you alternate days of B12 injections until there is no further improvement.....this can be longterm. Failure to do this and delay doing so can lead to permenant damage so if that doesnt work I would put your request in writing with your blood test result and send it to the practise manager politely requesting an answer with an explanation within three weeks. Request your letter is put on your mecical file. They are duty bound to reply.

In the meantime if it were me I would purchase some B12 vials and needles and syringes and do subcut injections. Thats what I did until the nhs sorted themselves out and offered me treatment. You will need to treat the folate alongside the B12 injection. Am no expert on folate......but hopeful someone else will respond & advise you better than I can.

I take a low B12 complex which includes folate. I inject daily on the nhs. Most vitamin b's you excrete excess off but not b6 so some care needs to be taken around this form of b vitamin. I also eat several bananas during the week for their potassium.

I felt terrible prior to treatment and was rapidly declining. It was very very scary. I felt I was close to having to consider a wheel chair. Now one year on I am much better and had to reduce my thyroid meds as the uptake and conversions improved so much that I needed less!!! I have taken a personal trainer on who specialises in people like me as have lost a lot of muscle and strength and need to very slowly and carefully build myself back up. It is expensive but worth every penny.....the difference between me a year ago and now is remarkable......my GP has commented on it.

Please keep pushing. You deserve and have the right to proper treatment. Xx

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