Pernicious Anaemia Society
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Hi new to this site

Hi all, I am new to this site. I was diagnosed with low B12 in 2017 after sublingual B12 failed to raise my B12 level very much or very quickly. I pulled up a list of symptoms from the B12 deficiency site and I have most of the ones listed. The only thing is I also have hypothyroidism which was found in 2013 and a host of other unexplained symptoms. I take no other medication apart from levothyroxine and I am on a vegan diet. I also take 5mg folic acid as well which is once a week and this has just been started. I am on 3-monthly injections of B12 (hydroxocobalamin) but within a couple of weeks my symptoms return. Any advice appreciated

FOLATE 2.33 (2.50 - 19.50 NG/L)

VITAMIN B12 228 (190 - 900 PG/L)

Symptoms from B12d.org site

- Brain fogginess

- Being anti social

- Weepy

- Tired all the time

Unexplained symptoms

- Loss of balance

- Constipation

- Neck swelling that comes and goes

- Feeling cold

- Anxiety

- Brittle hair and nails

- Cold hands and feet

- Weight gain

- Bags and dark circles under eyes

- Hyperpigmentation

- Pins and needles in feet and legs

- Looking pale

- Sore tongue

- Cracks at corners of mouth

- Dizziness and whooshing through head worse just before or during periods

- Headaches

- Acne

- Aches and pains

Thanks for any advice.

13 Replies
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Hi Opal. It sounds like you need more frequent injections. You might also like to supplement B2. Vegan foods are not particularly high in B2, and cracked corner of the mouth is a deficiency symptom. Are you also light sensitive?

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Hi thanks. Yes I am light sensitive as well. The GP thought I had Sjogren's syndrome because of this and also dry mouth and dry nose and ears and eyes and an autoimmune profile came back saying possible Sjogren's but I have had no further investigations into this.

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You could try supplementing with B2 and see if that helps with your cracks at corner of mouth and light sensitivity. Who knows it might help some other symptoms too, but it sounds like you need more frequent B12.

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Ok thanks. I will look to see if I can get some B2 which are small enough for me to swallow (I have trouble swallowing) and I will ask about more frequent B12 injections as well

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General trouble swallowing is a B12 deficiency symptom. Take the capsule apart and empty it under your tongue and then wash down with water. They are quite small though.

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Hi Opal19

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

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

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

Being Vegan you will need to be supplementing B12 for the rest of your life and your Folate deficiency cause also needs to be investigated as I assume you eat lots of leafy greens - sprouts, broccoli, spinach, asparagus, peas, beans etc. Many breakfast cereals are now fortified with folic acid.

It may be you have an absorption problem, which would explain why the oral supplements didn't "work" and having thyroid problems also puts you at risk of developing a B12 deficiency.

Did you start supplementing with folic acid before the B12?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

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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Thank you. I initially took the folic acid once a day for folate deficiency and this was before having B12 injections. I began to get neurological symptoms on the folic acid and my B12 level was checked and found to be low so then the folic acid was reduced to once a week.

Since my B12 injections have now started I am hoping it's safe to increase folic acid to once a day?

Yes, that is the symptom I have (badly tuned radio)

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Are you being treated and prescribed by your doctor in regard to the folic acid and B12?

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Thank you. I am being treated for both - B12 injections once every 3 months and 5mg folic acid once a week.

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The N.I.C.E guidelines on Treatment for folate deficiency

Prescribe oral folic acid 5 mg daily — in most people, treatment will be required for 4 months.

However, folic acid may need to be taken for longer (sometimes for life) if the underlying cause of deficiency is persistent.

Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop.

Give dietary advice about foods that are a good source of folic acid — good sources of folate include:

Asparagus.

Broccoli.

Brown rice.

Brussels sprouts.

Chickpeas.

Peas.

I'd check with your doctor and see what she says or you could try eating more greens as listed. Many breakfast cereals are also now being fortified with folic acid.

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores. Both iron and folate may be needed.

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I'm sure you already know that being vegetarian greatly increases the risk of B12 deficiency, and vegan even more so. If oral tablets (or sublingual) are not doing it for you then you really need to get more B12 injections. Obviously I have no idea of why you are vegan, but if it is for your health, I would very seriously reconsider that since your body is really struggling and something like a ketogenic diet would be ideal just to get you back on your feet. If it is for ethical reasons then that's a harder decision, but one you may have to make. Meat is the best source of B12, but maybe some fish or dairy (I THINK I'm right in saying they do both have some B12, just not as much!). I absolutely understand that your conscience might be a big issue here, but there doesn't seem a lot of point in saving animals only to trash your own health in the process. Very best of luck, hope you find a solution you can live with.

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Thanks I am vegan because I am lactose intolerant

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Well, going vegan is a very extreme solution to avoiding lactose. If it is simply a lactose issue for you then there is nothing to stop you eating an otherwise omnivorous diet, minus dairy, and thus you would be able to feed your body the B12 it so desperately needs via the best sources - meat and fish. Very best of luck with everything. X

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