B12 Issues

[Ceriane]

In 2011 I was diagnosed with a B12 deficiency after a year or so of chronic fatigue along with dizziness, brain fog, pins and needles in hands and feet and sore lips/tongue. My B12 level was 154. I was given loading doses and felt fantastic for almost 3 months. I was in my late twenties at the time. I had 3 monthly injections but would really be struggling towards the end of the three months.

They then took my injections off me, said I didn’t need them as they are only for people who can’t absorb B12 and they couldn’t prove that I can’t absorb it, despite the fact that without injections my symptoms come back. Nothing I said would persuade them to put me back on them.

I tried B12 tablets, even patches, nothing helped.

After researching online I read that a lot of people were having similar problems and many people self inject. This is not a decision I took lightly. After speaking with someone from the pernicious anaemia society I began ordering online and self injecting every other day until I felt better. It took a while to get my levels right but I found once a fortnight worked really well for me, I continued to do this for several years, I felt great and never looked back.

I was advised by my GP to stop self injecting, in fact they made me feel like I was injecting crack cocaine and that I was doing something really stupid. I stopped the injections thinking if the drs don’t think I need them then maybe I don’t. After six months I after stopping injecting the symptoms returned. Out of desperation I went back to self injecting and this cycle continued for a while I would stop injecting go back to it and then find I had symptoms from having too much at once after a long break.

Eventually I got back on an even keel with fortnightly injections and felt well for several more years.

I came off it again recently and now I’m scared to inject as last time I was told your potassium levels can drop, so I drank a LOT of coconut water which is high In potassium thinking it would help and my potassium actually went to a dangerously high level and I became seriously I’ll from that. That was a few weeks ago.

The problem I’m having now is SEVERE fatigue and I’m scared to go back on B12 even though it’s the only thing that helps and my GP can’t help me as once you’ve injected your levels remain high in a blood test regardless of symptoms and they don’t approve of me self injecting so I just don’t know what to do.

I also can’t explain to people why I’m sometimes really not well and unable to do things, as B12 deficiency sounds trivial (even though I am EXTREMELY debilitated by this) and they just think you can just have B12 and be cured, it’s much more complicated than that. I have a friend who goes on and on at me about the fact I haven’t had kids but the reason is because it could be dangerous with all of this going on, but she doesn’t seem to understand that.

This is ruining my life! Does anyone else have experience of this?

I have experience of it but I’m afraid no advice. With chronic fatigue from thyroid issues and B12 deficiency I have accepted a less-than life, which is both depressing and liberating. But I was ‘fortunate’ that mine only came to light after having children so I’ve just had to carry on as best I could as a single parent living with constant pain and exhaustion. I had the same issue with them taking away the injections that made me feel vaguely human, but I never got round to trying self injecting. I use a spray under the tongue or inside cheek, which makes my levels top of the range but I still feel shit most of the time to be fair.

You need a blood test to see what your B12 levels actually are. If they are low then the GP should agree the loading doses again and then hopefully three monthly. You’ve taken matters into your own hands and I get it, but you need medical oversight. A GP shouldn’t refuse the three monthly injection if your levels were tested regularly.

Have they investigated other reasons for your symptoms. Folate and ferritin and thyroid at the minimum.

Thank you. My iron is on the low side so I’m going to take iron again plus vitamin D, everything else is within range. My B12 is sky high on a blood test so I will wait 3 months for another one. I hate that I have been taking things into my own hands without medical supervision but I felt I had no choice. The level of fatigue is extremely debilitating more than I can explain in words.

Have you read the B12 NICE guideline and quoted any bits of it that are relevant to your treatment to your GP?
https://www.nice.org.uk/guidance/ng239/chapter/Recommendations

Honestly I wouldn’t be looking to blame the B12 at this point. Have you had a full blood panel and possibly an ANA test for autoimmune conditions? It sounds like there could be something else going on, I don’t know what as I’m not a medic. Low Iron stores - ferritin - can make you feel rubbish. And they should explore why it is low. Mine has been low for years and I feel I live a half life as a result - cannot stomach tablets unless really low dose of iron bisglycinate which is bringing it up very slowly.

Thank you. The problem I’m having is that once you have injections your blood tests will give a false high, it would take many years to give a low result and all the while I would be getting worse. I am so unwell at the moment but as I’m scared to inject I’m going to leave it for a while and maybe try the spray. The frustrating thing is when everything is on an even keel I feel great for months on end I just don’t know how to get back to that at the moment.

Thank you. You’re right there could be something else going on, aside from the B12. I go to my GP once a year (because I seem to have a bad patch once a year and nearly always in April for some reason but this is by far the worst!) I have been tested for everything under the sun several times, they can’t find anything else wrong with me.

I was anaemic last year and felt a lot better on iron tablets, however my levels only went up by 1 point so I think my problem is to do with absorption, we just don’t know why.

I have spoken to them about the NICE guidelines as well in the past. I still don’t know what I need to do really, whether it’s from my GP or self injecting I am now scared to have B12 for the time being though.

Join the pernicious anaemia society to access all their info. You can also give them a ring to get some more advice.

I have hypothyroidism and seem to need more b12 than I can get from diet as it drops when I don’t. Not sure if it’s the hypothyroidism or something else* (see below) I have been self medicating with sublingual b12. I seem to be ok now (NHS was testing me due to some symptoms. They agreed to test me again after supplementing for a while. The body stores b12 for a few years.) however I also seem to have the same issue with folate - that seems to cause me extreme fatigue and brain fog when thyroid levels are ok. And I think in the past has led to them suggesting higher doses of thyroxine which didn’t help as that wasn’t the issue. I seem ok when I take the equivalent of a berrocca a day (I take the together health b complex and their multi vitamin) and lots of folate rich foods.

https://pernicious-anaemia-society.org/

*Tim Spector also seems to have this issue. He didn’t say pernicious anaemia but mentioned a gene he found he had. I’m not bothering with all that, just take the b complex!

I also do better with spatone (vit c ones) x2 a day than iron tablets.

There’s a new way of taking iron too that is supposed to be better for absorption ; I think a lower amount other day. It’s easy to look up.

it does sound like there could be some absorption issues however. The pernicious society seem to know about this too. Apparently the woman on Mondays is the most knowledgeable! The woman I spoke to on a Tuesday was great too though.

To raise iron effectively though you must follow the instructions on spatone - which also apply to any iron.

bizzarely I seem to be better at absorbing iron when it’s vegetarian sources (non heme) - whilst that’s less than in meat (heme) dairy doesn’t inhibit absorption. Dairy and caffeine and other minerals do inhibit absorption.

I'm under the impression there are two Vit B12 tests. The usual one that ascertains what level you have in your body and the only one GPs seem to request, the other looks at how much of that Vit B12 your body can actually use. You might have a level of 1,000 but if your body can only access 20 then you are deficient. Wish I knew the name of the second test so I could request it at my GP surgery as they don't seem to understand that.

I think the tests are Serum B12 and Active B12.

Always in April makes me think of Vit D. What are your most recent levels of everything you have been tested for in the last 12 months?

were you anaemic based on your haemaglobin levels or your ferritin levels?

Thank you! Yes, it's the Active or holotranscobalamin / HoloTC to see how much is accessible.

Ferritin however it has only gone up to 22. I will look into the serum B12 test. My main problem though was the high potassium.

After supplementing B12 cant really be tested and the UK has lower minimum levels of B12 than lots of the other countries

Loads of people can't digest B12 supplements, and you need to add in magnesium and folate (or methyl folate) if you are supplementing

You can pay to have additional testing if you are concerned about potassium or Vit D & of course Vit D should be taken with K

But of course you shouldn't take my word for it - check out Healthunlocked, the PA people and peer-reviewed research from Germany, Scandanavia and Australia - I tend to avoid research from America

Good grief, no wonder you have severe fatigue. Ferritin needs to be around 70 just for healthy hair growth but 100 is nearer optimal.

What strength iron tablets were you taking? Last year I took ferrous fumerate - 2 x 210mg tablets a day with 1,000mg of vitamin C to aid absorption. Some research says it’s better to take it every other day but I did every day. My ferritin went up by 53 points in 3 months. I am post menopause so no periods.

I was worried I wasn’t absorbing B12 as my haemaglobin was low - 123 - and to make haemaglobin you need iron, B12 and folate but the GP said more likely my diet was poor. So I also started on
1,000 mcg B12
4000 iu Vit D
a multivitamin which had 100% of the folate requirement

My haemaglobin only went up to 132 so I still wonder if I absorb it easily but 1,000mcg is a v high dose so even if I only absorb a small percentage of it I am getting some.

it sounds like you need to get back on the iron. A high dose if you can tolerate it.

@Ceriane how old are you and what are your exact symptoms?

can concur with this,

I do believe there can be a lot of things happening around March April. It could be vitamin linked but the time of year also often sees more mood swings (most obvious being vit d of course) A friend’s husband who has bi polar commonly swings to a manic state now. I teach children with send and we do also see changes in behaviour around now.

I also seem to become more sensitive to things around now and often have to reduce my thyroid medication. Since I’ve been on tamoxifen for breast cancer I’ve noticed I get hot flushes around now and again in august/ sept.

it might take you a while to unpick what’s going on. Definitely speak to the pernicious anaemia society.

Lowe ferritin can be linked to periods

So sorry I see you have spoken to them. I had a migraine yesterday thanks to the storm and wasn’t reading very well.

you need to know what your folate is doing - as I said that seems to cause me the most issues.

if you can get ferritin, b12, folate and vit d into the upper quarter ranges and are still having issues, I’d then look at other things like breath work (can help pins and needles) and gentle regular exercise eg walking. Which I know feels awful but the routine can help. Start very short but several times a day. Make sure you’re eating a lot of protein before 10 am. Have a listen to some of the latest podcasts with James Nestor.

Beyond that perhaps ask to be referred to the chronic fatigue clinic- I balked at that but apparently they can be very helpful at ruling things out. I’m mostly managing via lifestyle. And tamoxifen is notoriously hard work!

I have been deficient in B12 and Vitamin D but fortunately, even though my absorption test was inconclusive, my GP has let me stay on the B12 injections. My ferritin level is 29 though which apparently, according to my GP, is fine and no further action needed 🤨 I’m guessing that’s not the case 🤔