Reserves: Hi. My daughters B12 went... - Pernicious Anaemi...

Pernicious Anaemia Society

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Hi. My daughters B12 went down to 74 range (180-900). Once your reserves have gone so low are you able to restore them? After having loading injections twice within a year her level was still only 345 and that was with supplementing. She is still supplementing but am seriously considering self injections as she seems to be deteriorating. The doctors will not give her any more B12 as they are saying that its her depression which is causing the extreme exhaustion and her levels are in range now so its not the cause. They don't believe her when she says that she can't stay awake , can't concentrate to read, or that showering exhausts her. All she does day-in, day-out is sleep, get up for breakfast then sleep, then unless I wake her she will not wake up again till dinner time. She does eat very healthily but even though she's putting in food which is good quality she never feels energised. She takes loads of supplements in the hope that they will boost her but nothing seems to be helping. The antidepressants did absolutely nothing for her when she was on them for 6 years, neither did the CBT or the art therapy, music therapy etc...I am at a loss as to what to do next!

15 Replies

If your daughter has a B12 absorption problem - and from what you have said I'd go with she definitely does then the mechanism that the body would normally use for storing and recycling B12 is broken - so no, she can't build up reserves of B12 any more.

Normally B12 is stored in significant quantities in the liver. It is then released in bile into the ileum for re-absorption. This is normally quite an efficient process but obviously if there is a problem with absorption in the ileum then the B12 is actually going to pass through the ileum - whilst a small amount might then be absorbed in the rest of the gut it's not going to enough to keep her going. It's like having a bucket with a big hole in it that you are using to transport water from one place to another - you'll quickly run out of water.

If she was taking SSRIs then they can be problematic as for some people they can really deplete folate, and as folate is needed for processing and using B12 that can make things worse.

Unfortunately the reaction you are getting from the GP in terms of focusing on the depression as the cause of everything and ruling out B12 seems to be quite common - know that it was the case for me.

Unfortunately GPs tend to rely on a list of questions to decide on depression that doesn't highlight the possibility that B12 deficiency might be a cause. The crunch moment for me was being given that test by my GP and realising that the focus on energy levels meant that someone with a B12 problem was likely to score high even if their mood wasn't also affected.

The focus on depression is quite hard to understand on so many levels - particularly given that it is actually a label for a set of symptoms that could have a number of causes and you would think that the next step should be to identify the cause. However, we are stuck in a system that is driven by treating people based on averages from studies (well that's what NICE is all about on so many levels) and may be that is inevitable when faced with the multitude of things that can go wrong with human beings from a medical point of view.

Anyway, at the point where I was given the test I was in an extreme pickle - balance was awful - pain in feet/legs was extreme, I was tired all the time, I couldn't sit down without checking that there really was a chair where my bottom was going to be and standing up required pushing off on any surface I could manage as the legs just couldn't do it on their own. I would like to emphasis that my GP was very concerned and really was trying to look into possibilities but just wasn't aware of the one thing that really mattered - I needed a lot more B12 than I was getting. He must have overrun the appointment by a good half hour trying various things but was so fixated on depression that he couldn't see any further than that at the end.

I came home. Howled. Ordered some B12 online and then resorted to using a nasal spray I'd purchased at much higher doses than it recommended to tide me over until the injectable B12 arrived. Except that the higher doses of B12 from the spray actually did the trick for me.

Within my family my mother has been identified as having absorption problems (though I think my problems actually come from my father's side of the family). My brother (in his 50s) also has signs of problems and my mother's sister (in her 70s) also has signs. My aunt and my brother find that relatively low doses taken nasally work very well for them.

However, both my mother and I need to supplement very heavily to stay okay.

What follows is speculative but I suspect that I one of the problems my mother and I have is that we are trapped in having to keep our levels so high that they beat an autoimmune response to TCII (which transports B12 to cells where it can be used), which was actually triggered by having had loading shots - my symptoms come back within 24 hours of a maintenance shot and if I'd been started on a lower dose then I wouldn't have the same need to supplement enormously. However, as the only way out of the trap would be to wait a up to 6 months for the serum levels to drop to low - during which time I wouldn't have B12 getting through to cells and all my symptoms would come back with a vengeance (basically I'd be extremely ill and at risk of (increasing the extent of) permanent nerve damage) it isn't something I really want to do.

I would definitely look to upping intake of B12 - and if that means injections it means injections. Having existed with depression for many years I feel for your daughter. There is no guarantee that there aren't other things going on but having found that 40+ years of depression and anxiety went after I started treating myself (3 months later I just realised one day that they weren't there any more and that I actually had a life rather than just an existence) I definitely think it is worth a try.

Catlover3 in reply to Gambit62

Thanks Gambit62. I am so sorry that you have had to face the same type of reaction as my daughter. Existing is a word which people whom have not suffered from ill health cannot even imagine. I find it hard when people say just to push yourself and you will be fine. These are normally the people whom have had a few bad days and feel down not truly depressed when life doesn't feel worth living which has been the case for her a few times in the past. The thing is though that she does feel like life is worth living and wants to live a full and active life but her body just won't let her. The nasal spray you use is it a Yuliv one from detox people? I am not sure how she will cope with injections as she passes out quite easily so the nasal spray is an obvious alternative. She finds the oral spray makes her teeth hurt as its so sweet so has been alternating with the Jarrows 5000mcg. Obviously we have no idea how much is being utilised which makes the whole process so confusing!

Gambit62Administrator in reply to Catlover3

I use a mix of the yuliv and their nasal drops - which is to do with being able to carry stuff around - the top on the yuliv spray isn't as secure so it can leak.

Lisahelen in reply to Catlover3

You could try the patches, viepatch+ are 5000mg high dose methyl from amazon. I have been using them with success. Only downside is the cost £12+ for 6. If you do get these i think despite multipack offer it is cheaper to buy individually. Another brand sells same strength but they are not methyl as listed but cyan.

"The doctors will not give her any more B12 as they are saying that its her depression which is causing the extreme exhaustion"

I sadly recognise this type of response as I experienced it. As depression and extreme exhaustion can both be symptoms of b12 deficiency I find it difficult to understand why they won't consider more B12. Is she currently on maintenance doses every 2 or 3 months?

Have you ever looked into B12 infusions? These are available privately but can be expensive. Perhaps the PAS could tell you more about B12 infusions?

Infusions are mentioned at the end of this sad story on Martyn hooper's blog.


01656 769 717

Hi Sleepybunny. No she isn't on any maintenance doses. The first time she was low at 74 they said they would give her 6 loading doses and see what happens. Then the second time within the year her B12 went down again to 148 and they said lets give her 6 loading doses and see what happens. She did not have any relief from the extreme tiredness after the loads but they weren't interested. So we decided to try and treat ourselves. The next blood test she had her level was 345 with the supplements but she is exactly the same if not worse than what she was. I will look into B12 infusions.Thanks very much for your help.

i've had to self medicate too and try different things. I found the b12 skin patches (1200mcg with 400mcg folic acid) helped me. I take 3 a week now, but I have taken one every day.

As far as I'm concerned if you cant get any help from your practice, you have to try and find what suits you best. Especially when you're daughter is as bad as she is. Remember to document what she takes and how she feels, that way you have some proof to go back to the doctor with - hopefully they'd listen but they dont always.

Good luck

Catlover3 in reply to Softpaws

Thanks everyone for your replies. We have tried the skin patches and she came up in a red itchy welt where the patch was so probably allergic to something in the patch, maybe the adhesive. I've just ordered a nasal spray and she will use that and the jarrows to see what happens. If there is no improvement then the only option is injection or infusion and I am wary of going down this route although I know lots of people self inject without any problems. Once again many thanks.x

Contact the Pernicious Anaemia Society, there is advice on there, plus a telephone number for more information. Books written by Martyn Hooper (the founder), explain how poorly understood B12 deficiency is. It sounds as though your daughter should be on permanent injections, and may need further supplements to aid absorption of the B12.

Just wanted to ask, has she had her thyroid checked? I have both and can certainly have the same symptoms.

Catlover3 in reply to Cyclegirl

Hi Cyclegirl. Her thyroid has been tested and her tsh came back as 1.16 (range 0.30 - 5.00) and T4 11, (range 7-20). They didn't do the T3 so don't know what that came in at. Her T4 is a bit low and I am contemplating giving her a 1/4 grain of my NDT but at the moment she is taking so may supplements I will hold off for now and see if the high doses of B12 make a difference. Just to add to the pressure the DWP have stopped her ESA because she has not accessed help for her mental health condition. After having 6 years of anti d's, and numerous other sorts of therapies, nothing worked so she has sort of given up. She wasn't feeling suicidal recently but that has now changed. I am now going to have to fight to see if we can get it re-instated but at the moment her future is looking very bleak.

I also was anemic.

Yes she has also had B12, Ferritin and folate deficiencies which are being addressed despite an extremely healthy diet.

Don't be afraid of injecting. I was and it stopped me from doing the best thing ever for my condition. A friend has taught me and really there is nothing to it once you overcome the block to sticking sharp objects into your skin!

I wonder has your daughter had a proper work up of the B12 deficiency. Go with her and ask for a blood test for antibodies to Intrinsic Factor and Gastric Parietal Cell. May also need an endoscopy to check state of the ileum (lower intestine).

Good on you for being your daughter's advocate. Good luck.

As she has recurring deficiencies a referral to a consultant could be a next step, I would think either a gastroenterologist or a haematologist.

If you can't get anywhere with the gp or they won't refer try writing (maybe even write first asking for a referral if the gp is not comfortable with treating) to them with a full list of symptoms. Quote the guidelines and that you feel it is the b12 that is the problem.

Does she have any other symptoms

The deficiencies she has had should also have triggered the gp to do a coeliac test, has she had one yet?

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