Had my loading injections in August and was told that I could have nothing else until a follow up blood test in November (which I understand the reasoning of), however after an initial feeling that the fog had lifted from my mind , everything has pretty much gone back to how it was - low moods, feeling like I have had some kind of stroke when I am trying to get words out, heavy legs etc. you know , the usual fun stuff we all have to put up with.
Went back to my doc today, who is very lovely, however she said there was nothing she could do until my 3 months were up as they need to check whether B12 has been absorbed or not. I said everything I had learnt from here, needing more injections, because of the nuerological symptoms etc. She said she understood my frustration, however her hands were completely tied and she had pushed for futher injections, previously but its not possible. I must admit I did get teary and explained it was affecting my work, my uni, my whole life and I was so worried that at my next test it was going to come back at over 200 - and they will say everthing is fine, (especially as they are treating my 145 result as borderline) but its not fine and the industry just doesnt seem to understand the importance of B12 blah, blah, blah . She then said that being totally honest, everything I was telling her, pointed towards me also being anxious and depressed and suggested Sertraline . I mentioned that B12 had an intrinsic link with mental health and whilst she agreed , she said there could be a cross over and it could also be a chemical imbalance and that can only really be sorted with the anti-depressants. So I left, with a prescription, I am not sure I will use, feeling utterly frustrated and having to wait, again.
Im not actually sure what my question is, if there even is one, I think maybe I just wanted to rant to people who may understand how flippin annoying it all is.
Thanks.
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Sarahw123
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From my own experience I had years of depression but it was depression because i couldn't live my life the way I wanted to. I kept being told my symptoms were caused by depression and I tried to tell medics that I was depressed because the symptoms meant I couldn't live the way I wanted to. I tried various antidepressants but they had no effect. The only thing that made any difference was b12.
I feel very let down that for years everything was blamed on depression when my medical history and some blood tests pointed to b12 deficiency.
I'm a cynic and have read that GPs get more funding for diagnosing people with depression.
If you haven't already, I would suggest you ring the PAS.
There's a list in Sally Pacholok's book "Could It Be B12" of drugs that affect B12 uptake.
"was told that I could have nothing else until a follow up blood test in November "
Do you have neuro symptoms? The recommended treatment for B12 deficiency where there are neuro symptoms is an injection every two days until you stop improving (which could mean loading injections over a period of weeks or even months) then an injection every 2 months.
This info is in the BNF (British national formulary) Chapter 9 Section 1.2.
Google "BCSH Cobalamin and Folate Guidelines" I found page 29, a diagnosis flowchart useful.
The NHS should be following the BCSH Cobalamin and Folate Guidelines. If you contact your local area's NHS or the local area's CCG (Clinical Commisioning group) they should be able to confirm this with you.
Another person who can help you to confirm this is your mp. Mps can be very useful in getting answers out of official bodies when ordinary people have less success.
Today i had a similar appt with my gp, all very understanding and no i wont be getting any more red juice until november despite my increasing list of symptoms. His suggestion was that it might not be B12 alone but oestrogen as im post menopausal.
I know others will read this post so i ask has anyone else been told this too?
It seems that they want to help but are restrained. I even gave him my sally patchlock book to read, whether he will or not i dont know, but at least i have tried on behalf of the few he admitted to having within his practice who suffer.
Yep - GPs quite keen to look at any other possibility - be it depression or hormones.
My personal experience is that actually dealing with hormones was a lot worse before I started treating myself with the levels of B12 that I needed. Being anxious burns up B12 and hormones can certainly do that - so you end up in a vicious circle of more and more anxiety and less and less B12. I'm not entirely convinced that will necessarily show up in the blood tests as recently had an experience with artificial progesterone that had me back in B12 hell (very minor bleed that wouldn't stop - at least the HRT sorted that out but I'd been given 10 days worth and had to stop after 1). If it happens again (hoping it won't) then I'll be trying fractions of the tablets rather than whole tablets. Experience makes me think it is probably more complex than just absorption problems which are well documented with progesterone subsititutes and was actually something going on at the cell level ... but that is only my theory.
I am really sorry that you have had this response - in the 15 months after I was told I had low B12 my symptoms - which included huge amounts of anxiety and depression - just got worse and worse. I tried speaking to my doctor - who did spend ages with me but was just pushing anti-depressants. What really pushed me over the edge into 'can't cope with this ignorance I'm going to have to do this on my own' was the GP giving me the standard questionnaire for depression and realising that even if a B12 deficient person wasn't suffering from low mood then they were going to score really high on it.
ADs are rather hit and miss - from some B12D people they are going to be really bad as for some people SSRIs (and serataline is an SSRI) they can deplete folate levels - which has a knock on effect on ability to use B12.
Have to admit that it does sound a little as if your GP is avoiding the buck with the comments. They are supposed to follow professional judgement but it sounds as if they are abrogating that judgement to the rule book.
You do have options - treating yourself is one. B12 isn't toxic. High levels aren't a problem. Yes, some people can react badly to some forms but if you have a reaction then stop and try another format. You do need to monitor you folate levels to make sure those don't get depleted. You can try sublinguals, nasal sprays, patches, self-injecting in whatever order you feel is appropriate.
Treating myself gave me my life back ... and it isn't a decision I will ever regret. Without it I'm pretty sure the anxiety and depression would have meant that I would have taken my life because actually I really hadn't had a life for soooo long.
I'm sure my next blood test after the loading injections was six weeks after, not three months. At six weeks they can see what is happening to the extra B12 you've been given. My level was 176 when I began treatment, and it takes quite a while for things to improve. My GP has agreed to trial me on six weekly injections for a time as my symptoms were still bad. It has made quite a difference to how I feel and my energy levels. I think you need to speak to the Pernicious Anaemia Society for advice. Best wishes MariLiz
I completely understand how you are feeling and will try to relay my similar story.
I went to the docs (England) feeling run down and like my brain was not working (as well as anxiety etc). first time I had had b12 tested despite similar problems in the past. Score was 147 aged 25. Monitored bloods for a year (always 158 in later tests) as considered borderline... I didnt know much about it and didnt find this site until a year or two later, it did seem odd that 150 is borderline when the lower limit of the test at that surgery was 180. I then pushed for MMA and Homocysteine tests as I read a paper that said these can help indicate a problem. Homocysteine was high, Haemotologist (who I never met) said this is common and doesn't mean it is b12, but that no harm in giving injections. I was given 6 loading doses over 2 weeks. 3 months later b12 ~500. Doc said fine.. I was not happy. 3 months later it had dropped.. doc still said fine, I questioned that it was dropping and that it may not end well. I then moved to scotland and had a test it was lower. Moved somewhere else in Scotland and they said it was ok, I was feeling terrible about 14 months after loading and asked for an earlier test.. the doc (who was not my normal one) said he couldn't do that as he was following my normal doctors instructions so I phoned in tears and my normal doctor allowed an early blood test showing about 170. I was apologised to and given loading doses. Been on 3 monthly since (approx 1yr 9 months since second loading batch) the only time it has been tested since it was over 1500, as regular topups seem to make the tests irrelevant. I still think I may need it more regularly but my folate and ferritin are often low and until I get these sorted it is hard to know if they are the limiting factors or if it is the injections.
For mental health stuff so far I have had CBT and counselling which have helped a little. Between my two sets of loading doses I had anxiety meds for a week but they made me worse. I know they can take a while to get used to but I do know people with depression/ anxiety / other issues that do benefit from meds so I wouldnt totally rule these out. I think it is a personal judgement on whether they help you personally or not.
I think the point I am trying to make is that this is something that seems to take a while of hoop jumping to be acknowledged. It shouldn't be that way but many stories on this site have shown it is. Don't give up, try to show a pattern of dropping b12 (if they make you monitor it) to prove your body is not giving you enough. This might mean your 1st test now and another in 3 months but if you see a drop fight it straight away, dont wait until you are at the baseline again like I did. Also, if you have not already, try to get folic and ferritin (and fbc) checks. MMA and homocysteine tests may help, but may be affected if you already had loading doses (others may be able to advise better).
Finally keep your own records to monitor your blood results, a lot of people recommend it and it helps me feel a little more in control of my health.
I hope you make progress soon and get some support.
Thank you so much everyone, it realy is appreciated. It is also absolutely frustrating that we all have to go through this. I am doing mental health practice at uni and I think for my dissertation I am going to look at B12 & cause /effect. Surely preventation is so much better than cure? If nothing else I can do my own research.
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