Hi
After months and months of appointments with my gp and the hospital today I received a letter telling me my b12 levels are 90 and I must start injections urgently.
I got told my levels were low in June but no repeat bloods were done although my doctor said he was going to back in September.
Ive felt like ive been going mad. My body has been mimicking most signs of pregnancy even lactation (has any one else experience this?). I've been so ill, tired and depressed for months but still had to push for repeat bloods to be done last week that have provided these reading of 90 which I believe is quite low?
My doctor at the hosp cannot see me for over 3 weeks to speak to me about what these injections in tail and I have no idea what to expect. I work full time and I'm worried these jabs may make me ill?? Do they?
Also I've read if u have low b12 levels it's dangerous to try for a baby? Is this true? I'm very worried me and my partner should stop trying to conceive but can get no advice?
Any help would be massively appreciated
Thank you x
Sorry just thought I'd add I'm 24 years old and up till 10 months ago I was perfectly healthy. I worked 65 hours a week went running and working lots. I went out with friends all the time and had a great social life.
Now I work 45 hours a week sleep and don't go out hardly ever. This has totally changed my life so can't wait to start treatment!!
Hi Georgia
You must feel dreadful with such a low b12 reading. Do you have neuro symptoms such as memory loss, tingling sensations?
I hope your folate and ferritin levels were checked. B12 needs folate to metabolise into cells. The injections will help you a great deal. You should receive 3 per week for at least 2 weeks.
Once you have b12 loading your prospects if conceiving will be much better. There are ladies in a b12 support group of which I am a member have had healthy babies xx
Another case of GPs not getting to grips with B12 deficiency. Disgraceful.
Can anyone advise this lady about the pregnancy issue?
Dear Georgia, so sorry to hear about your diagnosis and symptoms. Your level of 90 is very low, and I do hope that with the injections you will begin to feel better very soon. Are you sure you aren't pregnant, as I've not heard of the symptoms you describe? Maybe someone else on here will be able to answer that question for you.
The injections are not something to worry about, and the usual way to have them is six injections over a fortnight. Then you have one every three months. If you feel you need more than that, it seems to depend on your GP. Lots of us supplement, and take B12 by a sublingual spray, nasal spray or tablets. Not sure if you can do this if you're trying to conceive. You really need a GP to sit and explain everything to you properly.
i can recommend the book "Pernicious Anaemia the Forgotten Disease" by Martyn Hooper, it talks you through all the causes of low B12, and offers advice. Best wishes to you, and I hope things improve soon. Marion
hi georgia. so sorry to hear of your low B12 & the 'dozey' Medics. re pregnancy: you need to do a pregnancy test to confirm one way or the other. occassionaly, when ppl are trying to get pregnant, the body can erroneously mimic pregnancy with many of the physical symptoms presenting. however, it's a very rare occurance.
in respect of trying to get pregnant with a low b12: it's best to wait until your b12 reserves are restored & you are feeling well in yourself again. sometimes a low b12 can cause miscarriages. it's always best to be in the peak of health when trying to concieve. that way you're likely to have a great pregnancy & a positive birthing experience. all good wishes
Caitlin.
Phantom pregnancy is not a usual sign of B12 deficiency so you may still need to check in with the hospital. Your Gp may want to run some additional blood tests before starting treatment. He can do it. You will probably get 9 injections over a month then once a month or so. They won't make you ill, rather quickly feel much better. You may also want to take a folic acid supplement which is recommended for those seeking to get pregnant.
You could wait the three weeks but I doubt you need to. Your gp should have had a letter giving what they have in mind. It is pretty routine for them although they may not be up with the all the details.
Hi Heather thank you for replying.
Ive felt absolutely dreadful. It's made me not recognise myself any more and be so worried I was loosing my mind so great to get somewhere finally. 
I have had a lot of pins and needle type feelings in my arms and legs for months this seemed to be what spered them into doing more tests. I have forgotten full conversations, seeing people and things that have happened that were quite important. I put it down to how tired I was feeling and even tried to blame it on drinking just 2 ciders 1 time. Are these common symptoms?x
Hi Marion
Thank you for replying to my message.
I've got my first injection 2moro so fingers crossed I'll soon start to feel better.
When I first started feeling unwell I was convinced I was pregnant and only went to the docs when I kept getting negative tests. They ran bloods and even did an ultrasound to try find something. Heartbreakingly every test was negative. As I'm still having no periods (this will be my 10th month without and with only a few days of light spotting) I am regularly testing for pregnancy. So yeah I'm certain I'm not which is why the lactating is even more confusing. I've had a corse of tablets to try stop it and that hasn't helped either.
I can't wait to see my doctor for some answers but to be honest I think my case has left everyone I've seen totally baffled!! X
Hi caitlin
Thank you for messaging me.
When I first started feeling unwell I was convinced I was pregnant and only went to the docs when I kept getting negative tests. They ran bloods and even did an ultrasound to try find something. Heartbreakingly every test was negative. As I'm still having no periods (this will be my 10th month without and with only a few days of light spotting) I am regularly testing for pregnancy. So yeah I'm certain I'm not which is why the lactating is even more confusing. I've had a corse of tablets to try stop it and that hasn't helped either.
I didn't realise b12 could increase miscarriages. One thing I have been wondering if perhaps months back I was pregnant and miscarried, I thought that may explain the lactating. I also wondered about phantom pregnancy but my doctor told my my hormone levels would have been raised if that were the case and they were not.
I'm looking forward to feeling myself again and getting excited about the chance of pregnancy so cannot wait on start these injections.
Thanks again for your kind words x
Hi Chris
Thank your for your message.
When I first started feeling unwell I was convinced I was pregnant and only went to the docs when I kept getting negative tests. They ran bloods and even did an ultrasound to try find something. Heartbreakingly every test was negative. As I'm still having no periods (this will be my 10th month without and with only a few days of light spotting) I am regularly testing for pregnancy. So yeah I'm certain I'm not which is why the lactating is even more confusing. I've had a corse of tablets to try stop it and that hasn't helped either. After that the doctors seemed totally out of thoughts which is why they looked more at a deficiency.
I've been taking folic supplements for nearly a year. My reading for that were still low recently but I suppose that's standard when you have low b12? Is that right?
Thanks Georgia x
Hi again Georgia,
just letting you know there are lots of people here who are wishing you well.
Do hope you get some answers soon, and that you begin to feel better after your injections. If your B12 has been low for a while it will take time for the levels to build up again. Normally we store it in our liver, and there is usually a few year's worth stored. So once we show symptoms, it means we have been running out gradually. Like a car running low on fuel! Hardly a surprise that we end up feeling so exhausted! Good luck with the injections. Let us know how you are doing. Marion x
hi georgia
i'm soooooooo sorry to hear you've been trying to concieve, but with no luck so far. i know, how bruising & all consuming that can be. however, georgia it's very early days.
your body is tired & 'run down' presently evidenced by the low b12 levels. it needs time to restore it's levels of b12 & subsequently it's energy. you've been working exceptionally hard lately i.e. 45/65 hrs per week, so your body will be running on empty.
often when we don't fall pregnant, it's the body's way of telling us 'i'm not quite ready' @ the moment, when rested & well nourished it'll be fine & dandy & ready for concieving. in your case, my guess is, that the low b12 levels levels is most likely a factor.
right now, your body needs loads of TLC, rest, good nutrition, relaxation & the b12 injections. my hunch is, that you'll not know yourself when those b12 levels are back to normal & getting pregnant will happen naturally. so be kind to your body & it'll do you're bidding when your energy . btw, we're all rooting for you on here. keep us posted.
Caitlin
p.s. georgia: that should have read 'when your energy returns' - my browser is playing up presently.
Caitlin.
Yes they are common symptoms of neurological b12 deficiency. You should receive alternate day loading injections until no further neurological improvement then injections every 8 weeks. Ensure your folate is in the high end of normal as b12 uses folate to metabolise into your cells. Ferritin (iron store) should be mid range too. When the b12 enters your cells your body will use iron when producing new blood cells. Also take a b complex each day to keep other b vitamins at good levels because they can lower due to your low b12.
Ps. I sent you a personal message xx
hello PA supporters:
from expereince, i wonder if anyone could say: roughly how long post commencement of the b12 injections should one begin to experience improvements?
i understand many variables such as levels of depletion etc. will impact.
with thanks
Caitlin.
Hi Caitlin,
This is like a "how long is a piece of string" question! Everyone will be different, and some of us who have been deficient for a long time will never see much of an improvement. This is because some nerve damage becomes permanent if it's left too long. Generally speaking, I would expect to see some changes after three to six months. Your GP will probably want to do another blood test around three months after your loading doses. Just to see how well you've retained some B12, compared to your levels prior to the injections. Sorry I can't be more help than that. My loading doses were in late Feb/early March, and I'm still struggling with some symptoms, although some things are better. Less tired for example. Good luck with everything Marion
thanks marion, that helpful. it helps put the ''magic bullet'' expectations in perspective. btw, do u know if there's any way of knowing how long the depletion might have been extant?
with thanks
Caitlin
Hi again Caitlin,
It's hard to be sure how long you've been deficient, because it's a gradual decline. When everything operates correctly the stores of B12 in the liver are constantly being topped up. When it all goes wrong we continue to use what we had stored, until it runs out or runs low enough that we get symptoms.
Because the symptoms can be hard to notice at first ( increased tiredness), we try and explain things to ourselves. For example, I was coping with tiredness, aches and pains in muscles and joints, and putting it down to ageing. Someone younger, who is out on the town a lot might just think they've been overdoing things a bit. A young mum could be having broken nights with a baby. We don't actually see a Doctor, until things have got pretty bad. So maybe we've lived with a gradual loss for three years or more before we see the Doctor. Then he might say we're just a bit run down, and come back in a month if we don't feel better? We often get other diagnoses until they eventually hit on the low B12. I'm guessing we could have had this gradually worsening situation for four or five years. The gentleman who wrote Pernicious Anaemia the Forgotten Disease was actually at the stage of collapsing in the street before his was picked up! Scary isn't it? Do hope things go well for you. Marion
Hi Marion, Thank you for explaining how things develop in such easy-to-understand terms. I'm sure this is what has happened to me. I have mild PA, my menopause is late. I've been describing my symptoms to doctors of many years. They gave me iron (which wouldn't have helped much without B12) and I've plodded on. Finally, my stored iron was depleted and I reached rock bottom. All I need is lots of B12 jabs, some iron, and I'll be fine. Why my GPs have made such a drama out of it, I'll never know. I had a gastroscopy 2 days ago. It was not the simple, painless proceedure I'd expected. It was frightening and painful.
And they found nothing - which was exactly what I expected. This whole saga is being driven by my GPs reluctance to permit more frequent B12 jabs which would solve the problem - cheaply, safely and easily - in no time at all. Baffling.