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Original poster

Does anyone know about b12 deficiency and injections?

137 replies

SagaNorenMalmoCountyPolice · 02/09/2016 12:05

After a hellish few months of heart palpitations, severe fatigue, feeling dizzy and faint a doctor arranged for me to have blood tests to check my iron and b12 levels. Both have come back low, I have started to take iron tablets and had my first b12 injection yesterday, have 5 more injections over the next few weeks. Does anyone have any experience of this? If so how long did it take to feel better? Will I have to have these injections forever? Any advice would be much appreciated.

OP posts:
Bagina · 12/09/2016 08:15

Do you have to go to the surgery for the injections?

SecretMongoose · 12/09/2016 09:28

My surgery won't give me any more than monthly jabs, so I inject myself the rest of the time

braceybracegirl · 12/09/2016 09:32

Anybody had thinning hair due to iron and b12 deficiency? What does it mean by cofactor? My only symptom really was the hair and tiredness. I had my loading jabs 5 weeks ago and due to be retested in November.

YNK · 13/09/2016 00:22

Guidelines say no further testing when you are on treatment. You need to be 4 months clear of all B12 supplements for an accurate test.
Since there is no test that tells you what is happening at cellular level, treatments should always be determined by symptoms.

Cofactors are:
a good (low B6) B complex,
folic acid (amount depends on serum level and frequency of injections), magnesium and potassium rich foods.
A blood test is needed to determine if an iron supplement is needed.

Optimal levels (top quarter of the range) of folate (20ish) and ferritin (80ish) are needed to manufacture red cells.

I self inject daily, with my doctors blessing.

gleegeek · 13/09/2016 01:02

Just found this thread and it's making me decide I do need to see the Dr! I have nearly all of the symptoms described by Bagina and have been thinking I'm going mad or having panic attacks even though I'm not particularly stressed. I'm also really clumsy and regularly struggle with words. Thank you everyone for helping me and I'm sure lots of other people x

Bagina · 13/09/2016 06:30

Hi glee my gp did mention me seeking help for my anxiety, at the same time as saying I needed a blood test. I got the impression that she thought I was a bit of a crazy lady! I'll get my bloods results this week and report back. Get your bloods done, it's the only way to know.

bracey I have hair thinning/loss. I'll let you know if it's due to b12/iron deficiency when I get my results this week. Well, if my levels are low.

Bagina · 13/09/2016 06:33

glee I'm struggling with words too!! It reminds me of the brain fog when I was sleep deprived with my babies.

ButteredToastAndStrawberryJam · 13/09/2016 07:26

I also have most of the symptoms you are all describing. I had the blood tests, thyroid, ECG at GP's, all clear. when I asked about having a test to check my vitamin levels/deficiencies they said they don't do this. Have you all had these tests at you GP's or paid privately. Where is the best place to go for these tests. Hope you're all feeling better soon.

Davinaaddict · 13/09/2016 09:05

I've had mine done at the GP's instructions, although I've had to ask for them. Strange that they say they don't do this? Are you in the UK?
There are places that will do them for you - Blue Horizon is one that offers a discount through Thyroid UK I think, but I've not used them myself. The only trouble is, many GP's won't take any notice of blood tests not ordered by them, so it may not help your case with the GP, however it will inform you better, so you can decide whether or not it's appropriate to self supplement.

Davinaaddict · 13/09/2016 09:11

Bagina - mine reminds me of baby brain as well! Smile In fact, since finding out that nitrous oxide is a cause of reduced B12, I actually wonder if that's what started me off, as I don't believe I ever really recovered fully after the birth of DS. Of course that could be utter nonsense, but I did have a LOT during that labour Envy

Original poster
SagaNorenMalmoCountyPolice · 13/09/2016 10:51

My GP arranged my blood test but I had been going to the doctors for 10 months about my symptoms they've done ecg's, checked my thyroid levels etc but not b12. Things came to a head a few weeks ago and I booked an emergency appointment, I was feeling so unwell I cried at the appointment and the doctor (one I hadn't seen before) said my symptoms could be caused by low b12 and arranged the blood test.

I have used medichecks.com for blood tests before, you can do a lot of them as finger prick blood tests at home, they do the 'active b12' blood test which is supposed to be a more accurate test for b12.

Davinaaddict- I've wondered about gas and air too, had my 3rd baby a year ago and had lots of gas and air too!

I have my sixth and final loading injection tomorrow then the nurse has said I am to have them every 3 months but not to book it any earlier than that as they wont do it! My symptoms have improved and I have more energy so the injections and iron tablets have started to work for me, been a very up and down few weeks though. Curious to see how i do in the next few weeks, sounds like a lot of people need them far more frequently than 3 monthly so I'm guessing I've got to be prepared to go down again.

OP posts:
Original poster
SagaNorenMalmoCountyPolice · 13/09/2016 11:20

Sorry my last post should read my symptoms have started to improve.

OP posts:
Davinaaddict · 13/09/2016 12:24

That's great news Saga! But rubbish that the nurse has already said that they won't do them any sooner Sad They should be treating your symptoms not sticking to a predetermined schedule! Hopefully 3 monthly will be adequate for you, but if not, I'd be going back to the GP anyway.

I had mine tested months ago, they just chose to ignore it Hmm This is why I think it's so important to get sight of your actual numbers. I could have kissed my last GP who took one look at my results and said, oh yes, we can do much better than that!

I had injection number 2 yesterday. Luckily it wasn't as painful as the first one (which I've still got a bruise from!). But I'm wiped out today - and the heat isn't helping! I generally feel better than I did, but it's still up and down. I'm doing loads more than I was a couple of months ago though, so the self supplementing the B12 and iron has clearly done some good. Here's to onwards and upwards for us all! Wine

ButteredToastAndStrawberryJam · 13/09/2016 13:05

Thank you for the advice. I'll have to go back to GP again.

YNK · 14/09/2016 08:03

Hair loss and premature greying is definitely a symptom along with deep vertical ridges on nails, but if you look at the list of symptoms you will see there is so much more that you need to think about

www.b12deficiency.info/signs-and-symptoms/

There aren't many of us who can stay symptom free on 3 monthly injections. If you want to fight your corner with the GP there are lots of guidelines that say you should stay on alternate day injections if you have neuro symptoms. It's a tough fight but some people have had success. The alternative is to self inject with B12 bought from German pharmacies. It's perfectly legal and above board, and very safe too.

YNK · 14/09/2016 08:06

Testing is a minefield too.

www.b12deficiency.info/b12-testing/

SecretMongoose · 14/09/2016 12:02

I'd also recommend the b12 and PA support group on Facebook, it's a great source of information.
There are a few other things which can cause problems with b12 as well as nitrous oxide, such as ppi medication (omeprazole) and alcohol.

ButteredToastAndStrawberryJam · 14/09/2016 13:13

I've made an appointment at Doctors for Monday, I'll let you know how I get on. I've wrote down my list of 18 symptoms!

Bagina · 14/09/2016 13:28

Good luck. My results are back. "All fine". I'm seeing the gp to discuss them next week. The receptionist told me that my ferritin was 48 and b12 285. I want my ferritin higher.

Davinaaddict · 14/09/2016 14:11

Dammit - wrote a long post and lost it! Take 2 Grin

Good luck Toast! Hope you get what you need. It might be worth you taking a comparison of your symptoms to those on the Pernicious Anaemia Society site, just to give context as to why you believe you should be tested for B12 etc, just in case your GP doesn't think it warrants it. Not all GP's know much about B12, so it can be difficult to persuade them.

Those results are far from 'fine' Bagina Sad Optimal ferritin should be 70-80, B12 should be a minimum of 500! I'd recommend you post your symptoms and results here The posters there will be able to give you plenty of ammo to take back to your GP Smile

I'm feeling awful today. Thought yesterday was bad enough, but went to bed with a pounding headache, and despite the paracetamol, water and plenty of sleep, I still can't shift it Sad So I'm snuggled up with my DD watching Pocahontas before having to drag my arse out for jab no 3 this afternoon.

Bagina · 14/09/2016 19:55

Thanks Davina, up to my eyes in it today; will have a read of your post properly tomorrow. Sorry you're feeling so rubbish today Brew

ButteredToastAndStrawberryJam · 15/09/2016 06:28

Thanks Bagina and Davina, I will have a look at the Pernicious Anaemia website.
Hope you're feeling better soon. I had a pounding headache the other night too, went to bed at 7pm for 10hrs, my normal amount of sleep is about 6, so I must have needed it, the headache went luckily, sometimes they go on for around 3 days though, do yours go on this long?

NotAsYoungAsIWas · 15/09/2016 06:44

My 18 yr old DD was diagnosed with a rare AI disorder in 2014. She is on a range of medications (which bring their own complications!!) and was on B12 jabs every three months. She has been told that they are no longer necessary. Quick silly question - how will she know when/ if she will need them again?

Original poster
SagaNorenMalmoCountyPolice · 15/09/2016 11:39

How are you feeling today Davina? Hope your headache is better, I had headaches after my first 3/4 injections. Had my last injection yesterday morning and was exhausted all day but have lots of energy this morning and I've been out for breakfast and then driven to the supermarket on my own which I haven't done for a long time!

Sorry the doctors are dismissing your results Bagina, must be very frustrating. Like Davina says have a look at some of the b12 support groups for advice, I look at the health unlocked one a lot, some good info on there.

Butteredtoast: I've had lots of headaches these past few months, some have lasted a few days. Good luck with your doctors appointment.

NotAsYoung: I'm sorry I'm not sure but hopefully one of the other posters will have some advice for you.

OP posts:
Davinaaddict · 15/09/2016 15:30

Thanks Saga - still got the headache today Sad It's been on and off since Tuesday night. I'm wondering whether this weather is part of the problem..... On top of that I had to go pick my DD up from school early as she tried to knock herself out in the playground! She's fine luckily, and we've spent the afternoon watching Tinkerbell movies together Smile

Great that you're feeling better today Saga - woohoo for the supermarket run! Grin

NotAsYoung, I suspect that her symptoms will tell her she needs more. Usually they say that testing before she's been clear of any supplementation for 4 months will be skewed, so there's not much point doing any testing before then. Did they establish the reason for her being B12 deficient? If they've not addressed that (assuming it's not down to her diet?), then I would think her B12 will drop over time Sad