Does anyone know about b12 deficiency and injections?

[SagaNorenMalmoCountyPolice]

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.

Well, I went to doctors this morning, still non the wiser. Apparently I was checked before for my B12 levels and they were 1106. The Doctor thinks it might be anxiety but is going to confer with another doctor about me. Also gave me a telephone number of somewhere that can help with all sorts, including anxiety.
Hope you're all feeling better.

Exhausted here. Not due jab till October 6th and I'm shattered.

I rang to book my appt today & they have delayed me by 3 days because of the 'flujab'

I really need my injection on time, I'd bloody like it early by about 6 weeks but 3 days late is unfair

That's rubbish Toast When were you tested for it? That's a good level, but it can drop pretty quickly as it's used every day. Did you manage to get a copy of all your bloods? There may be something else in there that may benefit from looking further into (thinking thyroid / vitamin d plus others). It's hard when so many things cause similar symptoms

Bonkerz - can you back and ask for more frequent injections based on your symptoms?

Katymac - that's rubbish! Surely the flu jab can wait more than your B12?? Sometimes there is just no sense in these doctors

Sorry to hear people are struggling and need injections sooner, seems so crazy how people are limited to 3 monthly injections and most people need them sooner.

Thanks for your experiences Mongoose and YNK on injecting more frequently, glad to hear it helps your symptoms. Terrible that you were misdiagnosed for so long YNK.

How are you now Davina? Have you got any more energy?

I'm still not feeling well, I've been back to the doctor this morning and they are referring me for a CT scan, my main symptoms are headaches, dizziness and 'funny vision' (fatigue and feeling faint has got a little better) so I'm glad they are checking me out as I've said before I'm worried it's something more than b12 So feeling quite scared now but also glad a scan is in motion.

It's always good to get checked just in case but honestly, headaches, dizziness and funny vision are all 'normal' symptoms of b12 deficiency.
I think it's seen as 'just' a vitamin so maybe isn't viewed with the same seriousness as say diabetes, but a lack of treatment will disable and /or kill you.
Have you had a look at the pernicious anaemia society website? There's lots of info on there on symptoms etc.

Davina I was tested about 9 months ago for B12. I've had these odd feelings for a couple of years now, I can still work, so not as bad as some of you are going through. I just don't feel right, I said to the GP, the most concerning symptoms are the more prominent pulse feeling all around my body, dizziness and palpitations now and again. The doctor said my thyroid was fine.
The doctor phoned me up yesterday and said they'll send me for another heart test, I think it'll be a monitor, I'll wear it all day at home. I had a 25 second heart test at doctors 9 months ago which was clear.

Everyone being rationed with the injections, that's just awful, they must be expensive maybe.

Thank you SecretM that is reassuring. I have looked on the PA website and others and I know dizziness comes up a lot but haven't really seen as much about headaches. I've found it so disappointing that I don't feel a lot better after the loading injections. Also it doesn't help that my mind is so foggy at the moment it's hard to think clearly and I am prone to a good worry about things!

Buttered - I've had heart palpitations over the past 10 months too, it really is horrible isn't it. I assume they checked your iron levels when they checked your b12? Might be worth finding out what your iron levels were, if they were only just in range maybe that could be causing the heart palpitations?

Sorry you're still struggling Saga It's nice to feel that the doctors are doing something though.

I'd get them to rerun the tests if they will Toast. And make sure you get a look at the actual results. I was told my thyroid was fine, yet my TSH was 4, which is not fine (should be 1-2 for a healthy person), but because it was in range, it was ignored. I've pushed for more testing, which I'll find out the results for on Friday.

There's a poster on the FB group at the moment that is really helpful when it comes to symptoms. I'll see if I can get a pic of it.

I'm with you on not feeling better with the loading injections - last one is tomorrow, but if anything my symptoms are worse I just hope I get some answers this week!

Hope this works!

Saga Yes, the palpitation are frightening. The doctor said my iron was fine, she said better than hers, I'd say she's around 20 years younger than me too.
Davina I can't see them testing me again. I'll see what happens with the heart test, then I'll just keep on at them to keep investigating. Hopefully your results on Friday will give you some answers. The thing is, they told you the thyroid results were fine but the doctor was wrong, doesn't give you much faith in them does it. I know they have to know a little about a lot of things but still, not good is it.

My doctor seemed very interested in finding out the reason for my problems but didn't seem very interested in my long list of symptoms I had written down and taken with me. I just don't know what to think of the doctors sometimes. Seems like a lot of people have to fight for a diagnosis for all sorts of problems and the people that haven't the energy etc just get left and forgotten.

My first doctors were the same. I don't understand how they can even attempt to diagnose anything if they're not prepared to listen to the symptoms! Especially when the types of symptoms we're talking about are similar for so many different causes.
I hope your chest X-ray goes well. If your doctors refuse to retest you, you could always consider a private test. And I strongly recommend you get a copy of your actual results. You might be surprised at what you find on them - I certainly was, and wouldn't be on the journey I'm on now if I hadn't I'd still be stuck with no help, being told I have CFS and to stay at home and get better

I've been wondering if b12 deficiency is the cause of symptoms I've been experiencing. For over a year I had almost daily pins & needles, mostly on the right side. I had an MRI which ruled out various possibilities.

Weirdly the pins & needles stopped soon after the MRI (some months ago now). I put this down to the oral b12 supplements I'd started, as I'd had a fbc and was told my b12 was slightly low - 152 where normal is 160. (I'm not in the UK, so not sure if the range is different). I haven't been back to the dr since the MRI.

The thing is the pins & needles have started to return and it's worrying me. Also, if I accidentally bang my hand off of something, my nerve ends feel jangly. I'd also say I have a dreadful memory. To add into the mix I have an under active thyroid...

Sounds like it ScribbleJoy You really need to be clear of B12 supplements for 4 months before they stop affecting your blood tests, so depending on when you had the tests done, your results could have been lower that the test you had. Were you treated for low B12 at all? Surely they should have treated you as you were below the range ? I'd get retested and see what that says.

Well, I've had my final loading dose and the nurse said my next one will be in 3 months now, so it looks like there is a plan to continue, which is good I suppose. I'm feeling awful today The pins and needles and dizziness are back now, which I suspect is because I had so long between this one and the last one (5 days). So it seems that they have been doing some good, but looks like I need more to sort the neurological symptoms Fingers crossed, my doctor on Friday is open to it.
How's everyone else doing today?

Hi Davina, glad to hear they are going to give you more injections, hopefully the doctor on Friday will agree to some more loading doses as well. Sorry you feel awful though, sending

I've felt awful today too, terrible dizziness, eyesight all blurry and feel so weak, luckily MIL has had my youngest and my mum collected my older two from school so I've been able to rest. I was so happy a few weeks ago when the doctor phoned with my blood test results and said I would be having b12 injections, I thought brilliant I'm going to feel better! So I find it so disappointing that I'm not. I'm the same as you, I felt worse with the loading doses, I can only assume from the people who self inject that eventually you do feel better from them.

I've made another appointment at the doctors for next week and I'm going to ask if I can have the tests for Pernicious Anemia (I know they're not 100%) I really would like to get to the bottom of why this has happened. I've found some info about the tests and it says some labs like you to be 2 weeks clear of b12 injections, which I will be next week:

labtestsonline.org/understanding/analytes/intrinsic-factor-antibody/tab/sample/

After that I'm going to look into self injecting.

ScribbleJoy - I know the ranges vary in different countries but I'm sure 152 is very low no matter where you are! My level was 179 (normal range where I am is above 190) and I felt awful. I got this book and have found it quite informative, might be useful to you:

www.amazon.co.uk/Could-Be-B12-Epidemic-Misdiagnoses-ebook/dp/B00MERDLOE/ref=sr_1_1?s=books&ie=UTF8&qid=1474477840&sr=1-1&keywords=b12+deficiency

Have taken the big step tonight and ordered b12 from Germany. Spoke to a nurse friend who is getting me needles and will show me how to inject. Can't carry on like this.
I was so tired this morning I could have cried.

I have b12 every 8 weeks and I definitely know when it's due. I'm on 3 iron tablets a day too ferrous fumarate.

Sorry within 48 hours I feel better.

Let us know how you get on Bonkerz. I'm sure it's something you get used to doing quite quickly.

DooWhop - That's good that you feel better quickly after your injection. What are your symptoms?

Thanks for the replies Davina & Saga, sorry to read you're both feeling awful . Hope you feel better soon.

Davina, my Drs advice at the time of the blood test results was a dietary sheet & oral supplements. She didn't seem too concerned. I'm going to stop taking the supplements and get retested in 4 months. I really didn't realise how serious b12 deficiency is!

Saga, thanks for the book link, I'll take a look at it.

Saga, bought the book, hope it will answer some questions, thanks.

Yes, me & DD both have PA

Have a look on THIS WEBSITE & on the "useful links section you will see "Pat Kornics Facebook Group" you will get a huge amount of advice & support there - unfortunately IME & tens of thousands of others, the NHS isn't great at treating this adequately.

You need to be taking several co factors to get the best out of your injections & I'm guessing you haven't been told that

I should add - I gave up with doctors as I was too busy fighting for my daughters treatment who by then was gravely ill & wheelchair bound on a good day - her loading dose got her walking & back to school again, even though her blood results were all in so called normal range

I now self inject as I prefer to have control over my own treatment, rather than having to keep on begging for adequate levels of maintenance jabs. Many of us do this & its much easer & more accessible than most people presume. Our GP did come round in the end & DDs treatment is great with a double loading dose & monthly top ups, but after a 7 month fight to help her, I couldn't have done it without SI, as I was far too ill myself