B12 needed before 3 months is up...help!

[Justified]

for a month after my loading doses i felt "back to normal". Tackling housework with a vengeance, things that had needed done for a long time. I even got my music back on and had really good energy, along with sleeping well for the first time in at least a year. Seven weeks in now I am back to square one. Physical symptoms like swollen bluish hands, nosebleeds, staggering, insomnia, breathlessness & total fatigue, itchy perineum, to name but a few, have returned. I have made an appointment to see my GP as I am desperate. How can I convince her to give me B12 shots now instead of waiting over a month. The thought of this frightens me. Can someone tell me where I can buy the phial to inject myself if my doctor refuses?

[jillc39]

I shall be interested to know what your gp says - as you will see from many posts here that on the whole gp's do not like to see people back before three months. so do let us know what happens . if you have to move on to self inject there is lots of help here for you. read on................

[Cooper74]

Oh my gosh sorry to pick up on your itchy perineum but is that a symptom of B12 deficiency? I hadn't seen it mentioned anywhere else but I have suffered it too and it's driven me crazy lately. Didn't mention to doc as assumed it probably wasn't connected at all (plus it's a little embarrassing too!)..... Was your B12 below range or considered 'normal'? Just wondering because mine was 215.

[Justified in reply to Cooper74]

My b12, folate & d were all low but don't know levels. I have suffered fro IP for a few years now and used to get HRT cream now & then as I thought that was the cause. Since being on B12 it all disappeared for 7 weeks but returning along with so many other symptoms. I will pm you later with other personal symptoms that definitely went away so must be a link somewhere.

[Martina22 in reply to Cooper74]

Oh, gee, I've had that too for many years... so I understand I must have a lack of B12 since I was much younger, probably when I was only a teenager. It all began with a cystitis and other frequent infections when I was 14.... The itchy perineum, yeah, I've had that from when I was in my twenties. I'm 56 now....

[wedgewood]

You can buy Hydroxocobalamin ,which is the b12 that is used by your doctor if you are in the uk, from German Amazon----Amazon de. Search for " B12 Ampullen" and make sure you order the Hydroxo as Cyno is also sold there . Needles you can buy at Amazon uk.

[Justified in reply to wedgewood]

Thank you for the information great help x

[Foggyme Administrator]

I get my B12 (Hydroxocobalamin) from mycare.de (which has English translation pages) and syringes, needles, alcohol swabs and a sharps box from Medicare.co.uk. or exchange supplies.org. If you do order, check the boxes to make sure that you are not buying Cyancobalamin (commonly on sale in Europe).

Just a thought...if you are having any neurological symptoms, you should be having your B12 injections every other day until no further improvement, as per BNF and NICE guidelines. Very few doctors follow these guidelines so if you need to go down this route, it may help to print off some guidelines and take them to the surgery to show your GP.

Sorry, but too fogged to list the guidelines but if you want to see them, click on my username and go to my first post. People here sent me lots of really good information and if you have a trawl through, it'll give you some really useful information and ideas about how to deal with this tricky thing called B12 deficiency.

I can so understand the pleasure of being able to do housework (words I could never have imagined coming out of my mouth!). I'm new here and long for that day! Sleep and music are still a distant dream.

Good luck with getting the amount of B12 you need to get and keep well.

The self injection route has worked for many people here and if you do decide to go down that route, there are people here to help you if you need more support.

Take care.

[Justified in reply to Foggyme]

Thank you so much for your help x

[Hidden in reply to Foggyme]

Well said foggyme.

[clivealive Forum Support]

Justified You really do need to push your Doctor for more frequent injections until your symptoms subside as per the NICE and BNF Guidelines

Treatment of B12 deficiency in people with neurologic involvement includes:

Seeking urgent specialist advice from a haematologist.

Management should ideally be guided by a specialist, but if specialist advice is not immediately available, initially treatment with hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then hydroxocobalamin 1 mg intramuscularly every 2 months should be considered — where B12 deficiency is not thought to be diet related.

I'm not a medically qualified person but I think you should tell your doctor that you intend to self supplement with B12 otherwise when the improvement kicks in she will quite happily go along with her current treatment regime thinking that "one size fits all" to the detriment of the next P.A. patient who comes along with the same problems you describe.

A recent "handout" by the PAS headed AN UPDATE FOR PRIMARY HEALTHCARE PROFESSIONALS can be found in the library section on their website. This two page document can be printed off by members (membership costs only £20.00 for life) and handed to their doctors. It even gives them the opportunity to:

"LEARN MORE AND EARN CPD POINTS TOO

Go To The App Store and Download the ECPD App Register and Search for B12.

You’ll earn 1 full unit of CPD on correctly completing the ten questions on the new guidelines."

You say "My b12, folate & d were all low" - now you are on injections you need to keep your folate levels high as they work hand in hand with each other.

I wish you well for the future

[Sleepybunny]

"How can I convince her to give me B12 shots now instead of waiting over a month. "

As Foggyme mentions if you have B12 deficiency with neuro symptoms the standard UK treatment includes loading doses every 2 days for as long as the patient continues to get better then injections every 2 months. How many loading doses did you have?

UK B12 treatment info

patient.info/doctor/pernici... See Management section for treatment info based on BNF (British national formulary) Chapter 9 section 1.2

Google "BCSH Cobalamin and Folate Guidelines" page 8 has details of treatment. I also found page 29 useful. I gave a copy of the BCSH document to my GPs.

Link about writing to GPs if unhappy with treatment. Point 1 is about undertreatment of neurological symptoms.

b12deficiency.info/b12-writ...

Symptoms lists

I ticked all my symptoms and gave a copy of PAS list to GPs.

pernicious-anaemia-society.... See Symptoms Checklist

b12deficiency.info/signs-an...

B12 books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Martyn Hooper is the chair of the PAS. His book above is up to date with latest guidelines. I gave a copy to my GPs in the hope they might become well informed. He has written several books about PA and B12 deficiency.

"Could it Be B12" by Sally Pacholok and JJ. Stuart. A very comprehensive book about B12 deficiency.

PAS

Do you have a confirmed diagnosis of PA (Pernicious Anaemia)? The PAS can sometimes intervene on behalf of members and can point people to useful info. Lifetime membership costs £20.

pernicious-anaemia-society.... 01656 769 717

There may be posts on Martyn Hooper's blog that are relevant to you.

martynhooper.com/

UK B12 documents

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines"

Fbirder has compiled a useful summary of mainly UK b12 documents. If you search for his posts you should find a link. i plan to give my GPs a copy of the summary at next appt.

[scorpiojo in reply to Sleepybunny]

I have just received my book 😊 it's great.. Worth buying

[laurporr]

would be interesting to hear how you get on with your GP. I am in the exact same position, had my 6 loading doses felt a lot better for maybe around a month then was right back to square one, no energy, having trouble concentrating my visions went all funny again. my next injection isn't due for another month but did call up to see if having it sooner was a possibility I was told no by the nurse. I'm totally miserable now as the thought of continuing on feeling this way makes me want to burst into tears!! but after reading on here that many people have had injections every month and even self injecting I see no reason why we should be refused! hope you get on ok!

[shipscat]

Me too! I'm 4 weeks into my first 12 week injection and the symptoms haven't really gone away, palpitations, pins and needles, dizziness, aches and pains. I asked the nurse if I could have more frequent jabs and she said 'you might get them every 10 weeks if you're lucky, but its down to the supply from the drugs company' I don't believe this!! I've heard that B12 cost the NHS very little so why do they keep us all on the bare minimum?. I'm going to heed the advice of this forum and see the doctor armed with as much info as possible.

[Foggyme Administrator in reply to shipscat]

Hi Shipscat. I notice that you say you have pins and needles and dizziness. These are neurological symptoms. Both NICE and the BNF state that treatment for B12 deficiency with neurological symptoms should be every other day until not further improvement takes place (see replies from Sleepybunny and myself, above).

This is really vital to prevent potentially irreversible neurological damage.

The nurse is talking nonsense. Rubbish, rubbish and more rubbish! And I fail to see how it can be down to supply by the drugs companies, since she will be responsible for placing the orders! The drugs companies will be keen to sell as much of their product as possible!!!

Really pleased that you're going back to your GP. Good luck

[shipscat in reply to Foggyme]

Thank you Foggyme and apologies to Peggy for hijacking your post. I hope you get answers soon. I'm too afraid to self inject I can't bear to look when I have a jab. I'm off to the doctors tomorrow as luckily on Wednesday mornings there is a drop in clinic.

Fingers crossed!!!

[Foggyme Administrator in reply to shipscat]

Apologies to Peggy also! Hope all goes well ships cat.

Self injecting only scary the first time. I know it sounds crazy but...you could always practice on an orange. Stops it being scary and helps you get the feel of it.

Good luck

[Justified in reply to shipscat]

Not hijacking at all. Very interesting reading other people's experiences. So much help on here.hope you get on ok at your doc's

[grigmay57 in reply to shipscat]

yes they are really cheap about 63pence a shot yet my doctor want change my eight weekly doses his statement was that you can get addicted to it ! excuse me but I don't think so the amount of people who suffer before their next jab is due is unbelievable but the nice guidelines are never changed it needs looking into, I am just considering buying patches I found this time around I've waited that long for the injection now I'm poorly being checked for pneumonia now on antibiotics I must have been that low so at th minute fed up.com comes to mind

[Hidden]

When you visit your GP. Explain your symptoms adding abit on. Tell her you fear for your health. Mention you can' t function properly, quoting the difference before & after shots. Then, after injection. Go and buy supplimenta from Holland & Barret, worked for me. Good luck.

[shipscat in reply to Hidden]

I currently supplement with sublingual drops and tablets. I think it helps a little but not sufficient as I have been told I have PA and my level was very low when tested (106), VitD was also low and i take daily supplements. I also have under active thyroid it seems these conditions go hand in hand!

[jillc39 in reply to shipscat]

if you have PA diagnosed shipscat then you will only get minimum amount of b12 from supplements - you cannot absorb b12 other than by injections.

[Martina22]

Dear Peggy, You sound so desperate and are very articulate in expressing your problems and the right remedy and your anxiety about not getting it. I hope you will convince your GP. Sometimes it takes written text to convince a GP. If you express your willingness to inject yourself, maybe you make it easier for them to give you the right amount of B12 and needles.

I sometimes think it is a burden to GP's and their assistants having to inject their patients as more and more people ask for this simple and efficiënt remedy.

[Justified in reply to Martina22]

Thank you Martina. I will tell her I will inject myself. My daughter is a nurse so would be no problem for her. Apart from all these symptoms which are helped with B12, I don't see why I should be put in a position where I could end up with dementia...think I was getting pretty close before my injections lol. I can hardly walk for pain in my legs and back,so desperate situations call for desperate measures. If they don't give me them I will HAVE to buy online

[jillc39]

please let us know what happens. my gp wont listen to anything I say, and I take all kinds of print outs with me.

[sweetnessandlight]

Hi Peggy. You mention that you don't know your levels. I advise you to always get copies of your blood results. When I did this I discovered that my folate levels were through the floor for many months and my gp hadn't mentioned it. It is important that your folate levels are near the top of the range to make any use of your b12 jabs.

[Justified in reply to sweetnessandlight]

I am presently taking 5mg folic acid plus colecalciferol800iu Vitamin D3. I will ask what my levels were, thanks

[Justified in reply to sweetnessandlight]

Hi there. I've been to my doctor but saw a locum. She didn't know my history. I practicality begged her even saying my ENTspecialst says my tinnitus &hearing loss is nerve damage. I also showed her blood bursts (lesions )on my legs exactly like the pic on this site. incidentally, I have been getting these for years now but didn't know they were connected. She said you can be like that if you have had a cold or these things just happen from time to time! I told her I was concerned about my health deteriorating. Also showed her my massive split down my thumbnail. She sent me for another test ! They have lost my intrinsic factor results so had to do that again also. My b12 level last time was176 which she said was only slightly low. Folate level 2.2??. I have bought sublingual tabs out of desperation

[sweetnessandlight]

So pleased to hear that. You are legally entitled to a copy of your results. Sometimes" they're fine" is not what you discover when you get them and it is very useful to keep a file of results so that you can compare. I can never remember the individual figures.

[Sleepybunny in reply to sweetnessandlight]

I agree with sweetnessandlight, I did find on more than one occasion that what i had been told was normal over teh phone or even face to face was not always normal when i got copies.

I learnt to always get paper copies of my results. There may be a small charge per sheet..usually costs me about 50p per sheet. I found it useful to see how results changed over a year or so.

I'd urge you to contact the PAS. contact details in one of my posts above.

[Justified]

Thanks. ..I will do x

[Gilly]

how did you get on?

[Justified in reply to Gilly]

Hi there. I've been to my doctor but saw a locum. She didn't know my history. I practically begged her even saying my ENT specialist says my tinnitus & hearing loss is nerve damage. I also showed her blood bursts (lesions )on my legs exactly like the pic on this site. incidentally, I have been getting these for years now but didn't know they were connected. She said you can be like that if you have had a cold or these things just happen from time to time! I told her I was concerned about my health deteriorating. Also showed her my massive split down my thumbnail. She sent me for another test ! They have lost my intrinsic factor results so had to do that again also. My b12 level last time was 176 which she said was only slightly low. Folate level 2.2??. I have bought sublingual tabs out of desperation