Help!!

[Bigdog1989]

Iv recently been diagnosed with P.A and got my 6 starter injections, things were going better than they had been but still not great, I’m due my next B12 shot in 3 weeks as I’m on one every 3 months, however the past couple of weeks have been hell! I’m falling asleep again all the time my hands and arms r constantly shaking, I’m short of breath and very dizzy! I went to my doc to ask can I have it early as this is how I was feeling and she said NO!!! There only licensed to give them every 3 months! Is this true? Even as I’m texting this my thumbs are shaking so much, it’s literally hell, I’m a 30 year old male with 3 kids and I can do nothing with them I’m that tired

[wedgewood]

No that is not true . There is a new directive Tell him /her to look them up . ( but be careful how you put it !) .You can have an injection every 2 months after the loading doses . Many people need more often to keep symptoms at bay . I have to self -inject once a week to keep well . We are all different . Come back here if you get no joy .

[Bigdog1989 in reply to wedgewood]

Thanks for the reply, my B12 in blood was 105 and now it’s 400 since my loading dose, it’s so debilitating it’s unreal, so tired every day and shaky

[wedgewood in reply to Bigdog1989]

You obviously need many more injections . I can remember how I felt over 3 years ago . The desperation I felt when the doctor implied it was all in my head when I asked for more regular injections. Until I found about this forum , I was really up a creek without a paddle . I was really very unwell until I found out how to self inject. Now 3 years on I feel fine . Only have burning feet now ,which I suppose are permanent . But the numbness has gone . You will get there eventually . Best wishes .

[BirdlessBox in reply to wedgewood]

FYI, there is also another Vitamin deficiency that can cause burning feet that might be worth trying if all your other symptoms have eased, I think it might be B3 from memory.

[wedgewood in reply to BirdlessBox]

Thanks , I’ll look into it .

[Gambit62 Administrator]

as Wedgewood says ask your GP to check the BNF.

hydroxocobalamin is licenced for use every two months and this has been the case for a very long time. Standards (eg NICE and BCSH) distinguish between deficiencies that involved neurological symptoms and those that don't and the standard for non-neurological symptoms was maintenance doses every 3 months. However this changed last year to be every 2-3 months (as listed in the BNF)

Local health authorities do produce their own standards and some can take a very long time to update them for changes in the BNF (some still using protocols that predate 2014 and even earlier).

The mechanism for licensing in the UK has a number of problems - it is primarly driven by applications from manufacturers and doesn't mean that more frequent use isn't safe. In other European countries (eg Germany) hydroxocobalamin the standard use is monthly but it doesn't rule out more frequent treatment.

The doses of hydroxocobalamin listed in the BNF for treating cyanide poisoning are astronomic compared to the doses you would receive with more frequent treatment.

You might also want to refer your GP to the area of the PAS website specifically aimed at helping medical professionals to improve the diagnosis and treatment of PA

pernicious-anaemia-society....

[Bigdog1989 in reply to Gambit62]

Wow thanks for the information, its so frustrating when they don’t listen, I will bring all this in next week to hopefully fight my corner so thank you very much

[Catman1]

Maybe worth self injecting or getting private injections if possible as you may benefit from more frequent than every 2 months.

[Bigdog1989 in reply to Catman1]

I have been thinking this, how do u know if ur getting the right stuff though with the self injections?

[Catman1 in reply to Bigdog1989]

I get mine from a uk private doctor’s clinic because I’m also uneasy about injecting something from a a non uk based internet company or online pharmacy. Lots of people on this group though purchase from abroad with great success at a fraction of the price.

For me though, I’ve found something that works which I do not need to have anxiety about so happy to pay extra for peace of mind and being able to call and speak to the doctor when I need.

I only SI monthly these days though so not possible for everyone who needs more frequent doses.

[deniseinmilden in reply to Bigdog1989]

Hydroxocobalamin ampoules like the NHS uses can be bought from online German pharmacies which are safe, efficient and helpful. If you don't speak German you can download the Google Translate app and it will convert everything to English for you. I have ordered from versandapo.de in the last week. You may have to look at the different courier options to find one that delivers to the UK (usually DHL). The ampoules should cost less than £1 each. I pay by PayPal and it automatically works out the currency exchange rate and taxes.

I get my needles and syringes from exchangesupplies.org but you'll see there are others.

If you look up Wedgewood's replies (go to her profile by double clicking on her name in one of the replies to you above and look under the heading "replies") you will see lots of good advice on self injecting from her and others of us who regularly SI.

The processes of DNA synthesis, nerve function and energy release that use B12 also need lots of other things to work properly so if you are injecting regularly you may well benefit from taking a broad spectrum multivitamin and mineral supplement, plus extra folate, potassium, magnesium and iron, ideally from your diet.

Inexpensive supermarket ones are as good as any and often better than branded ones.

If you need more B12 then you need it! Everyone is different and so the best way to work out how often you need your jabs is to do them as soon as you feel your symptoms returning. Once you have established a pattern you can SI just before you know you need to. Some people find once a month is fine, some once a week, while some of us need to inject once or twice a day!

There are lots of us here who know how debilitating this is and are happy to help. With enough B12, supporting supplements and careful management you can feel reasonably well so good luck!

[Mewsmom]

Good morning bigdog1989,

I had six loading B12 injections & I've just had my second three monthly injection, I don't feel better! at all 😞 my doctor has said the injections can take time to start working with some people, I'm lucky! that I'm retired I certainly couldn't cope with a job (& three young children) feeling the way I do, I'm going to give it until I've had my next injection if no improvement then I shall be first through the Drs door.

One of the nurses who give me my injections has said the majority of B12 patients say they are reasonably well until about three weeks before there injections are due, we are all so different.

[Bigdog1989 in reply to Mewsmom]

Yea, it really is so debilitating! Everyday I could fall asleep anywhere , the gp just says I have to battle on! Just don’t seem fair

[Tinygiant]

Where are you located? I also had a big slump after I started with injections, but it’s better now. I’m in the US, and I see a natural path so she’s prescribed me weekly injections that I do myself . At her office they have the methyl, but what was available at the pharmacy was the Cyano, which made me feel exhausted for a few days afterwards, so I am now getting the methyl from a compounding pharmacy . Where I am there is no specific regulations provided you have a prescription so I have weekly injections that I do on Wednesday . Tuesday, before my injection I am wiped . That’s where i’m and wanted to share. There’s no rules in the US or at least in Washington state that so you have to wait three weeks .

[Bigdog1989 in reply to Tinygiant]

I’m in Northern Ireland

[Bmwx]

Hi

As Wedgewood stated there is a new directive for this

I not only told my GP but shown him, he still states it goes of blood test but I have a glimmer of hope that he said he will look into this

I told him I am starting to self inject,

I am fortunate that I have private medical insurance. The consultant I have been seeing is writing to my GP regarding this new directive , so fingers crossed he will see seance

I know exactly how you feel both in your symptoms and frustration at the current miss informed reluctant to help of most GP s out there

If you need to order some online b12 go for it as it’s better than suffering

[emvj in reply to Bmwx]

Hi Bmwx, can you tell me what is your consultant's specialism? Thank you! Best wishes, Evm

[Bmwx in reply to emvj]

Hi he is a gastroenterologist , he found I had gastris and instinsin factor was low

Hence PA confirmed

I seen him on Saturday he gave me a B12 and he has written to my GP again stating I need weekly B12 intramuscular injection

See what happens know

I am going to see him this Saturday for another B12

[Hidden]

When I first started about 3 years ago I found the problems started to come back well before the 3 month period was up so I put in a request for an earlier injection. One of the GP's rang me and said she had left a script for Folic Acid top ups and these actually worked in that instance. Everything I have read here and elsewhere does point to this so it might be worth having the practice check your folate levels. Many of us on this forum also take the tiny daily top up dose pills you can get from the supermarkets, like the one beginning with 'T', they cost about a pound for a bottle of 90.

There is always the final resort of taking matters into your own hands and having a supply of ampoules and needles so that you what the doctor won't which is to inject when the symptoms return. I did my last one on the day we didn't exit and if things go as they have for the past few weeks then I will feel the need tomorrow evening. I don't bother telling the GP what I am doing as it does save arguments and if he wishes to continue happy in his ignorance then so be it.

Many years ago when on a public speaking course we had to give a sort talk on a subject we were expert in. The course leader pointed out that each of us was the World's Only True Expert on and that is ourselves. As unique individuals we are all very different, similar but different, so you know what is happening to you and you will know when you need some more of that beautiful carmine juice injected.

Best of luck, not just for you but for your 3 kids who need you.

[Bigdog1989 in reply to Hidden]

Thank u I appreciate that

[Monkeyscorner]

Get you a good endocrinologist, mine will let me take one every 2 weeks if needed

[LintonDavid]

I have injections every two months from my GP. You might want to check the NICE guidelines, which I think specify two months if you have had neurological symptoms. Also, I would personally recommend taking a multivitamin supplement to be sure that you are getting the rest of the B series as well, as I think they help the B12 to function properly. And finally be sure that your folate level is OK (maybe your doctor already checked this) and take a Folic Acid supplement as well.

Above all, don't panic. You will feel better, but it might take time.

[BirdlessBox]

All this is so disheartening. I have been researching flat-stick and every serious B12 deficiency organisation recommends frequent injections based on the primacy of neurological symptoms, most of them every second day, some every day, until there is no further improvement at which point you can go to a maintenance dose - which is still closer together than what they are giving you. My mum couldn't go more than 2 weeks between injections for the rest of her life.

[Bigdog1989]

Thanks for the reply , I agree it’s the most frustrating thing in the world, I’m so sick of feeling like this

[Bigdog1989]

Quick update guys, went to a nurse today and got a b12 shot so hopefully will start to see improvements, how long should it take to work?

[1healthy1]

Hi Bigdog, your post made me sad knowing from experience that you will never get the help and treatment you need unless you see to it yourself. You’re young and have a family to provide for so time is of the essence in terms of your recovery. As you no doubt know by now, Govnt. Guidelines for PA treatment, do say, ‘An initial 2 week loading dose,’ OR, ‘Until there is no further improvement’ - before the first 3 monthly injection (Your doctor is free to agree to more frequent shots if they are willing) In other words, if symptoms persist or return, the loading doses should be extended beyond the initial 2 weeks. Surely that’s what it means! It has been the failing of the present system. It failed me. There’s a World Wide problem with PA diagnosis and treatment. After educating myself (over years now) I’ve been told by one or two GP’s that I know more about PA than they do! Says a lot and is rather disconcerting. Without any personal experience of the illness most just follow guidelines they think they know. Maybe. It’s evident that some GP’s don’t even do that! PA is a disease that’s fallen through the cracks of medical responsibility. Changes will only come about through the re-education of the powers that be who determine the guidelines in the first place. I’ve met nice GP’s, but also arrogant ones who hate being questioned because of their pride in being a doctor, being more important to them than the needs of their patient. Truth. After my own loading doses my health was completely restored, in fact, I felt better than I had in years! When the LD’s were completed I almost immediately went down again. Very badly. My GP thought I may be allergic to the serum, so without retesting my B12 intake, decided NOT to give me the first 3 monthly shot. So I had to wait 6 months before I got one. It was a stupid and far-reaching decision on the GP’s part, that cost me my health. I developed a debilitating arrhythmia at that time (through oxygen deprivation) which was overlooked at the time. It kept me bedridden. After some years I was diagnosed with Innapropriate Sinus Tachycardia (IST) and now take a daily beta blocker. I still have a poor quality of life 13 years on, an inactive lifestyle. I say all this only to impress upon you the need to act quickly. I don’t want it to scare you but at the same time to be honest and say that the situation is serious. Perhaps the PAS can help you to find a good source of quality serum B12 so you can begin your own treatment. It really is quite simple. I wouldn’t delay. I have self injected for years now though I haven’t been able to reverse the neurological damage caused during those early years. You are in the early stages and still have a very good chance of seeing your symptoms reversed and your PA manageable. To some degree be your own doctor. Rest as much as you can. Hard to do when you have a demanding life but you’ll notice a difference in your symptoms and you’ll protect the health you have. Make temporary adjustments until you recover fully. Be encouraged! Learn all you can, and act. Best Wishes.

[Bigdog1989 in reply to 1healthy1]

Thanks u for ur post, it’s so debilitating, after my loading dose I felt like a new man, I suddenly wasn’t falling asleep anymore it was great, then 1 month later back to reality, I suffer with svt and take bisoporol for this also, my whole body was shaking very scary as i was told by the gp just to battle on through it, easier said than done! Especially when I have 3 beautiful children under the age of 6 who rely on me

[1healthy1 in reply to Bigdog1989]

“I felt like a new man.” Says it all. As does “It was great.”

Then you say 1 month later you were back to “reality.”

Don’t let your mind trick you into thinking that ill health is your reality. “I felt like a new man” is your reality focus on that. Good health is normal! And what made you a new man? Vitamin B12. Don’t accept the lie.

If the oil in the engine of your car is all but gone the mechanic will not say, it’s ok, just battle on through it. No! He’s knowledgeable and sensible enough to know that you’ll ruin the engine if you do. Well, it’s the same with the needs of your body. Your GP is out of order my friend.

I don’t know where you can find a good source of B12 serum in Ireland, Bigdog, but if other sufferers of PA have managed to find it, so can you. Be determined for the sake of your family if not for yourself. Be proactive it’s a challenge you can be confident to succeed in.

My story started in the UK (England) I’m in Canada now and have a compound pharmacy in my own neighbourhood where I buy B12 serum over the counter. It may not be as easy in Ireland but where there is a will there is a way. Blessings.

[Hidden]

I didn't realise you are in Ireland Bigdog1989, so you are in the EU and likely to stay there. With the rules as they are in the EU then the German pharmacy outlets should happily send you a supply of Hydroxocobalamin by courier. I get mine from Bodfeld Apotheke who sent me 100 ampoules for £65 including 9.5 Euros courier. They arrived 4 days later by DHL and that was just before our first scheduled crash out date. (I thought best to have a good supply in case the Customs Rules changed.) The ones I use are 'Vitamin B12 Depot' 1mg/1ml by Rotexmedica . Their website does have an English version and if you don't know German you can always copy things you don't understand into Google Translate. They take Debit cards, Credit cards and PayPal. Equipment came from Medisave in the UK and a 100 of everything cost me £17 last year. There are of course other suppliers of these goods so it may be worthwhile exploring. I would also add that I am not medically trained and just mentioning these facts as being what my solution to the problem is.

Best of luck and a better future. (It is all in your hands