Help needed !

[purpleabc]

Hello, this is my first post though I am a member and read everything everyday and am so very grateful for all your knowledge and kindness.

I was diagnosed with PA in 2015 with a positive IF antibodies test . Lucky eh, 1st time. I had the loading doses then went on to every 2 months ( couldn't manage on 3 monthly) I was ok till May 2022 when I decided to exercise slightly and it backfired badly, I became really ill, Pins and needles in feet and lower legs, difficulty walking, terrible fatigue, dramatic weight loss, palpitations,problems talking, my mouth just didn't seem to go with the words, memory loss and such difficulty finding simple words, I spent most of the time in bed. I was lucky and got a locum gp who put me on loading doses again which ended up as twice a week. By December the pins and needles had gone and I was feeling really good. My Gp made the injections weekly and as time went on I got worse. I eventually had to go and see a Gp and by this time my voice was very weak and I was taking gasping breaths and feeling totally shattered. The Gp then told me that this was probably due to my age and a normal feeling for someone 70, the B12 was just giving me a boost, I was stunned and walked out. Since then I have seen a different gp in the practice who has told me that the surgery have had a meeting and they don't think my problem is to do with B12. She sent me to the CFS clinic who said it wasn't that. She checked my legs with a tuning fork and though I had no feeling in my right hip said all was well and the neurologist wouldn't want to see me because she had done the test. When I asked her what she was going to do to help me with the pins and needles in my legs she said she could send me back to the CFS clinic they could help me with a coping strategy ! I said I wasn't happy and I was worried but she kept repeating that my blood was flooded with B12, over 2,000 . I answered that the test result was of no use , she was supposed to go by symptoms but she was adamant she had flooded my body with B12 nothing else to do. I wasn't given another appointment for a B12 injection, they need to be further apart she said. I don't know how I got home.

So today I went to a different surgery , and their gp called me this afternoon which was amazing. I explained I had PA and my symptoms and was due Injections, could he help me? He found my latest blood test, he didn't have my notes of course and said the dreaded words.......... That my B12 was very high, so not to worry about the nerves in my legs because my blood was flooded with it. My heart fell. I tried to tell him that they shouldn't retest it anyway after I was on injections and because I have PA I am not able to absorb it. They needed to follow symptoms. He asked where I read that so I told him that NICE,BMF and I was a member of PAS. I now have to wait for my notes to get to him then do a face to face appointment, possibly neurologist appt.

Please can anyone tell me what to say when a gp says to me that my blood is flooded with B12 , I am desperate to get injections reinstated.

I am doing the PA survey right now but once it is over I am going to buy B12 from Germany as so many of you have done. I want to be in charge of my own body. Is doing the injection SC as good as IM, it seems so much less scary.

Thank you so much for all your help, reading your messages keeps me going, I have learned so much from you all. Sorry for the long moan !

[wedgewood]

Just because your blood is flooded with B12 , doesn’t mean that it’s getting where it is needed -INTO YOUR CELLS !

I look on it like this -The b12 doesn’t get into your cells because it is acting like a jug which is being filled with water . When full , it overflows . You need your B12 jug to overflow so that that the B12 overflows into your cells . I know that this explanation doesn’t sound scientific , but I don’t know how to describe it in scientific terms . What worked for your some years ago , doesn’t now , and you need B12 injections at a regularity that keeps symptoms at bay .

Yes, you may well be forced to get B12 ampoules from German online pharmacies. And yes , sub-cutaneous injections work very well . I’ve just changed from Intra-muscular to sub-cut, after 9 years ! They are much less intimidating! I use a very short needle that penetrates the fat layer on my thighs -you can also use tummy fat . The B12 is absorbed more slowly with sub-cut injections , that’s all. It does the job just as well . I.M. might be better for someone who is very low on B12 for their first doses, because I.M . is absorbed faster Best wishes 👍

.

[Nackapan in reply to wedgewood]

Glad sc suit you too

[wedgewood in reply to Nackapan]

It really is much simpler than I.M. and just as effective. Wish that I’d tried it sooner!

[Nackapan in reply to wedgewood]

Yes I was dubious initially and felt like a guinea pig.

Very relieved I saw suitabke for sc on the German b12 box.

But obvious to me from the start effective .

Pills and sprays didn't work at all .

Still have a 6 weekly IM b12 injection as fearful of changng anything .

Surely must be a way forward for prescriptions to self inject at home .

Still unlicensed for sc.

However many many medications are prescribed 'off licence ' 'off label '

The neurologist I saw and asked about it coukd think of no reason why it shouldn't work.

So he wrote to Gp saying I'd suggested it and he coukd se no reason not to try it.

The whole practice refused initially then the one Gp I stuck with suddenly had a change of mind.

Rang me out of the blue .

Stated alot of opposition from her peers but prepared to prescribe b12 for sc at home.

I was to take full responsibility for any risks involved with needle injuries.

Nurses could not/ would not teach method.

By this stage I'd taken the bullet and ordered my own supplies as thought I'd reached a brick wall.

Every nurse I see asks about sc .

Does it have the same effects ect .??

The new one has b12 deficiency herself and needs more than 3 monthly so very interested.

I agree IM probably needed initially as gets into the system quicker.

I still hope an I.M one will last longer but in over 3 years now it hasn't.

Only difference I've found sometimes is it does set of tinnitus and I'm a bit ' wired' sure sign of speed into my body.

Other times nothing just in the background.

Always fascinates me how some injections 💉 have a different effect.

Thank goodness they are there in what ever way administered.

[wedgewood in reply to Nackapan]

Thanks Nackapan . To me , sub-cut seems a more logical way of injecting B12 , once loading doses have happened . The b12 is released more slowly , as fat contains less blood supply so gets into the blood more slowly than I.M . So plus the fact that the method is much less intimidating, it seems a better method for B12 . One does have to be careful not to inject in the same place too often , as I believe that can cause skin problems . So one needs to keep track of that . But the area for self-injecting is much larger than I.M. Front of thighs and the tummy fat ( avoiding the area around tummy button )

I think that a 2ml injection might be a bit much for sub-cut.

[Nackapan in reply to wedgewood]

Oh yes . Too much fluid. I'm used to seeing my husband In ject loads of areas with sc .

Insulin 4 × a day for over 2 years.

Smaller amount of fluid though .

Once an area became fiscous .

/ knotted so held the insulin there .

Only released when in a warm shower.

A hypo occurred .

That area got over used as easier when at work / on the train / out .

Happens

[purpleabc in reply to wedgewood]

Thank you, wish the gp's understood it so well ! Thank you also for giving me more confidence about self injecting, sc sounds easier, I wasn't sure it worked with PA. So good to be able to ask someone who knows , thank you.

[wedgewood in reply to purpleabc]

I realised that sub-cutaneous would work because it is a recommended method of injecting B12 that is printed on the packets of B12 ampoules that we get from the German online pharmacies . And we know that the Germans are not dummies when it comes to matters medical !

But in the U.K. , B12 is always administered by the I.M . method for some reason . But I can assure you that sub-cut works

[Rexz in reply to wedgewood]

I wholeheartedly agree wedgewood. I have always done sc and it's worked perfectly fine. Basically use small insulin needle. Is easy and painless.The only drawback is I don't get the pleasure of being mean to myself with IM! 😂

Rexz

[Nackapan in reply to purpleabc]

I've been doing it for over 3 yrsrs .It works !

[Nackapan]

I'm sorry to hear you ard getting such poor care .I have done sc b12 for 3 years now .

I have IM 6 weekly at the surgery .

Have so far after many fights retained a NHS prescription of 2 weekly b12.

I do buy the needles syringes 💉

I would just keep it simple on your consult.

Once on injections blood levels meaningless

You get a good clinical response to your b12 regime.

B12 injections are needed for life. .

PAS has info for medics .

[purpleabc in reply to Nackapan]

Thank you Nackapan . I think I try to explain too much at the consult, simple is best, I'll try. I did get a leaflet to give the previous gp from PAS, explaining so much, even that they could join free and get all the information available. I also copied other articles and highlighted bits but from what she said she hadn't looked.

[Nackapan in reply to purpleabc]

Yes I did that .Gave them too much information of my symptoms.

I only pointed out NICE guidelines of every other day .

Well I dud have so many symptoms .

Also anxious to make it poignant.

Just overwhelmed them though.

Then put in a box of anxious patient .

Well so difficult.

I was anxious to get treated and listened to in 6 minutes .

Also another b12 deficiency symptom!!

Hope it goes well.

[purpleabc in reply to Nackapan]

I was thinking of leaving him a copy of the PAS information plus a copy of NICE regulations, possibly some of the new draft before I get the face to face appointment, with luck he may look. I will definitely be named anxious patient among other things think ! I will try to be quiet at the appt . Brain fog and forgetting words you need don't help. Thanks for you wise words

[Technoid in reply to purpleabc]

I recorded all my symptoms very diligently (I have hundreds of pages of hour by hour notes which I compiled for months during the initial treatment). But I found that the more symptoms I described to the GP, the less seriously they took me and the more they leaned into somatic diagnoses and "it's all in your head".

B12 affects so many things that having a boatload of things going on at the same time is to be expected but its not something most GPs expect or (frankly) are equipped to deal with. They were most useful when it came to very specific near-trivial conditions with simple remedial applications, e.g. localised minor infections treated topically etc.

For something as serious, deep and far-reaching as B12 deficiency my experience was that they are simply out of their depth and not able to handle it or diagnose correctly. I only received useful treatment when I referred myself to specialist care. But even they were not fully able to understand or explain the increased symptoms during treatment, for which this forum was the most valuable resource.

[jade_s in reply to Technoid]

100% agree with this. The simpler the better re symptoms. Focus on 1 thing eg neuropathy.

I've overwhelmed a few docs in my time too, especially specialists, with past blood tests, trends, notes, journal papers, etc. Most were confused & ignored everything, 1 got angry, and 1 was honest enough to say it was out of his depth.

[purpleabc in reply to Technoid]

Thank you so much, I have made a diary as so many here have advised, it's become almost like War and peace ! When I told the gp that on starting the latest twice a week B12 injections that the pins and needles in my legs was really severe, actually worse, but I knew that was the B12 working, getting worse before better , she looked at me like I should be locked up. Thank god for the forum, maybe we should get tee shirts printed !

[jade_s in reply to purpleabc]

A "myths about B12" tshirt would be a fun one & I for sure would wear it everywhere 😂

[Sleepybunny in reply to jade_s]

I'm going to start a thread about b12 T shirt slogans.

[Espeegee]

I want to cry for you, that is shocking 😢 I'm ashamed that the NHS is paying these incompetents £120K a year to mistreat patients. Before your next appointment print out any NICE guidelines and any from anywhere else that is official like the BMJ and hand deliver them, marked for the attention of whomever you are seeing so they have time to read them. When he says your blood is flooded with it, say does that mean once you've filled your petrol tank does that mean you wouldn't need to fill it up again even though you'd use the fuel every time you drove? I don't know where you live but if you're near me (Preston area) I'd be happy to come with you for moral support.

[purpleabc in reply to Espeegee]

Thank you ! The support and thought means so much. I feel stronger already !

[jade_s]

Hi purpleabc, welcome I'm so sorry to hear you're dealing with doctors who refuse to learn and educate themselves. Here are a few more things you could send them , if you haven't already... for what it's worth! They sound woefully misinformed but also uninterested.

"Help Sheet – re-testing of B12 during treatment" (members-only page): pernicious-anaemia-society....

Diagnosis and treatment pitfalls b12-institute.nl/en/diagnos...

Misconceptions about a B12 deficiency stichtingb12tekort.nl/engli...

"The Many Faces of Cobalamin (Vitamin B12) Deficiency" See especially Table 1 on "Misconceptions and Misbeliefs" associated with B12D. Full text available ncbi.nlm.nih.gov/pmc/articl...

I've done for SC for almost 7 years, no problems. I've done trials of IM this year and felt no difference.

[purpleabc in reply to jade_s]

Amazing help, thank you so much. I am in tears with all the help I have received since I posted last night in a state. I will order all I need to self inject as soon as the PA survey is completed.

[jade_s in reply to purpleabc]

You're very welcome! It's awful how we're left to fend for ourselves, isn't it. I'm so grateful for this forum as well, especially wedgewood and a few others who helped me in the very early days ❤️

Good luck with the survey

Do you have the supplies file already?

[purpleabc in reply to jade_s]

I'm not sure what the supplies file is..but from reading everyday I've seen the great help Wedgewood is and I think I know how to get everything. I have had a look and with the help of my son I will manage I think. I am not great on the computer. I will order now and be ready for when the survey is completed.

[jade_s in reply to purpleabc]

I sent you a Chat message. Glad to hear you have support

[MrsTuft]

Self treat. Problem solved!

[Miss-guineapig]

Hi Purpleabc, you have loads of brilliant answers. I just want to add a bit reassurance. I have recently retired after being a nurse and health visitor for 40 yrs. Subcutaneous is perfectly fine for B12, may take a wee bitty longer to disperse but no issues what’s so ever. I may be speaking out of turn, but I bet half the IM jabs go into so much fat nowadays, regardless of excellent technique , so I wonder how how many IM jabs actually go deep in to muscle, but no one mentions that …lol! Have a great weekend folks x

[purpleabc in reply to Miss-guineapig]

Thank you !

[wedgewood]

I think it an advantage that b12 is absorbed slower when injected sub-cut . Except for the first loading doses when the symptoms are very distressing .

Maintenance doses are excellently served by sub-cut injected as often as needed to keep symptoms at bay . The regularity will vary from patient to patient .

[WIZARD6787]

Helpful post for me. I had not thought of the concept of not confusing medical personnel.

I even have experience to draw on. I present to environmental judicial boards and have to pretend they know what they are doing to get them to do what I want. I take a shower afterwards.

I find that this document is in keeping with what the medical personnel are used to and is based on the British National Formulary. Just another option.

theb12society.com/treatment

You got this!

[purpleabc in reply to WIZARD6787]

I haven't seen this one before ! It is perfect. Thank you so much. It covers exactly what I want to show. Oh my..I am going to have to get a bigger envelope . If all the gp's just read it wouldn't our problems be over !

[WIZARD6787 in reply to purpleabc]

Unfortunately they would have to read and understand it. Until proven otherwise I'm going with physicians think fatigue is as tired as they have ever been.

[jade_s in reply to WIZARD6787]

Yes, one GP told me it's normal to "feel tired after work". I couldn't quite get across the bone-crushing exhaustion I felt *all the time*. Sometimes they only hear what they want to hear, I think.