2nd jab and down hearted

Well, I went had had my second jab which I am being given every 2 weeks for 4 and then 3 monthly... I got a different nurse, very young and as she started opening my file on the PC I said “you do realise that you are not injecting me enough”.. She said “well this is standard blar blar,” so I said “that if you go to the PAS website or even Google it you will see blood results, and also definitive tests are not how you deal with PA”... So she said “well he (GP) has ordered every other day injections for others, but he likes to see if your body accepts it by introducing you to it slowly”... To which I responded “so how many years based on my scheduled plan is this going to take, as I’m the wrong side of 50 to hang about” I then added “I am glad I am going to the Endo in July as I will take info along to show and ask she backs me up... I am the last person to want and waste time sitting for hours a week to be needled, I can promise you that”.. But I said “you are treating people wrongly and with my family history of PA and thyroid meds not responding and deficiencies I should be on a different plan than this. People are being forced to self inject, something I think is totally wrong for them to have to do, but I can see that sitting in a waiting room for of infectious people maybe the option I will take just the same!!” She was quite nice and said “Do bring in the stuff I am sure they will want to make you well”.. I had to smile as I have been on Thyroxine 7/8 years never seen a consultant until this year and I had to have a private test to reveal deficiencies, having given a sample for them/GP at the same time!!! I would never have had the jabs I do without having had that private test... Grrr and what’s worse I don’t really feel full of energy or that the jab has made any difference.. I am so fed up.. xx

45 Replies

  • Hi Scorpiojo. Oh dear, oh dear! Introducing B12 slowly to see if your body accepts it - what rubbish! Nonsense. Utter twaddle. But you know that!

    I'm really sorry that you feel so bad but that's not surprising after one injection! And I had a quick trawl on your previous posts to see if I could find your B12 levels. They're very very low! As are your vitamin D, folate and serum ferritin levels. You'll need to supplement to raise these levels as B12 needs these work properly at a cell level. It's also important to have good potassium, calcium and magnesium levels. And you'll need vitamin C to help absorb the iron, if like many of us, you have a problem with low or no stomach acid.

    Don't have time to look at all your posts but, do you have neurological symptoms? If you do you really need IMMEDIATE treatment with every other day injections until no further improvement. This could be for several or many months. Your GP obviously does not know this.

    One jab every two weeks is just ridiculous, especially if he does prescribe the intensive treatment regime for others. Ask him why he is discriminating against you! The basis loading dose regime, as per the BNF, is 6 doses, one every other day.

    When the nurse says 'do bring in the stuff', well do. Bury them in it. Quickly. If I was you I'd print out some relevant quidelines (BNF, NEQUAS, NICE, etc), highlight the relevant bits, make an urgent appointment and hot foot it up to the surgery.

    Don't know if you have quidelines but if you click on my username and go to the first post I did, there's lots of great information that others have sent to me.

    Take heart, once you get your co-factors and B12 levels up to decent levels, you'll begin to feel a lot better. It does take a while to undo the 'deficient' state, but it does happen. You won't always feel as bad as you do now.

    Sorry, but I have to dodge off now (exhausted).

    Take care and get back to that ridiculous GP pronto.

    P.s. I've done another reply to the post below yours. Have a quick glance as it says more about B12 treatment and might give you some extra information.

  • Thanks I appreciate that.. I am going to print off as today my endo has put my appt on 19th July off to the 2nd August.. So I'm not going to wait for them to wade in here... Do you have any idea how long those levels will take to improve? Btw the gp says nothing is too bad re my private results "just a bit " he said!

  • Sooty Sorpiojo, no idea how long levels will take to improve. I think it depends on many factors (for instance, how good your body is at utilising B12 at a call level) and varies from individual to individual. It's fiendishly difficult, isn't it!

    I think not waiting is a good idea.

    Also - Deniseinmilden has some interesting ideas that I'm going to go away to think and read about.

    GP's always seem to think that results bumping along the bottom of the range (or even below) are okay. Strange isnt't. For people with B12 deficiency, they're not.

    Good luck with it all. Let us know how it goes.

  • Apologies for the post above. Auto correct seems to have changed 'Sorry' to 'Sooty'. Took me a while to realise...trying to work out why I had called you sooty! Foggyme!!!

  • I do the same on my mobile (spelling and auto correct) so I knew that is what it was.. :)) x

  • I'm sorry you aren't enough. My naturopath gives me a lot of syringes and I do them myself whenever I want. I would hate to go back in for things. I used to get weekly allergy shots for 6 years. Shit gets really annoying. So when he told me I'll be doing them myself for life I was relieved. I get a 30ml thing of b12 from the pharmacy and I can do them daily if I want to but I have issues hurting myself with the needle a lot so I do every 4 days. I wish you luck :(

    Standard drs are so uneducated.

    I remember now seeing a doctor for a second opinion they said " it's only once a month is the standard" I said he didn't know anything lol

  • So, can I ask what you mean about hurting yourself while injecting? Also, does the 30ml bottle last opened as you only give yourself 1ml injectiobns right? Thanks for the reply.. Jo x

  • Yes it lasts for quite a while. I think it has the expiration on it. But if you're dping it twice a week it will last what 60 days? And every day will last monthly. It all depends on your insurance too. Sometimes they'll only give me six 1 ml bottles which sucks because it's really hard to draw the dose out of them!

    You just have to be careful. My dr said it's not dangerous unless you're injecting it into your eyeball or heart or lung lol! Just sometimes you hurt yourself. I wasn't switching legs (I do my thigh) and I really struck something and I almost passed out and was bleeding a bit. But today I did the other leg still traumatized from last time and it went perfect haha I ice before I do it too just FYI. Good luck to you!

  • That's what worries me... I'll hurt myself.. I have enough fat to stab, so I'm not sure why I worry lol.. I saw a video that scared me when they said you get air bubbles if you use the small ampoules and hit the needle.. I just want a small needle and the Hydro b12 although you only seem to be able to buy the C word one... Brain can't recall full spelling for the b12... Take care of you x😊

  • I get the c word one too! Hahaha long name. Well it has to go in to the muscle. I get a 25g needle and it's an inch long and you just basically dart it in. I feel the thigh muscle the easiest. I was scared to put it anywhere else haha

    And eh air is fine. Just flick the syringe and the air will go to the top.

  • Hi Scorpiojo. Thought I'd let you know, in case you want to buy...I get my Hydroxocobalamin 1 x 1mg ampoules from mycare.de (the website has English translation pages), I pay by PayPal and it comes quickly.

    With regards to injections hurting...if you apply slow steady pressure to push the needle in, it shouldn't hurt. Also, inject the B12 with slow steady pressure...again won't hurt.

    Good luck.

  • I was looking at ebay and a small box in Staffs but it's the C one.. I'm going to get say 10 & try it's not going to break the bank if I run out of nerve lol... Thanks for info I will look at site you have suggested.. 😊 x

  • Hi Scorpiojo. Don't want to throw water on your parade, but I would taken very great care buying drugs from eBay. Much better to buy them from a reputable / recommended source (direct from manufacturer or authorised supplier). There are a lot of 'duds' out there 😖😖.

  • Have dm'd you I will use where you do as I see they do 10.. I want to start with smallest amount of ampoules to see if I have the nerve lol.. I'd like to know where you can get needles and syringes put together so I can just draw it up, and them inject.. I fear if I faff about I won't go through with it lol... Any tips re smallest or best needles that are ready to go would be helpful anyone... Thanks x

  • Hi Scorpiojo. Just replied to your PM. Let me know if you need any more help. Good luck x

  • 😊 x

  • We complain about the "one size fits all" NICE guidelines which we know aren't good and maybe your Dr has something. I suggest you ask HIM why you are being treated on a non standard regime. Is it because you had private tests done and he's deliberately messing you about or has he some idea of what he's doing and is going away from the guidelines to see if a different approach is better???

    A lot of people get quite big reactions to the loading doses - some of which are pretty unpleasant - and then crash when their body finds itself short again.

    I think in the long term a more gentle approach might be better, especially in someone with auto immune issues. I'm inclined to think the sudden flooding of the body after many years of starving it might cause it to see the B12 as a pathogen and trigger an immune response against it.

    With the knowledge I have gained over this year, if I could start my treatment again I would definitely rather try a more gentle regime. I know it will take longer to get the improvement you are looking for initially but if it means your body accepts the B12 happily it might mean that you won't have to end up on daily injections because of your body deciding to fight the B12.

    Technically each dose is very high - many thousands of times what you need and therefore should work, albeit gradually.

    I might be entirely wrong but...

    It could also be worth going back and asking if you could have them maybe weekly instead, like they do in Holland and Australia (I think) ... And make sure they intend to keep going with the introductory rate until your symptoms are resolved and YOU don't feel you need them that often any more.

    Either way, good for you for questioning it!

    I hope you find something that works well!

    PS Don't forget your cofactors needed to metabolise the B12 - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium (at least!).

  • Really interesting points Deniseinmilden. Something for me to go away and think about.

  • Thinking about it, if I could have my treatment option again I'd have had it 20 or 30 years ago!! Rotten system!!

  • Me also! All that time wasted being ill! Rotten indeed!! Ideally, I'd like to be treated by a medic who has PA / B12 deficiency.

  • Definitely...

    So long as they are getting enough B12 plus cofactors.... otherwise you might get "and just remind me who you are again" or "take um, um, hydroxosomething"!! 😁

  • Ho Ho Ho! I like that. Would probably be an improvement on what I get now 😱.

    Perhaps we should give B12 to all medics...just in case.... 💉💉💉😂😂😂

  • If I could I would give them a dose of something that gave them all the B12d symptoms for a while, just so they "had a chance to understand"! I pride myself on not being vindictive so I wouldn't tell them it was all in their head and placate them with mind messing "antidepressants"! 😉

  • Or, along with the symptoms, we could provide brown paper bags for them to breathe into! Great cure for neuropathy!😂😇

  • Great cure for severe hypothyroidism. I sat and heard a real doctor say that breathing into a paper bag would help with some of the symptoms.

    That was my first introduction to what a GP does on a house call to someone who cannot move.

  • That's appalling!

  • Hindsight suggests something towards an Addisonian crisis was caused upon starting levothyroxine - resulting in a 999 call and visit to A&E. The home visit (which required very strong demanding by me) was reluctantly provided with the above result.

  • I second that!!!

  • I cant add my results in this reply as it's a pic, but I did have vit D and folate and ferritin Def so I am sort of hpoping I am not feeling as instantly great as other because it all needs to be in Sync... How would you know if your system was fighting it ? What test for Auto immune? I wonder as I had some Cyclosporin which took away my immune system, but have stopped now, if that is why it may have come back with a bang to stop anything coming in? I dont even really want to go to the GPs weekly hanging about in there winds me up and also you are as such well when you go in there, but coming out with a cold maybe from some one who cant be bothered to sneeze into a hankie... That I know sounds grumpy lol.. It's what is more likely to tip me over the edge to injecting myself most.. Which again is odd :)) Thanks for your reply

  • I know exactly what you mean - I've had an impossibly compromised immune system for at least 30 years - until I started daily SI last July and I've hardly picked up anything since!!! I now don't see the public as pestilencial plague spreaders!

    (When I was 10 I had German Measles and when I was 13 I had a Rubella vaccination. When my lousy health was being investigated in my late teens they discovered I had zero antibodies to German Measles or anything else so I had to have all my child vaccinations again).

    If you would like more information on supplements and sources (including jabs) you could look up my profile and see my post "My Experiences".

  • Thanks I will... X

  • Whilst some of us notice the effect of a shot almost immediately - others find it takes a while ... and sometimes its a while before loading shots really have any effect.

    As you have multiple conditions it's always possible that there are other things going on and causing the symptoms - particularly the thyroid - but it is very frustrating that GPs don't really treat patients and are too fixated on test results and what are basically averaged result ranges. They forget how much variety there is and unfortunately patients do suffer as a result.

    It was 9 months before I actually noticed any effect from shots - that was on the normal regime.

    Keep fighting.

  • Was that three monthly? Thanks for the reply

  • Yes, I was on 3 monthly at the time

  • Please continue to pester your GP , I'm hoping for you sake they will listen. There will come a time when you do start to feel better.

    After finally being diagnosed with PA ( It took 7 months of telling doctors that I wasn't depressed and I that I didn't want antidepressants and that they should do another blood test!!) I was on a regime of 3 injection's per week for 4 weeks until my levels reached the appropriate level , also had to have 2x 10ml oral dose of vit D. Then my Doctor wanted me to have 3 monthly injections. After waiting out the 2nd 3 monthly period to get my next injection I felt that I actually needed it sooner, as at about the 6 week mark my some of my symptom's started returning, the Dr wanted to make me wait for the 3 month mark, but could not really give me a good reason why, except that it was the normal regime, so I asked for a referral to see a haematologist who told me that having high levels of B12 in your system does no harm at all ( unlike too much iron ). After that I have monthly injections. 1 year after going through all of that my pharmacist told me I didn't need a script for B12 any more so I can now buy it over the counter as needed.

    I'm lucky to be in Australia and I also have a great friend who is a paramedic who gives me my injections as I can't relax enough to give myself IM injections.

    I think it took at total of 2 years for my original symptoms to be reversed - numb feet and hands , tinnitus, extreme headaches , lethargy and speech problems, not recognising people , mixing up names of things and feeling like I was crying all the time.

    If I leave my injections more than 4 weeks , my fingers and feet start to feel sore , my ears ring and its hard to concentrate on work. I have now been managing PA for 3 years.

    So my main message to you is - Keep nagging your Doctor !! Don't lose heart the injections will begin to reverse your symptoms eventually. xx

  • Hi All, I live in the States and was diagnosed with PA 2 years ago. I've been on this site since early in my diagnosis and I have to say I'm horrified at some of the situations I have seen posted! My hemotologist has been nothing but eager to help. I don't understand why you're all so badly mistreated in the UK. I haven't had to look up treatment guidelines in the US, because I haven't needed to. When looking into the research have you come across any information regarding differences in treatment in the UK vs. the US? I have to wonder if it would make a difference in making your treatment easier and more appropriate to allieviate the symptoms.

  • It would get very political if we answered that I fear.. But it upsets me that I and many others will have to take this into our own hands... It's so wrong.. Best to over the pond :))

  • I'm really sorry to hear that. We have our share of messes with our system of health insurance, but I've yet to come across a medical practitioner who is solely guided by preset guidelines. A doctor's job is to reassure and heal. I hope things get better for you!!

  • you're telling me lol... When I was losing hair 1st his answer was .....Buy a wig!! I wouldn't mind if I went there every week for help either... A and hole come to mind.. My neighbour funnily enough likes the GP but when I asked how she gets stuff out of him... She told me...Oh he sits and tells me how much things costs and shows me spread sheets... I had to laugh, as I said"so in other words he's telling you nicely you are costing a bomb sod off".... I don't think she gets his sarcasm!! Where as I guess I get a less insulting my intelligence NO... 😊

  • No way it's just UK. I've taken my lab results from my naturopath to two different doctors as my chiropractor told me to just in case to get more opinions. Both of them had absolutely no idea what the high positive antipariatel cell antibody was and dismissed it like it was absolutely NOTHING! How terrifying. They even ignored my claims where I told them I often feel like I'm about to die like my body is giving up on me. Both wanted me on antidepressants! LOL! Needless to say my naturopath that diagnosed and is treating me is the ONLY person I will trust. And I trust when he no longer is working I will be referred to another one that will continue to believe in me and help. I've probably seen about 40 doctors over the 10 years I've been so ill. None knew what to do or were interested. I do twice weekly self injections of b12 with a high iron supplement and domt feel improvement yet. But I've been sick years and years so it might take a while..maybe

  • where is your Naturopath? When you say 40 docs do you mean GPs? It's a terrible story.. Crossing fingers for you.. I wrote down symptoms post jab... 1st one I slept well but had some sort of bile sick, but felt a little more energetic the first couple of days after.. Second jab, no sickness, cant sleep at night could sleep all day, no energy.. I am wondering if my body is fighting the stuff?

  • He's in seattle. He won top doctor a few times in the Seattle times magazine! He's a gift. I've seen them all. Several specialists and family drs. All judt wanted to either give me antidepressants or pain meds. I'm not sure... I hope the shots work for us both :( I've been very depressed lately BECAUSE of my disease. Been thinking about death a lot and what if treatment doesn't work. It really sucks

  • You mustn't give in... At least you have one person who gets you... You know the shots won't harm you.. I think the plan should be shots for a period of time that most if not all others have seen a result, then if no improvement the next stage... I think if you look too far ahead it can cause upset... Big hugs

  • Yeah I'm not going on any of that crap. I hate even being on birth control but especially with this disease I feel like it's best to still stay on it for a while so I don't bleed as much during that time of the month..

    I know it isn't a crazy crazy serious thing but I worry its cancer a lot and being with my boyfriend I feel so bad for him he has to go through this with me but he's the most supportive and helpful guy I've ever known. Just sucks we can't and won't ever have a normal relationship.

  • Write a list of positive's and have loads of copies everywhere.. Anytime you have a negative wandering thought... LOOK at that list... 😊

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