Hello lovelies 😊

Just an update, you probably don't remember me but I posted when I'd just been diagnosed with pa. Had my last loading dose on 11th April and proceeded to feel awful same day. Saw my GP 19th who informed me that she couldn't give me anymore injections because "there's evidence in the US of people suffering with fibrosis at injection point and that doesn't help anyone", told me to take a good quality b12 tablet and has given me blood forms for exactly the same blood tests I had that diagnosed me in the first place!! I first felt anger, then helplessness and now I've got a grip and taking control tentatively. I go to restorative yoga and have just ordered Methylcobamine sublingual, folate and b6 (50mg). I'm disappointed with my GP as she's always been on the ball with my Thyroxine so I was speechless with regards to her response on this issue, especially when I told her that I can't read a book (I'm a law graduate so not averse to doing this). It's very upsetting and I'm just wondering if I've ordered the right combination. Thankyou in advance because I know you'll care.

32 Replies

  • Does this mean that she and all other GPs in the practice are removing B12 injections for every patient that needs them or is she just doing then on a whim.   

    Ask her to provide the evidence so you can make an informed decision about whether you want to take the risk of suffering either fibrosis or the possibility of permanent neurological damage, spinal cord degeneration or possible death from a lack of B12.

  • If you have been diagnosed with PA then it's injections for life. The Pernicious Amenia/B12 Support Group on Facebook has a lot of useful information including the medical information re injections for life and draft letters to doctors you can copy.  Don't take any supplements until you have your blood test as they will affect the reading.  Good luck. 

  • I'm sorry I was misleading in the way I put it last night, should have said that she refused me further loading doses. I can have them every 3months but I went back to see her because my symptoms were coming back quickly, now at nearly 3 weeks on I'm practically back where I started with the breathlessness, not being able to do as much, feeling like my heart is working to hard. However, it's my memory and cognitive symptoms that frighten me the most. I was so upset during my appointment that I cried because I felt like myself more on the jabs but that stopped quickly after. Yes I'm going for the blood tests Tues and will start the supplements Wed, although not sure why I'm going through with the tests as she added that the lab will probably refuse to do them. This whole thing feels like a horrible joke.

  • Very much doubt that anyone has had problems with fibrosis at the injection point because of B12.  Did come across this article

    which would imply any fibrosis was down to the way the injection was being given not the B12

    1% of B12 is absorbed outside the ileum and that is where most B12 absorption problems are centred, so it is possible in theory to get enough B12 by flooding the gut with B12 taken orally - 1000-10000mcg a day.

    The idea of sublinguals though is that the B12 is actually absorbed through membranes in the moutn.  

    Other possibilities that aren't relying on the gut include nasal sprays, sublingual sprays and skin patches.  Some people find them very effective - nasal sprays and sublingual adenosyl certainly works well for me.

    Folate is a key factor in absorbing and processing B12 so good to keep levels high. Best source of folate is food but supplementing is an option.  Some people do have problems processing folic acid and find that methylated forms work better for them - genetic mutations (MTHFR) - however one of the MTHFR mutation combinations tends means that those affected can react very badly to methylated forms of folate- just makes them feel really awful.

    B6 can cause problems if taken over long periods at high doses - but the dose you list is 1/2 the dose that has been associated with neurological problems so should be okay. Againl, there are some key processes that use B12, B9 and B6.

    The body needs 2 forms of B12 at the cell level - methyl and adenosyl.  The body converts hydroxo and cyano to both forms, though some people (back to MTHFR) have problems doing this.  Most people can convert methyl to adenosyl but some people can't so if you find that some symptoms are going but not others then it may be worth trying some adenosyl as well.

    I personally use a mixture of hydroxo, methyl and adenosyl and find that whilst adenosyl helps with some neuro issues it really doesn't help with neuro-psychiatric issues.

  • Thankyou, yes I thought it was a very odd reason for not continuing to treat me at the time. I felt I should have been given a choice not told that's what was going to happen.

    My folate is in a methylated form, they are all Solgar products so I'll send how I go them first. Do I take a 1000mcg sublingual everyday or whenever I need it? What is adenosyl? If I'm feeling a bit despairing would it make me feel worse?

  • Take the sublingual as often as you feel you need it - you can't overdose.  If you do find that you are feeling dizzy or getting headaches then that's an indicator that you might have an MTHFR problem so this might help

    If you have had acne in the past then that is another thing to watch out for.  Even if you haven't had acne in the past you may get spots for a while and sometimes people feel worse before they feel better.  Would be useful to keep a diary.

    If sublinguals don't work it may be worth trying nasal or nasal patches.

    Adenosyl(cobalamin) is just another form of b12 - there are two forms that are needed for different processes.

    However, suggest that you try to see another doctor to talk about things and go armed with the article in case you get the fibrosis story again .... or write to your doctor asking for more details of the link between fibrosis and B12 and share the article above

  • I wonder what your dr tells her type 1 diabetic patients. Anyone who injects on a regular basis is at risk of fibrosis. Rotation of inj site and no alcohol on skin helps to lessen chance of fibrosis. Therefore I disagree with your doctors theory.

  • Right- I've had injections in my hips and arms. It seems like a smaller price to pay?

  • If tissue becomes fibrossed it doesn't absorb as well 🤒

  • I see

  • I started with loading injections just before Christmas, symptoms went but my first lot did not last long. My doc was good and reduced them to 8 weekly and I supplemented with patches when symptoms returned. I have recently had my third maintenance dose and am now feeling a lot does take time. You say you are on thyroxine, so am I and I found I needed that to be increased when everyone including my doctor said I could probably drop it slightly when now on b12. Life will get better but unfortunately it has taken years to get bad and won't improve overnight.

  • Thankyou Auntyp62 that's really reassuring and much better advice than I got from my GP. I've been suffering cognitively for years but went through a premature menopause at the same time as my thyroid packed up so for last two years I've been stabilising my thyroid and taking hrt thinking it would help the symptoms but it didn't. Then when I felt it lifting slightly during the loading doses it was such a relief. I start supplements on Wednesday so hopefully they will help.

  • Been there and done the same thing, b12 problems seem to be the last thing the doctor looks for especially when you already have a proven problem. I gave up teaching because of the brain 4 months into treatment and upping thyroxine so it's at the highest level but still within range I feel I could work again. Unfortunately we all want to take a pill and feel better tomorrow and with some pills that can happen but not with will get there......the emotions will definitely be running high at the moment .....let you body adjust and heal.......

  • Thankyou Auntyp62. This is going to sound wrong but I'm so glad to hear I'm not the only one. I haven't worked for years because I can't. Just want to be who I was before but you're making me realise that there is a light at the end of this awful tunnel 😊.

  • There is light, you won't be the same as you remember yourself......but you will be massively better than you are now. I still feel I have a long way to go but when my husband said the other day that I walk different ....more like I used to walk....I did not understand till he said you are not bent and are walking with your head held high, I knew how far I had come in the last few months.....and it will be the same for you....good in a couple of months how you are, I would be very interested.

  • Thankyou Auntyp62 you are lovely and I will. I hope your progress continues and good luck 😊

  • Exactly! I was speechless at her response but I got so upset and felt so silly for crying that I just left. All I got was a patronising look while she told me that pa can affect you emotionally. I felt that she thought I was imagining it all, I don't need anymore jabs and I'm just being a drama queen (which I'm definitely not!)

  • Depression and anxiety are amongst the symptoms of a B12 deficiency - ironically early menopause can also be a symptom of B12 deficiency so it may have been going on for quite a considerable time.  A full blown deficiency can take years - or even decades to develop.

    I had 40 + years of depression and anxiety which went when I started to take the levels of B12 that I actually need.

    Can't really understand how doctor can be patronisingly dismissive of emotional problems whilst effectively refusing to treat the underlying deficiency.

  • Thankyou Gambit62 for your advice and sharing that article, I've been looking for diet and exercise information in relation to pa but obviously in the wrong place. I'll start my supplements Wed and take things from there.

    I had no idea that early menopause was symptom of b12 but I think you're right and this deficiency has been going on for a long time. I've suffered depression/anxiety although diagnosis was always 'mild'.

    When I had my loading doses my whole body and mind began functioning again for the first time in 8yrs! No amount of anti-depressants, hrt or thyroxine has had such a marked effect.

  • I'm on two monthly injections as well and so far have had 3 maintenance after 6 loading so far.   I found that they have helped a little with the cognitive function but they wear off within a few days.   I take 2 x 5000 mcg solgar sublingual daily but still have fatigue.  

    However I also have hashimotos and was on 75mcg levo.  Wasn't feeling great so decided to add a little T3 to my T4.   I must admit that after that since January my brain fog has improved no end.   I'm no longer too scared to have a conversation without worrying about how stupid I look forgetting the the most basic of words. 

    Have you had your ft3 &ft4 thyroid levels checked recently as this may be a contributing factor to the brain fog. 

  • Oh my goodness, glad I'm not the only one who loses words..........funny enough I raised my thyroxine ( not on t3) and it improved.

  • Hi Singoutloud I can't remember to be honest but I know this gp is really good re: Thyroid. She's explained to me in the past about different levels and that they all need to be checked so I've always trusted her on that one. Mind you, after this experience I will ask her to check - you could be right, that's a good point, thankyou.

  • I don't know if you get your results printed off from the surgery but you are entitled to have them and it helps to keep a record of what's happening.   

    A lot of doctors just see that TSH is in range and say that everything is normal but don't take account of the symptoms. 

    I'm also a member of  the Thyroiduk site here on health unlocked and there is a wealth of knowledge shared by fellow sufferers.  

    If you have your results you could try posting them on there for advice. 

  • No Singoutloud I don't but will ask for them and do that. I'm on 125mcg at the moment which she prescribed just before my pa diagnosis but don't think I had bloods done at the time. I'll get on to that, maybe something needs tweaking.

  • "Saw my GP 19th who informed me that she couldn't give me anymore injections"


    I've assumed you are in the UK.

    I'd urge you to contact the PAS as soon as possible. I think the PAS (Pernicious Anaemia Society) will be interested in your story. Lifetime membership costs £20. They can offer support and in some cases can intervene on behalf of members.


    01656 769 717

    There is a recent blog post on Martyn Hooper's blog about people with confirmed PA having their injections stopped. He dealt with 5 people in one day to whom this had happened. In the blog post he talks about how he tries to support those in this situation.

    "saw my GP 19th who informed me that she couldn't give me anymore injections"

    As far as I am aware injections are for life. See Management section in next link.

    Has your GP read the "BCSH Cobalamin and Folate guidelines"?

    This has info on recommended UK treatment. I gave a copy to My GPs.

  • Hello Sleepybunny thankyou for your advice. I don't know if you saw my later post but my first one was misleading. She hasn't stopped my jabs indefinitely she just refused to extend my loading doses even though I have cognitive issues and they were helping. I'm still getting 3xmonthly and starting supplements on Wednesday as I can't wait until my maintenance jab in July.

  • Injections should be on every other day until neuro symptoms stabilise and show no further improvement. I had a battle with my doctors and they eventually agreed to once per week. However, this was not enough for me. Everyone responds differently, I inject in between times. I have spoken to Martin at the PAS, he says some ppl he knows inject more than once a day. I am a nurse and I have never had any problems with injection sites or known any patients with problems with their injection sites. It is technique that is the problem. Either get the nurse to do it or, better still, learn to self inject. After the first few goes, you will be fine :-)

  • Hi Babygodmother I may well try it if my supplements don't work but I want to try sublingual first. I spoke to the practice nurse about self-injecting but she acted dumb and didn't want to know (I'm quickly getting used to this response).

    Well done on getting your GP to agree to once a week, that's brilliant. It's nice to hear 😊. Yes I felt that my jabs should have carried on and to be honest I've not read anything in relation to fibrosis and loading doses and as you're a nurse I'm sure you would have come across it! Thankyou 😊

  • Hi there, I am so Upset myself because I feel like I have been let down for most of my life. Doctors don't have the time or the real knowledge to go with this and it is so bad ...even worse when I first had problems  ... (Approx. 30 years ago?)

     Thyroid problems were finally sorted after Many Years of pleading Tiredness and Depression  ... Plus a New Doctor did test me for B12 which of course I had! 

    Had a Wretched few years of struggling Alone and thinking it was maybe me  and Feeling like I was dying or going mad sometimes? 

     I have started self injecting at nearly 66 and hope it isn't to late to have a better quality of life .. ? Balance and Aches all over body for years plus Panic Attacks etc have meant I have not lived my life as I should have and hidden myself away because I did not feel well enough to be in company ... ? (The fear of collapsing or having a panic is enough to put me off)

    Funerals and Weddings are a Nightmare but I do them with a lot of help from A couple of G and T's and a Supportive Husband and Daughter whose arms I can hang on to..  Does not make me feel Great but the fact I can get there is something!

     So You just get on and treat yourself with SI if it is going to make you feel good again .. The NHS will not change and you have to take control yourself! Thank God we can do that now and the Internet lets us connect with so many other sufferers who will guide and help you! xxx

  • Oh Catsgalour you definitely are not alone!! I'm so glad you've shared your story with me and I'm so sorry that you feel so bad. Since joining this forum I've been overwhelmed by the bravery and also the kindness.

    I totally understand where you're coming from, I feel the same - like my body's giving up on me and no doctor cares. Nevertheless, on reading everyone's posts, it appears that we're all very strong characters which is half the battle!

    Have you tried different combinations of supplements? I wish you well 😊

  • Hi SH .. Yes onwards and upwards and Thank God for the Internet and sites like this one where we can all learn and share advice and our struggles with Doctors and Nurses etc! Guess I came over a bit Sad last night but it really has opened my eyes to the ignorance we have been kept in and NOW ... What a difference those Self Injections are making!  Husband has given me 5 now and last one was almost painless.  I am currently taking B12 complex , Folic Acid and have sent for Epson Salts to put in the bath! Watch Magnesium Tablets ...they act like a laxative!! Think a lot of it is See how you go and what suits each of us! Good Luck to you ...will follow to see how you Progress.  xx

  • I agree! Information is power and coming onto this site has definitely made a huge difference. I'm so glad the injections are helping, you sound very positive about them. I'm going to keep an interested eye on your progress too. Best of luck 😊

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