Looking for some advice please

I am new to this site, so please bear with me. I am hoping someone can help with my issues. For the past 6 years or so I have been visiting my doctor with symptoms that I now know are symptoms of pernicious anaemia. I do have an underactive thyroid and appreciate that many of the symptom's are similar. I was tested for many things and last January (2015) was back seeing my doctor in desperation. She again took blood from me and in fact phoned me at my work the next day to say that I had Pernicious Anaemia. My blood level was 49 and my doctor said it was the lowest level that she had ever seen. She immediately started my on B12 injections and I had 5 injections over a 2 week period. Although it took a couple of weeks to really kick in I felt so much better, in fact better than I have felt in years. I was told the treatment was 1 injection every 12 weeks. I waited the 12 weeks although started going downhill after about 8 weeks. Had my injection and could not say I felt better. I started researching and discovered that the treatment was different if you have neurological symptoms which I definitely do and my doctor was aware of . I went back to see her and she agreed that I should be being treated for Pernicious Anaemia with neurological symptom's. She gave me another injection at that point. Again I did not feel a whole lot better like I did after the loading dose. I went back again to my doctor feeling just about as bad as I did before I was diagnosed. She agreed to give me another loading dose, this had the same effect as the first time and I felt so much better. However, after 8 weeks I had a single injection and 3 weeks on I feel once again that I am back to square one. What I would really like to know before visiting my doctor again is - I she giving me the correct treatment? I have been reading this site and it seems people are getting very frequent injections. According to my doctor 8 weekly in exceptional!!!.

I feel my next step has to be looking at self injecting. I have no idea how to about this but I am hoping somebody on this sight will be able to help.I would also like to know if I should tell my doctor this. I am sorry that this has been so longwinded, but any advice would be greatly appreciated.

Thank you in advance.

12 Replies

oldestnewest
  • Hi,

    I've assumed you are based in the UK.

    Have you rung the PAS (Pernicious Anaemia society)? I'm sure they would know about correct treatment.

    pernicious-anaemia-society....

    01656 769 717

    Office open from 8am till 2pm every day except Sundays. if you leave a message they should get back to you within a few days.

    "I started researching and discovered that the treatment was different if you have neurological symptoms which I definitely do"

    You are right about this. Details of the recommended treatment can be found in

    1) BNF (British National formulary) Chapter 9 section 1.2.

    Most GPs will have a copy of this sitting on their bookshelf...

    2)Do an internet serach for "BCSH Cobalamin and Folate Guidelines"

    This document came out in 2014. I was told the NHS should be following it. I read the whole document then gave a copy of it to my GPs to make sure thye were up to date. Page 29 is a diagnosis flowchart that mentions treatment for those with and without neurological symptoms.

    3) This link contains similar info to that in the BNF. See Management section

    patient.info/doctor/pernici...

    I also gave my GP a copy of the book

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

    This book was published in Oct 2015 and is very up to date with the new BCSH guidelines.

    Martyn Hooper is the chair of the PAS. He has written several books about B12 and PA.

    "I had 5 injections over a 2 week period"

    The BNF I believe mentions 6 loading injections and more than this if a patient has neuro symptoms so i'm curious at to why you only had 5 loading injections.

    Some GPs may not have read the BCSH Cobalamin Guidelines so may not know the latest recommendations. Most areas of the UK have their own local NHS B12 Deficiency Management guidelines which may not have been updated recently. These local guidelines may be found by an internet search, a search on local NHS website or possibly an FOI (Freedom of Information) request to local NHS website.

    If you are in England your local CCG (Clinical Commisioning group may be able to tell you if the BCSH Cobalamin Guidelines are being followed in your area.

    nhs.uk/servicedirectories/p...

  • Hi, thank you so much for responding. I will certainly look at everything you have said to look at. As for the initial 5 injections this is where it seems there is conflicting information. I am in the UK in Scotland. I don't want it to seem like I am criticising my doctor, but I feel I have look after my own health and I want to be very prepared when see her. Thanks again.

  • Dear bethb99,

    You will find it very difficult to get the amount of injections you need unless you have an exceptional doctor If I were you I would seriously think about self-injecting. Their guide-lines are laid down in stone I'm afraid. You have been seriously low in B12. You may have some neurological damage which is irreversible. I had to self-inject until there was no further improvement. But I am so much much better now! My doctor doesn't approve of what I do. There is so little understanding in the NHS for P.A.(also no interest from the big pharmaceutical companies,as B12 cannot be patented i.e. no big profits.)Private doctors would treat you as you desired, but this would be very very expensive. See how you go on,and come back to this site if you want help with self-injection. All the very best to you.

  • Hi Wedgewood,

    Thank you so much for taking the time to reply. I completely agree that damage has been done and is probably irreversible, however I am trying to be positive just try to get myself feeling as well as I can. I have decided today to self-inject. So any help and advice on where to get it would be greatly appreciated. Thank you again for taking an interest, I have felt since my diagnosis that Pernicious Anaemia is misunderstood and I have very isolated and

  • My story could have been written by you!

    I have just sourced hydroxo from germany but holding off using it for a while longer as i am getting on ok with the methyl patches and cyan droppers from holland and barretts.

    Lots recommend yarrows sub ling lozenges but they didnt do a thing for me. Look at past posts on here and you will find the exact things you need if you do self inject.

    Unfortunately it is a very individual thing what works for one, not necessarily someone else.

    Also look for posts about folic and potassium. as you will more than likely need some to make the b12 as effective as possible.

  • Hi Lisahelen,

    I am so thankful for the replies on this site. For the first time I do feel totally alone. Could I ask you if you sourced the injections through Amazons German site. I have looked at it and am a bit lost. Once again thank you for the information.

  • you might want to share this page and associated materials with your GP

    pernicious-anaemia-society....

  • Hi Gambit62,

    Thank you for that. I have printed everything off and will take it with me when I see my doctor.

  • I notice one of the recommendations is for anyone with neuro symptoms to see a haematologist. What is the experience of people on this site who have seen one? Are they any more inclined to follow these guidelines? Presumably if they are not, it would make one's GP even more disinclined to do so.

  • My GP contacted a hematologist who was as you suggest worse than useless. He then referred me to a neurologist who said not to change my treatment (daily jabs)... and then reduced my jabs to one a month anyway! Fortunately I had sourced my own supplies.

  • Hi,

    Welcome to our group!

    I had exactly the same problem so know what you mean and sympathise completely. Every time I needed more jabs and didn't get them quickly enough I found everything got worse and I needed even more B12 to repare the subsequent damage. Very scary!

    Now you have found us you definitely aren't alone!

    For lots more information, including sources of ampoules and equipment, plus the chance to compare notes with more people in the same situation, you could ask to join the closed Facebook group at

    facebook.com/groups/PAB12DS...

    You can converse with others in the group in total privacy and it doesn't show on your visible timeline. There is a file where you can register where you live and see who else is in your area if you wish.

    Sublingual B12 lozenges or tablets and sprays are available online and I have found Amazon most cost effective. I buy 5000 mcg B12 and personally liked Solgar best, then Jarrows Formulas and then others. Although the dose is 1/day, I have taken up to ten a day with positive results!

    B12 Boost Spray is also very effective for me and works quicker but if I take extreme doses I get a sore throat!

    Look things up for the latest deals and keep checking as the deals change. You can get them for about 10p to 12p / dose.

    Some people find nasal sprays and skin patches effective too.

    There are other good online suppliers but I have bought my B12 ampoules from versandapo.de. I set up a PayPal account which was easy to do and deals with all the exchange rates and taxes. If you open the website in Google Chrome it can automatically translate everything for you.

    100 extra strength ampoules cost me £84 including delivery. They sell smaller boxes too. I'm sure other people have bought standard strength ones for much less than this.

    Needles, syringes and sharps boxes are readily available online but as I needed mine immediately (my Dr stopped my daily jabs without warning) I got mine from my vets.

    100 x 21Gx1.5 draw up needles and 100 x 23Gx1 injection needles plus 100 syringes cost me £32 but are cheaper online.

    I hope this gives you an idea. Good luck! Don't be afraid to ask more. x

  • Hi all, I don't have pernicious anemia but I do have very low iron stores. I just wanted to suggest that anyone that has to have B12 shots be checked for a genetic mutation called MTHFR. It will make a huge difference to the type of B12 that you should be having. The list of implications is too big to go in to in this message. Please read up on this disorder and get checked for it as it could literally be life saving. I wish you all well.

You may also like...