Hello 😊!

Hello! I've recently been diagnosed with PA and I'm currently undergoing my loading dose of B12. I hadn't actually heard of this condition before I was diagnosed so it's all relatively new to me, I also have hypothyroidism and put a lot of my new symptoms down to this only going to the GP when I started getting palpitations and muscle weakness. When tested my level was 92 which I was told was quite low. I'm worried the loading dose won't be enough. Any advice and information would be great 😊

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  • As you have been diagnosed with P A you will have b12 injections for life.Yes your B12 was very low, but I'm sure that you will feel the benefit of the loading doses( you should have 6 in quick succession over 2 weeks. You must also have plenty of folate( green leafy vegetable) which is vitamin  B 9. These vitamins work together. Thereafter the NHS like you to have one injection every 3 months ,which might or might not be sufficient to keep the ghastly symptoms at bay. If not you can ask for more , but they mostly won't allow that. If this is the case, come back here and we will tell you how to get the b12 ampoules( only obtainable on prescription in the U K.and how to inject yourself. Hope that this helps.

  • Thankyou for the tip regarding the folate! Valuable advice like this has been very thin on the ground. I'll see how I go on the loading doses like you say. So glad I've found this site. Thankyou again.

  • just to say welcome - and stick with this site you will get loads of information and support.

  • Thankyou 😊. I'm definitely going to stick with it, not getting much information from my GP surgery apart from when to turn up for jabs.

  • If you are in the UK and have neurological symptoms then it might be worth ensuring that your GP is aware of the protocol for B12 treatment in these circumstances - its a bit more than just 6 loading shots followed by maintenance shots every 3 months.

    regime would be shots 3 x a week until symptoms stop improving followed by shots ever 2 weeks

    bcshguidelines.com/document...

    refer to p8

    You should also be aware that people vary a lot in how much B12 they actually need and I've actually never talked to anyone who finds that they get to 3 months without noticing symptoms coming back .... and there are loads of people who need it more frequently than 2 months.

  • Thankyou so much for that, I've made an appointment with my GP and will point this out. There's so much to take in and I can't remember much at the moment - I fed the dog twice this morning lol 😊

  • You can cite the dog - feeding episode as a neurological symptom--- which entitles you to extra B12 !

  • I'll certainly give it a try!

  • Yes, I would like to confirm the frequency of shots varies a lot. I was diagnosed with PA4 months ago, after low B12 and a positive IF test. I was given a short loading period and told once monthly thereafter would do the trick. Not so. At the first sign of having to sleep more than 8 hours a night, and feeling tired in the morning, I go see my doctor for a shot, so I don't wait until I am totally exhausted. It is turning out to be about every 3 weeks. But I live in NYC, and it seems from all I'm reading, that doctors in the US may be more flexible about giving shots. So far, no trouble from insurance. But I would push hard on how you actually feel, numbers don't tell the whole story. 

  • Thankyou for that 😊. Yes it appears that here in the UK doctors aren't so flexible. I'm baffled by attitude tbh considering it's vital to the health and well-being of so many people.

  • i live in the US and was diagnosed with PA in December by a neurologist. My symptoms began after my 3rd baby was born in 2006. I was dropping things and couldnt feel my legs. Couldnt remember names of objects. Saw a neurologist and he ran a few tests and ordered an MRI and said everything looked normal. My symptoms continues off and on for years. Last year my symptoms got much worse and I went back to the same neurologist, he ordered some labs and did and EMG and said everything looks normal. He said to go see a rheumatologist, that doctor diagnosed me with fibromyalgia and put me on cymbalta, that med had so many side effects and made me feel so bad that I felt the risks outweighed the benefits so I discontinued taking it after 1 week. I finally went to a different Neurologist and she ran the right tests and diagnosed me with PA and Vit D def. My b12 was 160 and vit d was 13. She didnt do a loading dose but instead prescribed 1mg cyanocobalamin weekly injections for life and 50,000 units of vit d weekly. She said "never let anyone stop your b12 injections". At first I did feel a bit better after a few weeks but now I feel bad again. Still very weak, dizzy, fatigue, muscle pains, tremors, headaches..the list can go on. I am not myself at all. I cant exercise, and i feel completely exhausted. 

  • So sorry to hear your treatments have not worked!! I have to say I have been lucky in that my reaction to B12 is good, just have to monitor how often I need them, and my doctor is reasonable about letting me come in for shots. I don't think I need weekly, every 3 weeks seems to be helping, but I know I am low on Vitamin D and didn't really get great direction from my hematologist on that. I also have a thyroid condition, and since that and PA are both autoimmune disorders, I decided to make an appointment with my endocrinologist. He is very thorough as a diagnostician, so I am hoping to finally get a full on blood count in all areas. I am positive for the Intrinsic Factor antibodies, so I know the PA is an accurate diagnosis, but there are many other things that need to be considered with PA, as it is not just a B12 deficiency. B12 deficiencies can be related to lots of things, but in order to have PA, there are certain criteria you have to meet. That's why it is so important to diagnose properly and then have the right doctor follow-up with you. I just found a new hematologist, since PA is a kind of blood disorder. So I am hoping between my endocrinologist and hematologist, the proper treatment for any/all other deficiencies are dealt with properly! Good luck!!!!

  • Start a logbook, you will have lots of neurological symptoms that have probably been getting gradually worse.

    Digestive issues can also be neurological if the vagus nerve has been damaged.

    You will need frequent B12 injections and to convince your GP, provide a list of all your symptoms that is dated to him/her and ask for it to be included in your record.

    Once you start in injections, if the GP wants to continue testing your B12 levels, insist that it be greater than 1500 pg/ml off the top end of the scale to allow the repair of any nerve damage.

    Also you will need to supplement with folic acid, B6 and a daily multivitamin to support B12.

    Keep researching.  Nerve damage is scary stuff but once your B12 dosage and support vitamins are right things get better at a snail's pace.

    The logbook allows you to go back and see progress as it also supports any short term memory loss. You can also use it to evaluate the results of any treatment of your B12 levels.

    It can also give you some control back and reduce your stress, which consumes B12.

    Get ready for a roller coaster ride.

  • Another piece of great advice! Thankyou I shall buy myself a notebook tomorrow and start it. It's difficult to remember all my symptoms so will be a handy reference. It all sounds very complicated, I hope I can keep up 😊

  • Hi sunnyhoney 

    Welcome here.

    I'm not a medically qualified person and you've had some great advice above from those who are, so all I can say is that there is life after P.A which I've had for 45 years and I'm still "clivealive" coming up to 75.

    I wish you well for the future

  • Hello clivealive πŸ˜Š

    Thankyou for your kind words, it certainly sounds like you've got to grips with your PA! I aim to do the same. All the best to you.

  • Hi, it seems that hypothyroid and b12 are very common together also the fact that it takes ages to get b12 diagnosis due to symptoms being similar and doctors assuming they are thyroid related. I started my loading injections just before Xmas with an expectation of every 3 months and felt great for 5 weeks then symptoms came back. Went to GP and he just brought next injection forward which again lasted 5 weeks ........not yet had the nerve to ask for more but waiting and supplementing till next 8 week one is due. I think it is trial and error when you first start but everyone on here says things improve after 6 months healing. Inward and up!!

  • Yes that was definitely the case with me, but to be fair I didn't mention all the random symptoms I was having to the GP for fear she'd think I was a hypochondriac. It's very encouraging that you say most people on here are saying they're much better after 6months, I've been worried that I'll never feel better again - with the control being in the hands of someone else. Your GP sounds understanding by bringing your jab forward, I'd ask for another 😊. Could I ask what you're supplementing with?

  • I use patches, not brilliant but does help, I tried sublingual lozenges and sprays but found they took the skin off under my tongue? The jabs do take most symptoms away but after a few weeks the fatigue is awful. 1 patch improves fatigue for about 48 hours then I need another. Very confusing when also balancing thyroxine.

  • Must add, the only reason he brought them forward was because of facial nerve damage he has been treating me for for 2 years totally disappeared after loading dose but came back. I think he was relieved to have found a cause for that which now seems under control.

  • Sorry didn't see your second message. Have you seen the response from pvanderaa ? Gave some brilliant advice re: nerve damage.

  • Yes it is confusing, I agree. It's the fatigue that I find the worse to deal with tbh, not being able to just get on with all that you need to. Sounds like you're having a bit of a rough ride, I hope it improves for you very soon.

  • It took me a long time to start mentioning my symptoms in full, because I was discouraged when the doctors would just look at me like I was crazy, so I'd stop. 

    But at a certain point there's too much at risk.

    I like reading the b12 sites: b12deficiency.info, b12d.info, Martyn Hooper's blog, etc. They are so matter-of-fact it bolsters me.

    Best of luck!

  • I agree, it's better to just tell all. I will take a look at these, thankyou 😊

  • Not a rough ride just one of life's challenges, could be worse

  • Hi all....just wondering if people have found that alcohol, even a glass of wine, interferes with how they feel once diagnosed and on B12 shots? I have read it can disrupt the effectiveness of the B12. Anybody?

  • Your B12 is extremely low and I'm glad you have been prescribed injections, which according to BCSH guidelines and latest BMJ research should be 'until no further improvement.' This is very important as I believe failure to diagnose and treat correctly and adequately by her surgery contributed to my relative's severe neurological damage.

    Folic acid has been mentioned above and it would probably be better to avoid taking this whilst your levels are so low. There is an excellent film on the B12 deficiency site with information on this:

    b12deficiency.info/films/

    Haemotologist's quote:

    "If you treat someone with B 12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."

    gbhealthwatch.com/Nutri...

    "High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood."

  • Thankyou for your advice, I shall watch the film today. I've got an appointment with my GP on 19th and have lots to discuss.

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