I am fuming!!

Yesterday I went to the doctors about knocking my 2 month jabs back up to three. In the course of our conversation he said he wasn't aware I had PA!!! How can he not have known my medical notes are automatically sent to the new practice via an NHS third party. So I have not had any treatment for PA in over 7 years!!!! Just B12 jabs. Had a blood test so god knows what's going to happen now. Cried all day yesterday thinking about how much better I could hav felt, a different life I would have had if only I had known they had no idea😢

I got my own supply of B12 serum now where can I get the needles in the UK?

[engels]

I'm confused. Treatment for PA/B12 deficiency is B12 injections. What else were you expecting?

I buy needles from Medisave - medisave.co.uk/

[Hidden in reply to engels]

There is quite a difference B12 is great, but utterly useless if you haven't had folic acid since the 70s as I have learned on here B12 will remain inactive unless it can use folic acid to get to the blood so it can repair. I have been at this surgery and for it not to be known for this long as they have watched me go down hill is upsetting, that's why I'm fuming.

[Secondchance in reply to Hidden]

Methylfolate is better as more bioavailability than folic acid, so more likely to help your body use B12 injections

[Hidden in reply to Secondchance]

Thanks Secondchance that's a lot of help. 👍🏻

[Secondchance in reply to Hidden]

I got mine on amazon

[Hidden in reply to Secondchance]

Yes I have ordered mine fron there today Secondchance x thanks

[Gambit62 Administrator in reply to Hidden]

PA doesn't necessarily mean that you have a problem absorbing and using folate as well. Are you saying that you also have a problem with folate - that may be indicative of something else, eg you may have the MTHFR gene.

[Hidden in reply to Gambit62]

What I am saying is the being B12 deficient is different than having PA and my doctors have been treating me as B12 deficient. Eight years ago I wasn't walking into walls and being so scatter brained. I was diagnosed with PA in 2004, some how when I changed doctors the right info was not sent through to my new doctors who I have been with for around 7 years. The problem is that no-one has looked at me as having PA because they don't know I have it, as far as they are concerned I just had a B12 deficiency and was dropping the frequency and no doubt end it at some stage. I am in agony most days with nerve pain, gulps pins and needles and lack of co-ordination..... Something isn't right I know my body.

[Gambit62 Administrator in reply to Hidden]

PA is one potential cause of a B12 deficiency. It is far from being the only one. The symptoms you are talking about are the symptoms of the B12 deficiency that is caused by PA.

Unfortunately the treatment regime for B12 deficiency is far from adequate and large numbers of people do experience little if any improvement on the normal regime - but that is true whatever the cause of the deficiency - it isn't unique to PA.

You may be suffering from functional B12 deficiency - this occurs when B12 levels in serum are high and the body has an autoimmune response that basically kills the mechanism that transports B12 to the cellular level, so you are deficient at the cellular level even though your serum levels are quite high. One study in Denmark implied that this reaction happens in about 30% of the population. There hasn't been much by way of studies but there doesn't appear to be anything to specifically link this to PA as it also occurs in populations that don't have a B12 deficiency but whose B12 levels are elevated due to other causes (eg liver and kidney problems.

There is, as far as I am aware, no literature out there on how to treat people with a B12 absorption problem who also exhibit this auto-immune response - the only literature I have come across implies that the only way is to flood the body with so much B12 that there is more in transit than your body can create anti-bodies for. I'm pretty sure that this is a factor in my own case as I seem to need very high daily amounts to feel well. However, there isn't anything in the NICE guidance on the phenomenon, assuming you are UK based.

[engels in reply to Hidden]

There is no difference. B12 deficiency is B12 deficiency no matter what the cause and the treatment is the same. In the UK that treatment (on the NHS anyway) is hydroxocobalamin injections which is what your doctor will have been prescribing. Whether you have been having the injections frequently enough is a different matter entirely.

[KiPeRi75 in reply to Hidden]

My folate levels have always been excellent, not ever had to supplement

[engels]

Pernicious Anaemia (i.e. lack of Intrinsic Factor) is just one of a number of possible causes of B12 deficiency and the symptoms and treatment of the B12 deficiency are exactly the same regardless of the underlying cause. A good level of folate is required for B12 to be utilised by the body but this is true whatever the cause of the deficiency, not just for PA.

Has your folate level actually been checked or are you assuming you have a folate problem because you feel that your B12 injections are not as effective as they should be? If you have only been having an injection every 2 months then I suspect that at least part of the answer may simply be that you need the injections more frequently.

[Hidden in reply to engels]

Engles, the only levels that have been checked, (just in the last couple of months) were B12 serum levels, which were at 2000 so they assume I am not B12 deficient instead of looking into why I am in so much pain. They then make me wait 3 months for my jab. That's when I found this site and learnt so much, I took a list of my symptoms up to see the doctor yesterday and that's when I learnt from him that there is no record of my having PA in the files!!

[Hidden in reply to Hidden]

This morning I got recalled for more blood tests!! I gave them blood on Monday 8th before the B12 jab, the results of that one are-Serum B12 normal @510ng/L, Serum Folate- Normal @3.9ug/L

! Full blood count satisfactory then there is a list of different things.

My question is how come three months ago my Serum B12 was 2000 and now it is 510? doesn't that indicate that it is going down pretty fast? how much goes in through one injection? At least the doctor listened to me on Monday and has found the notes that he thought wasn't there, which is something I guess. I await the next set of blood test results and thanks to you all I ask for a copy now. My B12, needles and syringes have come but I will lay off self medicating for now and await to see what the doctor says. Thanks all for your support.

[Secondchance in reply to Hidden]

Your folate is on the low side so it would be wise to take methylfolate to get best use of your B12. Good luck with your tests.

[Hidden]

Needles free from Community Drugs Team and they'll give you swabs and yellow box.

[Frodo]

I realised some time ago they don't read the notes. I'd assumed they look at your notes before you go in for an appointment! Some years ago I had a serious problem in pregnancy, saw different doctors each time, and not a single one knew about the problem (which was of course in the notes). I had to go through the entire story from scratch with every single one. Which was both traumatic and alarming.

[elkievin]

I understand how you feel a GP at my surgery told me I had nothing medically wrong with me. Each new GP scale tests me for depression and I have explained any mood changes is due to frustration but this is ignore. I have been told I do not have PA as I get B12injections every 8 weeks, I did not get any loading doses on initial diagnosis. I spent 7 frustrating years trying to find out why I was fatigued. I have had to make a real nuisance of myself and insist on seeing a neurology consultant he diagnosed ME and left it at that as not interested. My PA symptoms over the last 3 years have got worse and no one in the NHS system is listening so work has disciplined me for being ill next step 'the boot'. I work with an MS sufferer and was shocked to discover we have similar symptoms mine without the life shortening. PA is not recognised by any one but sufferers. Rant over. I wish you the very best of help and for consultants who will listen and treat you.

[DBee]

Hi Iresee

I have been hunting online (I'm very newly diagnosed with B12 deficiency and meeting all the walls everyone else is talking about already and I have only had my first injection)!

I have been hunting online and cannot find where to by injectable hydroxocobalamin - can you advise please?

I hope today is a better day for you.

DB

[Hidden in reply to DBee]

Sorry DBee I didn't get online to reply but I see engles has given you the info you're looking for. Take care, hope you feel better soon.

[DBee in reply to Hidden]

Thanks Iresee

[engels]

There has been a lot of discussion on where to source hydroxo on other threads but unfortunately the very poor format of this forum makes it difficult to find historic information and there is no way of creating "sticky" threads where useful information is readily available. I buy mine from Goldpharma - goldpharma.com - and if you enter goldpharma into the search box you will find some of the discussion. Others use Mycare - mycare.de/en/

[DBee in reply to engels]

Thank you Engels

[illnesswhatillness]

First of all , your doctor will only be prescribing hydroxycobalamin which is an inactive form and needs to be converted to get it into tissues . If your body can`t convert it , all it will do is make your B12 serum level rocket up and your " doctor" will then say " look , your level is now in the `normal range` " . If you have had nitrous oxide gas at any point in your life ( gas and air) , it may well have switched off your b12 synthesis and this can be permanently . You need to use Methylcobalamin , which is an active form of B12 and is already in a converted form . I suggest that you try B12 boost spray first ( Holland and Barrett ) because it is methylcobalamin and many people say that it works very well for them . Spray it under your tongue 4 times per day . Take some CoQ10 as well to aid absorption and take a t-spoon of black strap molasses per day for iron . Someone made a deal to keep methylcobalamin in the "private sector " . In theory , if you want to reverse the damage done to your body of nitrous oxide gas and B12 lowering pharma drugs , you will have to pay privately . I would call that being ripped off ! I have started a petition on change .org . Please sign it and pass it to as many others as you can and ask them to sign : Medicines and Healthcare Products Regulatory Agency : License Methylcobalamin B12 for injection on the NHS