Hi, I'm new here, although not new to B12 deficiency or the PAS site. I'll give you some background before I explain my current dilemma.
I'm a 36yo female, and was diagnosed around 9 years ago with b12 deficiency but not PA (IF levels were and are still fine) with serum b12 levels at 109ng/L. I never want to feel like that again. The GP who undertook my initial tests and confirmed my diagnosis was brilliant, tested for B12, along with a range of other things, first time and was really supportive when I approached him to increase the frequency from 12 weeks to 10. The frequency later reverted to 12 weeks at the request of another GP in the practice.
I know that the last 4 weeks of 12 will see a gradual decrease in physical and mental function, but it's rarely so bad that I can't function at all provided I supplement with oral b12 at the same time (up to 1000mcg/day). Having had a couple of low b12 episodes that coincided with events that needed me to be fit (a motorcycle holiday, moving home, a number of amateur theatre performances and dance displays) I invested in some hydroxocobalamin ampoules and began to self inject when I felt it necessary. I had decided late last year to add the injections as part of my regular maintenance regime at the mid point between NHS injections as I decided I wasn't prepared to sacrifice my physical or mental health for NHS guidelines that weren't consistent either with my experiences or with that of others on various forums and presented in a variety of research and medical sources.
I moved GP at the beginning of 2019 as I moved house and was no longer in the local area for my previous GP. I booked my injection appointment in late January as usual, in part expecting to be sent for a blood test (not remembering that the advice is not to test once therapy is underway) so not having self-injected in between appointments. No blood test was required and the injection was administered as usual at my new practice. I self-injected at the 6 week point as I'd planned and was definitely feeling consistently better. I booked an appointment for the next injection in mid April, only to arrive and be told I must have a blood test. So, I went for a blood test, and because I was beginning to feel symptoms returning followed up with an injection. The blood test came back at ~1,000ng/L serum B12. As this is over the 771ng/L guideline, my GP called to advise that I would not be able to receive another injection and to attend for another blood test in three months.
I continued to supplement orally but have not self-injected since. My next two blood tests were not processed as they were not correctly labelled; I finally had a successful blood test in September which came back at 777ng/L. No further injections are to be given at this time.
At each blood test appointment I was aware of symptoms including low energy, brain fog and early signs of depression and mood swings. I shan't get further distracted telling you many things that are part of your normal lives, you are all aware of the impact of the symptoms of B12 deficiency and PA.
I followed up with an appointment with a GP this week, who told me that my symptoms (tiredness in particular) were not related to a B12 deficiency because my B12 levels were too high and my haemoglobin levels were too consistent (between 130 and 140 for all my blood test results, even those where my B12 was at 109). She does not see a case for continuing my injections; she suggests that I may have Chronic Fatigue Syndrome and that she will speak to a haematologist. I sobbed through the whole appointment, and as my B12 levels weren't great to start with, was not able to explain my symptoms and effect of historic treatment clearly. I had prepared a list of symptoms and brought all of my B12 supplements with me, but didn't manage to present her with either of these. I spent the following two days either in tears or too exhausted to think straight. I took oral b12 yesterday and am feeling marginally better now, hence this post.
I have another follow up appointment next week. I am aiming to be more prepared, and am weighing up whether to take my Mum with me as she has seen me at my worst over the past few months.
Apologies for the length of introduction, but I find it helps me to set out the story before I ask questions so that I don't miss anything. My questions for you as a group are as follows:
- in your experience which are the best resources to use with GPs to discuss this? I felt that my history and symptoms were being dismissed but I don't want to seem confrontational.
- I have been in two minds as to whether to self-inject before the appointment next week, what would you do? I'm not looking for someone to make the decision for me, just for a range of opinions to help inform my own decision. I know that I will feel considerably better and be in a better place to discuss and present my case, but it will throw out any further blood tests (ignoring that the NHS advice is that there shouldn't be any). I would admit to self-injecting to my GP as I'm aware that she does not have the full picture of the range and level of supplementation that I've felt necessary to function over the last few months.
Many thanks for sticking with my post this far and for any thoughts or insight you can share.
Written by
F1lligree
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Even though your I.F.A. Test came up negative, it doesn’t mean that you don’t have PA . At least half of PA patients will test negative. There is no reliable test for PA . The result is reliable if the outcome is positive . You should be judged on your symptoms . Unfortunately GPs do not know this . Once B12 injections are started , blood tests for it are waste of time. You will always have high readings. These results show how much b12 is in the blood .It does not show if the B12 is getting into the cells that need it . You know that yourself from the symptoms you get , or don’t get.
I had a positive test , which proved I had PA , inspite of this , I could not get more regular injections than 3 monthly , although the symptoms returned long before that. I had to resort to self-injecting for my health’s sake . You will get links from other members to useful articles that you can print out and show to your doctor ( they don’t always react in a positive way to this! )
Yours is a tale that we hear so often on this forum . It’s more than possible that you have PA .from what you tell us .
You can inject B12 as often as you feel necessary . You cannot is overdose .,
You could read Dr Sarah Myhill's book on M.E. and C.F.S. B12 njections are one of the treatments .
Hope that someone can give you those links you need .
A few years ago I had bloods taken for thyroid related symptoms and B12 came back under range. I argued for it to be treated and was told no need as everything else was ok. I took oral supplements and almost 2 years later was back with increased B12 related symptoms.
I had private bloods done & just into low end of range, same when GP tested. I had paperwork from B12 society, completed PDF of symptoms, wrote a letter in & gave recommendations sheet for management. Advised no treatment required but had it been the same as 2 years prior I would have been started on injections!
I self inject, I cannot wait for GP to manage my symptoms and decide whether I warrant treatment. It works out about £1 per injection, including needle, and if we lived elsewhere in Europe would be able to buy over the counter. I know when I need topping up and I feel so much better. I don’t have to go to nurse, pharmacist or gp, I’m in control.
Can be more effective to write a brief as possible, polite letter outlining concerns which also has evidence that supports your request to have jabs reinstated.
Could contain symptoms, family and personal medical history, test results, extracts from B12 documents.
In UK, letters to GPs are supposed to be filed with medical notes.
"and am weighing up whether to take my Mum with me"
If GP is unhelpful I would recommend having a witness present. Even better if they have read up about B12 deficiency and can speak up on your behalf.
Help for GPs.
PAS website has section for health professionals that GP might find helpful.
These days I don't trust what I am told about results unless I have a copy in front of me. I suggest accessing test results online or getting copies if you haven't already seen them.
Warnings....
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
Thank you all, particularly @sleepybunny for the links and cross-referencing my information against them, it's really appreciated. I think I read Martyn Hooper's CFS/ME post on the bus after my appointment, but couldn't find it again so that in itself is really useful; I'm working my way through the rest while I have the energy to do so and take it in.
I hadn't realised that I could still have PA even if the IFA test was negative, so I shall bear that in mind - I only have to look back at the years before my diagnosis to realise how bad my health got and what I put up with because I assumed I was "just tired" to know that I don't want to go back there, even for a day, if I don't have to.
I've technically got access to my medical records (signed up through patientaccess.com) but my practice doesn't allow me to see my test results or records. I need to follow this up with them to understand if this is local NHS trust practice or something else as I know that I have a right to see my own records under GDPR/DPA rules. I have seen my B12 results on screen at my recent GP appointment although I don't have a list of B12 injection dates to cross reference them to. I've seen my IFA results on one set of blood tests and they were within the "normal" range, for all that I've seen that is worth anything.
The more I read on here, as well as the responses you both took the time to post, the more comfortable I am that I made the right choice to start down the SI route. My first GP didn't question whether the injections should still be given even when I did have regular blood tests (every 12-18 months), so the change in approach between practices is more of a surprise than anything else. I will take a small selection of information with me so that I can ask her to cross check (rather than telling her she's wrong), as I'd like to make sure my medical records still show a B12 deficiency if there's ever need for any kind of emergency treatment. I'll ask Mum if she's available to come with me too, and share the information above as I know she's been doing some reading on the subject recently.
I dread to think how many others at my new practice have had to deal with the same problem and would hate to think that I gave up so easily.
Thank you all, again, so much. It such a blessing to have a forum in which I don't feel I have to explain everything that has or is going on with my mind or my body in order to get both support and information. You're brilliant, however good or bad a day you might be having.
Hello. I can’t advise you nowhere near as well as the others on this thread but I just wanted to say I’m in exactly the same position as you. It’s a scary place to be when your health is in the hands of someone else.
Though recently I have had a folate acid test and I didn’t realise the folate acid is a B vitamin.
I was low on this and been feeling awful.
My b12 is high too so I’m not going to get it any sooner.
Maybe see if your folate is low if you haven’t already because it would be contributing to your symptoms and you can also have a deficiency in it so your b12 maybe fine and your folate maybe way off or really low.
Just a thought because this was overlooked for me and I did some research, the symptoms can be worse than the b12 ones or if you have some slightly worse symptoms it can be due to that, it’s worth thinking about.
I’m currently on tablets to fix this but it can take up to three months to get it back to a normal range from what my doc said.
Hope you get you b12 injections sooner, every little thing helps x
I am so sad to hear about your experience. I tested negative for PA when a blood test showed B12 deficiency and the GP wanted to give me oral B12. I refused and insisted she thoroughly investigate the cause of my deficiency. After much huffing an puffing she agreed to a faecal calprotectin test which came back showing inflammation and agreed to send me to see a gastroenterologist. Turns out I have small bowel Crohns! I would suggest you insist on further investigation to establish the cause of the original deficiency as unless you are vegetarian or a heavy drinker B12 deficiency has an underlying condition causing it. If full investigation reveals nothing remind the GP of the unreliability of the PA test, which gives a very high false negative. I too got diagnosed with Chronic Fatigue , despite intermittent anaemia and gastrointestinal symptoms and suffered for years before my B12 fell and I could finally get to a gastroenterologist who was prepared to do a capsule colonoscopy based on my faecal calprotectin test, small bowel Crohns often gets missed with a traditional colonoscopy which I had had previously.
Well, I made it through my appointment without crying. GP was a bit more approachable, although she still thinks that my symptoms are not B12 deficiency because I don't have peripheral neuropathy. She drew back a bit on the CFS suggestion and has referred me to a haemotologist. She says she has a number of B12 deficient patients and I don't present with those symptoms. She did agree that if my symptoms get notably worse before my appointment with the haemotologist, then I can ask for an injection.
I'm not sure if I'm pleased that she's referred me, or frustrated at being denied the treatment that I know works.
Hard to gear up just in case you are faced with an unwarranted battle when feeling this ill. Concentration and memory problems alongside mood swings and impatience/ tears strangely NOT seen by many GPs as further evidence of b12 deficiency (!) and so there is always the risk that they will send you off with antidepressants. You did really well.
Since "syndrome" is just another way of saying "group of symptoms", it always seems to me less than a diagnosis : CFS and IBS to my mind seem to be used once everything else has been eliminated, and could easily be used to describe the fatigue and diarrhoea that can be just a couple of B12 deficiency symptoms.
The process of explaining away in this fashion all of your symptoms could become quite a lengthy one. After 4 years of consultants, I'm currently on "angular cheilitis" - which seems to have finally started to clear up after 2 years of self-injecting. This is a symptom that I have had for well over 10 years, so you can imagine how reluctant I am to reduce injections right now.
Despite a long list of symptoms that make it very difficult to return to my former life, the one thing that without fail seems to cause concern is my self injecting regime.
I personally found the haematologists that I saw a few years ago quite alarmist about B12 and was told some unsubstantiated rubbish that then translated into a feedback report to GP telling her to reduce my injections to 1 every 2 months - which made all their ridiculous and insulting allegations highly suspect. However, because my GP said that she needed help with my treatment, this was the regime I was given from that point onward. One that I think we both already knew would be inadequate, despite there not being a clear reason offered for this from anyone so far.
This is why I started self injecting. I'm improving but it's been slow and sometimes hard work.
It is difficult to rule out PA because IFab tests are notoriously unreliable*. Consultants can be the same in my experience. Hope your experience proves to be different - however, I would highly recommend taking a friend or partner with you to your Haematology appointment, just in case you can't believe your own ears ! Best of luck, F1lligree .
* Martyn Hooper, founder of the pernicious Anaemia Society, had to have 3 IFab tests before he got a positive result.
Hi, I tested positive for IFAB yet have had my gp stop my injections for almost a year. I saw a different gp at the same surgery to ask for a second opinion eventually. I had all the facts and info ready to quote on my phone expecting an argument. Instead it wasn’t needed as she understood straight away, seemed confused that someone had stopped them and gave me a shot there and then (never known a gp do that). You always have the right to seek a second, or third opinion on your health. You just have to hope you get a good doctor with knowledge of this condition
"I've technically got access to my medical records (signed up through patientaccess.com) but my practice doesn't allow me to see my test results or records."
This seems odd to me; the only reason a GP practice can refuse access to records is if they feel that to have access could cause you harm in some way. If they feel this is so then my understanding is that they are supposed to inform you.
I wonder if there is something in your records that they don't want you to see or perhaps they are concerned about the possibility of you making a complaint . If GP practice thinks a complaint is likely they can become very protective of staff.
As well as Patient Access, which is access I think to an online summary of results/records, my understanding is that you can also request access to your paper records. This would probably require a signed letter to practice manager. There may be things in paper files that are not online.
1) Consider making an appointment with practice manager and ask why you are being denied access; suggest having someone with you as a witness.
Downside is that this may make the practice manager irritable; weigh up pros and cons carefully.
2) Consider writing a letter to practice manager asking them to write back giving their reasons for denying access. The advantage of this is that you then have evidence in written form.
You could quote from GDPR/DPA rules in letter.
3) Consider making an official complaint if they continue to deny access without giving a reason.
"she still thinks that my symptoms are not B12 deficiency because I don't have peripheral neuropathy"
The range of symptoms of B12 deficiency is broad; some people present first with mental health issues. Not everyone will present with PN Peripheral Neuropathy first.
"Neuropsychiatric symptoms of B12 deficiency: not just in the elderly and often without anaemia"
So, nearly a year after my last official b12 injection, I've finally spoken to a GP who listened, and have had my b12 injections reinstated! That said, the haematologist that I was referred to declined my referral while also advising that my b12 injections shouldn't be continued as my levels were in the normal range, so still a substantial level of frustration. My latest GP agreed to put a comment on my notes that I should be on 3-monthly b12 for life (which is what my previous GP noted), and considered new loading doses, although decided that we would see how things went on the old routine.
Latest GP has also said that I shouldn't be taking supplements as well as getting 12-weekly injections, but as I didn't mention that I've been self-injecting since October I figured I'd let that slide. One small step at a time, I plan to monitor my symptoms once back on the 12-week cycle and then push for 8-week frequency later in the year. Either that or go back to SI in between "official" injections, but we'll see.
Small progress, but I couldn't have done it without the help of all you lovely people, so thank you so much for your support and information sharing. 😊
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