The conclusion is that I don’t have any neuro problems. All the tests she did for balance, reflexes & memory were all normal!
She had no answers as to why I had numb areas & painful areas on my hands & feet & just said that our bodies sometimes react like that!
She had to prompt me & give me clues during the memory test but then declared that I’d passed!
When she pricked me all over with a pin & asked if I could feel it the answer was yes - because she didn’t do it in any of the areas that are numb! Trouble was she went so fast I wasn’t even sure what was happening! By the time I’d processed what she was doing she was moving onto the next test & it wasn’t until later in the day that I registered that she hadn’t pricked any of the numb areas!
My left leg from the knee down to the toes was hyper sensitive to the pin pricks & hurt more than any other part but she wasn’t interested in that.
Any questions I asked she said she would have to discuss with her consultant.
When she wrote to the GP she stated I was to be given an alternative to Omeprazole despite discussing with her the downfalls of putting me on an alternative based on past experience. The next thing I knew a script for cimetidine had been sent to the pharmacy with no discussion with me! Within two days of starting it my stomach was burning & the reflux was plaguing me again. I spoke to the receptionist who messaged the duty dr & another script for famotidine this time was again sent to the pharmacy with no discussion with me! That appears to be better than the cimetidine but my symptoms are still not fully controlled. I am also unclear whether famotidine will affect B12 absorption; I know it works in a different way to the Omeprazole but it still reduces acid production which in turn affects absorption. I’m assuming she must be considering getting me off the Omeprazole so she can stop my injections otherwise what would be the benefit of stopping the Omeprazole as obviously the injections are not reliant on me being able to absorb it?!
She told the GP that as I was very keen to try more frequent injections she could allow me to have three at four weekly intervals but that I was unlikely to have any benefit as my levels were greater than 1500. I did question why she was testing it when the guidelines say not to but she was insistent that she needed to know what my levels were currently. I have not seen the result in black & white despite asking for a printout. The receptionist said it hadn’t been uploaded to the surgery from the hospital. Every other blood test result for FBC etc has been recorded online on ‘My Medical Record’ account except the B12! Besides which it was just over four weeks since I’d had a jab so it would be expected to be high! After the three, four weekly jabs she is to revert back to giving me eight weekly & then test again if my symptoms flare again!!! More testing despite the guidelines!
She has also insisted that I should have a head & neck MRI (despite my protestations) to ‘prove to me that there’s nothing wrong’ !!! Her words to me in person… but in the letter she said ‘for reassurance’! Quite different in my opinion! I asked to trial more frequent jabs & review after that if an MRI is still necessary but she has ignored that & has told the GP she will arrange it.
Her letter said I worry that I might drop things - what I actually told her is that I’m constantly dropping things! A full glass of lemonade made a pretty big mess! Just one example. But apparently that’s normal!
Further to all of that she then majored on anxiety being the reason for my symptoms! I switched off at that point! I’d been waiting for that tack as that’s what the GP had been trying to say alongside blaming menopause & offering anti-depressants!!! I declined! Beating my head against a brick wall springs to mind!
My query regarding the guidelines on EOD injections for neuro symptoms was brushed aside & because I said I improve after an injection in terms of fatigue & foggyness but then decline again from about the four week mark that’s presumably where she plucked four weekly injections from! That only partially deals with the general fatigue/foggyness issue & doesn’t address the ongoing problems with my hands & feet & balance & marked decline in memory problems & fatigue etc as I get nearer to the eight week mark - the reason I’ve been asking for EOD injections since last September!
I had two lots of loading injections about six weeks apart & had a good response at the time but stopped improving soon after & haven’t really made any significant improvements since - my argument is we don’t know if I will have further improvements on EOD injections because I haven’t been allowed them! If I had a good response to the loading injections who’s to say that response wouldn’t be greater if they were continued?!
I left feeling exasperated which in hindsight isn’t really a surprise! I have an appointment to return for a review in January 2022!
fbirder are you able to shed any light on whether famotidine will cause the same issues as Omeprazole regarding reduction of acid/absorption of B12 or not please?
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It just didn’t feel like the focus was in the right place. She didn’t seem to want to actually look into the areas that I was saying were causing me the problems, just did the general tests & pronounced them all normal. That’s all very well but it still hasn’t addressed the problem areas.
Yes, anxiety is an easy thing to blame! Takes away the need to actually listen to the real issues. So infuriating.
She told me she wanted to prove to me that there’s nothing wrong by doing the MRI but that she was concerned that it may show up something incidental which would then cause me more anxiety! Time will tell! MRI’s are not my favourite pastime! I had diazepam when I had one on my liver (as I hadn’t coped well with the one I had had years previously) but it made me fall asleep which was a nightmare because she wanted me to breathe in & hold my breath - needless to say the MRI took far longer than it should have & she was quite frustrated at me for my apparent lack of co-operation; it turned out she had forgotten that I’d had the diazepam so just thought I was being difficult!
Yes I do have a follow up but it’s so far away & I’ve already waited since last September for the original referral & I don’t really feel like I’ve made any progress from the first appointment.
I’ve had amitriptyline in the past but the side effects were too troublesome to continue with it & in hindsight I believe it just delayed the B12 deficiency diagnosis.
It is a lot to take in, especially as nobody can go with you currently. Previously I would always have had somebody with me for appointments as another pair of ears is always helpful.
It’s such a battle to get a a GP appointment at the moment & they are all over the telephone which doesn’t help but I probably do need to try to have a conversation at some point. It’s also tricky as I work full time & the telephone appointments are all in working hours it would appear.
I'm glad to hear you are able to work. Telephone e appointments shoukd be available to thises thst are in paid work. After the 19th they must open surgery doors surely
It’s been a struggle but I just about manage. I’m not much good outside of work currently though. I would love to be able to get back to being more normal! I know there isn’t really any normal for anybody with covid but… I can live in hope!
I’m not convinced that they will. I wonder if they will carry on with the telephone appointments being the first line of contact & then the GP decides if you get to see them face to face. Time will tell.
Famotidine suppresses stomach acid , so acts like a PPI . If you have P.A. , you already have low /no stomach acid Hypochlorhydria/Achlorhydria , making absorption of other vitamins and minerals more difficult. .I had to give up trying to get more regular injections ( had to get a private IFAB test which was positive and obviously annoyed my GP . ) Insisted my numb feet were “idiopathic “ , even though I had PA. Only allowed one injection everu 12 weeks . I had to start self-injecting .. I told my GP ,:who said it was toxic . Anyhow 7 years later, I’m still injecting weekly . My feet recovered a bit going from totally numb to burning hot( not to the touch ) . I keep hoping for further improvement , but I doubt that will happen now. Correct treatment was left too late . . It’s great to be in charge oneself , and not having to put up with the arrogance and derision of the doctors . It’s so easy and cheap to self -inject . Totally painless . I would give it some thought , if I were you , although it’s not right that we are forced to do this . I have my own ideas as to why this situation happens , but it’s best I keep these thoughts to myself .
The IFAB test the GP requested was negative so she has dismissed that altogether despite me debating with her the lack of accuracy of a negative test.
It’s clearly a common scenario having to do battle with GP’s as is shown by the many stories on here. It’s the long term effects of insufficient treatment that worries me most. Every time I drop something (which is numerous times every day) I am reminded that things just aren’t right & they clearly won’t improve with insufficient treatment. Haha I have been giving SI’ing ‘some thought’ ever since I was diagnosed last September! I even told the GP I was considering it as I was desperate to feel better but she told me she thought that would be very foolish as it would be going against the advice of the three experts that she had been consulting with at the hospital! I think the main issue I have is the fact that I still need to be able to see my GP & I struggle with the idea of going against her advice because of the knock on effect of dealing with her in the future! There are three GP’s who have so far refused me more frequent injections so there’s clearly a closed door there with the entire surgery & having more frequent injections! One of the nurses did listen to me & told me she understood there was a local Facebook group of people who self inject & encouraged me to do it but she asked me not to divulge that she had told me that! She said if it was her she would SI if she needed to! I would just prefer to have my GP onside & that she would know that I was doing it & support me even if she didn’t necessarily approve so I am wary of going against her advice for that reason… I’m finding it really difficult to make that decision!
Haha Wedgwood! You can’t dangle a carrot like that!
Thank you, best wishes to you too & thank you for your reply.
Yes, I really don’t want to do it without her knowing I am but I am certain she won’t be happy about it because it’s going against her advice & I don’t know where that will leave me.
I asked early on if the IF test could be repeated & she went to say no but then in an exasperated tone she said ok but then the lab returned it saying it had already been done & didn’t need to be repeated!
She just thinks I am grasping at straws & considers anti-depressants are what I need so I think we have reached a stalemate.
She doesn’t believe that I need more B12 & has stated that she is not prepared to authorise more frequent injections than eight weekly - except for the three done at four weekly intervals that the consultant has now suggested. But then she said to revert back to eight weekly so she will just quote that! I think I’m on a loser there unfortunately. Which means my only option would be to SI but I want her approval! Catch22!
I totally get this. I really wanted the approval of my doctor too. I was lucky that he did allow me to have the injections every eight weeks - but I felt they were not enough. I even wrote to him and explained all my symptoms and how I felt it was so important to increase my dose. The answer was no - but he was apologetic. He told me he had done some research and found that it could be dangerous. I have not told mim that i self inject- but like you, I’d like his approval. Either way, it will make little difference because it hasn’t been authorised by him - so unlikely to even go on my records. I haven’t looked back since starting self injecting- I have a friend and sister who do it too. But Brexit has made things a little more difficult and that worries me.
In which case I do not understand why they’re taking me off the Omeprazole which was keeping my symptoms under control. I feel awful today having been awake from the early hours with my stomach burning & severe reflux. It has eased slightly since taking the famotidine at 6.30 am but I don’t take the next one until 6.30 pm & although it gets better after I take it, it doesn’t then last for 12 hours so the same scenario keeps repeating itself. If using the famotidine would mean I’d be able to absorb B12 I could understand where they were heading perhaps but if it will also prevent absorption as the Omeprazole does then there’s no benefit & I’m suffering needlessly as a result! I will have to try to speak to the GP again. Unfortunately we are very short staffed at work this coming week so it will not prove to be easy. I just went on to see if I could do an e consult but I can only do it during working hours! I thought I’d be able to do it today for them to look at tomorrow but I can’t which seems like madness to me!
The only person that will really know why they have stopped the omeprazole is the doctor who stopped it. It may be that a pharmacist might be able to help with omeprazole v famotidine.
I don’t think you will get the gp to agree. I think wavylines is the only person who has managed to get their gp to agree to self injection daily. I’m not sure why there is such a discrepancy.
I don’t have a pa diagnosis either. Every time I get bloods done I request they don’t test b12 and they ignore me and then tell me it’s too high. Last time they persuaded me to stop because my levels were ‘too high’ and it has taken me 3 weeks and counting to get the feeling back in my fingers and toes. I never received treatment from my gp despite numerous symptoms and was forced to go to a clinic to get injections.
I also do sub cutaneous injections eod otherwise I lose the feeling in my fingers and toes. I’d rather have them on side but they won’t listen. I didn’t want to wait until I was in a worse state to prove them wrong.
The Netherlands b12 institute do not believe there is toxicity for b12. I would argue that if it did exist we still ought to have a choice. It seems the longer that treatment is delayed, the worse the symptoms, the longer the recovery, the higher the requirement for b12 and the lower the chance of complete recovery.
If they are not trialling the correct treatment of eod injections I cannot see how they can tell you that you cannot make additional improvements. Anxiety has never caused me to drop things. It has caused me to lose faith in my doctors.
I agree, she definitely won’t agree to prescribing me EOD injections but if I decide to buy them & give them a go I would prefer that she knew that I was doing it & be onside. I don’t imagine she will approve but I don’t want to be doing it ‘behind her back’ if you know what I mean.
I don’t understand why they dismiss all the symptoms we describe are happening & focus on the blood results despite the fact that testing after injections have been started is advised against. Where is the logic?!
Thing is I have improved from what I was like before I started the injections but I feel like there has to be scope for further improvement but as she won’t allow them more frequently the only way for me to prove that is to SI by buying them. Again, the thing that stops me is the desire to have her onside!
Yes, I feel like my symptoms have improved overall to a degree now & although I am better for a few weeks after having it & then decline a couple of weeks before it is due I don’t feel like I am declining further if that makes sense so from a long term point of view it’s not as though I’m getting no treatment so in theory I shouldn’t get any worse. My logic though wants to have more frequent injections in order to make as full a recovery from the symptoms as is possible & then find a maintenance does that keeps me stable. The response to that is that my levels are already high enough!
I couldn’t agree more & I have debated that with my GP but to no avail. Her last stance was that I needed to wait to see the neurologist & see what they advised. Frankly I feel like it was a waste of time as she really wasn’t interested in hearing me out & just wanted to have the ‘difficult conversation that she has to have with a lot of her patients about the role that anxiety plays in many of the symptoms that people experience’ !!! Yawn! Oh it’s not anxiety that causes me to drop things, it’s the numbness/tingling/pins & needles & a change in my ability to grip things properly along with random stabbing pains that cause that to happen. I have no idea if more frequent injections would help but I want to at least rule it out first rather than agreeing to take antidepressants before proving whether more B12 is the answer. I keep repeating that I want to treat the underlying cause which may well alleviate the symptoms rather than taking something to ‘treat’ the symptoms, like amitriptyline, which I took for a number of years a few years back & I’m certain that just delayed the diagnosis of B12D. Yes, it is very hard to trust a GP who you feel isn’t listening to you which I feel has happened for years with all the different different ones that I’ve seen. I keep hoping I will find one who won’t go down the anxiety/antidepressant route but so far I haven’t achieved that!
I know it is a pain, but I would write a letter to her explaining all the points you covered here. I woukd also copy in your GP and anyone else in the medical profession who is involved. It is then in black and white and they have to respond.
You are probably right. But as you say it is a pain… it takes so much time & as you can see, when I write, I am very long winded & struggle to be concise! I have written to her previously but I don’t think it was any benefit if I’m honest which puts me off doing it again. I’m also only managing to work atm & anything outside of work is falling by the wayside so it’s finding the energy/brain space to be able to concentrate to do it. I haven’t ruled it out but I will have to psych myself up to do it! Thank you 🙂
The MRI of your head and neck is to check for central nervous system damage which would indicate another cause of your symptoms such as multiple sclerosis. I had this done and it was reassuring when it came back normal. However, these days they always seem to warn you about finding other potential problems on the MRI because that could happen. My neurologist having suggested it then almost tried to talk me out of it. I spent weeks worrying about having it done but in the end decided to as I wanted to know if there was a problem with my central nervous system causing my pins and needles/burning feet. Have you had nerve conduction tests?
On the day though she just kept repeating that she couldn’t find anything wrong & wanted to do an MRI to prove that to me! She stated that she was 100% confident that it wouldn’t show up anything but that she felt that I needed to have that proven to me! She made me feel that I’m just making a fuss about nothing & it’s all in my head & I should be compliant & take an antidepressant & go away! I don’t feel like I need to have anything proven because I’m not saying I believe there is a problem with my brain! I’m simply saying I’d like the opportunity to find out if more frequent injections would further improve the symptoms that have already partly improved with the B12 treatment so far. But because my blood level is already high they won’t agree to it.Yes I had nerve conduction tests & he said they were ‘mostly’ normal. He thought I may have had carpal tunnel in one of my wrists but then changed his mind. He said what I was describing suggested it was the smaller nerve fibres that were causing the problems rather than the main nerves but that he could only test the main ones. The registrar neurologist didn’t stick the pin in anywhere that I am numb so of course everything looked normal!
Hi cupcake I just dropped by to say I had almost the same experience 7 years ago with a neurologist who made me feel so small and so stupid I broke down and cried after. It felt like he was getting a buzz out of humiliating me. I wish you well and hope you can get the help you need x
I cried while I was there! As soon as she said she was going to do a memory test I buckled! I got in a right state! Embarrassing! I still don’t understand how come she gave me clues to the answers but then said I had passed! 🤷🏻♀️ Doesn’t make any sense to me! Surely the idea of a test is that you have to remember & I couldn’t so… 🤷🏻♀️ I’m sorry you felt so bad… but you’ve survived to tell the tale so I’m sure I will too! Do you self inject? Thank you… it’s a work in progress… x
My levels are normal even though I have symptoms so my Dr said I don’t need them at all. I went to the Nero because I have M.E. I had and still have numbness, tingling, ringing in my ears, sudden sharp electrical shooting pains in my body also stroke like symptoms, words Can come out jumbled up - I tried to explain this to the nero that day about mixing up words and also not understanding what people were saying to me.. And he said this: I suggest you shop in English speaking shops! I was dumbfounded! so I do understand completely how you must have felt to be treated the way you was when you went. I was left trumertised That day, and sounds like you was as well. If you feel you don’t want/ need the mri then don’t have it love, why put yourself through all that for probably nothing. I am taking control of my own health now (as far as possible anyway). Seems with no face to face anymore we don’t really have much choice anyway. You sound too nice to be treated like this it’s not right is it x
I understand your frustration. The mri, nerve function tests tell you which type of nerves are damaged. The mri rules out central nervous system damage in your brain and spinal cord. The nerve conduction tests tell you about damage in your large diameter motor and sensory nerves. By process of elimination if the mri and nerve conduction tests are normal then it’s likely that you have damage to your small diameter nerves. This is the best of the three options. Unfortunately there are many causes of small fibre nerve damage, one of which is B12 deficiency. Have you also been tested for thyroid problems, diabetes? There are various autoimmune diseases which cause it but usually come with other major symptoms. I have small fibre nerve damage. This started after my flu vaccination . The first Gp I saw just said they rarely find the cause and I just have to live with it. I had to ask for b12/folate, thyroid, diabetes, autoimmune screen. My b12 was borderline and so I had b12 injections but when I saw (over the telephone!) the neurologist he was really dismissive of possible b12 problems. He thought my symptoms were caused by a mild case of Guillan barre syndrome caused either by my flu vaccination or a virus I wasn’t aware that I had had. Seven months on my symptoms wax and wane but are always there and I completely understand your frustration as I don’t feel I have really got anywhere despite having all the tests done. When I asked my Gp about the nice guidelines which said every other day injections for neurological symptoms she said they only ever did this in a hospital setting if you were so bad that you couldn’t walk. Did you have significantly low b12 levels at the start of your problems? And also just because your mri is normal doesn’t mean you don’t have anything wrong with you. It just means that you don’t have damage to your brain or spinal cord. Small fibre nerve damage doesn’t show up on an mri scan. It’s diagnosed by excluding central nervous system damage and large fibre nerve damage. It’s possible to have skin biopsies taken to prove it but my neurologist said this isn’t that accurate and by excluding the other types of damage I know this is what I presently have. What I find incredibly frustrating is that once the neurologist found I had small fibre nerve damage he effectively lost interest as I guess he sees patients with far worse conditions and I don’t feel doctors have any understanding of how unpleasant small fibre neuropathy is. Also I think it’s very hard to find the cause apart from if you are very b12 deficient but even then that’s not completely conclusive as people can
have very low b12 levels and no symptoms at all( my friend has this).
Yes, thyroid & diabetes both ruled out. I even managed to get the extra thyroid tests done that people on here advised (can’t remember what they were called now) & the neurologist repeated those again the other week & all normal. My B12 when first tested was 76ng/l & then it states <130 consistent with B12 deficiency. So yes, it was very low! Vit D was 21nmol/L <30 being consistent with deficiency. Then after B12 loading doses my ferritin & folate dropped; folate 3.3ug/L (3.80-25.00ug/L), ferritin 10ug/L (11.00 - 307.00ug/L) My ferritin had also dropped the previous two summers & in 2018 I was borderline needing a blood transfusion although she didn’t tell me that until after she had given me tablets & saw it start to rise! I believe the problems I had with my ferritin masked the fact that I was also B12 deficient but when I was reporting that I felt better once my ferritin was back in normal range I was still massively fatigued but she just said it would take time, possibly many months for me to feel the full benefit of the rising ferritin. The fact is my B12 was clearly very low for a long time before it was tested so that was part of the problem but it took until Aug 2020 before it was tested. I was totally unaware of what B12D was until I was diagnosed! I had been back to the GP over many years saying I thought I had Lymes disease & now I understand why because the symptoms are all interchangeable! Lymes was tested & was negative for antibodies. That is exactly what my GP said to me about EOD injections & that only a consultant could sanction that.
Part of my problem was that when I was first tested for B12D I wasn’t seen by my GP because it was all done over the telephone & I’d also had four surgeries for breast cancer over a period of six months & had been home alone so it had gone unnoticed that I had almost come to a standstill & was barely managing to function but that was all attributed to the surgeries & my body needing time to recover! There have just been too many factors that have masked the B12D & delayed the diagnosis (I believe for years!) but even with the diagnosis in August 2020 & such a low level & many neurological symptoms I’ve been beating my head against a brick wall ever since! It is beyond infuriating!
Any chance that you had nitrous oxide for any of those surgeries? Could have inactivated a good % of your B12 and as you were already low, that wouldn't have helped. Might need to check your active (holo) B12. Also bear in mind that neuropathy can be affected by poor blood sugar control long before it gets to diagnosable diabetes. I realised that I had had signs of hypoglycemia and insulin resistance for several years without knowing, and am much better now I've changed diet and am using a glucose monitor regularly. I have small fibre neuropathy and B12D and a family full of PA and B12D plus other autoimmune.
Quite a lot of this is similar to me. I decided to take matters in to my own hands and now self inject every two weeks. Many symptoms are improving. When I started my b12 injections the troubles I was having with my stomach improved hugely too - as did anxiety. I’m so cross with my doctor for telling me he couldn’t give more frequent injections because it would be frowned upon by the medical board. No option but to look after your own health. You’ve nothing to lose. Good luck. X
So from your b12 result you definitely were deficient in b12. I also take omeprazole and tbh had I realised the problems it causes with absorption of nutrients I would never have started it. I also have low vitD and ferritin and have had these for years. I googled famotidine and it says it reduces stomach acid so will prevent separation of b12 from meat in the same way omeprazole does. I have been trying to stop my omeprazole but am finding it impossible. I can go three or four days without one but then get huge amount of acid. Supposedly this overproduction stops eventually but I am not having much success. That’s good if your Gp will give you monthly injections. So much is unknown about b12 deficiency. My Gp tests my b12 levels between injections and I actually prefer this approach. I’ve only had one b12inj since my loading doses and surprisingly my level hadn’t gone that high which makes me feel that I was using a lot of b12 to heal my nerves. My Gp thinks that if the blood b12 level is high then your body has b12 available to its cells unless you have a problem with uptake in which case however much you inject it won’t make any difference. Many on this site will disagree with this but to me it makes sense. I just wish the medics would do some proper research into b12 deficiency and how often we need injections. If your deficiency is caused by omeprazole then daily b12 tablets may help as the b12 doesn’t have to be separated from meat in acidic conditions. I haven’t tried this yet as wanted to get back to normal first but I suspect this isn’t going to happen. If you have general absorption problems then tablets won’t help. Did you have your intrinsic factor antibodies measured? A negative test doesn’t mean you don’t have Pernicious Anaemia. Mine was negative but a family member has PA and I have another autoimmune condition. Either way it doesn’t really make much difference you need to take b12. Tablets won’t really work with PA but might with omeprazole causing absorption problems. Your folate does look low. Did your Gp suggest supplementing with folic acid?
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