I really could do with some more advice please. I recently had a neurology appointment as I am trying to investigate a diagnosis of B12 deficiency. I am actually very stressed now after this appointment and am thinking it was a mistake going there. At the appointment they were more interested in talking about depression and my anxiety levels. Apparently they only diagnose a b12 deficiency going by the serum b12 test and the IF test which I know is not the case. They suggested I have fibromyalgia which don't want a diagnosis of.
They have ordered a head MRI and now I'm wondering if I should cancel that appointment as if it doesn't show any brain damage could they use these results as further proof that these symptoms I'm having are all made up or something.
I have definite problems with my feet which are now starting to feel numb and more tingly with the colder weather.
Please could someone advise on what I should do about the MRI. Thank you all so much.
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Hi, in the case of fibromyalgia like symptoms, anxiety and depression I know that often times are simply vitamin D and magnesium deficiencies. In fact B12 , magnesium, and vitamin D all work in synergy. To get an accurate depiction of where your vitamin levels stand I would get a cellular test .. For instance I took a spectra cell test back in June t which tested all of my nutrient levels. This test, (despite serum levels showing normal levels) actually showed I had a functual b12 deficiency and borderline deficient magnesium and vitamin d. When it comes to Anxiety and depression in general I would definitely suspect a Vitamin D, Magnesium, B12 and even B5, deficiencies.
carmel, it is always possible that there is more than one thing going on and the MRI could show something that does point to B12 deficiency or another problem - so suggest that you stick with it.
I am sorry that you had such a bad experience. Saddened, but not surprised that the approach seems to be so based on test results - which is known to be far from the best way to actually diagnose B12 deficiency because of the limitations of the test - you could try writing to them and pointing them to the BCSH guidelines and ask them to revise the procedures to be in line with current guidance.
If the tinigling is affected by cold then that could point to a circulatory problem being involved (which wouldn't rule out B12 but also suggests that there genuinely could be other things going on).
On depression and anxiety - unfortunately these are labels that get bandied about that in my opinion really aren't useful - they are labels for a cluster of symptoms that could have a number of causes but are often treated as a diagnosis that means no further investigation is needed.
Dealing with medics is never easy at the best of times and gets much more difficult if you are tired and ill and potentially depressed and anxious. Hope that you feel better soon.
Thank you very much for your lovely kind words. I will stick with the MRI as you suggest and see what the results of that might be. You are right that is what I am finding out too now that these doctor's seem to stick very rigidly with the test results. It really shouldn't be this hard to get medical help. I was told at the appointment that the only way they diagnose B12 deficiency is using the b12 serum test and the IF test. I tried to point out about the MMA test and active B12 test but I was told I would be referred to a Psychiatrist. She seemed quite determined to argue any point I tried to make. Anyway I will try to move on now. It has left me quite upset really. I think I might have the flu or something at the moment which is not helping.
My feet are definitely affected by the temperature heat and cold. I do have a recently diagnosed Thyroid condition which was a big battle too and I had to get that done privately because the GP's weren't taking me seriously. Not sure if that would affect my feet.
I'm not sure where I would be without all your help and support. I'll try to enjoy the weekend now and hopefully I will feel better soon. Hope you have a lovely weekend too.
If you can afford to, you can always get a private referral to a haematologist, if you feel B12 could be the cause of the symptoms. I am still without diagnosis and within their arbitrary B12 range but the haematologist agreed the symptoms could be related to a B12 problem and advised starting a trial of B12. I've also managed to get referred back to him as an NHS patient. Prior to all this I was on the mental health roller coaster - anxiety symptoms it states on my record which is inaccurate from what I described to the GP. I was in such a state I gave the antidepressants a go that they prescribed but felt awful and weird while on them so sacked them off. Seen neuro, had MRIs and still no conclusive proof of what might be up with me. Essentially you're not alone and many suffer the same or similar NHS saga. Stick with it and see what the head MRI comes back with.
Whoa! Hold on - you asked about the MMA and Active B12 test and she told you (threatened) she would refer you to a PSYCHIATRIST? This is unacceptable. Personally I would complain in writing about that.
Be very careful. Take someone with you to appointments. Record what is said. Put everything in writing rather than just asking verbally, especially re. the medical links the other members have suggested. Keep a record of your symptoms.
Hi Carmel. I agree with all of Gambit62 's words, especially about the MRI scan.
Also - if looking for damage that can potentially be caused by B12 deficency, it would be usual to have and MRI of the spine too - to check for subacute degeneration of the spinal cord - cause by untreated or undertreated B12 deficency (but certainly not smuggling you have this - just that it would be good to rule it out as a matter of best practice).
If you do write to your neurologist, you could ask for an MRI of the spine to be included.
Or better still (quicker) ring the secretary for the neurologist you saw (the hospital switchboard will be able to identify the right person) and ask the secretary to speak to the neurologist and ask for this scan to be included...or ask him to ring you. And ask her to ring you back to confirm that this has been done.
And perhaps follow up with a letter to the neurologist confirming this request (together with the reason you want it i.e. you would like them to rule out subacute degeneration of the spinal cord secondary to B12 deficiency).
Since they seem so reluctant to consider the possibility of B12 deficency being the cause of your symptoms, I think you'll also have to include the BCSH Cobalamin Treatment Guidelines...and present the case that B12 deficiency cannot be diagnosed on serum B12 levels and IF test alone (and they seem to have completely discounted that there are many other causes for B12 deficiency, not just PA).
Here's a copy of the guidelines (in case you don't have them):
onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
Incidentally, they can't use and MRI scan to prove that you don't have B12 deficiency.
So sorry that you're having such a tough time with this...it's not you and it shouldn't be like this.
Let us know how you get on and post again if you need more help.
Hi Rheadster 72 for your reply. I'm really glad for you that you eventually found a haematologist to start you on B12 at least and hope it is working for you. Thank you for saying I am not alone too it can feel bad when these medical people don't seem to take you seriously. Anxiety is such a general term and there is usually an underlying reason I suppose. I'm not saying I don't believe in clinical depression though but sometimes like you are all saying it does seem to be you are not believed or listened to as much. Yes I'll stick with the MRI.
Hi Foggyme, It's lovely you have replied to my post and I remember your great help from before and I have used your advice in the GP appointments well tried to anyway. That is a brilliant idea about asking for the spine to be included especially since I have problems with my feet and sometimes my right hand too. I will do that on Monday and hopefully it will be in time for the MRI which is already booked. It does seem a good idea to write to this neurologist especially since I am keen to avoid a diagnosis of fibromylgia. I'm just always worried about annoying these people in case they don't do anything for me but maybe I shouldn't worry. I'm really glad to hear they can't rule a B12 deficiency out with the MRI it has set my mind at rest a bit. Thank you for providing the guideline link I will include them too. I'll have a read of them too do they mention the subacute degeneration of the spinal cord in there or would there be something else that would be good for me to put in the letter.
Thank you for saying it's not me too I'll have to try to be more assertive. I feel better already having a good plan of action.
I will let you all know how I get on and thank you all for your wonderful support. Have a lovely weekend.
Hi Carmel. Unfortunately, the BSH guidelines don't mention subacute degeneration of the spinal cord...though they do speak to the importance of receiving immediate treatment in the presence of neurological symptoms.
Here's a link to some information, though it doesn't say a lot...but perhaps enough to prove to your GP / neurologist that such a thing exists:
There's more information in the members' section library on the PAS website, or you could do an Internet search (but take care to much reputable sources if you intend to present this to your consultant).
And yes, do put this in your letter.
If I recall, you did have some B12 injections and these did have a positive impact on your symptoms? This is be called a successful therapeutic trial and in the presence of a good clinical response, like yours, then B12 therapy should be continued (as per the guidelines). Wonder if your GP and neurologist are aware of this - might be worth pointing out to them.
About worrying these people,in case they don't treat you - well, they're not treating you now! So I say be strong, stand up for yourself in a firm and dignified way - with evidence. And putting everything is writing - with evidence - is always better than presenting something verbally - and then being talked down to - at best! In writing with evidence goes on your records and this always makes doctors more attentive. And if you can take someone with you, even better (sadly, doctors are more attentive and less hostile if there is a witness present).
How I wish all doctors were like the on Pingo appear to have - that's how doctoring should be done.
Good luck.
P.s. Only spotted your reply by accident. If you want to mention anyone in a reply (especially if you'd like a response from them) press the @ character on the keyboard and then start typing the user name of the person concerned. Their username should pop up in a little box at the bottom of the screen - click on that and the persons name will appear in blue on the reply box. The person will the receive a notification and know to respond to you. (It's a bit temperamental so,sometimes you have to try a couple of times before the right user name pops up in the menu 😖🙄).
I'm also wondering seeing as though the GP's etc seem keen to diagnose a b12 deficiency going by the serum B12 test is it worth looking through my GP records to see how low my B12 was in 2012 and I also have the report from the hospital records which states Anaemia not iron deficient. Just wondering if that could be worth doing or should I just save the money that would cost and concentrate on potentially paying for a private test myself. Any advice appreciated. Thank you.
Any medical records from your previous GP would have followed you to your new surgery, so previous results should be recorded there. You are within your rights to ask your current GP for a copy of your GP held medical records (some may make a small administrative charge for this).
However, finding an old result that demonstrated a previous deficency or low B12 may not help you, since by the sound of your GP, they may simply respond by saying that your serum B12 levels are okay now - daft as that is!
I remember your having a report from your hospital records stating that you have a non-iron deficency anaemia - but that these did not give any more information so didn't provide much clarity. If it was only one report from your medical records that you obtained, then it might be worth applying for a full copy of all,your hospital,medical records, including all blood test and investigation reports (you will have to state that when you apply). Whether this would give any more useful,information is debatable as it depends on how good the original record keeping was, and whether there is anything significantly useful (like, for instance, a diagnosis of PA - or at least macrocytic anaemia - or definite evidence of B12 deficiency with a definable cause). Again, you may be left in the position whereby your current GP states that the results are to old now to be meaningful to the present case. Though you'd think that any GP worth their salt would take medical history into consideration 🙄.
About private blood tests...tests for serum B12, active B12, MMA or homocysteine (not sure what tests you mean) can all be skewed once you've received injections or supplements of B12...for three months and possibly up to six months. So,if,you've had supplements of any sort within this timeframe, then test results may be skewed and return results which your GP will view as 'normal'.
The real issue here is that there is no gold standard test for either PA or B12 deficency. Your doctors should be looking at your clinical symptoms, not just the test results. And all the guidelines state that if neurolgical,symptoms are present (and they are in your case), then B12 injections should commence immediately...even if serum B12 levels are within the 'normal' reference range (and yours will be if you've had injections).
Sorry I can't say anything that will help to progress this for you...the problem is that your doctors do not appear to understand B12 deficency, or how to treat it....especially in the presence of 'normal' B12 levels.
The best I can advise is that you put in a treatment appeal to both your GP and neurologist, and submit evidence to demonstrate that serum B12 markers should not be used as the sole means of assessing the presence of B12 deficency: the importance of treating neurological symptoms immediately: the fact that untreated or undertreated B12 deficency can cause subacute degeneration of the spinal cord: your concerns that you may be at risk of developing this etc. If you proved the evidence, they can't argue against that.
You could also ask them to confirm, in writing, that you are NOT at risk of developing SADSP.
Here's a link to the NEQAS B12 Treatment Alert - this advises doctors that if neurolgical symptoms are present, then B12 injections should commence immediately - even if serum B12 levels a normal. It also highlights the risk in relation to the development of SADSC.
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
And a thought - I see that you had to rely on a private doctor to diagnose thyroid issues because your GP wouldn't help you.
Hmm...is there another GP you can see. Or perhaps change surgeries although? This one doesn't seem to be doing much to help you. To put it mildly.
On the thyroid issue - hope this is now being treated - there are many cross-over symtpoms between B12 defiency and hypothyroidism, so there's always a possibility that your symptoms are due - or partially due - to thyroid issues (though of course it's possible to have both at the same time - many people do).
Anyway, best of luck...get writing and line up someone to go with you to your appointments.
👍
P.s. Think I've already left you all the links you'll need to find evidence to go in any letters you may write 😉
Perhaps when you next see neurologist ask if Romberg test and tests for proprioception problems have been carried out.
Has neurologist carried out any tests on you with your eyes closed eg walking heel to toe with eyes closed? People who are b12 deficient can have proprioception problems eg they lose awareness of where their body is in space.
I think it's useful to know what has been written in past in medical records. You can ask for factual inaccuracies to be corrected. You cannot ask for medical opinion to be changed but you can ask for a note giving your side of things to be inserted into your records.
Well Iv'e just tried to do the Romberg test now in my living room and I kept falling to the side. I regularly feel dizzy and lightheaded when just walking during the day. They didn't ask me to do that test. They did some test with pin pricks and vibrations which I could feel. They asked me to do one with following an object with my eyes which made me feel dizzy. There was another test I couldn't do but don't know the name of it. The doctor made a shape with their hand and asked me to copy it with mine. I could do it with the right hand but couldn't figure out how to do it with my left hand. Not sure if that means anything.
I will have a read of those links thank you. It's always useful to have lots of information. Thank you for all your help.
I should have added "Don't do these tests at home", only under the supervision of someone who is medically qualified.
Perhaps next time you see a neurologist you can ask them to check you for proprioception problems.
"my feet which are now starting to feel numb and more tingly "
Have you tried to get a referral to a podiatrist?
They are trained to be aware of neuropathic symptoms in feet (due in part to increase in diabetes in UK). Some podiatrists are allowed to prescribe B12 if they have the appropriate training.
Cn13 I have always found it very useful to keep a diary of symptoms. My Dr saw it as evidence based science and asked for a copy for my file. I also agree that taking someone else will be very effective in pulling up any medical arrogance. Psycharist, indeed!
Hi Foggyme Sleepybunny and BethattheBeach thank you for your replies. Thanks foggyme for showing me how to do the highlighting on names very useful. Yes I definitely could do with a better GP but this is the second practice I'm with in this town I only moved here just over a year ago. The third GP I'm seeing now seems to listen to me a bit more so hopefully she will be better. Iv'e actually just re-read my referral letter to the neurology and it says in the letter that there was no improvement in my symptoms after my loading injections which is not true and I told the GP there was some improvement. They are also stating my blood picture at the moment does not confirm the diagnosis although my red blood cell count continues to be low. It's all so confusing.
I am composing the letter to the neurologist or trying too hoping to get it posted off tomorrow after I try to change the MRI. I have the full hospital records from years ago I have one report which says I have anaemia not iron deficient then other pages with the full blood count and liver function tests. The pages I wanted are the only thing that seem to be missing from the records which is strange so there is no record of ferritin or B12 but it must have been done. But the GP had already argued with me that this wouldn't matter now.
Thank you for all the evidence you have provided to help me with the letter writing. It would be good if all this is down to my Thyroid and nothing to do with low B12.
Yes I should have done a symptom diary really it would have been helpful. I should start to do one really. I know they obviously think I'm making the whole thing up but hopefully it will all get sorted soon. Thanks sleepybunny yes might be useful to see a podiatrist but not sure how another referral would go down with the GP practice. I did wonder about diabetes myself the GP only ever did a blood glucose test for that which was in the middle of the range. There is no-one in my immediate family with diabetes although some of us do have other auto-immune conditions so not sure about that really.
I have another GP appointment soon so maybe I will prepare a letter to them in the meantime. I will ask about the proprioception problems too.
Thank you all very much for your help and support. xxx
Hi again Carmel. We migh have discussed this before, but I can't remember so...is you GP aware that you have autoimmune disease in the family? This might be significant, since autoimmune condiditions do tend to run in families so there's a possibility that an underlying autoimmune condition may be responsible for some of your symptoms. It would also mean a greater likelihood of PA, even (as you know) with a negative IFA result.
Don't have time for a length response right now but here's a link to a recent post where I left a reply about the possibility of underlying autoimmune conditions and tests that a GP may like to conduct (certainly where there's a family history). Might be something here that you find useful:
I know it is hard to begin the diary, in fact I started on the backs of envelopes or any bit of paper that was closest! Before your treatment is correct, everything seems such an effort, so a diary would be the last thing on your mind. I was not coping with house work and cooking dinner seemed the biggest impost! Eventually, I summarised all my scraps of notes and presented it to the Dr.
When you are ready it is still not too late to start your scribbles. Even now I pop some things onto my computer calendar just in case it is important. By all means, ask any questions when you get your letter written.
Yes I am finding the same as you cooking is one of the most difficult things as it involves standing a lot. I find even a kettle a bit too heavy for me. I used to enjoy gardening but can barely do that now. Well anyway like you say I need to think positively and be confident it will get sorted.
I did sort of try to do a diary but I think what I found hard was which symptoms to focus on writing down as I seem to have so many. I was trying to concentrate more on which ones could be neurological and then getting confused with it. I do have an appointment with the GP next week so hope to get organised with something before that. At the moment I'm waiting to hear about the MRI that Foggyme suggested for me to change then hopefully I will get the letter written to the neurologist.
Thank you very much for your support and help everyone. Hope you have a good day today Beth.
Cn13 I'm sorry to have taken so long to reply! I actually dropped a frying pan full of cooked food and people came running from everywhere! I was visiting my daughter and I was embarrased and confused as to how it happened. it has taken 3 years of treatment and 9 months of jabs every 2 - 3 days for my interest in cooking to return. Also, the strength to get into the garden is slowly returning. Yipee!
Don't worry about what kind of symptom it is just scribble any thing that hurts or seems odd/wrong and in time it will all become clear. I do recommend a date on the page, though.
The confusion of a B12 def is alarming . My mother died after a long dementia type illness and I'm pretty sure is was caused by PA which I have been diagnosed with. So, don't beat yourself up about your confusion, you have done very well to get this far.
Thank you for replying. So sorry to hear about your accident I hope you were not badly hurt. The confusion is awful I know what you mean I can barely have conversations with people these days. So glad you can get out in the garden that is one of my favourite things to do. I have a gp appointment on monday so hope to get something written before then. So sorry to hear about your mother too. My grandmother died of Alzheimers, my Mum had a stroke and there is a lot of dementia in other relatives on my mother's side. Doubt the GP practice I'm with will think this is relevant. It really seems to me they think I'm making things up.
I hope you are feeling better now and thanks for the good luck I do need it at the moment. x
Cn13 I hope you can take someone with you to your appointments. It is much more helpful than you could imagine.
One thing I think is worth mentioning to you is that I've seen a Functional GP (I'm in Australia). You may know them as Integrative GP's. Mine has me on SAMe 400 and it has helped incredibly with the social isolation (no other way to explain it but I think you know what I mean). Also a good B Complex and a little B6. These all have built up my confidence again.
I loive my garden, too and spend every spare moment there. Much better than throwing those frying pans around! Or sweeping and mopping!
Good luck. You are well on the way to good health.
I am hoping the new Gp at the same practice will be a bit less hostile to me. I'll probably update on Monday after the appointment which I'm already dreading.
I'll be trying to stay positive in the meantime. Yes it's good to get outside. Thank you
Thanks so much for your reply. I will be reading that link shortly. I think I really need to put things in writing to the GP practice because I have only told them verbally about things and they don't seem to be taking the family history link seriously. I will keep you all updated on how I get on and thank you all so much for such useful information.
Hi Foggyme . Thank you for those words of encouragement. I think I'm just so stressed with it all I am doubting myself now too. So just want to ask can a B12 deficiency sometimes be diagnosed just going by clinical symptoms if the blood work doesn't support the diagnoses. I did have an improvement in my symptoms following the loading injections too but the GP only has my word for that so I'm just now sure how I can convince them. The private tests I was thinking of doing would be the active B12 test and MMA test but now I'm reading that MMA could be elevated in Thyroid disease too so that might not be too helpful then.
I know this is such a shame just would be do great to have a GP who knew anything about B12 deficiency. I have the GP appointment next Monday so hopefully I will get the letter done for that and see if it helps.
Hi Carmel. Yes, B12 deficiency can (and should) be diagnosed by looking at the clinical picture (the symptoms) and not just the blood work. Though not many GP's seem to be aware of this.
Briefly...just to re-cap for you / your letter:
A) 40%-60% of those with PA have a negative IF test. The IF test cannot be used to positively rule out PA (one of the causes of B12 deficiency - but not the only cause).
B) macrocytic (large red blood cell) anaemia is NOT present in 30% of those with B12 deficency. So,it's not a defining characteristic.
C) the presence of iron deficency anaemia makes blood cells smaller. This can 'hide' or 'obscure' the presence of large (macrocytic) red blood cells.
D) the serum B12 is not a reliable marker of B12 deficency, which can be present even if serum B12 blood test is within the 'normal' reference range.
E) B12 deficency should be diagnosed through an by the careful evaluation of the symptoms - the full clinical picture. Not just via blood test results.
F) where neurological symtpoms are present, B12 injections should begin immediately - even if the serum B12 level is within normal reference range
G) a successful therapeutic trial of B12 injections is indicative of B12 deficency - and should be continued (unless there is a reversible cause of deficiency (i.e. certain medications that impede B12 absorption, infection with Heliobactor pylori etc.)
H) once B12 injections have commenced, serum B12 levels will (should) be high. The guidelines state that once treatment has commenced, testing B12 levels is no longer required (unless re-testing to check for low levels). High levels post-injection should not be used as a reason to stop injections. It does not mean that the B12 deficency no longer exists.
The links I left before contain evidence to support all the above points. If you can, find evidence for each of the points above, highlight the relevant section, and put that evidence in with your letter. Know it sounds a lot work, but just go through your letter one point at a time...and eat the elephant in chunks 😉
So...what all this means is that symptoms...and symptom relief via the successful therapeutic trial you had, are the things your GP should be assessing and paying attention to.
Not your post-injection B12 levels.
Active B12 and MMA tests - these will be skewed for three (and possibly up to six months) following your last B12 injection (or any B12 supplements).
Again, your GP should be looking at symptoms, your previous diagnosis of B12 deficiency (even if the records are missing), your family history of autoimmune disease (which makes PA more likely, even with a negative IF results)...and the fact that the B12 injections made you better!
Thanks so much again for all your very useful information posted for me. That will certainly make writing the letter so much easier. The only part I would be uncertain of is where would I find information about the iron deficiency anaemia obscuring the presence of macrocytic anaemia so sorry if you have already provided this.
I am also wondering if I should do a less detailed letter to the neurologist still with the guidelines and get that posted off and then put all the things you suggest above in the letter to the GP as extra information.
She has already refused to include my spine in the MRI but I'm still going to put the reasons why I wanted it in the letter. Also another stupid question who should I address the letter to the GP to it's just I don't want to see the original doctor who referred me as he has been horrible to me. I'm seeing a third gp at the practice who seems nice so far but I have had only one appointment with her so far but not about B12.
Sorry about all the questions I just can't think these days. I've nearly finished the letter to the neurologist so thanks so much for the helpful ideas above.
Hopefully it will all be sorted soon. Hope your day is going well. Thanks
Hi Carmel. Bit short of time so will have to be brief...
Yes...shorter letter to the neurologist...think,you were just looking for them to add MRI of spine...so focus on subacute de generation of the spinal cord secondary to B12 deficency.
Address the letter to the 'nice' GP who you would like to be treated by.
However, as you haven't seen her about B12 deficency before, perhaps a good idea to discuss it with her first - give her a chance to get it right. Good idea to go with a list of what you want to say about why you are requesting treatment.
If this doesn't work, you could then send the 'treatment appeal' letter and evidence to her so that she can read it for next time (make the next appointment before you send the letter so you can tell her when your appointment is - say you are writing first so that you can make best use of the time available during the appointment...and that you hope she is able to read your letter and supporting evidence, before then.
Also a good idea to say that you are concerned that if,you do not receive treatment according to the guidelines, you are concerned that you may develop subacute degeneration of the spinal cord.
Iron deficiency anameia 'masking' macrocytic anameia - sorry, don't have time to locate the reference right now...but just mention it...your GP should know.
Thanks so much for your reply. Yes that makes a lot of sense to do things as you have suggested. I will sent off letter to neurologist today. She has actually already refused to add the spine to my MRI but I'll still put it in the letter. Maybe I'll even get somewhere with this new GP and I'll get all my information together thanks to you.
Feeling better about it already. Thanks so much. I'll keep you updated.
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