I am still trying to get diagnosed or treated for B12 deficiency which I strongly suspect I have going by my symptoms. I am going to try again to get my GP to listen to me. I am just wondering if members have any experience of presenting a symptom list to GP's and then getting treated. I was thinking of using the NHS symptom list as I can tick most of the symptoms on there. I had already given them a copy of the PAS symptom list which didn't seem to make any difference. I am having neurological symptoms and this GP has refused to do an urgent referral to a neurologist. The referral was done in May but still no appointment does it usually take this long to even get an appointment.
I have a doctor's appointment on Tuesday so trying to prepare what to say could anyone help with the best symptom list please.
I will be very pleased with any replies. Thanks.
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I've looked at that one but my personal opinion is that it isn't very detailed so perhaps does not give doctors an idea of the breadth of symptoms B12 deficiency can produce.
Sorry to hear that the PAS symptoms list did not make much difference.
My current GPs did at least read PAS Checklist, I added extra symptoms that weren't on list. In general, I think PAS is fairly well-respected amongst medics so perhaps a different GP would have a different attitude.
The symptoms list from the B12 deficiency website is more comprehensive but I'm not sure how doctors in UK feel about this website.
I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which I know has info about B12 deficiency symptoms and is up to date with UK B12 guidelines.
"doctor's appointment on Tuesday so trying to prepare what to say"
I wondered if you had considered writing a letter to GP about your concerns about neuro symptoms? I have written letters in past and handed them into GP surgery prior to appt. or at appt for GP to read later.
Appts are short unless a double appt has been booked and sometimes there may not be enough time to say what you want to. Things said at appt can also be forgotten or not recorded.
Link about writing letters to GP about B12 deficiency.
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left
I think it's probably easier for PAS to help someone with a confirmed diagnosis of PA but they can probably point you to useful info about treatment of B12 deficiency with neuro symptoms and when PA can be diagnosed.
There are stories on Martyn Hooper's blog about how PAS has helped people get a diagnosis and correct treatment.
My understanding(I'm not medically trained) is that this flowchart indicates that in UK, a person who is symptomatic for b12 deficiency, with other possible causes of B12 deficiency besides PA excluded and who has responded to B12 injections can be diagnosed with PA or Antibody Negative PA.
I showed GP Dr Chandy's (B12d.org) protocol with notes on my relative's history and symptoms (the site now has an interactive list) as well as BMJ research document below. With persistence and support from a friend who'd already been diagnosed and treated, we managed to persuade surgery to treat my relative:
Personally, I think Tracy Witty's list on B12 def. is very comprehensive as is Sally Pacholok and Dr Stuart's of those at risk - below from the book, "Could it be B12? - An Epidemic of Misdiagnoses" :
"Vegetarians. Vegans and people eating macrobiotic diets
People aged sixty and over
People who have undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (gastric bypass)
People who regularly use proton pump inhibitors, H2 blockers, antacids, Metformin and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who abuse this drug recreationally
People with a history of eating disorders (anorexia or bulimia)
People with a history of alcoholism
People with a family history of pernicious anaemia
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassemia)
People with Crohn's disease, irritable Bowel syndrome, gluten enteropathy (coeliac disease) or any disease that causes malabsorption of nutrients
People with autoimmune disease (especially Thyroid disorders such as Hashimoto's thyroiditis and Graves Disease), type 1 diabetes, vitiligo, lupus, Addison's disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages
Infants born to and/or breast fed by women who are symptomatic or at risk for B12 deficiency."
Good luck Carmel
PS. They also give this good advice:
"Many of us are taught (or intuit) that it is not good form to play too active a role, never mind a contentious one. Questions to doctors should be polite and deferential.....if we feel irritated with the doctor's demeanour, we might save our gripes for relatives or friends...."
"Unfortunately, when it comes to B12 deficiency,....politeness can be fatal. In our own practices, we've seen dozens of people who were diagnosed as B12 deficient at some point in their lives but later allowed doctors to discontinue their treatment. Several paid a high price for this lack of assertiveness because they now have permanent neurological damage or dementia. Conversely, we know of patients with B12 deficiency who are alive and well today only because they, or an assertive family member insisted - sometimes in the face of significant resistance - on proper diagnosis and treatment."
The NHS it seems will not diagnose anyone unless their levels are at the ridiculously low levels they deem to be deficient. Although I'm sure you have done all the same research as me in to how your levels don't need to be that low to be deficient and how the blood test is a terrible form of diagnosis.
I told my doctor that if he didn't do it that I would just self inject, but that I'd rather do it under supervision. He only gave me one injection and I'm not going down the route of doing my own loading doses but you could try!
Thank you all so much for the great replies. It is lovely so have some support. It does seem very hard to get a diagnosis. I was saying to my husband I will have to try and be assertive in the appointment which is similar to what you posted Polaris.
Thank you also Sleepybunny I think I could try again with the PAS symptom list as I am seeing another GP in the practice as the one I had been seeing was quite dismissive when I saw him last. Thank you also for the links I will have a read as I tend to forget things I have read. I will also bring the other symptom one.
Polaris I have seen that risk factor list before and I have developed Vitilago, I have iron deficiency anaemia and I also fall into 2 of the other categories but these are things I haven't mentioned to the GP as I didn't want them to be put on my medical notes. Many years ago I used to drink quite a lot of alcohol which I'm sure would not have helped my B12 levels. Could this damage be permanent I just don't feel like telling the GP this unless it might make some sort of difference I'm just not sure. It just seems like they are already not taking my symptoms seriously and I wouldn't want to make things worse.
I have bought copies of Martyn Hooper's books and they are great. I also have the other B12 deficiency one.
I actually wouldn't mind self injecting but want to leave that until I have tried everything to get a diagnosis. I'm obviously just worried about the irreversible side of nerve damage. Could anyone tell me is what is happening with my hands is a symptom it is a bit hard to explain but I drop things and also it seems my grip is also not as good as it used to be.
Hopefully I will have good luck at the appointment.
Would it be possible for your husband to accompany you to your appointment ? My experience was that GP seemed more inclined to take things seriously with a witness present, especially someone who'd already been diagnosed by a doctor long retired! It also gave me more confidence to make a clear case, knowing I was being listened to at last..... Unfortunately, although we were able to get B12 injections for my relative, as so often happens, they were inadequate and later withdrawn....
Consequently, when my own symptoms worsened three months ago after two viruses, I was reluctant to face the stress of more battles (not to mention the increasing delays in getting specialist appointments) and decided to self inject every other day. The neurological symptoms included problems with tingling fingers as well as increasingly dropping things and my left little finger increasingly bent inward - in fact, the whole left hand seemed to have turned inwards 🤔 Would also be interested if anyone knows whether this is anything to do with nerves from the spinal cord?
I have Hashimoto's autoimmune thyroid disease and had a period of carpel tunnel syndrome in the right hand a few years ago but this disappeared with optimal Thyroid treatment. You probably already know from your research that autoimmune diseases such as Hashimoto's, vitiligo, psoriasis, lupus, etc. are often connected and run in families.
Ps. Alcholol certainly doesn't help - I thought I could drink a daily glass of wine but have had to give it up 🙁- it depletes B12 and has a bad effect on the gastric mucosa - the root of autoimmune disease.
Re. your hands - I would say it is probably a neurological symptom and/or unusual muscle weakness. I get this in the throes of migraine when my whole system goes weird, or if I need more B12, and then it goes again. Having said that, I doubt it is a symptom a doctor will take seriously but you could add it to the list to be on the safe side. I don't know how old you are but it's the sort of thing they often dismiss as age related. When you're younger it may be dismissed as stress related. (Yes, I have become cynical).
There's a lot of B12 info in the pinned posts on this forum. I found it helpful to read fbirder 's summary of mainly UK B12 documents. Link to summary in third pinned post.
Yes I have already told my husband he is coming with me as I did notice a difference in the way I was spoken to at my last appointment without him! I'm sorry about your relative so awful that we have to fight this way for treatment. I should have made the alcohol thing clearer I don't drink at all now and havn't for over 12 years but I used to drink a lot before that. I suppose the cause of the B12 deficiency doesn't matter as much as the treatment.
I would prefer to get treatment on the NHS but if that fails I will probably have to self inject too. I was also wondering if I might have a Thyroid problem and I have posted on the Thyroid forum too where I was advised to get tested I should probably do that too.
Yes I know about the family link my brother has Psoriasis and I have Vitiligo. Of course there could be more undiagnosed B12 problems in the family too. There is a strong family history of dementia too.
I hope you are feeling better with the self injecting.
Hi Frodo. Yes I am also very cynical with these GP's especially the ones I have seen since I moved here. I will maybe put down all my symptoms on a list. I'm really not holding out much hope for the appointment. I'm 45 so not sure whether they will think age related or stress!! I have had both mentioned to me in various appointments.
I just know it is more than that. I so glad this forum is here it really helps to talk to other people who understand.
Thanks again Sleepybunny your reply must have come up when I was typing. Could someone please tell me how to convert ng/l to pmol as my B12 result was confusing at 564ng/l and a lot of the articles talk about pmol would my result be less in pmol but also I realise this serum test is flawed anyway.
Would having an active B12 and MMA test help me do you think. I did have loading doses in April but the GP has since withdrawn the treatment because there was no proof that would satisfy him from my hospital notes. I will look at the links before my appointment on Tuesday.
No I have purposefully not being taking any B12 supplements now in case I don't get anywhere with the GP and then I was thinking of maybe doing private testing or seeing when my neurology appointment comes through and maybe trying to convince them to do more testing. Just with not working now I would prefer to try and get the tests on the NHS. The GP has already refused to do any more tests.
I'm just worried about how ill I'm going to get before anything is done. Thanks for your reply.
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