Hello! So have you actually been given a diagnosis of anything yet? What blood tests have you had? Do you have results that show you have a B12 / B9 / iron deficiencies? Do you have a formal PA diagnosis already? Did you see the neurologist privately or on the nhs? If you are able to provide more information, that may help
To be honest, in my experience, I don’t think there is a simple answer to this. I am sure others will be along soon to offer advice - but the usefulness of the different consultants / specialties very much depends on their level of knowledge of B12 deficiency. One would imagine this would be a given (especially in neurology / haematology), but so often, it is not, unfortunately.
If your neurologist has recommended that various tests are needed, they should be able to signpost you to whether your GP can arrange them, or whether a referral is needed. And they can write to your GP to ask that they make the referral.
Hello Dilly-Blue. Very good of you to contact me. Thanks. I am pretty certain I had the standard b12 and iron tests and they were okay. But that was 18 months ago, when this all started and I bounce into my GP in a flap. It was NHS neurophysiologist who found the nerve damage. It was only yesterday I had the nerve tests. I ha e been feeling half dead for over 18 months and the burning and tingling is also numbness in my feet now. So v worried GP only does standard tests and I have to go private to get sorted before more damage happens.
Are you seeing a neurologist? There could be other reasons (other than B12 deficiency) for nerve problems, so the neurologist needs to advise on what further tests are needed (and do them!). It is important to find out your actual blood test results (numbers, and reference ranges) - I think here in the UK they use varying ranges (for what is ‘normal’), but it is quite possible to have a ‘normal’ serum B12 level, and still have a deficiency. Also, in other countries the threshold for b12 deficiency is much higher than in the UK.
Dilly-Blue, sending you my thanks again. There is so much it seems many of us "sufferers" and also our GPs need to take into account with B12! Kindest regards from me to you.
Apologies for any abruptness but busy with other things.
"Am I right to think that if I do have a B12 / B9 / Iron deficiency problem....via PA..
Then...a GP can handle the easy stuff that is readily diagnosed..?"
Many forum members have found that B12 deficiency is not always well understood by health professionals. Worth doing some B12 homework in case you get a GP/specialist who hasn't done theirs.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
Try to find out what's in the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I was quite overcome when I read your last. I have been at odds with my GP for a while with me saying I am not imagining my symptoms, and him recommending health anxiety sessions. Knowing others have faced this type of thing as well, and are turning out to help others. It's lovely and uplifting. Thanks to all the Better Health warriors in here who look to help out. Now, get back to that cleaning Sleepybunny! 😃🫶
I collected lots of diagnoses, most of which I think were a load of rubbish eg hypochondria, psychosomatic symptoms, FND (Functional Neurological Disorder), MUPS (Medically Unexplained Symptoms), ME/CFS etc....
I was diagnosed with depression which I agreed with but I so wanted to shout at them that it's not unusual to get depressed when doctors don't listen to you. I kept trying to tell them it was reactive depression eg I was depressed because the symptoms prevented me from living the type of life I wanted to. I certainly didn't want to lie on the sofa all day....I wanted to get out, go for long walks, get a job, be a proper wife and mother etc.
The doctors kept saying the depression was causing my physical symptoms.
I kept saying that I thought there was one underlying condition causing the majority of symptoms and I asked most of the specialists I saw including neurologists, rheumatologists, endocrinologists if it was B12 deficiency but only one out of the many thought B12 deficiency was a possibility and didn't diagnose me as serum b12 result was normal range.
I had more than 50 typical symptoms of B12 deficiency.....
If you ever need support or have difficult experiences with health professionals, there will always be people here who understand.
As well as reading the thread I started about Patient Safety (see link in my reply above), you may be interested in this link from Anxiety UK charity about health professionals "gaslighting" patients.
Well the only reason my pernicious anemia was caught was by mistake with a blood test for something else, I ended up getting a phone call at work and had no idea but my point is its probably aimed more towards the blood, nerve damage can happen if long term so treatment and diagnosis is essential quickly and has to be checked by the doc probably not a neurologist anyway that's my opinion, good luck it's very treatable.
it was a consultant physician/cardiologist that confirmed my b12 pernicious anaemia. Because I still had symptoms 4months on , my GP referred my to a neurologist, the neurologist discovered other autoimmune disorders and spinal degeneration. He referred me to a neurosurgeon and asked the GP refer me to a haematologist.
the neurologist did loads of tests the GP couldn’t and knew what to look into.
People need to get a test done at the doctors by order , they don't always check your b12 or whether you have pernicious anemia, I have no faith in doctors, I now have other misdiagnosed problems because they thought I was too young to get gout so now 15 years later I'm crippled with arthritis as the gout has went into my bones doctors said, the same thing with getting a test done for low b12 or pernicious anemia, go for it and ask as your entitled unless you want a lot of nervous problems and other problems in later life remember pernicious means fatal, does that sound like something you want? this is just a shout out to everyone, keep well and merry xmas .x
I was treated all my life by tackling symptoms rather than finding out why the symptoms kept reoccurring. I had many so called ‘vitamin injections’ ever so often with intervals of approx 10 years. I received treatment for my headaches/ migraines with an array of heavy medication which made them worse every time so then the heavy painkillers became a natural progression until I ended up in hospital and the neurologist after MRI/ CT, Nerve conduction test/ EMG( I had lost all feelings in my lower legs and feet by then) total blood count including vitamins and minerals, diagnosed me as B12 deficient which I must have had all my life! Asked me if no one told me this before???? I was also deficient in the other vitamin B’s, vitamin D , magnesium and iron deficient . So after month of every other day Hydroxocobalamin injections I got my life back. The migraines went first, slowly over the month the feelings in my lower legs came back, tiredness improved, I was able to read and comprehend again and my anger, frustration and dispair left me. So yes , I would recommend a neurologist but even then you must be lucky to get one like I had, young and determined to fix me. (She trained in Sweden , where vitamin deficiencies are more commonly recognised) . And before you ask me, she, my neurologist is no longer working in the NHS, she left England as so many foreign doctors do after their contract finishes.
Hi can I ask you if the neurologist only caught your b12 deficiency because of a blood test as you said you had you had tests done before that which never revealed anything so I'm wondering apart from a blood test what else the neurologist did that you would suggest speaking with one? Many thanks. 😀
It appeared in a medical journal ( "Mayo Clinic Proceedings"), and someone new to the topic will not understand everything in the article. But as a person continues to read about B12 deficiency, more and more of the article will probably make sense.
Perhaps the best initial use of the article is as a printed handout provided to physicians.
I have pulled out a few quotes that might be pertinent to you. Words in [brackets] have been added by me.
1. many generations of doctors have been educated with the [erroneous] view that vitamin B12 deficiency exclusively presents itself with this type of anemia. [ie, blood symptoms.]
2. Additional cases have been reported in which neurologic abnormalities were the main presenting symptom, with subacute combined degeneration of the spinal cord as one of the most feared manifestations, often leading to permanent disability.
3. In clinical practice, many cases of vitamin B12 deficiency are overlooked or sometimes even misdiagnosed.
4. normal levels of serum B12 and MMA do not exclude symptomatic [eg, neural damage] B12 deficiency.
5. Not all cases were easy to recognize or diagnose. The most prevalent symptoms of vitamin B12 deficiency are neurologic, such as paresthesia in hands and feet, muscle cramps, dizziness, cognitive disturbances, ataxia, and erectile dysfunction, as well as fatigue, psychiatric symptoms like depression, and macrocytic anemia.
6. In case of doubt, when results of biomarker measurements are equivocal, a trial with parenteral hydroxocobalamin injections may be considered, as was done in patients B and D. Because symptom improvement in long-standing (subclinical) vitamin B12 deficiency may take some time, we usually advise a treatment regimen of twice weekly hydroxocobalamin injections for 3 months, after which a thorough reevaluation is performed with systematic evaluation of symptom score as demonstrated in patient B (Table 2). [In other words, the doctor should not delay while waiting for proof, that might not exist, of B12 deficiency. Diagnosis should be made by giving B12 injections at least twice a week for three months, then looking for improvement in symptoms, which confirm diagnosis.]
7. [Evidence for treatment with oral B12 is weak, and treatment should be injections of Cobalamin (B12).]
WiscGuy, hi and thank you. That's really interesting in its " don't delay ' outlook and useful to know in terms of how more informed outlooks is out there. Really appreciate it. Most kind. 🌻🫶
I see a neurologist for my B12 deficiency/PA as my original complaint was neuropathy. I saw a hematologist at the same time but he did nothing for me but suggest I go back to the neurologist. The neurologist has been great and approves and prescribes my B12 injection for every 3-4 days. I was also having low ferritin issues and saw a second hematologist for the iron. The hematologist also keeps my PA and B12 injections on her radar but leaves that treatment to my neurologist. She primarily works with me concerning my ferritin/iron issues.
Hey there, if your GP has experience, the GP could recommend the correct tests and see whats going on. However as many said, not many GPs know about PA. I was initially diagnosed by a hematologist following a hospitalization , and later for some reason they lost my record and thanks to many GPs telling me i might not need treatment anymore, i stopped. I suspected something was up and wanted to see a specialist again and they redirected me to gastroenterology for some reason. And this gastro guy said my PA diagnosis could be a false positive and its fine. I did get my intrinsic factor positive and had low B12 and everything back when assessed by haematologist so its all confusing right now. My gut goes with hematologist or oncology to know what's going on.
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