Hi I'm new here. My B12 serum was 499 when tested in October and my GP said this was normal. I have almost every symptom on the PAS checklist and have numbness and tingling in both feet which has now started in my hands.
I went to my GP last week to request an active B12 test and was amazed when she said she had never heard of any such test and again repeated that my level was normal and could not be the cause of my symptoms. I am thinking of writing to my GP and would like some advice on what would be the best information to print off to include with the letter.
I feel so ill and am very concerned that the numbness is spreading so quickly.
Hopefully someone can help, sorry about the long post.
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Nettyanne
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Flowchart outlines when PA and antibody Negative PA can be diagnosed in UK. Makes it clear that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start B12 treatment even if B12 is within normal range.
Hi Nettyanne, I really don't know to much about what is normal readings for B12 defeincy, however I've been on omeprozole stomach tablets for several years and I have peripheral neuropathy from leading a unhealthy lifestyle, but always had stomach problems, and having all the symptoms and pains, it was only through this forum that I found out that taking the stomach tablets can affect the absorption of B12, so I requested a blood test whilst being tested for diabetes and the nurse asked me why, so I informed her cause of my other symptoms, generally tired and not really functioning properly, and yep I got a phone call telling me that I needed the injections, so unfortunately I still have PN, and can't really say it's boosted me back up, but I suppose it'll not carry on affecting my nerve endings, it's worrying wondering how many more of the people are running on "empty" when really it should be common practice for anyone who is on the ant acid prescriptions to be called in for a regular blood test, sorry to hear about your difficulties and hopefully you will get some answers regarding the numbness,it's a pretty grim existence having these symptoms and trying to explain how you feel might fall on deaf ears, so just be prepared for a long journey, nerve pain is really difficult to treat and you might have to try various medicines, and even then there's no guarantee that you symptoms will ease up, but everyone is different and you might end up getting quite a decent result, good luck for the future, and I'm sure you'll get a few more responses, thanks.
Hi Cb, thanks for your reply and good wishes. As you say it is so difficult to try and explain how you feel when the Dr doesn't seem to understand and just keeps repeating the word "normal".
with a level of 499 - pmol/L or ng/L? - it is highly unlikely that you have a B12 absorption problem. That doesn't rule out B12 being a factor but the active B12 test isn't really going get you any further as it is also measuring the amounts in your blood. It might possibly show that the %-age of active B12 to other B12 is out from the normal 20% which could imply a problem somewhere else in the metabolism of B12.
It would probably be more useful to look at MMA/homocysteine tests which are proxy measures of what is going on in your cells - both will be high if your cells don't have enough B12 but they can also be raised by other factors so need to be done in a context that looks at these.
The symptoms of B12 deficiency overlap considerably with other conditions and it can be quite easy to get fixated on B12 and later discover that it was something else - eg thyroid or a number of other conditions. This is particularly true when it comes to peripheral neuropathy - so you might actually be best asking for a referral to a neurologist.
GPs are generalists so are not going to know everything. active B12 has other names as well, such as holo-T (though mainly used in the states). In quoting results it is useful to quote units and ranges as there are two different units of measure commonly used and each has a different range.
Hi Gambit thanks for your reply. As I just replied to Eaoz I cannot get any test for B12 in my health trust apart from the standard one so I am hoping to get the tests done privately if this is possible.
My Serum B12 result was 499 ng/L 160-1000.00 ng/L
>260ng/L-Vitamin B12 deficiency highly unlikely.
Hope this is more useful than my original post.
I think you are correct that I need to see a neurologist.
I'm afraid that this is a problem that a lot of people have on this site full stop the fact that doctors do not understand what an active B12 test is then they do the serum B12 test and it comes up with adequate answers and that ticks their boxes and it goes no further it is a travesty. I am in the same boat as you but I shame with Lee got diagnosed with multiple sclerosis which in my opinion is a total mis diagnosis but now I have to live with it. It sounds the problem you have is the same as myself and hundreds of other people you have an absorption issue in the ileum of the stomach. Doctors do not learn about vitamins in medical school. Doctors our ignorance and uneducated regarding vitamin B12 they use the serum B12 value as the be all and end all of B12 testing but having researched this myself this is unbelievable and it is making people very very sick and disabled and this goes through the whole range of lives from babies to the elderly. It is something that needs to change most of the countries in Europe especially do not have the issues that we have here in the UK and I think it is disgusting doctors have got to wake up do some additional reading and learn about what they are diagnosing people with and what they can do to help the ill it drives me nuts
Hi toph thanks for your reply. As you say it is so frustrating to try to make a Dr understand how ill you feel when all their tests come back "normal".
I was diagnosed in 1997 with ME/CFS but many of the symptoms are very similar to B12 deficiency.
Hi Eaoz thanks for your reply. My local health trust do not do the active B12 or the MMA tests, talk about a postcode lottery ! I am looking to get a postal kit to have the blood tests done privately - any suggestions welcomed.
My last blood tests in Sept 17
Serum TSH...3.2mu/L
Serum folate...9.5ug/L
HbA1c...34mmol/mol
I have not have my Vit D level checked since 2012 when it was 13.8ng/mL and since then I have taken 1 20,000 IU D3 Capsule twice a month.
The TSH in a healthy person is around 2. So when the TSH is 2.5 and over Hypothyroidism should be considered. Sadly Docs are fixated on the TSH as being a way of diagnosing - but it tells you so little as to how the Thyroid is functioning.
Firstly the TSH is from the Pituitary Gland and tells the Thyroid to produce the storage hormone T4 - so you need the FT4 test done and the results should be towards the top of the range. The T4 has to convert into the Active thyroid hormone T3 - a hormone needed in every cell of the body - so again the FT3 test needs a result towards the top of the range .
The most common cause of Hypothyroidism is Hashimotos - auto-immune thyroiditis so you need the anti-bodies test - TPO & Tg.
Sadly the NHS rarely test the FT3 and the Anti-body Tg. If you are able to have Private Testing there are companies that will send kits to your home and results by e-mail. Very well used by 100's of members on Thyroid UK here on HU. They have Special Offers on a Thursday
On the above website there is a page - Understanding Test Results.
1000's of people are missed with Thyroid issues due to the shocking state of affairs with regard to the correct testing and it is not until they join Thyroid UK they ask about anti-bodies and when tested they find they have Hashimotos - or that they were positive 20 years ago and were not told. So much one can do when you know the issue ....
Happy to help ...
You are taking a big dose of VitD - are you taking the co-factors Magnesium and VitK2-MK7 ?
I notice from past posts Nettyanne, that you've had surgery for leaky valves.
Approx. twenty years ago, after many consultations with GP, I was diagnosed with two leaky valves - (one since childhood and linked with migraine with aura), high blood pressure and high cholesterol. Desperate to find an answer to this plus fatigue and foggy brain, I researched leaky valve (PFO) on the internet and came across an article linking it with hypothyroidism. I asked for thyroid tests and was indeed found to be hypothyroid.......
A further scan two years ago revealed just one leaky valve. I can only speculate that adequate thyroid and B12 medication healed the second one!
Re. tests Sally Pacholok and professor David Smith recommend a serum level of above 500, plus the latest BMJ research document summary above states there is no reliable test.
Professor Emeritus of Pharmacology at Oxford University:
‘"B12 deficiency is more common after the age of 60 and, once levels fall below 500 pg/ml (picograms per millilitre — the normal range being 500 to 1,000), the brain starts to deteriorate at twice the usual rate, making memory loss six times more likely. "
When the GP says *normal* - they mean in range - but where you are in the range is so important - so as mentioned above - anything over 2.5 - then there should be further testing to rule out Hypothyroidism.
Great book on amazon - full of research papers - Thyroid and Heart Failure . You can look inside and read the Contents where you will see Liothyronine ( T3 ) mentioned many times. Also important to rule out Hashimotos with anti-body testing. I was diagnosed with Hashimotos in 2005 with what your GP would call normal results - but hey the anti-bodies were very high. In the UK I would not have a diagnosis as so often they do not test TPO AB's - I live in Crete. Also had an ultrasound of the thyroid to confirm diagnosis - rarely done in the UK.
Nettyanne good luck on your quest to solve your symptoms.
Here are my thoughts.
It should be relatively easy to discount the vitamin causes of peripheral neuropathy. Take a Vitamin B complex tablet like the Holland and Barrett Mega B-50. This should cover all your B vitamins. Just to be sure take 1mg (1000 mcg) of Methylcobalamin per day too. Try this for a week or two to see if that has any effects.
There are other causes of peripheral neuropathy and other problems that cause similar symptoms. High glucose levels due to untreated diabetes, thyroid problems, auto-immune disease, too much iron from Hemochromatosis...
Iron deficiency anaemia has many of the same symptoms.
Get your GP to look further into your symptoms. Don't assume it is B12, yet.
I agree with mightydrunken. Pretty much what I did originally and noticed an improvement in the cognitive symptoms. For the record my levels were between 300 and 400.
Another thought Was, had you been using any supplements prior to blood test that include B12? This only dawned on me after about my 3rd GP visit.
Hi thanks for your reply, I have posted my results for most of the problems you mention earlier today and they are in range. I will try the B complex and see if that helps.
I intend to go back to see a different GP.
Hi NettyAnne,
I had a similar issue in that my results were in range (300) but I had all the symptoms. I spoke with the retired doctor who set up the B12d charity (B12d.org) who mentioned that where results are 500 and below and the patient has neurological symptoms it is likely they are still deficient, as deficiency comes at different levels for some people and in some cases only 10% of what is taken on by the body can be used. I’ve done a lot of reading since and found that in most other countries (all that I have been able to get info about) use guidelines of a 500baseline for their ‘normal’ range, so anyone there or below with symptoms would be treated as standard.
Just thought I’d mention it as whilst 500 might sound mid range for an nhs doctor (range us 190-780) in other places it wouldn’t rule deficiency out so it’s worth keeping an open mind whilst you are investigating all potential causes...
I believe David Smith, Professor Emeritus, Oxford, expert in B12/dementia, knows what he's talking about.....
Just reading Martyn Hooper's latest book - the chapter on problems resulting from unclear test results. Taking this into account and the fact that thyroid problems and PA/B12 def. often coexist, (40% of thyroid patients also have B12def.), Sally Pacholok's quote re. B12 comes to mind:
"It's simple - if a person has symptoms and you haven't ruled it out, you haven't ruled it out".
I am so glad that you believe that David Smith, Professor Emeritus, Oxford, expert in B12/dementia, knows how what he's talking about...
Because this is his reply when I emailed him asking for the source of that quote...
"Dear Frank
Thank you for alerting me to the quote. I never said or wrote that - can you kindly give me the source?
I am travelling in Germany just now and will reply more fully in a few days.
Best regards,
David "
I'd gone looking for that quote on the interwebs, to see if I can find a where that included a reference. Because it really didn't sound like something and expert would say. Unfortunately I couldn't find anything much apart from HealthUnlocked and some other unreliable sources. So I decided to get it straight from the horses mouth.
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