B12 level 156 - GP won't treat

The meds tour on do deplete your B12 and other nutrients. You should be taking B12 supplements. I'd look for another GP if yours won't help you. You shouldn't suffer that long.

I have written a reply but this is "waiting to be moderated"

I also was given the injections and then had them stopped.  When I started to fall low again I pointed out to my Doctor that in other European countries and Japan they start treatment when levels fall below 450.  He agreed to start injections and I have been having them ever since.  I did the same thing for my elderly Father with his Doctor with the same result.

Good luck.

Mmc1972  This is the reply I posted last night but which is still awaiting "moderation"  The only difference is that I have removed the credit for the authorship of the text in italics

I'm not medically qualified but with your neurological symptoms, the fact that you are on Metformin and Omeprazole, you have a limited diet, reflux, IBS and that your B12 level has previously fallen so low that you had to have five injections suggests that you have an absorption problem and you will probably need to have them for the rest of your life.

The intrinsic factor test is known to be at best only 50% accurate.

Please don't self supplement until after you hopefully see your "good every time I've seen her" doctor at the end of the month.  Make a list of all your symptoms and if possible take someone with you who has witnessed them.  This way no matter which doctor you see they won't be able to shrug you off by saying "you are six points above the lower limit" on the serum B12 test.

On page 11 in the book "Could it be B12? – an epidemic of misdiagnoses”, under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml).  We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml.

Please also ask for your Folate level to be checked as this is essential to process the B12.

I wish you well 

Hi all, Just wondering whether you think the content of what I am going to put in a letter to my GP is ok, I do not want to rant and rave at her as this is not the Doctor that refused to treat on my level of 156.  But this Doctor is the one I often see and has missed previous opportunities to investigate my low B12 levels so wish to get this across, she knows I'm very quiet and subdued so will know something is copied and pasted from a book or website if I come at her with demands etc, so I have attempted this in my own personality.  This is the content of what I have come with for a letter which I'd like to post in the next few days:

I am writing to you querying my recent blood results.  I enquired at reception and was told a Doctor would phone me regarding the results.  A doctor whom I did not recognise phoned me later that day and has told me no further action is required regarding my results but my B12 would need retesting in January 2017 but the level is fine at the moment. 

I have some concerns regarding my B12 result; I did ask the specific result and I think I understood the result was: 156.  As I have had B12 deficiency in the last year I feel that this result should be treated or investigated especially as my reason for requesting the test was due to symptoms I was experiencing. 

Please see my history regarding B12 below, as I now longer have access to my results online, I have to estimate some dates/results.

History

Since October 2014 – Buttock Pain (Piriformis) followed by nerve pain a few months later and back pain all of which are ongoing and causing issues currently for which I have just been prescribed Amitriptyline and Celebrex for a month trial.

May 2015?  - Appointment with Dr re: difficulty swallowing – Dr requests blood tests following this appointment.

June 2015 – Blood test results show B12 deficiency (Level ?112 ) Intrinsic Factor Normal, no investigation into why deficient (Note. I was taking 5mg Folic Acid daily at the time of the blood test– stopped taking this a few months later when my husband & I decided to stop TTC following 10 years of unexplained infertility)

June 2015 – B12 Loading Injections – following injections I feel more energy and was able to stay awake past 10pm at night, bleeding gums stopped, had a couple of months where nerve pain in foot wasn’t as bad as it had been but Piriformis muscle still playing up whilst sitting.

December 2015 - I request a 3 month follow up B12 test, results – Normal – No treatment required (But I believe they were only just within the normal ranges? - Could this be checked?)

After the December B12 test - No follow up for B12 suggested

August 2016 – I asked GP for retest as I was feeling exhausted again, intermittent dizziness, very out of breath easily and was about to start taking amitriptyline which I knew could make me feel extremely tired.  Blood test booked for 30th August.

6th September 2016 – Results phoned through by a different Doctor who I don’t normally see, I had difficulty understanding the Doctor on the phone, so not sure of Folate result but my B12 level was 156, the Doctor stated this did not need treatment and to return for a retest in January 2017, also queried HbA1C but also said those levels were fine.

September 2016 – As I work at *** *** Hospital I looked up their guidelines regarding B12 deficiency.  A Level of 156 is within the Borderline range, *** Hospital Department of Haematology Vitamin B12 Investigation and Treatment Algorithm states:

 ‘When the B12 level is less than 150 pg/ml a presumptive diagnosis of B12 deficiency is made. Where the cause is not known, the laboratory will automatically check for intrinsic factor antibodies. If these are negative, a clinical decision has to be made as to whether further investigation is necessary for patient management. If the B12 is between 150 and 180 pg/ml, a therapeutic trial should be given. If there is a clinical response then a diagnosis of B12 deficiency is made and the appropriateness of further investigation as to cause should be determined. If there is no response, it is likely that the patient is not B12 deficient and other causes of the clinical problem must be sought.

If further investigation is required, please contact a Consultant Haematologist.’

My concerns:

I’ve never received any follow up regarding my B12 treatment or have I been asked how I responded to the injections to see if I need further injections as per therapeutic trial advice in the extract from above. I had a good response to the B12 loading injections initially, albeit this only lasted probably 3 months at the most before I was again falling asleep early in the evening, easily exhausted and my gums started to bleed again.  I have had to request both my follow up blood tests due to symptoms returning.

Since discovering last year that I had a B12 deficiency, I did look at my diet.  And I believe even though I have a very limited diet due to my IBS, intolerances, LPR and swallowing issues, I should be getting enough B12 from what I eat, if anything I would have always worried more about Vitamin C which I believe I get very little of in my diet.  The lactose free milk I have daily contains B12, I choose cereals fortified with B12 and I eat both Chicken and Bacon numerous times through the week and plenty of cheese.  I do have IBS and believe that on most days food does tend to go through me very quickly, whether this would affect the absorption of B12 I don’t know.  Also as you can see from my records I am taking the two drugs, Metformin and more recently Omeprazole, which can affect the ability to absorb B12 from food.  I have two immediate family members who have PA and are on B12 injections for life.

For the reasons above I believe not treating or investigating my borderline B12 level of 156 is the wrong decision, my levels are very unlikely to go up so they will drop further, by January next year I could be suffering even further with the effects of the deficiency.  If any of my nerve pain and issues with my left leg/foot are due to B12 deficiency then these could become permanent nerve damage.

Please see my list of symptoms below, some could be related to medication I am currently taking but some are also symptoms of B12 deficiency, so feel it is important to list them.

Dizziness even when walking/sitting – sometimes I seem to veer off to one side feeling unbalanced, this has become worse since taking Celebrex/Amitriptyline but I definitely did suffer with the giddiness and dizziness prior to taking either of these medications.

Increasingly becoming short of breath after short distances walking or up a flight of stairs

Tiredness/Exhaustion, just feel physically exhausted easily even if not sleepy

Bleeding gums

Nerve Pain especially in left leg and left foot (Sciactica? Around hip area, shooting pains in leg and foot) Sensation in left foot is often different than right foot, often get pain or tingling in that foot, usually get pins and needles especially when sitting down.

Tingling/Prickly pain in left thigh from tight clothing and pain/soreness on outer thigh when I lie on either thigh (this pain is only present on pressure ie. touch or lying on my side in bed or on a sofa)

Often get muscle pains, not cramp but feels like the same pain but in spasms, and pain in joints in lower half of my body (ie. Hip/Knees)

Blurred vision on occasions but not sure if this is due to Omeprazole as started when I started that?

Dry Mouth, tingly tongue, white cluster of spots on lips (Chelitis?)

Occasional buzzing in my ear

Short term memory loss – e.g. sat a computer - needed to look something up, open ‘google’ and have forgotten what I need to look up.  Forgotten what happened on an episode of something I watched a couple of days back.  Forgotten conversations from a few days back.

Whilst I know that my results have already been looked at by a Doctor, I would be very grateful if you could take a look and please give a second opinion, I feel that as the Doctor I see most often you probably know my history better and are in a better position to decide whether I need further investigation for my B12 levels or the possibility of ongoing B12 injections.

I have a follow up appointment with yourself on the 30th September for the Amitriptyline and Celebrex review, so if you have a chance to look at this prior to the appointment I would be grateful for your opinion at the appointment.