New here : B12 deficiency, now low folate and Vit D - Dr wants to decrease B12 injections

[Scillydreamer]

HI everyone. First a bit of background; I was finally diagnosed with low B12 (level 82) in June 2016 after over two years of going back and forth to the doctor with various intermittent symptoms, having blood tests and a colonoscopy. My IF was tested and came back as OK - though I know now that this doesn't really mean anything. I was given the loading injections which took a few weeks to properly kick in but eventually improved my symptoms massively. I was then put on the 3 monthly maintenance injections but have found that my physical symptoms start to return after about 4-6 weeks and my psychological symptoms follow shortly thereafter. The doctor agreed to let me have injections at 10 weeks but the symptoms were still kicking in after 4-6 weeks. I get to the point about 3 weeks before my injection is due when I can't concentrate, I am ridiculously tearful about nothing, I feel remote from everyone and everything and just generally want to isolate myself. So I took myself back to the doctor and he decided to do some more blood tests before my next injection was due.

I was back at the doctor yesterday for the results of those tests; his conclusion my B12 was 2000 (this was obviously 10 weeks post jab) and therefore I should stick with 12 weeks and could look to move to every 6 months. The blood tests also showed that now my Vit D level is low (I know it has been winter but I spend at least 2 hours outside every day walking the dog so of all people mine shouldn't be low) and my folate levels are low so I am now on courses of oral tablets for both these. As a side note I was told last year they had tested my folate and it was fine.

I tried to explain just how bad things got before the last two injections but because I always see him about 10 days after a jab and I feel like a completely different person I don't think he truly gets just what a bad place I get to. He initially wanted to wait until I had finished the Vit D and folate courses before doing anything else but when I mentioned I had BUPA cover he agreed to refer me to a gastro-entrologist as he suspects its a mal-absorption issue. My diet is healthy and balanced (well OK maybe a bit too much chocolate! )

The last injection has made a big difference to my emotional state - though not as big a pick up as previous injections - and to some of my physical symptoms but this time seems to have had no impact on my bowel issues. Possible this is the low folate? I have been tested and cleared for coeliac disease.

I am obviously going to go ahead with the referral when it comes through but wonder if I should also be seeing a haematologist?

What do I do about doctor decreasing frequency of my injections when I already felt I was waiting too long?

The folic acid tablets I have being given say you shouldn't take them if you have a B12 deficiency or PA. Since the doctor prescribed them - is it ok to take them or is he assuming I don't have a B12 deficiency based on latest serum B12?

Could all of this be caused by perimenopause?

I have lots more questions but think that's probably enough for now and I am not expecting all the answers from you guys but any advice you can give would be extremely welcome. This has all taken it's toll on me and it's had a dreadful impact on my family too as I am pretty awful to live with for a large proportion of the time.

Thanks in advance.

[clivealive Forum Support]

Hi Scillydreamer do you have any idea why you became B12 deficient in the first place?

Look down the following and see if you identify with any of the people.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve 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 use the 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 thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s 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.

Do you know what your Iron level is? B12 and folic acid helps your iron to make red blood cells.

I'm not too sure about what the folic acid leaflets says about not taking it if one has P.A. as I have taken one Folic Acid 400μg every day for more years than I can remember and I've had P.A since 1972.

I am not medically trained but there are others on here who will give you good advice.

[Scillydreamer in reply to clivealive]

Not vegetarian/vegan/macrobiotic diet. I'm 45. No surgery or eating disorders/alcoholism or anything else on your list...except it's possible my grandfather had PA or a B12 deficiency. Can't be sure but my mum remembers him having a 3 monthly injection in his latter years, definitely not a lifelong problem. My sister was also diagnosed with B12 deficiency - 3/4 months after me mainly because when she told me her symptoms I told her to get the doctor to check it specifically.

I don't know what my iron level is but think doctor said it was ok yesterday and it was certainly fine when they tested it last year. I am going to get the doctor to give me a print out of all my recent test results.

On the folic acid - clearly my serum B12 is currently well over the guidelines but was just wondering about this active/inactive B12 issue that I keep seeing things about.

[clivealive Forum Support in reply to Scillydreamer]

Unfortunately many "one size fits all" doctors stick rigidly to prescription guidelines and not to the "treatment of symptoms" guidelines.

I noticed for many years a return of some symptoms in the run up to my next injection but my doctor steadfastly refused to believe that they were anything to do with the P.A. because I was getting the B12 injected.

I then joined the Pernicious Anaemia Society and learned that I was not the only person in the world with the same problem and have now since last years had the frequency increased.

In your case and despite your (now) high B12 level your doctor should take note of the following regarding your symptoms:

" False normal B12 results and the risk of neurological damage "

(U.K. N.E.Q.A.S Haematics.org.uk)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

As you say the tests for P.A. are not all that reliable and it is possible that you do have a family "connection". Is your doctor aware of that?

I wish you well.

[LtAngua52 in reply to clivealive]

I just wondered clivealive, where did you get this list from? My GP says my b12 deficiency is not related to my hashimotos thyroiditis. I keep telling him jt is, and he keeps saying no. It's a game we play. I would like to show him evidence! Thanks

[clivealive Forum Support in reply to LtAngua52]

On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O.

The book is well worth while the purchase as is Martyn Hooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" both available via Amazon - and no, I'm not on commission

[LtAngua52 in reply to clivealive]

I thought it sounded familiar, I've got it! And Martyn Hooper's. I've not read it for a while though. Thank you.