New diagnosis B12 deficiency

I am new to this group despite following Thyroid UK comunity for a year or two now. I have been concerned over the last few years about the potential of thyroid issues due to nodules growing in both sides of my thyroid. Investigations last year found nodules were benign with normal TSH 0.9 (range 0.2-5.69) so I have tried to get on with life despite thyroid symptoms. I have had increasing symptoms of extreme tiredness, mental fatigue, forgetfulness, brain fog and low mood. In addition to this I have had oedema in my lower legs and upper arms, swollen tongue, some clumsiness by dropping or tripping and falling appetite. I felt that it was time to head back to the GP as symptoms were now impacting on my ability at work.

GP was very sympathetic and requested a raft of blood tests. She was even happy to request thyroid antibodies. To my surprise all have come back clear except B12 which is deficient 145 (range 120-1000). I knew nothing about B12 until this week but have been reading some posts here to better inform myself. There was another test done for intrinsic factor but that has come back negative although GP did say this was unreliable. He also said that the deficiency did not appear to have affected my red blood cells. I assume this means I don't have PA. I have been prescribed 5 injections over the next 2 weeks starting next Monday. I asked what happens then and GP said that I would be retested in 6 months.

Is there anything else I should be asking ? How do I know that the treatment has been successful if I am not retested till 6 months ? Can I really expect to feel better just with this short course of jabs ? Should I be having regular jabs after this initial dose? Should I be asking the GP to be ousing the cause - my digestion has been an ongoing issue with so say IBS for the last 10 years ?

Sorry lots of questions I have really been floored by this and realise I know so little.

Thanks in anticipation. Tanya

13 Replies

oldestnewest
  • Sounds like P.A to me. The red blood cells are not always affected . P.A also often comes with I.B.S symptoms I think that you will feel a difference after you have had the loading doses. I certainly did. It does depend how long you have had P.A. You should then be offered an injection every 3 months or every 2 months if you have any neurological symptoms. These may or may not be enough to keep you feeling well. But that is all you can hope for under the NHS. If it is insufficient come back here for help. As for the tummy problems I would say that they are caused by low or no stomach acid (Hypochlothydria or Achlorhydria) A gastroenterologist told me that P.A patients all have this problem, and told me that there is no treatment. THERE IS ! It involves taking a very good probiotic (Iused Symprove) and following instructions to the letter. Also eat some organic raw sauerkraut (Health food shop or make your own.) Some people use Betaine Hydrochloric acid + pepsin capsules(Google to find out ) You need stomach acid to help extract the nutrients in your food. Acid is also required to keep bad bacteria in your stomach under control. If it's not you get bloating, pain and nausea . As you have experienced , I'm sure. Look I hope that txt this helps a little. You have come to the right place at last. I tell you there are some great people on this site, who are much cleverer than me. You will hear from them I'm sure. All the very best!

  • Thank you for your insight wedgewood. Reading the symptom lists there are more symptoms that I have had but just have put down to IBS and heading towards the menopause. I have read a fair bit on Symprove on the thyroid uk community so will look into that further. I did try paleo diet for a while but didn't go as far as fermented foods. Perhaps something to look at again. Thanks again for your help. T

  • I've got to agree with wedgewood. It sounds like you almost certainly have PA (a misleading term as large numbers have no sign of anaemia) and achlorhydria, which causes the IBS-like symptoms.

    Here's a post I made earlier -

    If you have PA (and it sure sounds like it) then you almost certianly have autoimmune metaplastic gastric atrophy (AMGA). Your immune system is killing off the Gastric Parietal Cells (GPCs).

    These cells have two main jobs:

    1. Making a protein called Intrinsic Factor (IF) which is responsible for carrying the B12 molecule across the gut wall into the bloodstream.

    2. Making hydrochloric acid.

    1 is responsible for your B12 deficiency and is treatable with B12 jabs.

    2 isn't so serious, but still has some bad effects and is never, ever treated by medics.

    Not having any stomach acid (achlorhydria) causes several problems. The first is that any protein-rich food isn't broken down properly. Instead of being digested properly it passes into the large intestine partially undigested. The bugs that live there have a huge big party, giving you IBS-like symptoms (nothing for a long time then a sudden need for the toilet, in my case at around 4 am).

    The acid in the stomach is also great at killing off bacteria - the stuff in your food that you don't want to pass through, plus the bugs in your small intestine that are really supposed to stay in your small intestine.

    Another problem is absorption of iron. This is much more soluble in acidic conditions. Achlorhydria can screw up its absorption. Even without achlorhydria it's a good idea to take your iron with a combination of citric acid and ascorbic acid (Vit C). These both help with iron absorption by grabbing iron atoms and taking them into solution.

    Many people have found ways to treat achlorhydria by consuming acid with meals. Some take capsules containing betaine.HCl which releases hydrochloric acid in a wet environment. Others swear by apple cider vinegar. My personal fave is 40 ml of lime juice in a glass of water (although I'll use the betaine. HCl when eating out).

    Another thing many people find helps a lot is to take a probiotic (Symprove is very good, but expensive; Bio-Kult is cheaper and works well). Raw, unpasteurised sauerkraut is a good, natural probiotic if you like that sort of thing (luckily, I have Eastern European ancestry, so it must be in the genes).

  • Hi,

    I've written some detailed replies recently Tanya but exhausted at moment. If you search for my posts, there might be some useful info.

    It is possible to still have PA even if IFA test comes back negative. The "BCSH Cobalamin and Folate Guidelines" mention Antibody Negative PA on page 29.

    UK B12 websites

    PAS

    pernicious-anaemia-society.... 01656 769 717

    Lifetime PAS membership costs £20.

    b12deficiency.info/

    b12d.org

    martynhooper.com/

    B12 books

    "Could It Be b12" by Sally Pacholok and JJ. Stuart

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    UK B12 documents

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

    Google "BCSH Cobalamin and Folate Guidelines"

    Info on UK treatment

    patient.info/doctor/pernici... See Management section

    BCSH Cobalamin and Folate guidelines page 8

  • Thank you so much for all the details you have sent through sleepybunny. There is so much to take in but this is a great place to start. I appreciate your willingness to help me when you are feeling so tired yourself. Much appreciated and hope you feel better soon. T

  • PA is sometimes used as a short hand for vitamin B12 deficiency though strictly speaking it is one specific cause - an autoimmune response (so not surprising it is quite common in people who have thyroid problems) - that causes a B12 deficiency.

    The symptoms of PA are the symptoms of the B12 deficiency it causes.

    Other causes of B12 defiency are

    lack of B12 in diet (rare, unless you are a strict vegan who doesn't supplement or eat any foods that contain fortification - most cereals do)

    low levels of stomach acidity - and as the symptoms of low stomach acidity often look like the symptoms of high stomach acidity that brings us on to

    drug interactions including PPIs used to treat high stomach acidity, NSAIDs, some anticonvulsives, metformin used to treat type 2 diabets

    genetic abnormalities affecting the ileum - which is where 99% of B12 is absorbed

    good that your GP is aware that the IF test is inaccurate.

    Unfortunately they are wrong about the retesting in 6 months - recommended treatment is for maintenance shots every 3 months if no neurological symptoms and 2 months if neurological symptoms. If you have an absorption problem then you can't store and recycle B12 so you need regular top ups and after you have had shots levels in your blood are no guide to what is going on with B12 at the cell level, which is where the problems occur.

    the symptoms of B12 are not caused by anaemia - anaemia - macrocytosis - is one of the symptoms of a B12 deficiency and absense of anaemia is most definitely not an indicator that things have been caught early. I've had neuropsychiatric symptoms and neurological symptoms that I can trace back over 40 years before diagnosis ... and I have never had any anaemia.

  • Thank you for your reply gambit62. I am not vegan eat lots of meat and eggs but I do avoid dairy due to my IBS (found this doesn't agree after low Fodmaps elimination diet). I do wonder if it is either thyroid or stomach related cause.

    I will speak to the nurse on Monday and find out if there are follow up jabs at 2-3 monthly intervals. I am excited that the jabs may help me feel better and wouldn't want to go back to how I am feeling now if this can be helped.

    This is a very confusing condition but all the advice I have had is very helpful. I have bought Martyn Hoppers book on my kindle so will try and digest that over the weekend. Maybe after my jabs my brain will take it all in. Doesn't seem able to at the moment.

    Thanks again T

  • Hi Tanyamm32 welcome to this community. You've been given a lot of brilliant advice above already so my only question is do you know what your folate (B9) level was as this works hand in hand with the B12 you are having injected?

    I wish you well.

  • Thank you for responding clivealive. I did have folate tested and the GP did say that B12 was only issue. I saw the screen and the ranges for the B12 but to be honest there were so many results it was difficult to check them all. I will ask for a print out on Monday. Should I take B9 in tablet form alongside the jabs? Or would this be a problem if my levels were ok? Thanks T

  • I'm no expert Tanyamm32 but having high levels of folate (B9 or Folic Acid) can "mask" the problems of having low B12, so don't start supplementing with folate until you start on B12.

    Personally I take 1 – Folic Acid 400ug tablet per day but it can be obtained naturally as many fruits and vegetables are good sources of folate. In the United States, bread, cereal, flour, cornmeal, pasta, rice, and other grain products are fortified with folic acid. Beef liver contains high amounts of folate. Peas, beans, nuts, and eggs also have folate.

    You may well be getting enough via your diet, which means your folate level test result might be quite high.

  • "so many results it was difficult to check them all. I will ask for a print out on Monday"

    I always get copies of blood test results. I learnt from experience that results I was told were "normal" over the phone or even face to face were not always normal when I got copies.

    Clivealive mentioned folate in his post. I have read that its also important to have good levels of iron as iron, b12 and folate work together.

    b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    b12deficiency.info/what-are...

  • It seems to me that it's very common to have thyroid problems and b12 deficiency and that many symptoms can be contributed to both. I have both. I started b12 at Christmas and had an immediate improvement which lasted 6 weeks when I went back to my doctor armed with info from this support group, in a belief I would have to fight to get more but Like your doctor he was sympathetic and started me on 8 weekly injections. I think doctors go on the side of caution and have a suck it and see attitude to improvement. You will improve and you will have days you think is it not working but my advice would be when the improvement stops or slows go back and ensure he knows what a difference the injection made to your life (as it will) and I am sure more will follow.

  • Many researchers believe leaky gut/intestinal disease is the ground zero of autoimmune disease and thyroid/PA/B12 def. are often linked both ways with overlapping symptoms. It is a good sign that your GP is aware of this but, as you appear to have neurological symptoms, you should be treated without delay with B12 injections UNTIL NO FURTHER IMPROVEMENT as defined in the BNF guidelines :

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    Here are some more links you may not have seen:

    ukneqas-haematinics.org.uk/... :

    cmim.org/pdf2014/funcion.ph...

    The above latest BMJ research document is supported by many research papers and has a useful summary. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

    Folic acid has been mentioned above and it would be better to avoid taking this whilst your levels are so low. There is an excellent film on the B12 deficiency site with information on this:

    b12deficiency.info/films/

    Haemotologist's quote:

    "If you treat someone with B 12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."

    gbhealthwatch.com/Nutrient-...

    "High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood.

You may also like...