Very Confused!

Around August 2016 I found out that my B12 serum level was very low, in the low 200's. After doing some research, I'm almost positive that years and years of Nexium was the culprit. My other labs pointed to that as well from what I could tell - low RBC, low hemoglobin, high MCV. I was amazed at how many of the symptoms that I have been feeling for so long could be attributed to low B12!

Unfortunately, I began supplementing and my B12 is now extremely high (>2000 according to my last test) yet I still feel feel the same symptoms with barely any relief, if any. Also, I my anemia has only improved just a tiny bit.

My symptoms were and continue to be: shortness of breath (hard to take a deep satisfying breath), fatigue, anxiety, sleeping issues, memory issues, hand tremors, cold hands/feet and the hardest to live with in my eyes, stuttering. It is like I am now afraid to speak to people. Also, just a little bit of alcohol, and my symptoms intensify ten fold for the next 3 days.

Since my B12 levels are so high now, my symptoms must stem from something else? Could injections help me? Do I need to throw in methylfolate into the mix?

Thanks,

Patrick

15 Replies

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  • One thought is to get tested for other deficiencies, including other b vitamins. Especially because alcohol is a trigger.

    I personally wouldn't take folate unless I knew I was deficient. I had a doctor once give me high dose methylfolate (plus high dose methylcobalamin sl) and somehow I feel it made my b12 deficiency worse. This is just me though, and I'm talking about a situation that was overkill. Some people do quite well with it, some don't.

    You may find injections work better. For me it's no contest, I feel much better with shots.

    Don't touch alcohol! I had to give it up.

  • Thanks! Yeah I have terrible reactions with alcohol. Usually one glass of wine I am okay, but more than that, and I definitely pay the consequences. It is crazy. I will be cold for days, be very anxious/depressed and just have a cloud over me.

    I actually have been taking methylfolate for a few days now. I find that it actually helps with my symptoms quite a bit though it I am definitely feeling some anxiety from it (a different kind of anxiety) as well as a little bit of insomnia. I had labs drawn on Monday, a test called "anemia profile: megaloblastic" that I am hoping will bring some answers, as MMA was included in that panel.

    So shots could provide more benefit than sublingual, even though sublingual has proven to raise my serum? It just doesn't quite make sense to me. Thanks!

  • I'm another who's not been able to touch alcohol for years. Just a mouthful put me in bed for days, totally unable to function. I thought it was a menopause thing but now think it's to do with my out of sync body chemistry. I get bad reactions from other foods & drinks too.

    i tried B12 patches and I have sublinguals as back up but I don't think they work for me ( small initial improvement on patches) Injections seem to being the only improvement.

    Keep reading, keep learning about B12 def --- do you have signs of any other auto immune problems as they seem to go together?

  • Yeah I respond terribly to alcohol, it is such as shame. I have been tested for all auto immune issues but nothing has come back. I keep getting tested for celiac as I have many of those symptoms and also have an aunt and cousin who have it, but keep testing negative.

  • low haemoglobin would be indicative of an iron deficiency rather than a B12 deficiency - high MCV is indicative of either a B12 or a folate deficiency. Symptoms of all 3 overlap considerably.

    Have you spoken to your GP about the situation. Looks like you may have an absorption problem - could be PA, Coeliacs or related to crohn's

    In some people high levels of B12 results in a functional deficiency - result of an auto-immune response that stops B12 getting from blood to cells and leaving you deficient at the cell level. Tests that can help to clarify in this are homocysteine and MMA - which will be elevated if your B12 is low. Homocysteine will also be elevated if your folate is low.

  • Would serum levels go up to >2000 without injections is it was PA?

  • an absorption problem isn't the same as no absorption. In theory really high oral doses could push levels up high though I think it is quite unlikely - though I wouldn't like to claim to be that well versed in all the niceties of how absorption in the gut gets into the blood as it involves binding with other proteins.

  • Hi, Iron and Ferritin is always well within range. My GP won't hear any of my complaints about B12, says it is not an issue because after supplementing I now have easily enough in my system. I have had countless blood draws and endoscopies with no sign of those diseases according to the gastro. I keep getting tested for Celiac because I have every one of those symptoms and feel so much worse after eating gluten, plus I have an aunt and cousin who have it, yet I keep testing negative...

    I just had a test done on Monday called "anemia profile: megoblastic" so I'm hoping that can give me some answers. MMA was part of the panel. I had to request that test out of my own research since my doctor does not seem interested in digging into what is actually going on.

  • hope you get a result from the tests.

  • Hi,

    Are you symptomatic for B12 deficiency? See lists below.

    pernicious-anaemia-society.... see Checklist

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    Are you in UK?

    In UK, the BSH Cobalamin and Folate Guidelines make it clear that patients who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial b12 treatment. This applies whether B12 is low or within range. IFA test can help to diagnose PA (Pernicious Anaemia) but test is not always reliable and a person can still have PA even if IFA test result is negative. (called Antibody Negative PA).

    If you're in UK, I'd recommend reading whole BSH Cobalamin and Folate Guidelines. Sadly there are some GPs in UK who may not be aware of these guidelines (I gave my GPs a copy).

    BSH Cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/gui...

    Flowchart in BSH Cobalamin guidelines

    stichtingb12tekort.nl/weten...

    Other B12 info

    Some may not be applicable in you're not in UK.

    1) Pinned posts on this forum. I found fbirder 's summary of b12 documents helpful. link to his summary in third pinned post.

    2) PAS website

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Martyn Hooper's blog about PA and B12 deficiency

    martynhooper.com/

    3) B12 deficiency Info website

    lots of b12 info and an interesting blog

    b12deficiency.info/

    4) b12d.org

    b12d.org

    5) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    6) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of PAS. He has written two other books about PA and B12 deficiency.

    7) Book "Could it be b12" by Sally Pacholok and JJ. Stuart (USA authors)

    8) BNF Chapter 9 Section1.2

    UK B12 treatment info

    evidence.nhs.uk/formulary/b...

    "Since my B12 levels are so high now, my symptoms must stem from something else? "

    My personal opinion (I'm not a medic) is that it is possible to have very high B12 levels and still be symptomatic. Think the BSH Cobalamin guidelines mention that testing B12 levels after supplementation has started is irrelevant.

    Some people have what is called a functional B12 deficiency...plenty of B12 in blood but something stops it getting into cells where it is needed.

    nhs.uk/Conditions/Anaemia-v...

    pernicious-anaemia-society....

    Have you been tested for Coeliac disease? Thyroid disease?

    coeliac.org.uk/coeliac-dise...

    thyroiduk.org.uk/tuk/index....

    "I'm almost positive that years and years of Nexium was the culprit"

    Some medicines can affect B12 levels and folate levels.

    b12deficiency.info/what-are...

    b12deficiency.info/what-to-...

    Unhappy with treatment?

    Letters to GP

    b12deficiency.info/b12-writ...

    CAB

    citizensadvice.org.uk/healt...

    HDA patient care trust

    UK charity that offers free second opinions on medical diagnoses and treatment.

    hdapatientcaretrust.com/

  • I think you need to have thyroid checked and autoimmune also. I have the lot. It was only after having guidance on this forum that I was able to begin functioning again and it took months and months but slowly I began to see small improvements. All you vitamin levels need checking, post results on here and these good folk will guide you through.

    I had terrible brain fog into the bargain and had difficulty understanding and retaining the advice but they did not give up on me and got me through the worst of it. Like you I had symptoms for a long time before going to the medics.

    It may something else at work but only testing will give a clearer picture. I had to go the injection route much to my chagrin but at least I have a somewhat reasonable life back.

    Hope this helps a little. God bless.

  • Thanks! My thyroid is actually fine, I have had it tested numerous times. Testosterone has been low for a while and I have been treating that. Not sure if or not that is related to my anemia issues.

  • Having been a member of the Thyroid forum here on HU for almost 6 years - I have read hundreds of times that members have commented that their thyroids are * fine * .... when delving a little deeper it is revealed that only the TSH is tested and yes that can be declared fine if it is in range. Where it is in the range is of importance. Also the TSH is only a small part of the story - you also need to know the readings for the FT4 and FT3 - also thyroid anti-bodies - TPO and Tg and this complete Profile is rarely checked on the NHS. Do you have copies of your results with ranges ?

    thyroiduk.org

    PS - sorry just spotted you are in the US :-)

  • Thank you so much for all that great info! Wow! I am going to research all of those links. I am in the US and my GP seems to know very little about B12 and says that all is fine because my serum is fine. I had to go on my own to another doctor and had them give me a script to have another blood test done called "anemia profile: megoblastic". I am hoping that gives me more answers. Which specialist would be best to go to for this? A hematologist perhaps? Or do I just need to find a better GP?

  • Hi,

    if you're in USA, I'd suggest reading "Could it Be b12"by Sally Pacholok and JJ. Stuart.

    There is a USA b12 website "b12awareness.org" . Link underneath.

    b12awareness.org/

    There is at least one PAS (Pernicious Anaemia Support) group in USA.

    pernicious-anaemia-society....

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