Trying to grasp (a) when further testing beyond B12 is needed, (b) when B12 sublinguals are called for, and (c) which sublinguals are best

My quick background: I was found to be B12 deficient in July 2016 with a level of 150 that had apparently been going on unnoticed for 2-3 years. (I take PPIs for gastritis and esophogitis, which may be the cause.) I've had loading doses of 7 daily injections followed by 4 weekly injections and now monthly injections for 5 months. I have seen some physical improvements, but they are unpredictable and grossly inadequate.

I frequently read on the forum mentions of pernicious anemia test results and other in-depth test results, but no doctor is mentioning further tests for me, especially since my B12 numbers have jumped to 630. My neurologist, who was at first horrified to learn that I'd had a B12 level of 150 for 3 years and who told me that he sees neurological damage at levels of 300, is now telling me that as long as my numbers are now above 300, I'm just fine! I am being treated as if "all's well that ends well" now that my numbers are up, even though my symptoms are barely changed! I feel that no one but me cares if there is permanent neurological damage or brain atrophy!

Perhaps I can blame it on my extreme brain fog, but I can't seem to understand how some of you have moved on from B12 testing to other, more revealing tests. Should I be receiving further tests, or am I lacking an indicator for those tests? Does this new level of 630 mean anything other than that my body is capable of absorbing some B12 from the injections? And if these once-monthly injections are having little to no noticeable physical or mental effect, does that send a message of its own? And should I start taking sublingual B12? I'm in the US, with good insurance thanks to Obamacare (which Mr. Trump vows to strip from us), but this process has not been cheap, and I can't afford to waste money on junky brands of supplements or on inappropriate dosages. Can anyone steer me toward a supplement available on, say, Amazon? (If indeed a supplement is appropriate, that isl) And if not, where might I turn? And speaking of where to turn, what specialty field is best equipped to understand and help with this problem? I feel like I'm banging my head on the doors of doctors who don't understand or don't care. If there is no hope of improvement, at the very least I want to know so that I can adapt to that reality and stop getting my heart broken by false hope and disappointment.

thanks for all the information and encouragement that you share,

d-g-s

(alias) dopey (✔) grumpy (✔) sleepy (✔)

8 Replies

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  • Hi Dopey-Grumpy-Sleepy do you know what your Folate level is? It is essential to have a healthy level of B9 to process the B12 you are having injected.

  • Thanks for replying; I am so desperate for knowledge and understanding. It's clear to me that I have to fully grasp this in order to fight for myself, and no one else is going to fight for me. The folate level at the same time was 13.6 ng/mL, with the acceptable range listed as greater than 3.0. (Of course, I no longer know whether to trust these "acceptable ranges" after having the B12 range, or lower limit, bumped from 200 to 300, with a lower limit being much higher in other countries.)

  • The levels in your blood test results do not represent the amount of B12 reaching your cells - where it is needed. I have read that only 20% of your result is available to be transported to the cells. Once you are supplementing further testing is of little consequence.

    Have you had your thyroid checked ? Being low on thyroid levels can be the cause of LOW stomach acid - and the symptoms are similar to high acid :-( PPI's are also known to reduce B12. PPI's are intended as a short course.

  • Marz, I too have read that once injections have begun, the blood test doesn't reflect the amount of B12 reaching the cells. What I don't understand is why doctors seem to think that the new, higher B12 number is the holy grail! Why don't they know that it doesn't mean that everything is suddenly copacetic?

    As to thyroid: I have had my thyroid checked over the years, and it is always low-normal. This year when the B12 was 150, the only thyroid test administered, TSH, was 1.600 u.U/mL out of a range of 0.450-4.500. My D3 (at 26) was a bit low, if one uses the "standard" range of 30-100. Two years ago, B12 was the same 150, D3 was even lower at 18, and TSH was 1.13 with T4 (Free) at .84.

    And while the general sense of PPIs is that they are meant for short-term use, for people like me with histories of stomach ulcers and ongoing gastritis and esophagitis, it is accepted by gastroenterologists that PPIs are a tool for longterm use. I haven't learned of an alternative that doesn't cause malabsorption of B12, although it may be time to return to the gastro specialist for that conversation.

    Thanks for trying to lead me toward the light....

  • Dopey-Grumpy-Sleepy - am afraid Docs receive very little if any training on Vitamins and Nutrition. Big Pharma cannot patent a vitamin - so there is no dosh to be made. We have to learn for ourselves. I had surgery over 43 years ago which removed the Terminal Ileum where the B12 is metabolised in order to return to the liver. They forgot to tell me I would need B12 treatment for life :-( I started injections 3 years ago - so methinks it is too little too late. However I am well.

    I also have Hashimotos - so am aware that having just the TSH tested is not the complete Thyroid story. You do need the FT4 that is produced by the Thyroid and then it has to convert into the T3 - which is the ACTIVE hormone needed in every cell of the body. Both are important tests. Then the Anti-bodies - Anti-TPO and Anti-Tg. Without ALL the results it is impossible to say * normal * .....

    Your TSH looks fine in isolation - but if the FT4 and the FT3 are low in the absence of anti-bodies then you could have Central Hypothyroidism rather than Primary. The T4 and T3 should be towards the top of the range.

    All my results were in range apart from the anti-bodies and so I was diagnosed with Hashimotos and given treatment to support the thyroid whilst under attack. I live in Crete where they are still inclined to look at the whole body.

    Have you considered any natural solution for the gastritis ? - just a thought. It comes up often on the Thyroid Forum .....

  • Marz, Thank you for sharing your time and knowledge with me. That thyroid information is a bit confusing, so I think it's time to take myself to an endocrinologist. I too have Hashimotos, diagnosed through fine needle biopsy after an inconclusive ultrasound. I'm shocked that you had the terminal ileum removed so long ago and survived without B12 treatment for 40 years. Last year I went from somewhat tired to nearly bedridden and psychologically prepared to die. I'm s-l-o-w-l-y and sporadically climbing up from that low, but I still have many of the neurological symptoms, and now that injections have been dropped back to once a month, the symptoms are clearly worsening. I can't imagine the suffering you've endured, nor how you coped or are coping.

    As for natural treatments for gastritis, my gastroenterologist is unaware of the B12 deficiency which may have developed partly as a result of the PPI that I began taking a year ago after endoscopy showed esophagitis and gastritis. I think it's time for me to return to the gastroenterologist to discuss alternative treatments. Perhaps at the least his knowledge of B12 deficiency could add to my knowledge base. (Although I can't help wondering why every instruction to take PPI long-term doesn't come with warnings about B12 deficiency and the need for testing, etc.)

    I have Sally Pacholok's book on the way. Would you recommend that I read Martyn Hooper's books in the order they were published?

    The more I learn, the more I understand how complex B12 deficiency is, and how many systems are involved. What is staggering is that not only is there no one doctor overseeing the 'production', it appears there is no one truly tending their own little part of it, either.

  • On page 11 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. 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."

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

  • Thanks for reminding me about the books. I keep coming across references to the books in these forums, but the references are always alongside so much other important information that it all spins into a tornado of blurred information inside my mushy brain. By the time I walk away, I have no clear goal!

    I have to admit that it's ironic that I'm trying to use my mushy B12 brain to (a) gain knowledge, (b) organize it into a convincing case and (c) retain it long enough to present it to doctors who already know everything!

    Speaking of Martyn's book about Pernicious Anemia, what is it that leads a doctor to run tests for pernicious anemia?? Yes, I asume I'll learn that from the book, but if the answer if relatively brief, I've gotten the impression that others might benefit from the knowledge too.

    And I will go now and purchase the books...hmmmm....maybe just one at a time to avoid the dreaded "overwhelmed" brain fogged feeling! Thanks again!

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