New, first post and need help. - Pernicious Anaemi...

Pernicious Anaemia Society

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New, first post and need help.

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Hi, New here, but have followed for a while. My B12 has always been high. Asked Dr how it's possible to have almost every S/S of B12 def, but B12 is too high? I became suicidal and felt like I was losing my mind. Finally paid to see a Dr. outside of insurance and she tested me for food allergies and a mutated gene that prevents methylating folate, which came back positive and wants a "parietal cell w/ REFL" (?), Fasting serum gastrin and total iron and IBC tested & said homocycteine was too high.

Started L5MTHR (methylated folate) and B12 injections and the results were pretty immediate, but had up's and downs. Happy to report that I CAN'T EVEN BELIEVE I contemplated ending my life, day in and day out for months. Pain gone and numbness /weakness greatly improved. I'm soo happy to be back to my optimistic self. Primary said theres nothing wrong and my blood work is fine, "it's a good thing to have such hi B12". But then had no explanation as to why I felt like dying and was losing my mind. Can tell I need a B12 shot because 1st thing to return is a flashing in my lateral left eye (also the 1st thing to go away w treatment). Started getting cyctic acne w injections so started on a powdered methylcobalin, but it doesn't seem to help. I do feel so much better though. Don't want to slide back, but is the acne because I don't need the B12? Could this be PA?. Was hoping for guidance. Thank you so much for being here!! Test results:

MCH . 34-36 over several months . (26-34)

MCHC 35-36 over several months (31-36)

B12 Binding - 700 (800-2600)

B12 1300-1500 (211-911)

Homocysteine 14.5 (5-15)

Vit D 41 (highest its ever been with 10,000 iu supplements)

Ferritin 11 (8-252) (also have hemochromatosis, so i guess its good that its so low?)

Thanks for any help!!

5 Replies
Gambit62
Gambit62Administrator

The acne is likely to be down to a reaction of the micro-organisms on your skin to the higher levels of B12 - they produce a toxin which your skin is reacting to. For some people this reaction goes away but for others it does seem to be permanent - not much comfort I know. You could try speaking to a pharmacist and see if they can suggest a good wash that might help with the problem.

Symptoms of B12 deficiency in the presence of high serum B12 is known as functional B12 deficiency (which is a symptom of some conditions that can cause raised B12 - kidney and liver problems). Ironically the most effective treatment is raising B12 levels even higher and keeping them their. The problem in functional B12 deficiency is that the process that allows B12 to move from blood to cells gets less efficient meaning that you need much higher levels of B12 for enough to get through for all the processes in your cells to run properly.

Hidden
Hidden in reply to Gambit62

Thanks for the reply Gambit62, so functional B12 deficiency isn't PA, correct? Recall being told that my blood cells are large and misshapen, but don't recall details. Is it even possible to have symptoms return after only 2 weeks? The flashing in my eye and foot/leg tingling started again. A little brain fog too. This has been the most frustrating journey, thinking ME/CFS, Lyme, even MS at one point, then having a miracle happen with the folate and B12. A miracle! Want to make sure I'm not causing harm if I inject again before seeing Dr, she did tell me to stop (because of acne). I travel A LOT for work, so can't get in to see her for a few weeks and feeling unwilling to allow a backwards slide. If this is a functional issue, how do I know if my levels are okay? Just by symptoms?

Gambit62
Gambit62Administrator in reply to Hidden

symptoms can return within 24hours - mine do.

PA is a B12 absorption problem which leads to low levels of B12 - it sounds like what you have is probably a genetic problem metabolising B12 and folate - so you just need more B12 than normal in your blood for there to be enough getting through to your cells.

The only way of knowing if your levels are okay is to go by your symptoms. Likely that they may now need to be so high that they are off the top of range that kit can measure properly

Also sounds like you had macrocytosis - larger rounder red blood cells which makes them less efficient at transferring oxygen from your lungs to the cells where it is needed.

It may not necessarily rule out something else going on as a number of conditions seem to respond well to B12 - some may be misdiagnosis but unlikely that all is, given the way studies are structured.

Hidden
Hidden in reply to Gambit62

Thanks again, found the paperwork- my PD said it was macrocytic anemia, but he said it was “borderline” because all my numbers were at max or only slightly above max. Will have the serum gastrin and parietal tests next and look for a macrocytic anemia forum. Cheers, and many thanks again!

Gambit62
Gambit62Administrator in reply to Hidden

macrocytic anaemia is a common symptom of folate and B12 deficiency - may be other things that cause it but generally it is one of those two.

serum gastrin and parietal cells are tests to check if you have PA as a specific cause of B12 deficiency. However 24% of people who are B12 deficient don't present with mactocytic anaemia and your serum B12 numbers do not tally with PA being the cause of B12 deficiency, unless these were done after you had had loading doses.

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