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Severe B12 deficiency and malabsorption

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Ptmatt

22/05/2025 at 09:26

Ptmatt

Last activity on 25/06/2025 at 09:19

Joined in 2025

Patient, Vitamin B12 deficiency since 2025

1 comment posted | 1 in the Nutrition / Metabolism / Endocrine glands Forum

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I am in a very dire and desperate situation. I have here seeking help, advice and much needed encouragement.I have severely low B12 levels - last month it was just 16. My body rejects all forms - food, tablet, even injections. When I have injections of B12 I experience atrophy of the pelvis and spine, and also femur bone. And severe and horrid agony throughout my body.I drank (accidentally) contaminated water 10 years ago and acquired a likely parasite. Since then my health changed dramatically - including severe reactions to B12 tablets, however B12 foods were mostly tolerated in moderate to fairly decent amounts (but not large amounts). My body also reacted severely to calcium rich foods.I was given albendazole (anti-parasitic) and it was extremely effective in treating the issue, until I had a very serious reaction to the drug (I had major intracranial pressure, convulsions and became completely paralysed. The paralysed lasted for two days and was a result of neuro toxicity. As a result I was unable to complete the dose and the infection came back worse than before. All other anti- parasitics failed. So I was then advised diet modification.For ten years I basically lived a half life, but never experienced any B12 deficiency, until recently.About 7 months ago I acquired delayed gastric emptying ( It happened as a result of me having too much apple cyder vinegar in one sitting) Since then major - more than before and very noticeable B12 rejection began to occur. I began to have very painful gut and nerve pain every time I had any B12 foods. The more I ate the more weak and pain I felt, especially in the lower lumbar pelvic area. When I cut back on the B12 foods the pain and reactions would settle down.In the last three weeks I have developed extreme neurological problems and cognitive issues. Multiple bones have atrophied in my body. I am in constant pain and cannot sleep or eat well without serious pain and dysfunction.As mentioned earlier I was given B12 injections, but the response was rapid atrophy of bones - especially pelvis and spine.I am trying to get help, but doctors have been clueless and utterly unhelpful. I am exceedingly weak, and would appreciate any advice.I am deeply concerned that the damage to my body is largely irreversible.I suspect along with a parasitic infection (which has so far evaded pathology detection) I also likely have bacterial Gut and SIBO overgrowth.Any comments are deeply appreciated

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Somya.P

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22/05/2025 at 10:19

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Somya.P

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Last activity on 30/12/2025 at 23:42

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886 comments posted | 2 in the Nutrition / Metabolism / Endocrine glands Forum

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Hi @Ptmatt,

Thank you so much for opening up about such a difficult experience. That is heart-wrenching and incredibly brave of you, and I can only imagine how exhausted and isolated you must feel after years of struggling to be heard, understood, and helped. You are not alone, and your voice matters here. 💙

For others reading this: B12 is essential for nerve function, red blood cell production, and energy. Deficiency can lead to fatigue, neurological symptoms, and even irreversible nerve damage if left untreated. In most people, B12 deficiency can be corrected with supplements or injections. But in rare cases, especially when complicated by gut infections, SIBO, or malabsorption syndromes, even standard treatments can become dangerous or ineffective.

Let me tag a few members, so this important post gets the attention it deserves and reaches more people who may relate or have insights to share.

👉 Have you ever experienced unusual or extreme side effects from B12 or other vitamins?

👉 How do you cope when you’re told “there’s nothing wrong,” even when you know something is?

👉 What tests, specialists, or second opinions have helped you get to the root of complex symptoms?

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Even if you can’t offer solutions, your support could mean the world to someone who’s feeling lost.

Take care,

Somya from the Carenity team 🌼

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Somya from the Carenity team 🌼

Severe B12 deficiency and malabsorption https://www.carenity.co.uk/forum/nutrition-metabolism-endocrine-glands/living-with-diseases-of-nutrition-metabolism-a/severe-b12-deficiency-and-malabsorption-5720 2025-05-22 10:19:56

lacemaker

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22/05/2025 at 21:43

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lacemaker

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Last activity on 22/05/2025 at 21:43

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88 comments posted | 1 in the Nutrition / Metabolism / Endocrine glands Forum

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Wow you’re certainly going through the mill. I can’t help but just want to say I feel for you.

lesmal

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Edited on 25/05/2025 at 19:16

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lesmal

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Last activity on 03/01/2026 at 09:55

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Sending love and strength during this hard time. I can't offer any help or suggestions, but you are in my thoughts.

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Les

Severe B12 deficiency and malabsorption

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