After another wasted trip to the doctors last month. She showed some concern over my long list of symptoms but thought it best to wait another 5 weeks before we discussed B12 injections again (She is convinced it is due to diet), and in the meantime sent me for more of the same repeated blood tests but also for Pernicious Anemia!
At this point I immediately ordered B12 injections from Germany and decided to take control of my own treatment - Best descision ever made 🙃 I've been injecting EOD as per NICE guidelines and I'm making a vast improvement with my brain function and energy levels and I feel my nerve problems are slowly making improvements.
The intrinsic factor test came back negative as expected and all the other tests for thyroid function and B12 etc were rejected lol
Thanks to my brain working correctly (I don't feel stupid anymore!) I've been able to research further into vitamin deficiencies and I'm also remembering previous doctors conversations regarding back pain and mental health and I think I may have discovered a possible cause other than an auto immune disease that could have created my defiencies in B12, Folate, Vit D and possibly others.
I took Paroxitine 40mg (Anti depressant) for 20 years to treat a diagnosis of Depression and Anxiety and I also took a high dose of 500mg Pregablin daily for about 5 or 6 years. I have read that these medications can deplete vitamins and it is not well known that a patient should take supplements when taking long term. The stupid thing is I was on Pregablin for Neuropathic pain and I only now remember one of the pain management consultants explaining how my neurotransmitters do not work correctly and this is where the majority of my pain comes from.
I'm now left wondering which came 1st... do I have asorption issues that created mental heatlh and back problems or did the medication and poor eating habits deplete my vitamins.
Sorry for the long post but I'm intrigued to hear your thoughts as no one else has the experiance and knowledge on the subject like you guys xx
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woo79
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I'm sorry to read that you had a wasted trip to doctors .....many of us on this forum can relate to that.
If your GP is convinced that diet is the cause, have you considered writing out a typical weekly diet, all food and drink, to show GP? Highlight B12 rich food you are eating eg meat, fish, shellfish, eggs, dairy, foods fortified with B12.
I suspect most of us on here have met health professionals who have wrong ideas about B12 deficiency.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
A negative result in Intrinsic factor antibody test does not rule out PA (Pernicious Anaemia)...your GP should know that it's possible to have Antibody Negative PA but I suspect some doctors don't.
Any chance of internal parasites eg fish tapeworm?
Have you eaten raw or uncooked fish or lived or stayed in an area where internal parasites are common?
One clue that there may be an internal parasite is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found with Full Blood Count test results.
High alcohol intake may lead to lower B12 levels.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
I am very sure that long term prescription drug use- in my case PPIs - occasional antibiotics, anaesthetic both dental and hospital, all deplete B12 and probably many vitamins. For the rest of my life I will do whatever I can to avoid them all.I have always had a good diet, including B12-rich foods.
I read your post with interest, and thought I would respond, purely anecdotally, on my on experience. I became seriously ill whilst working in Community Nursing, around 7 years ago. The final straws were passing out, and also driving the wrong way down a one way street. My GP said he would test for iron deficiency, and I casually said, I don't suppose it could be B12, (simply because of my patients), so he agreed to test for that too. Tests came back with no reading for folate, low ferritin, and one of "the lowest B12 readings" my GP had ever seen. Phlebotomy had described the results as chronic malnutrition as other levels were low. Had lots of tests, no cause ever found. Fast forward to an appointment I had with a brilliant psychiatrist, around a year after diagnosis, for an unrelated situation. He asked about my medication, and as my husband said at the time "will never forget the look of horror that went across his face" when I told him that I had been on the antidepressant Sertraline for 10 years, and prior to that , Amitriptyline . He was appalled, and stunned. He had much to say about GP's prescribing of antidepressants, and even more about how antidepressants mimic depressive symptoms after around 18 months. So, with his encouragement
, and the aid of a superb book called Coming Off Antidepressants, and huge support from my husband, I weaned myself off. It took a whole year, and it was pretty grim.
Long story short, I am convinced that the Sertraline caused damage to my absorption, as in effect I was a drug addict, albeit a prescribed drug addict. I work very hard at my nutrition, diet, and exercise now, and meditate every day. I take no prescription drugs, but I am very very cautious about even pain relief. If I had known what I know now, about antidepressants, back in my 20s when I was first prescribed them. I wouldn't have touched them with a barge pole. But that's just me.
My situation seems so similar to yours, that I was compelled to reply, so sorry for the ramble.
Well done for working it out and getting off. I was on less, but for approx 15 years - amitriptyline, gabapentin, tramadol, venlafaxine. I've read it can be the gabapentin depleting Bs, esp folate and B12, and the neuro problems for which that lot were prescribed were unfortunately an underlying B12/folate deficiency. Much better now (took about 8 months to get off, 8 years ago), but with lasting damage and still reluctant medics. I take no meds, but plenty of magnesium and supplements. The number of people with low B12 who take sertraline does seem particularly high but you have to wonder if it is chicken and egg - it is so ridiculously hard to get a B12D diagnosis, particularly if a genetic/functional deficiency, how many are being prescribed for manifestations of an unidentified pre-existing condition and made worse? Best wishes to you
Very similar to my history of treatment for depression and none of them helped it at all. Hence diagnosed as bipolar type two and treated with lithium that didn't work either. Then I collapsed and was rushed to hospital near to death and they diagnosed PA confirmed by antibodies. Only treated by injections every 3 months and that resulted in nerve damage so I took control and have been injecting myself every other day. Recently changed to every third day using Pasco 1.5 mg/ml.
That is apalling and I am so glad that you are making some progress now. If, and it is only if, Dr Chandy is correct or I understand him correctly, then the underlying undiagnosed B12 deficiency affecting folate cycle, methylation, DNA etc is what pushes us gently towards PA (and other autoimmunity) at which point we drop off the cliff. If you get the B12/folate as per your own needs, you shouldn't get to that point. It does seem terribly sad that the very common signs of folate cycle problems - anxiety, depression, nerve dysfunction - are the ones being treated with medications that may exacerbate the problem, and that the testing is failing us for a number of reasons (if it is being done at all).
I was pushed down the mental health route despite querying B12 deficiency many times. Anti-depressants seemed to do nothing for me and no-one listened when I said I think I need B12 injections. After being labelled with depression, psychosomatic symptoms, hypochondria etc. I finally started to improve both mentally and physically when I started to treat myself.
I completely identify with this Sleepybunny . Five years ago I took a now familiar list of symptoms to my GP which included everything from muscle pain, fatigue, burning hands and feet, tongue ulcers... She didn't even read it, pushed it back to me and said, 'I'm not interested in that - tell me about your mood problems.'
I didn't have mood problems other than being completely fed up that I couldn't get on with all the things I wanted to. I refused antidepressants and I suspect was written off at that point as an attention-seeking hypochondriac.
Thank you all so much for sharing your experiences it gives me confidence that my theory is correct and I'm not alone.But it's a huge concern that this could happen to us all. I've always felt pressure from gp's to take anti depressants but not one of them advised me to take supplements or regularly check for deficiencies! I feel that my life could have been very different if I had known 😕
So do I. Its clear that in my case I would be doing well, in some case spectacularly well such as wife, two great kids, own home , active in politics, lay magistrate, prison visitor, etc. then B12D creep up on me and I lost the lot.
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