After yet another appointment with my GP today after 6 months of fatigue, balance problems, numbness and tingling in fingers, - to name a few. I have been referred for Cognitive Behavioural Therapy!!
My levels are high now as I have been supplementing b12 sublinguals (on the recommendation of a locum I saw) However I can't get through a full day at work, I can't take my kids out for the day, I can't do anything I should be able to do and have done up until December. My levels in December were 273 and I had low folate with numerous symptoms of a b12 deficiency I was only treated with folic acid.
In my desperation, I have joined the PAS since leaving the drs this morning and was given some steps to try next.
I've had enough of being told they don't know what's wrong (but they don't look elsewhere) Even though I've mentioned several times that I do feel better since being on the b12 supplements.
I feel like giving up...
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Awil
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Balance problems and peripheral neuropathy - demand a referral to a neurologist, in writing. Include the fact that you are worried about subacute combined degeneration of the spinal cord. pernicious-anaemia-society....
Awil I am so very sorry to hear of your problems. Have your printed off all the information for doctors on the PAS website? it mentions that having folic acid can make the tests give a false reading for b12 levels. the information also tells doctors about symptoms, tests and patient's needs? I wish I could help you more.
Don't give up, I was 7 years without a diagnosis and even after I received one the treatment was inadequate. I'm one of the cases that need more frequent injections, thanks to the PAS research will soon be providing some evidence as to why that happens. Things are moving but it feels slow when you're struggling with symptoms and the system. I took things into my own hands and started self injecting, things are much better now and who knows, there may be room for more improvement. The anxiety and depression caused by this deficiency make it particularly difficult to step back and plan your next move because you are plunged into despair, but you're just joined the PAS which means you're searching and that's good, I discovered a long time ago that being a passive patient only suited my doctors, not me! Good luck.
Your experience almost exactly mirrors mine. I've had constant pains in my legs, spreading to the feet and hands (lately elbows as well) as well as tinnitus and restless legs for many years now all of which I have lived with. I had the over 65s flu jab in November and in December started with balance problems. In January I picked up a bug which did not progress further than a dry throat and a few sneezes. By February I could hardly get out of a chair. I went the doctor complaining of low mood, brain fog, balance problems, exhaustion and headaches. Blood tests are "normal" apart from a couple which have shown slightly enlarged blood cells which has been attributed to alcohol although I do not consider myself a heavy drinker. I've been put on an antidepressant. Like you I have tried B12 supplements and my mood lifted and energy levels rose but are still well below where they should be with balance problems slightly better. I have also developed tremor and rapid heart rate with occasional dizziness.
Your last comment reflects exactly how I am feeling. Sorry I cannot offer more than the thought that you are not on your own. No consolation I know. I hope you get a diagnosis soon.
Don't despair! You came to the right place (PAS). I was also sent to a psychologist to learn to live with my 'psycho-somatic symptoms'. And now, many injections later, I am starting to feel like my old self again. Ups and downs still, and a long way to go. But: there is hope!!
Hi Awil , I never got a diagnosis for PA, I just got diagnosed with B12-deficiency (and D-deficiency, and gastritis, and a gallstone). The B12-deficiency, combined with neurological symptoms, is enough to get injections. Which are making me feel a lot better.
A little background: The way to test for PA is via Intrinsic factor (IF) and Parietal Cell (PCA) antibidies. Both my IF and PCA tested negative, so there is only about a 2,5% chance I have PA. I did self-diagnose hypochloridia (via the sodium-bicarbonate and lime juice home tests) - which is one of the other signs I might have it. Anyway, combined with the other diagnoses and symptoms, my internist says it's very likely I have some auto-immune disorder manifesting via the vitamin deficiencies - whether it's PA or Hashimoto's or something else. Auto-immune diseases are apparently notoriously difficult to diagnose. But: injections and D-supplements, as well as stomach management with the right foods and lime juice with big meals, help me hugely!
I just looked at your B12 value, it's low but not low enough to immediately qualify for injections. However, it is really in the grey area and I believe you would benefit from injections. A new serum test will not help, because you are supplementing orally. However (even though the supplements might influence that test as well) you could ask for Methylmalonic Acid to prove your symptoms are not made up. See: stichtingb12tekort.nl/weten... and stichtingb12tekort.nl/weten...
By the way, if you really feel better on the oral supplements, you probably don't have PA. I tend to feel 'slightly better' on orals than without, too, but they don't heal me enough, while injections do.
Oh, and if you get tested, you also want them to test for folate, ferritin and vit D. (Folate, iron (measure via ferritin) and B12 can mask deficiencies in one another). And TSH, FT3 and FT4 would not be a bad idea, either.
Thanks for your reply. After speaking to the PAS i am going to show my GP the new guidelines stating serum testing is useless and I need injections due to my neurological symptoms. I just really don't think my Dr will listen. I am seriously considering changing surgery as I feel they will all look at the system and agree with each other even see a different GP at the same practice. It's so frustrating as the locum I saw agreed that I was deficient but my Dr has totally ignored what she said.
Sorry for the late reply, I was away for the weekend.
I changed GPs as well, and indeed went to a different surgery. It's worth checking their ideas about B12 before registering.
Another thing: paranoia can be a symptom of B12D... Not saying you have that, but I do big time, and I found it helpful to realise that it is a symptom, and treat it as such and monitor its progress.
At My last gp appointment, he told me it was all in my head, phycosimatic [sp] and to goto our local mental health unit and ask for an assessment. I have totally lost everything in my life. My wife, my friends and my health. I have tried telling my gp that it's my physical symptoms causing my depression and anxiety as well as my change in behaviour. But he will not listen so I get no help. I now live on my own with NO support from anywhere, no one to talk too. My head is spinning. In so much pain. I have had blood tests in the past most come back normal apart from ferritin and iron. Both low. Never checked for b12. Been on metformin for over 7 years. Had two minor procedures that involved nitrous oxide. Not eaten properly since my marriage ended. Put on lots of weight. All I ate was chocolate, biscuits, bread and fruit juice. I loved life and loved helping people. Now I'm a mess in every way with no diagnosis, yet I have almost every symptom of b12 deficiency. Now I think back my symptoms began roughly 14yrs ago. I was never one for ever going to the Dr's. So just wrote everything off. Just had bloods drawn so will wait and see. Fed up of being told by every medical person it's in my head. Anxiety and depression can manifest all those symptoms. Dr. Offered me strong anti phycotic drugs and anti depression pills. I refused. At my wits end too.
I'm so sorry to hear that you've been treated this way too. My Dr tried telling me I was anxious or depressed and I said yes since I've been unable to live my life in a normal way but the other way round! I really hope.younfins some answers also.
Perhaps folic acid has not been suitable and you need folate itself to raise levels appropriately to ‘support’ the raising B12 levels. Folate needs to be at least halfway thru range. Also have you taken other B vits, in a Complex, as we need them all balanced?
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