Became very ill after years of stomach problems, exhaustion,hair loss tooth enamel loss, palpitations. Things really took a nosedive this October with non stop dizziness, dementia like symptoms, heart struggling upon the smallest exertion. Got a total b12 test from doctor came out as 597 ng/L.Went and paid for 5 b12 shots over 2 months because of the price in private clinics. 4 hydroxy and 1 methyl. Been supplementing like crazy with sublinguals nuggets,drops,patches and eating high meat and dairy diet to boost it for 3 months (don't find they help at all).Took the monitormyhealth test for active b12 And it came out as greater than 150pmol, no exact figure given. I hadn't had an injection for 3 weeks and stopped supplementing for a week. Not having an injection for 3 weeks was awful and I am now much sicker because of it, I have angina like pain and my heart issues are even worse struggling with movement because after 10 minutes my heart behind to ache and feel a weight upon my chest. All a waste of time. I don't find supplements do anything for me and the only thing that works is the injection for a few days then I'm back to feeling like I am dying. I am 34, here I am expecting it to be extremely low and find it's well over the range? Yet I still feel horrendous? Now I'm starting to think if its not b12 deficiency what's wrong with me and why do the shots take my dizziness away and other horrendous symptoms? I am bedbound most of the time and thinking is there something else wrong with me? I always have low iron no matter what I eat, my thyroid is normal but T4 is always borderline ( 12.4 2 years ago, 14.5 3 months ago, back down to 13.1 this week) t3 and tsh on the lower range but still normal not as low as t4. My zinc was low despite my diet being organic,mostly fresh highly nutritious food to handle my endometriosis. Would really appreciate some advice, I self injected last night but after having extremely high active b12 I am now worried am I masking another problem or is it because I have been supplementing so much (5000mg a day).
High active b12 reading from monitorm... - Pernicious Anaemi...
High active b12 reading from monitormyhealth.com
It's s matter of wading through ax many tests you can get.Perhaps you have functional b12 deficiency??
Have your b12 levels ever been low.
Folate vit d ?.
Mma testing .
Gastro and answer.
Is your autonomic function normal.
Have you read about the variations of
Ehlers Danlos.
My dsughter had yesrs of very poor health before a diagnosis of HEDs snd POTS.
Stemming ftom undiagnosed b1e deficiency megabolisyic Aneamia and folate deficiency.
Shd had terrible gut problems
So many symptoms overlap with so many problems.
Do keep getting thr tests to rule out things dnd hopefully get some answers.
If b12 relieving symptoms you need it.
Plenty of links posted on here to read through.
Keel you'd blood results on oapef of app.
Push for referrals.
Thank you I will look into mma and homocysteine seems another good option. I don't seem to have the symptoms of the illnesses described with joints et c that your daughter suffers with (poor girl) and the dizziness doesn't come with standing it just with physical exertion or sometimes stress, I get chest pains and lightheaded. I've never had active b12 measured until now so don't know if it's ever been low and the first time I had the serum measured was October so don't know if it's ever been low. It was by chance I found out about PA through a hairdresser on holiday who suffers and said my symptoms sounded like how she was before getting treatment. Hers was found by accident when looking for something else. The injections have saved me.
My vit d is optimal and my folate was 6.6ug/L in October, in range but the lower end, I've been supplementing and it's now 14.3 iu/L however that compares.
I have to continue to self inject because I literally feel I'm dying without it. It's all very complicated isn't it , there's so many causes and variations, it's maddening
It does sound like B12 and you've had a very similar experience to me. But I also lost the plot with confusion, delusion and paranoia and started to swallow sublinguals before my blood test.
Did you take any supplements before your blood test? Any multivitamins or similar?
The only other thing I self treated with, on top of Every Other Day B12 injections, was Benfotiamine (B1) since I had terrible nervous system problems and figured I had been stupidly eating alot of carbs in a stressful job and sort of become addicted to them. B1 is needed in greater amounts to convert carbs into energy. Also - how is your gut now? I think I had a severe microbial imbalance in my gut. Ive been taking Symprove probiotics and its really worked wonders.
Its two years on for me but the first 6 months of deficiency was utter chaos. I was injecting every other day for months and it wasn't really doing much, but behind the scenes you'll find that it is improving your condition. So, I would say, persist with B12 and be brave enough to self inject every other day. Try that for another 3 months and then see if you want to add B1 Benfotiamine (neither can you overdose).You may have a paradoxical response to B1 (i.e. you could feel worse before better) and if so you can lower the dosage.
Getting to the root of the issue can really help and for me it was diet and a messed up and very unhappy gut. Remove stress and try to sleep! But also treat the B12 correctly (EOD self injection with Hydroxocobalamin from Panpharma) and treat your gut issues to resolve that problem too.
Don't give up!
Thanks yes I'm going to continue because I am just too ill to stop. I stopped supplements for a week just continued with a topical magnesium, zinc and iron.I'm not eating much to be honest as I haven't got much appetite . When I eat its nutritious foods, iron for strength meat and yoghurt, avocadoes,pomegranates,kale.,eggs. Can't seem to eat many carbs which is unusual for me. My stomach has been messed up for years since age 15 that's when symptoms started. My stomach has been much better the last 2 weeks since taking hcl and pepsin.No bloating between my ribs, nausea and gas after eating which I just got used to as I would be robbed off with IBS even been though my bowel wasn't affected. I was told I had h pylori in 2016, it was never treated and a recent stool sample said it was negative. Last 2 weeks I'm taking Manuka honey, slippery elm in powder tea form and kefir, sauerkraut,plain yoghurt. I had a look at symprove, it's expensive but your the second person to recommend it.I think acid has a big part to play but I still need to find what causes the low acid in my stomach. The food just seemed to sit and ferment no matter how well I ate. Probiotics never did anything for me when I've tried them over the years. I have to eat very simply and not mix too many things in one meal (carbs and protein seperately, fruit before never after meals etc) I'm also chronically low in iron despite diet
Low iron and B12 deficiency often go together. You may need to see if you need an infusion rather than oral supplements to get you topped off. But once you begin B12 treatment, testing is not necessary. Treat your symptoms, not your numbers. I don't suggest this for everyone, but I have been on a very aggressive treatment regime of 1mg hydroxo injections twice a day for almost a year now. Frankly, it is the first time since I was diagnosed with PA that I have experienced real improvement in many of my problems. I often don't understand why many people will start to feel better after starting injections, then look to reduce the frequency, only to have symptoms return with a vengeance. I just accept that I need this much and will continue this routine. I am now weaning off PPIs and increasing my activity levels, walking up to 1.5 miles whereas before, getting to the end of the driveway was a struggle. Good luck in your journey to better health.
Thankyou for the advice I will continue,yes heard that ppis inhibit b12 absorption, I wonder if that caused your deficiency? Glad your getting better it gives me hope.
Did u get tested for celiac disease particularly since u mention stomach acid issues
No but I never sort of had typical celiac symptoms like diarrhoea weight loss vomiting. It's like getting blood out of a stone with my doctor, if ask them to test for celiac they wont
I too became very Ill after stomach problems, very similar to yourself, tinnitus, sore burning tongue, memory issues, palpitations, shaky, burning pains, migraines, visual problems, anxiety, depression, losing 2 stone with diarrhoea.
My B12 blood results showed they were reducing from 800 to 400 so GP said they were okay. I begged for loading doses and had six over six weeks. Some things changed. A private Doctor recommended injecting with methylcobalamin, shown how to self inject and started. A lot of things changed for the better but slowly but couldn’t get back to me!! Gastroenterologist diagnosed gastritis but nothing about deficiency. For years carried on injecting weekly and worked with nutritionist. A blood test with private clinic showed enlarged red cells but my GP said my B12 was okay and stopped my three monthly NHS injections.
I then went to integrative Dr who I thought could help. She treated me for SIBO but had me reduce down my injections eventually to three monthly. Did a urine MMA test which showed such a high need for B12, B6, magnesium and others. My burning pains had returned by then, together with louder tinnitus, burning tongue and slight memory problems, tiredness. The doctor said it was Neuro inflammation and gave more supplements. 😡
A light turned on again and told me I was going through what I originally did years before. Last November I started injecting B12 EOD and memory is much better, energy better, tinnitus is quieter some days but nerve pains and slight anxiety with them still there. I’m still SI EOD. I’ve not gone back to Dr yet until I have better news. I’ve booked in for a gastroenterologist who deals in malabsorption as the Dr was treating me for gallbladder as pain under right side.
From what I have learnt gastritis can be chronic or autoimmune stopping you from absorbing nutrients. I’m now in for an appt soon and hoping I can relate all this to the gastroenterologist and he will listen.
Good luck with what you do but certainly don’t leave it long and SI EOD while you find what’s wrong with stomach.🤞🤞
Thank you yes you I've thought could be autoimmune gastritis. Hoping to get a referral next month for gastro. I've had lots of help about SI did my first one 2 days ago as I couldn't continue to pay for them. Will continue as it's actually keeping me alive and I say that in all seriousness. Thanks for all the reassurance, the symptoms are so similar. It's like a slow bewildering terrifying decline, no wonder we all are pushed to SI. Thanks all
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