So, I was diagnosed last year by a PA expert with functional B12 deficiency PA (non-autoimmune), and initially responded to 1ml B12 SI every other day. Then we consulted after 10 weeks or so and he asked me to reduce to every third day. I started to get an increases in symptoms after a few weeks. So we consulted again and I'm back to every other day. This was early December. I now feel just the same as I did before B12 injections.
Chronic fatigue and brain fog is my biggest challenge. Second is my GI tract and intermittent pain, bloating and such like (intermittent IBS) and lastly, I worry I have swollen ovaries which press on my bowel. I have really learned to look after myself, physically, emotionally and mentally over the years. I think this masks how bad things can really be, and to others you look just fine, and I'm really not...
So, I'm thinking pre-menapause, thyroid, and whatever causes chronic fatigue.
ORRRR, is it just PA and can it really take much longer for b12 injections to really work. My ferritin levels were checked late November and they were lower than before the diagnosis. My private consultant wrote to in my letter to be shared with my GP "...you don't need an iron infusion, yet" and to "monitor this (along with folate levels) in 6 months...
I don't have the funds for a private functional doc and work up/tests which would be upward of £600 I imagine. I am exhausted with fighting for help from my GP's, (who refuse to prescribe more than 5 ampules at one time!!!) but am considering moving GP's to try and get a more responsive service.
Can anyone help me learn where I can turn to for support from other support groups, experts, etc? Does anyone feel this way after starting injections - better, than bad again?
Feeling tired and fed up with feeling fed up, and its NOT winter blues. 😔
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Beccy_123
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Sorry about your situation, it's sadly all too common in the UK.On that point , I will say moving GP won't guarantee that you would receive more than 5 ampoules a time , in fact , you may find that you have fallen back down the snake again and get resistance about prescribing from a new GP whom doesn't understand the situation and wasn't in contact with your Consultant from the start.
You should request tests to rule out the possibility that some of your symptoms are being made worse by something else.
We can all have more than one condition at once , no ongoing symptoms should just be brushed off as " just" part of your PA , or anything else.
I would suggest that you request the GP to test your Iron/ Ferritin panel, Folate , and do a full blood count and thyroid panel with thyroid antibodies test now. You have the right to request these tests , and with any chronic health condition you should be monitored and have the iron, folate and FBC tests every 3-6 months anyway as part of your Primary Care.
You should also request a Vitamin D and a Magnesium test if you haven't had these in the last year. You have the right to request them , and as these nutrients can be low or Deficient because of absorption problems linked to B12 deficiency, and they cause symptoms of their own including more Fatigue , joint pain , palpitations and various nerve issues like numbness and pins and needles it's important to know what you current levels are.
Finally , if you feel there is a problem with pain or the position of your ovaries causing symptoms this should not be taken lightly by your GP either. You should speak to them about symptoms related to your hormones , thyroid and gynae symptoms and request to be referred to Gynaecology to rule out the ovaries having effect on your symptoms.
Request copies of you blood test don't just rely on the surgery reporting things as normal. They will do this and class it as requiring no action even if your nutrient levels are low or borderline , but low levels do cause there own symptoms, especially if you already have B12 Deficiency, and it could indicate that the levels are going down , not stable . If you catch these low levels early you can begin supplements to prevent the figures getting worse and treat the issue with Preventative Care rather than treating a deficiency which is harder to do . Even if you will be likely to have to organise the supplements yourself.
If your iron is low you can also use this proof to discuss beginning a Iron infusion sooner , rather than later, to reduce the effect on this before your follow up at the clinic .
Be polite , positive but firm with your GP and if they refuse something request for them to explain the medical reason for this refusal . Often , this brings a very sudden Uturn in their decision especially if you back up your requests with a reminder that you need these things done as part of your Preventative Primary Care .
you don’t say what your folate and ferritin levels are? This is easy to treat yourself if necessary. Ovaries should be checked by Gynae and GP can do a ca125 blood test. You can SI cheaply for B12. Have you had thyroid and FSH levels checked? Gastro referral for bowels. And try low FODMAP diet.
I am being advised re ferritin and folate, and supplement for folate, but advised not for iron (private consultant - expert in this field), CA125 is normal, I inject every other day for B12, I have had basic thyroid levels checked - normal - not had FSH I dont think, I have had tests for the usual bowel cancer, inflammation, and bowel disease. I have diligently tried , FODMAP, high protein (meat), high fat, low carb, vegan, and every single 'diet' you can imagine in the past 20 years, have been gluten free for more than 20 years, and currently have found what I eat is working for me, and is broadly a vegan diet and while I am eating the richest diet I have ever been able to tolerate, and my GI is the best I have ever experienced, I am still far from healthy in this area.
Chronic abdominal pain, GI issues, neurological issues, etc can sometimes be a symptom of something more complex. I was initially treated for vague B12 deficiency symptoms but had a life long history of random abdominal pain. Then insane tachycardia hit and I was screened for pheochromocytoma, which was negative. Now I’m being tested for the acute hepatic porphyrias. I’m sorry you’re going through this. Best of luck!
I completely concur with Blearyeyed here. There seems to be an inability by the medical profession to accept there may be more than one thing at a time going on with our bodies.
From personal experience and having had persistent issues with raising my vit D levels, it also might be worth speaking to your GP about the menopause, particularly if you're in your 40's or above. HRT hasn't solved all my issues, but it's certainly helped!
If you're having abdominal, indigestion problems, that could be low stomach acid. Doctors totally miss this, in my experience. They even misdiagnose it as too MUCH acid and try and prescribe anti acids. But consider that this low stomach acid could be why we have an intrinsic factor problem in our gut to begin with. If I didn't take betaine Hcl daily with all my meals, especially with protein meals, my stomach and gut would be a mess. An alternative healer spotted this problem in me in my mid 30's. Usually, it effects old people. It's called: Hypochlorhydria, a deficiency of stomach acid. Good luck!
I recognized this decades ago and raised my HCL levels by eating plant based and drinking juiced celery daily for years. the acid symptoms returned immediately post covid-19 infections in a 9 month period - I got rid of these quick using pylopass - it grabs onto the h-pylori bacteria and it passes harmlessly out of my system
Taurine is also very useful for gut health. Around 500mg a day. People on omnivorous diets get up to 400mg a day but usually much less. The Japanese are an exception with very high intakes due to seafood.
"Effect of taurine on ulcerogenic response and impaired ulcer healinginduced by monochloramine in rat stomachs" : onlinelibrary.wiley.com/doi...
From what I've read of it, there are virtually no known negative effects and many potential positives so I take 500mg daily (I have very few good Taurine sources in my diet). My gut is very happy these days but I've spent the last year dialing in my nutrition properly (diet first, supplements second). I think Taurine played it's part but I can't be sure
Taurine synthesis is also important for bone mass,and is impacted by B12 deficiency, so there is a potential link to Osteoporosis (if you needed a further reason why Taurine is important).
VERY INTERESTING! I was actually adding in more protein lately as I remember feeling better a few years ago when taking branch chain amino acids - I eat clean , vegan mostly, so I will look at this in more details - thank you!
The subject of protein in vegan diets is a complex one with some differing opinions from nutrition experts. I think it depends a lot on your age, your level of physical activity, your current physical strength and exercise regime, and your concerns around longevity. A broad guideline thats often mentioned for protein adequacy is 0.8 grams per kilo of bodyweight. Some experts advise up to 1.4-1.6g for very active people. This is disputed and I think mostly disproved by the experience of athletes such as Robert Cheeke : from 57:34 of m.youtube.com/watch?v=DLQWs...
In general, three servings of legumes (can include soya milk or tofu), handful of nuts, assorted seeds and optionally a little bit of protein powder should usually be sufficient. For proper amino acid ratios, the balance of foods is important - around 25% whole grains, 25% protein rich foods and 50% fruit+veg. This is because some foods are lower in particular amino acids than others but this balances out by using different kinds like grains + beans. You dont need to "food combine" religiously at meals but just take a look over the day to see if you get to roughly somewhere in that general area.
I have additional resources on protein but I dont want to spam the thread so I can pm on that if you like.
In terms of comparison, Eimele has Calcium and Iron where Complement has only Magnesium and the Sunday Natural has a lot more Calcium (400mg). Eimele and Sunday Natural have slightly less Vitamin D and Eimele uses Cyanocobalamin B12 while Complement has a Methylcobalamin/Adenosylcobalamin 50/50 mix. The Sunday Natural has less B12 than the others but in a three natural form formulation(hydroxo/methyl/adenosyl), but no Omega-3 EPA/DHA unlike the other two. So pluses and minuses and one may suit your individual nutritional needs better than another.
Here also are three other good options that are closer to a normal multi in terms of what they provide:
I have tried a few but not these. Thanks! I eat vegan due to what feels right for my body. Meat, eggs, animal products seem to really screw me up and make the whole chronic fatigue picture much worse. Long term B12 deficiency I think can lead to all sorts of deficiencies and imbalances... hopefully a healthier gut lining due to repeated EOD jabs will start to readdress these... and buckets of plant based home made food! My favourite brekky ATM is a huge bowel of oats with chia, flax seed and hemp seed powder, plus raw honey. The second brekky is a fruit and left over oats smoothie, with more hemp, oats and flax... im like a hobbit lol!
Also, if you want to test and treat your iron /ferritin problems you could get a test done privately with a finger-prick sample of blood, and you wouldn't need to pay for a doctor :
Thanks! I have just changed GP practices and will request this - Im sick of paying for tests myself and my supplements and clean eating approach cost me hundreds every months already - but I am totally prepared to continue to DIM (do it myself) if I get no joy. I have joined the forum and have 3 weeks before my first appointment with new GP and will be more 'armed' for this one!
Have a look at my reply today to Quertystar's post Unstable Feet (from 2 days ago ?).
I also have had a functional B12 diagnosis.
I have never paid for any of the many tests that I have been given - except for a full panel thyroid test early on - simply because TSH and FT4 were the only tests available on NHS and I wanted a bigger picture that included autoimmune thyroid conditions. Two of my sisters have Grave's disease.
I have never met a PA expert - but was lucky enough to meet a senior ENT consultant who recognised B12 deficiency on sight without having to test for it. He told me to continue with my every other day (EOD) injections and that I would eventually see improvements.
Just that reassurance that I was on the right track was life-saving to me.
thanks - how long before you had noticeable and long lasting improvements which you believe were a direct result of the EOD injections? Im still EOD and feel more 'stressed' in general. Obvs I will investigate thyroid and hormones in general... I have many tools in my tool box for self regulation and am a wellness coach - but I feel I'm missing something - which may indeed simply be patience! More tests hopefully in 4 weeks time!
The very first acknowledgement was that everyone told me that I was visibly getting better. This was after the GP increased my injections to twice a week, which is why they continued for so long - they were working. She was delighted.
The first time I felt any difference was about three months later - the first time I actually felt that I was being injected. I was beginning to doubt that the reluctant nurses were really doing them. It didn't hurt - it's just that I knew it had been done and no longer had to ask. That was my signal that the injections were working and I was delighted.
Real improvements took a long time and I started self-injecting EOD. Symptoms were gradually reducing in severity and/or frequency. Some did not come back. A bit of a bumpy ride, and sometimes quite disheartening. Kept thinking "This isn't really working. Maybe they missed something."
So glad I listened to the ENT specialist's encouragement and carried on.
I felt able to drop back to twice a week over a year later.
By this time, my ferritin and folate had finally stabilised at a more healthy level, and my MMA had finally dropped down into range. My osteoporosis of the spine became reduced to osteopenia.
Some people find that they have noticeable improvement from the initial loading doses. For others, like me, it takes years. This does not seem to be based on any discernable difference, such as a lower B12 serum level, and no-one seems able to explain why.
M R Turner and K Talbot, Neurology specialists, published their findings in 2009 (Practical Neurology: Functional Vitamin B12 Deficiency) - they believe that those with functional B12 deficiency "may respond to repeated high-dose injections of B12" - which is fairly vague as far as medical advice goes but there isn't much else regarding treatment.
I have found that, if I try to reduce injection frequency further, it does not take long before I get worse and others notice. So I think this is where I remain now, managing my symptoms by containment. If that is all the B12 can do for me, then that's okay.
Keep a keen eye on what is happening to you, to your symptoms. Keep a daily record - even if only for yourself. Once improvements began, it really helped me to be able to look back and reflect on how far I'd come. How really awful it was.
I was totally honest with GP, nurses, consultants and this meant I was either treated with kindness and given support - or faced a dismissive attitude and, strangely, unfounded inexplicable suspicion. Luckily my GP continued to search for help.
Yes these I last had in July and September and the GP said they were normal, yet I was able to flag PA and was diagnosed on symptoms. I will ask for these to be repeated however and wonder if the evidence of PA can be discerned in tests now that I have been EOD on B12 since late September?....
Curious, what was your b12 level before your first injection?
also if you respond to the shots, ask to be trained how to SI or find a doc who will. Then self inject. Keep doing EOD and never let them tell you to stop unless you currently have a kidney or liver problem, b12 is not toxic.
I had the same suggestions to space them out and it never worked. After 2 years I still inject EOD. I'm so much better now because of it.
Because it takes time for b12 stores in the liver to deplete it takes time for you to build it back up and time for your cells to regenerate. Note: B12 is responsible for cell generation; our cells constantly die and regenerate.
Also it is vital that you understand that if the problem is B12 deficiency the symptoms can become permanent if not treated.
Read this article.
The key points are:
There are many things docs don't understand about B12. They are listed in Table 1.
That if left untreated (shots not provided frequently enough) the symptoms become permanent; thus frequent injections should be given until symptoms resolve.
Once you get about 8 months to a year into EOD injections, try high dosing b1. High dosing b1 is tricky. I used a guide from eonutrition. This helped with memory issues and fatigue, but I had to get my b12 levels up first. One thing at a time.
I have been supplementing with B12 and folate for the past 6-7 years since, and 5 tests since have all shown very high - obvs because of the supplementation - so there was no way to diagnose from bloods, and since Im EOD injecting - no way to monitor it ATM
Thank you everyone for your useful responses. So, I conclude so far that I may 'only' have B12 finctional deficiency PA and the symptoms may take many months or years to improve.... OR.... I could have more issues than PA. So the sensible thing is to discuss all my concerns and suggest tests to my new GP and insist on more investigation in case my concerns are right, and in the meantime, keep on with the SI, and be a 'patient' patient ☺️
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Could I have B12 deficiency or PA
I have ALL of the symptoms of PA and it is ruining my life. My GPs won't look further.
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