To keep a long story short, I have been suffering with the following symptoms for nearly 5 years now:
- Extreme fatigue (could curl up on the floor and fall asleep anytime of the day)
- Anxiety/Depression
- Poor Memory
I'm a 32 year old man but sometimes I feel like I'm in the body of a 90 year old.
I've been going to the doctors and had countless tests over the years. They tested all the regular culprits - Vit D, Testosterone, Thyroid, Iron etc - everything came back "normal". The doctor even tried me on anti-depressants which just made me feel like a zombie.
One thing that got my attention were that my B12 levels were 311 ng/L (Range 200-900) and my folate levels were elevated at 20.5 ug/L (Range 2-17).
I tried to make the argument that both my Mother and Grandfather have pernicious anaemia, I have IBS (which affects my ability to absorb minerals from food), I have 75% of the symptoms of a B12 deficiency and I live a healthy lifestyle so there's no reason for my levels to be so low.
The doctor told me everything was "within range" and that there was no need to treat.
Just wanted to get some thoughts and see if there's anything else I can do?
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Jwal90
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Your doctor should know that you can still have B12 deficiency with a B12 result that is within range. It’s called Functional B12 deficiency . And with your history of a mother and a grandfather having Pernicious Anaemia , it’s possible that you do too , as P.A. is very often genetically linked . Try to get your GP to give you a course of B12 injections ( for injections are the solution to P.A. ) B12 injection ampoules are really cheap . If you have no luck, you could try self injecting, which is what most of us on this forum do., because some P.A. patients cannot get injections often enough to keep symptoms at bay.There is an unsatisfactory test for P.A. called “Intrinsic Factor Antibodies test “ . BUT about 50 % of PA.patients test negative , and doctors then think that proves that they don’t have P.A. This is not the case .
If tested positive then that patient definitely does have P.A.
Your symptoms sound like PA symptoms
I was driven to self injecting , and must say that it changed my life . As a P.A. patient , they are FOR LIFE !
I’ll send you some information, in case you need it l
Thank you for the reply, any additional information would be really helpful. I'd love to know more about how it helped you as well, what sort of symptoms did you have and how did they improve?
I spoke to a private practitioner who comes over to your house to inject you. She said most countries consider anything below 500 to be low! She charges £120 for the initial course which is 1 injection per week for 4 weeks then £79 per additional injection which she says will likely be every 3-6 months.
I sent you information to your private messaging. Hope you received it.
I had the usual symptoms . Terrible tiredness . , breathless ness , confusion , anxiety , numb feet . But there are many many more symptoms and we all vary . I’d had symptoms for a long time and my B12 reading was 150 . 80 % of any b12 blood serum reading can be inactive B12 . My GP said all was well and sent me on my way . I consulted a private GP who gave me the IFAB test which was positive . I had P.A. . But my GP would only give me an injection every 3 months -totally inadequate The correct procedure is to have 6 injection over 2weeks . These are called loading injections . See if your practitioner can do that for you . Thereafter , you need an injection often enough to keep symptoms at bay . which you could do yourself , ( I’ve sent you that information) Self injection is really cheap about £1.60 everything included ! I’ve been self injecting weekly for 8 years . My feet are not 100% , but that’s because I was such a long time untreated . We are all different and need injections at different intervals . Get treated ASAP . Try your GP first , but it’s not very hopeful as they are very ignorant about P.A./B12 deficiency. You can get irreversible symptoms if left untreated . B12 cannot be overdosed . Some patients need daily injections. The sooner you are treated ,the better. Best wishes .
I'm not sure if Parietal Cell Antibody test is available in UK? But they should always be run together. Ask GP for both IFAB and PCAB test. 50% of those with PA will test positive for IFAB. The operative phrase there being "of those with PA" meaning 50% of those WITH PA will test negative. Likewise 90% of those with PA will test positive for PCAB. I personally tested positive for PCAB and negative for IFAB.
I feel you. NHS GP's and most health practitioners in general simply have no idea about B12 or any other nutritional deficiencies. They simply don't receive enough training on it, and so 'stick to the book' when it comes to looking at the numbers.
And since your numbers are 'within range' it leaves them stumped as to what's wrong. And if they don't know what's wrong they'll put you in the default bin:
- Work stress
- Depression, anxiety, emotional worries
- Health anxiety
The problem we face is that the medical community are frankly ignorant of the impact of nutrition on well-being - emotional and physical. But their work is now cut out for them since nutritional deficiencies are on the rise from our stressful, processed, polluted world.
I think you have two options.
1. You wait it out for your levels to drop further and into the deficiency zone, which of course is in no way ideal since you're struggling with symptoms. If it is PA, then you'll get a medical investigation, diagnosis (hopefully) and then lifelong treatment.
2. You go private and get tested. NutrisViapath is a good option if you can afford it, to get completely tested. They can do active b12 (to see what's in the cells) but also MMA and homocysteine (which increases if you lack B12).
You can walk into St Thomas's hospital if you can get to London, or I think they do them by post. nutris.viapath.co.uk/pages/...
Once you start self-treating with supplements or injections, you can't really go back. So I would see that as an absolute last resort. Now is a good time to get checked privately, then either go back to the Dr. and if they're open to the results they may give you treatment.
Otherwise, it's likely to be a long wait for your levels to drop
This is really helpful, thanks for taking the time to reply. I did respond to another user here saying I had spoke to a private practitioner and she can help with getting my levels back up.
Do you think it's worth doing the additional tests? Could I just use the B12 as diagnostic, if I take them and my symptoms improve then I know B12 is the issue.
I really don't want to wait for my symptoms to get any worse. It also scares me that low B12 can cause permanent damage.
The problem with raising your levels now is that they will distort any test results. And if you do have PA you won't find out for sure without the right tests. Once you treat, you lose the opportunity to investigate what the problem is.
If tests reveal you do have PA then at least you know and you can get NHS injections. Even if they dont suffice, you will still have it on your medical record. And you can top it up with self injection.
Its just that I took from your post that there's a strong suspicion of PA. And if you self treat then you may never get a diagnosis, or find out the root of the issue which may need other treatment (gut dysbiosis, SIBO, PA etc).
If you were vegan or veggie then Id say go straight for the treatment! But maybe youre content with knowing you have IBS?
To be honest, I'd given with researching more into the IBS. There are so many possible things it could be I found myself getting stressed about it which of course made my IBS worse.
If I was diagnosed with PA would they treat it any differently to having a B12 deficiency? If not, I might as well start treatment
I can only imagine. My wife suffers from it too and it's torturous for her. Stress is a big thing to set her off! So we try to avoid it.
I think it depends on how severe your symptoms are. If you're doing one jab a week for 4 weeks, it could be enough. But NHS is 6 over 2 weeks so you get sky high levels and maintenance jabs to keep them there. Your body needs this huge injection to sort out the damage that's occuring.
I've heard of other cosmetic services where they do the same - loading doses at 1 a week for 4 or 6 weeks. If you're brave enough to self inject, you may find you need to do that too.
Sounds like the jabs are quite pricey - £79 per jab? You could spend that on the private tests first, at least, just to see where your active B12 levels are and to understand if B12 D is really the issue and not something else.
Using an NHS laboratory via an organisation such as ViaPath is a sensible approach if you're not getting access to what you think you need via the usual GP route.
Don't send samples through the post, or use 'finger prick' samples either, if you can avoid this. Although both of these are available, the closer you get to the site of the testing, the better, and venepuncture gives better sample quality. Much of the time this isn't vital but it simply reduces the artefacts.
One thing I was considering to treat the IBS was FMT which appears to be the gold standard of treatment. I won't explain it here but a quick google should show you. Private clinics charge a lot of money for it but I've seen many people reporting DIY methods which have been equally effective. It is gross but it has a success rate of up to 75% and might be worth looking into for you wife.
I did save some bookmarks and can dig them out if you want them.
I was sent some fantastic information by wedgewood regarding self-treatment for B12 so I might have a go at this, I've injected before when I was briefly put on TRT so that doesn't bother me.
I was talking to the GF last night and agree with you that it's worth being a bit more patient and getting some more clarity by taking the test before trying to treat anything. Just a shame I have to trek to London to get the bloods done! There is an option to get them done by someone else but not for this test, apparently.
Don't suppose you know of any other companies that will do self-collection such as Thriva who I've used before?
Of which, this is the second and seems most relevant. But possibly sensible to listen to all three.
Dirt and Development
James Gallagher uncovers the intimate relationship between our healthy gut bugs and our body's response to them, which could set us on a course of good health or chronic disease.
There's a number you could call to ask how it works when they post them out. It says you can go to an authorised clinic with the postal kit.
And as FlipperTD states, a fingerprick test probably won't cut the mustard. You'll need a clinician or nurse to do it. So maybe call or email the nutris viapath and they can tell you where your nearest clinic is to go. They're a major NHS hospital so Im sure they'll be able to set it up for a hospital near you to do the bloods and they or you post them back
Thought I'd provide an update for anyone interested.
I've been going around in circles with my GP but he did eventually agree to refer to a consultant. Frustratingly, the consultant came back and said he agrees with my GP and doesn't feel like treatment is necessary.
However, "given my concerns", they are prepared to do further testing and so I have blood tests for Homocysteine, Methylmalonic Acid and Gastric Parietal Cell Antibodies on Tuesday.
Unfortunately no Active B12.
So hopefully that should shed a bit more light on the situation
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Frustrated..
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Feeling Worried and Frustrated
So frustrated I could cry
