I've just made another appointment with my GP now my blood test results are back. I'm told there are 'no abnormal issues', but I can't have a copy of them until I've spoken to the GP. (So no idea really!)
My symptoms all remain from my previous post over 2 weeks ago, hence me requesting a further appointment.
I would rate my GP amongst the better ones, but I wondered if I could ask of your advice and experience before my appointment.
1. I am going to ask for an IFAB test - how best to do this, as she is going to tell me my B12 is 'in range'?
2. How long do I need to have stopped supplementing before IFAB test? (I haven't had any B12 in tablet or injection since 5th Feb.)
3. I want to ask for a therapeutic trial of B12 injections - how should I word this? I'm going to do this anyway, but would like this to be with my GP's consent (then on my records) if possible.
4. My folate has always been top or above range without supplementing, yet my vit D consistently sub-optimal, despite 3000iu's a day on D3. I was thinking this could be indicative of a functional B12 issue, as I don't seem to be absorbing D well. Is this correct?
5. If the GP won't do an IFAB, is it worth me getting one from medichecks anyway?
Thanks in advance everyone. I'm hoping the end is in sight! 😊
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KBird01
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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 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Hi Sleepybunny - thank you so much for the info and your concern! I can't believe I'm back here, dreading another GP 'conversation'. Honestly, I could cry. It's possible my GP will be calling today for a telephone appointment, but I'm going to re-read as much as I can again from your links in the meantime - depending on how much my non-functioning brain takes in!
One quick question - when I have sent off for medichecks blood tests for Active B12, this has shown levels of initially 89 pm/L(37.5-188). Once I started any supplements, it's remained at >150 (top of range). Is it possible I can have PA/B12D with such elevated Active B12 levels?
"Is it possible I can have PA/B12D with such elevated Active B12 levels?"
Might be worth starting a separate thread with that question. I don't know the answer.
I know it's possible to have severe b12 deficiency symptoms with serum (total) B12 results that are within range or even above range.
Have you ever had MMA and homocysteine tests?
If you have the time and energy, you could look more into Functional B12 deficiency. This is where there is plenty of b12 in the blood but it's not getting to where it's needed in the cells.
Link about what to do next if you suspect B12 deficiency
Putting concerns in a short polite letter to GP might be more effective than a conversation with them and avoids confrontation. Keep copies.
The Summary of BSH Cobalamin and Folate guidelines includes the comment
" In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
I think this means if you have the symptoms, you should get treatment.
Do you have symptoms consistent with b12 deficiency?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
It's possible to get tests for PA privately in UK.
IFAb (Intrinsic Factor Antibody test) may give a false positive result if blood taken close to an injection. Some labs say to leave at least 48 hours after a B12 injection and some say to leave as much as 2 weeks before testing IFAb.
I'm not sure if high dose oral B12 could have the same effect on test.
NHS GPs may not accept results of a private blood test but I think they would consider testing IFAb themselves if a private test showed a positive result.
Thank you again Sleepybunny . I'll set up a new post with the active B12 question.
I have to confess I get a bit overwhelmed with the whole functional B12 stuff, especially with my brain fog at the moment. Hopefully someone can come up with a simplified version if I post the above.
My GP called just before you posted. Whilst she's determined to keep looking at this with me (at least I'm not being completely written off this time), she is adamant I don't need a therapeutic B12 trial, as my serum levels were 1500 (110-914), even though I said I was supplementing until 2 weeks before my test. On this basis she says I categorically **don't** have a B12 deficiency, even though I have described my concerns around peripheral neuropathy symptoms:
🔸 Extreme fatigue
🔸 Lack of concentration/forgetting/losing words
🔸Burning and tingling fingers/feet/face (rt side)/nose - feeling like cold water running down my legs
🔸Right eye twitching and numb-type feeling on my face and nose
**Folate** - I'm a vegetarian (eat dairy and eggs) and I guess probably eat the required daily amount, although I don't have any fortified foods. Just seems strange that my ferritin has never gone above 50 unless I've supplemented, but my folate is always top of the scale.
I have another appointment in-person with my GP next week so she can do some nerve tests. Just trying to decide whether it's worth sending off to medichecks for an IFAB or MMA test, as it's quite a lot of money if I'm not getting a definitive answer...🤷♀️
Thank you again - if nothing else, you and everyone else on here have saved me going completely mad!
I’m sorry you are feeling so rubbish. You have some similar symptoms to me. The tingling in lips, nose, feet and hands gets on my nerves. I paid for my own iFAB test (my b12 was low but not low enough for GP to order it). It came back negative but I knew that didn’t rule out PA. I paid for MMA test twice (weirdly by accident). The numbers are climbing but not high enough to be an issue. I then paid for anti-parietal cell antibody test. That came back positive, which meant an endocrinologist, with my family history and symptoms decided I had PA. I had to pay for a lot of tests but I do feel like it was worth it because it at least confirmed to one medical professional that I had a point.
As an aside I don’t know how old you are, but if you are over 40 and female it could be worth trying HRT. GPs seem happy to give people trials of that. I have recently learned that you don’t need to have mood swings or period issues to be in perimenopause. It can cause all of the symptoms you describe. Also have you had your thyroid checked?
Thanks for your reply Sparklyjenson . TBH I could probably put up with the tingling, but the fatigue and brain fog is completely disabling. I've been considering sending off for the Intrinsic IFAB and MMA tests from Medichecks, as I haven't had any B12 for a month now. It might not be conclusive, but at least I can try. Where did you get your anti-parietal cell test?
I've been on HRT for just over a year. My GP wondered whether it needed increasing, but I had terrible side effects to even a small dose increase, so that doesn't look likely to be the case. If you know where I can get a full body transplant, do let me know! I'm fed up with this one! 😆
I got the anti GPC test from medichecks as part of the autoimmunity profile 1 pack. It also tested other things I didn’t want but I couldn’t find it cheaper anywhere else. They only give a positive or negative - not a number.
I was quite frustrated with the MMA test from medichecks as the measurement units are different to most of the medical literature and studies and it’s not possible to convert the numbers.
iFAB - I got that from medichecks and I would use them again. Quick and easy to understand - positive above a certain number and negative below. They do give you the number which is better than Superdrug who just say positive or negative.
I got homocysteine from cerascreen. They provided a good report and give you the number.
Finally, the one that seemed to explain my exhaustion and its pattern through the day was a cortisol test from regenerus. Unfortunately my GP (and most others I think) aren’t fussed about low cortisol, but it makes a lot of sense to me.
It’s so frustrating and exhausting feeling unwell. I hope you find your answers soon.
"When a patients tests negative for antibodies, but Pernicious Anaemia is likely, this test can be used. 85-90% of patients with Pernicious Anaemia will have a high serum gastrine."
Thanks as ever Sleepybunny . No, I hadn't considered these tests. There's no-one in my immediate family with any autoimmune history though. (We couldn't afford it! 😆)
That's rubbish. You ought to be able to get your tests results as soon as they are available. But they will probably show high levels of B12 as you have been taking supplements. Which will throw a spanner in the works as your GP will most likely insist you can't have PA/B12D. Which you also think is likely. I think the chances of getting further testing is very slim. And will involve a great deal of stress - read about other peoples stories. And if you do suceed in your quest you will probably end up with just one injection every three months. It's like flogging a dead donkey. Sorry to be so pessimistic. Luckily you have this forum to help you.
Agree with above that it’s tough to get a GP on board when B12 IS below range and there are symptoms so even more of a challenge when B12 is in range with symptoms.
I think you say folate is high so that’s good as this will be used by B12 repair.
If your Vit D is low are are supplementing with 3000 IU per day, is this prescribed? Continue as I believe Vit D deficiency can cause similar symptoms to B12.
B12 deficiency treatment is symptom led so it’s important you keep a daily journal of your symptoms and how these respond to B12 injections.
Be aware that when you start B2 injections your symptoms are likely to worsen, referred to reversing symptoms, as your body begins to repair. This is common. Document the symptoms.
You are at a crossroads- either your GP agrees YOUR SYMPTOMS ARE DUE TO B12 deficiency or they are not.
If they don’t agree then listen to what they believe is the cause of your current symptoms and what treatment they suggest. A confirmation of nerve damage is in the right ballpark but it doesn’t seem to be the whole story - is the damage permanent? How was it caused? A reasonable proposal wound be to explore B12 deficiency until it is ruled out.
I think you say you are a vegetarian and that you have been able to raise B12 levels by supplements- oral and injection. You do not say whether you experienced reversing symptoms or improvement.
I agree with others that if you are suffering neurological damage then action is needed sooner or later. I think it’s very important that your symptoms are well documented with your GP and that the GP explains what they believe the cause for each symptom is.
I also agree that letters to GPS are priceless - they don’t get many and they do take note. But the most important and persuasive record is your symptom journal. I wound start one immediately if you do not already.
My GP practice is the same "but I can't have a copy of them until I've spoken to the GP". It’s frustrating but I always get a copy afterwards and go through it myself and more often than not I spot something and end up with a further consultation!
Thanks for taking the time to reply Wwwdot . Yes, I believe I had some alleviation of symptoms when supplementing (and some IM self-injecting), but I didn't follow a consistent regime as my GP's have all had a very negative response to me taking B12, but weren't prepared to either investigate further or sanction a therapeutic trial proper. As a result, I always worried about it and came off it when I knew I was due a consultation. Stupid I know, but as a usually very assertive person, I find it hard to deal with 'those' conversations.
I'm on 3000iu per day of Vit D (and take K2 also). The sun will be working for us soon, so 🤞 I can top that up a bit.
I really like the point about putting the onus back on the GP to come up with the explanation. I do feel so under scrutiny personally - questions yesterday, 'Do you have anxiety?' just leave me feeling we're off down another rabbit hole... Our bodies are so complex, yet it appears we're only allowed to have one issue affecting us at a time...
A personal view: if your GP won't sanction a particular test, if you get one done privately, will they take any notice of the result?
It's worth noting that the results are 'your results', not 'their results'. They may need interpretation, and I guess that's why they don't immediately offer them until you've seen the GP.
Once you start supplements then there's little, if any, value in repeating stuff.
In terms of monitoring functional stuff, then what has happened to your FBC? If your FBC values tend to 'normal' then the supplementation is working, although it might not be addressing every bit of your health situation.
Thanks for replying FlipperTD . I have been considering paying for my own MMA and Intrinsic Factor tests from Medichecks and do think my GP would be OK about it. She's generally great and whilst she is ruling out B12 (and perhaps she's right!), she is determined to find out what it *is*, rather than just what it's not. I've followed Sleepybunny 's advice and signed up to access my records online, so hopefully I'll have a better idea once I've seen my results. I understand what you mean about why they might not want to share at first, but just think it's a missed opportunity for me to ask any questions at the time. Ah well - onwards and upwards as they say! 😊
Thanks for your reply. If you're going to get an IFAb and MMA, I think it's worth asking your GP for advice before you do this, as you'll want to liaise with your GP once you've got the result.
I already asked her if she would do it and she refused, saying I 'categorically' don't have a B12 deficiency with my levels. She's willing to look at other causes, which is great, but not to consider B12 as one. Thanks again. 😊
Sooo... I've now picked up a print out of my latest results. Seems like they've been pretty thorough and included antibodies for coeliac, lupus, kidney function, thyroid function, liver, FBC, urea and electrolytes. All's pretty much unremarkable (I'm taking that as OK), apart from:
Ferritin: 26 ng/mL (10.0 - 180.0)
GFR: Below Range 88mL/min/1.73m2 (90.0 - 500.0)
Serum Vit B12 > 1500 ng/L (110 - 914) - I was supplementing and did an IM injection (~0.7mg) 2 weeks before
Serum folate - Above range - > 20 ug/L (3.1 - 19.9) - always high even though I don't supplement
Vit D - Tested in Jan - Think this came out about 55. Has never gone over 70 even at the end of summer.
Patterns - Ferritin has always hovered around 48, with 18 months of supplementing to get to 68. Was 48 with medichecks in Jan, now 26.
So I'm thinking Ferritin definitely needs looking at, although GP has classed this as 'in range'. No iron panel though, so I think that's what I'll need to discuss at my appointment next week.
Happy to hear any other thoughts you or others have.
The nurse practitioner ordered the tests, but didn't give any instructions. I've had coeliac test before (again, negative), so knew to eat gluten every day. She also never said anything about the Thyroid function, but fortunately I knew from checking on the Thyroid forum to have my bloods as near to 9am as I could. Does make you wonder how many inaccurate tests there are due to lack of instructions doesn't it?
You have good information in this thread. It is not you it is them. You have done well although not gotten appropriate medical treatment. And option that I have not seen mentioned is if possible you could consider asking someone to go with you. Not to be your advocate and make decisions for you rather to take notes which may serve notice to your GP you have a witness. Perhaps say due to your brain fog you want another set of ears to make sure you have all the information straight. I concur that a letter is appropriate and will cause no harm and might result in a positive result.
Thanks WIZARD6787 . I did once take my husband to a GP consultation, which is ridiculous, as I have a nursing background and he's a tiler! But that's how bad the relationship with my previous GP was. My current GP is actually pretty good and I do have more faith in her wanting to find a real solution, even if she's maybe a bit uninformed about B12. At least she doesn't try to shove anti-depressants on me every time I see her! 🙃
If you can't take someone with you, you could ask permission to record the appointment. I suggest doing this in a short letter, well in advance of the appointment so the GP has time to think about it.
If you have symptoms that affect memory/concentration then you would have a good case to do so on disability grounds. In any letter asking for permission to record, give a list of symptoms that mean you need to record eg memory problems/brainfog/fatigue etc. Keep copies of any letters/replies.
I suspect GPs will not be keen on patients recording appointments but I wish I'd recorded some of mine especially the ones where doctors were unpleasant to me.
Yes, I'll definitely think about what I need for my appointment. TBH, my GP is the best I've had. She's very respectful and wants to work 'with' her patients to get the right outcome. I do feel she's coming from the right place, so I just need to take some prompts and tell her I'll need to stop to write things down. I did this before and she was completely understanding. 🤞
Hi Scott-rock and thanks for your reply. My vit D is usually not much above 50, so is bottom of the range, rather than low. That's an interesting suggestion though. I don't think it covers all my symptoms, but there is definitely some similarity there. I shall add it to my list of things to be mindful of. Awaiting my printed results, so not sure what they've tested TBH. Thanks again. 😊
I had hyperparathyroidism before I was diagnosed with pernicious anaemia. You’d be surprised at the types of symptoms that can be attributed to it. I was so sick from it I was bedridden for 6 months before surgery. And had terrible fatigue, brain fog, bone pain and face tingles , pins and needles etc. horrendous gastrointestinal problems.
It even caused heart issues due to calcium deposits in my arteries. Thankfully loads improved after surgery and further investigations found low testosterone and PA with most recently MGUS. All autoimmune disorders.
Wow! You really did collect the full set didn't you? Glad to hear things have improved somewhat for you. That's an interesting list of symptoms, as I looked this up after your post and many of those aren't on the list of symptoms for Hyperparathyroidism. My GP and I are still keeping thyroid issues in mind, even though tests have so far been in range. But I guess that's another story for another forum... 😉
You can view blood test results on PatientAccess if NHS England (I don’t know about all of the U.K.). Wouldn’t always take away the need for GP follow up etc but gives you results ahead. You have to register for the website.
Thanks Confused01 . I've requested access to my records on our GP's SystemOnline, so hopefully that will be granted. In the meantime, I've just picked up a printout of my latest results. I'm one of those people who needs to see something in front of me in order to process it - especially at the moment, with my brain on a go-slow!
High or above range folate, as you say yours consistently is, could be due to functional b12 deficiency. If your body is not metabolising b12 properly then folate which is dependent on it can build up in the blood. So you end up with deficiency symptoms of both.
I experienced exactly the same as you and eventually gave up with my doctor. Most doctors can’t comprehend how you can have adequate or even high b12 (and folate) levels and experience symptoms of deficiency at the same time. I feel that if that hasn’t been taught at medical school then a non medic has virtually no chance of persuading their doctor otherwise.
When I began SI on a more regular basis my folate level which was initially high came down to mid range. My b12 is now always way above range. I feel much better but can’t discuss any of it with my gp. who still doesn’t accept that any of it is or was an issue.
Thank you MorningMist - that's very reassuring. So even if my 'Active' levels of B12 are high (because of supplementing) I could still have a functional deficiency?
That's very interesting about your folate. I've long suspected this could be the case, as whilst I have a reasonably healthy diet, there's no reason why it would be consistently so high.
Yes, I think I'm into the stages of ruling certain things out with my GP, then going on to do my own thing regarding supplementation and nutrition. Again, it's reassuring to hear your story.
My active b12 is currently above 256, over the measured range and I am still not completely symptom free. Yes you can have a functional deficiency at any level where there is a problem with b12 metabolism. And some people experience symptoms even when the functional tests MMA and Homocysteine suggest there is no problem with metabolism. I had normal MMA and only slightly raised homocysteine. A few forum members have previous posts about this.
Thank you again MorningMist . You guys are really saving my sanity on here. This has been my main worry, not that my serum B12 is elevated but that my Active B12 is showing above range of >150 and this was ruling out B12D. I've had a look on the forum, but couldn't find much about people who had high Active B12, so thank you for that.
I expect that not so much has been said about above range active b12 because it is mainly private testing that measures it. Nhs tests are usually for serum b12 but there are plenty of comments about serum levels of 5000 and above and that must involve some very high active b12 levels, whether measured or not.
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