hi everyone, just wanting peoples thoughts or advice on the following:
I had a B12 serum test done which showed my B12 was low at 188 on the 28th of august. This was repeated on September the 2nd and came out at 232 without treatment. My intrinsic factor was also negative. I have loads of B12 symptoms though which aren’t improving and past bloods test in May 2023 showed my B12 level to be 197. I have a good diet too. My GP says my B12 is in range and is not investigating it further. I am taking B12 over the counter. Any advice would be great, thank you.
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Hammy2024
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First of all , the blood serum test for B12 unfortunately contains inactive B12 which the body cannot utilise. This can be as high as 80 % . Better is a an active B12 test , which some surgeries don’t do .
Secondly a negative Intrinsic Factor Antibodies test does NOT rule out Pernicious Anaemia . All GPs should know this indisputable fact . It is mentioned in the latest N.I.C.E. guidelines on B12 deficiency .
As you are supplementing with over the counter B12 , it has obviously raised your B12 levels, without benefitting you . Most Pernicious Anaemia patients can only benefit from B12 injections , not tablets , sprays or patches .
Your symptoms must be treated . You must try again to get B12 injections . I would write a letter to your doctor at the surgery . Some members know of templates for such a letter . Your letter must then appear on your file .
I know how difficult it is to overcome doctor’s ignorance on this subject . Personally I’ve had to take to self injecting , because I was so unwell with horrible symptoms .
Absolutely, I completely agree. I just feel I’m banging my head against a wall. 2 different doctors this week looked at my B12 and said it’s normal now and that nothing else needed to be done. They told me my folate and iron levels were on the lower side and prescribed folic acid and ferrous sulphate, but weren’t prepared to prescribe B12 even though that too was on the lower side. I have thought about self injecting actually.
I will send you information on self - injecting . It is easy and cheap . ( about £2.00 for an injection. Everything included . I suggest it because it’s important for you to get b12 injections asap . It’s shocking that you don’t get B12 injections with all the symptoms you have .
You are unlikely to get very far on the NHS, unless you are very lucky. I recently had ferretin and related low scores sufficiently bad to be rushed for immediate cancer checks, which proved groundless. My GP was quite aggressive when I contacted him afterwards, stating firstly I needed iron tablets, and secondly asking what I wanted to be prescribed. He said there was no point in referring to a gastro specialist because they wouldn't see me.
I don't think we can recommend treatments on here because we are not qualified practitioners so all I can offer is my own experience. I saw the doctor at the Cambridge Iron Clinic, through the Nuffield Hospital. Not cheap, but he does seem to know what he is talking about. He identified my symptoms, and he was the first to reassure me that the recent cancer tests would come out negative, as the low scores were typical of B12 deficiency. My B12 scores are a little high if anything, but my body cannot utilise the vitamin, I am told.
The doctor taught me to self-inject and I supposedly take a B12 injection once a fortnight. Unfortunately, I have to say it is not working for me, but that is, I am hoping, a mixture of forgetting to take the injections (one of my symptoms are cognitive disorders) and that it can take up to two years, I am told, to have an effect and I've been on the treatment for about 18 months.
So I am glad I contacted the iron clinic in Cambridge, but cannot say for sure if it was the right thing to do.
We have a multi-GP surgery; all except one seem very cynical about PA. If I am lucky enough to get the one who seems to understand I usually get something positive out of it, otherwise it is a waste of time. But I understand that is the experience of many.
I would add that, if cognitive issues are present, NICE medical guidelines would suggest loading with every other day (EOD) injections until no more improvements can be had by doing so. This is the guidance for GPs if the B12 deficient patient has neurological symptoms. Perhaps you should discuss this with the one GP that seems to understand B12 deficiency.
Read the NICE guidelines about treating B12 deficiency. I also have cognitive problems and find that printing out a page or two and highlighting only the relevant parts might be useful to take with you to an appointment.
Folate, ferritin, vitamin D and thyroid can be affected if B12 deficient and should be monitored regularly.
Oh my, you are definitely having a rough time. I hope your injections are successful very soon. It’s so worrying how many people on here are struggling with this issue.
It worries me that some GPs are reluctant to treat B12 issues and even follow NICE guidelines on B12 deficiency. I’ve described all my symptoms now to two different doctors and because my B12 is now 232, they just say it’s in range. I worry about my cognitive symptoms and fatigue the most. I will definitely take your advice on printing a few pages and highlighting the main points for my GP review in 4 weeks. I think it’s something I’m definitely going to have to treat myself otherwise.
Your readings were very similar to mine, even in the way the B12 went up slightly and then back down! My lowest reading was 184 but then it went up slightly and back down. I did get the loading doses (6 injections in 2 weeks at the surgery) but then I was sent away after being told by a locum who had no clue about B12D or PA that B12 pills would work for me now. No more injections. I argued that I have more than enough B12 in my diet and must not being absorbing properly so a pill would do nothing. At this point, I felt worse than ever. You'll see everyone on here talking about reversing out and I think the 6 injections I had stared this process and I hit a wall. I expected to feel better and get back to work but I was a mess!
I found this group and a lot of people had seen the specialist in Cambridge so I did the same. First thing he said was that I 100% had B12 deficiency and that was from my bloods and symptoms, so I am almost sure it would be the same for you (although i don't know your symptoms I am sure you know yourself!). He was only bothered about the lowest reading. My folate was low and vitD/iron were on the low end too. I was taught to self inject and advised to supplement for iron etc.
I am almost 5 months into self injecting EOD and have recently failed twice to drop the frequency down because my symptoms return. But I am SO much better than I was in April. I could hardly function! I'm still not great, but much better. I completed a Masters between 2020- 2022 yet I was unable to remember words for basic things like counter and fridge and it was really scary. Couldn't be reading something with the radio on in the background. Social situations were awful because I couldn't tune out from background noise so after 30 mins I was exhausted.
What were your iron readings and any others you've had?
I’m just so tired and fatigued, I can’t be at work at the minute because I can not think, I feel foggy headed, I have tinnitus, I’m irritable, I have the bug crawling sensation, my vision is blurry, I feel light headed like I’ve had a few drinks. I have the issue with concentration too especially when there is noise, this just adds to the irritability. I have mentioned this to the doctor and they just tell me my B12 is in range now and my intrinsic factor is negative so it can’t be that. I have also test negative for celiac. I have a GP review in 4 weeks.
My folate level was 4.0 and my Iron level I think he said was 66. These are technically in range but he gave me medication for these so why not my B12. My B12 hasn’t gone above 250 in the last three years on checking.
You definitely sound similar to me in terms of symptoms and B12 levels, but it’s great that you have seen some improvement with injections.
I had exactly the same symptoms!! I had a really stressful civil service job at the time and it was awful - having to make life changing decisions when struggling to function!! Weirdly, your folate and ferritin are also pretty much the same as mine were in January this year. I would strongly recommend saving yourself the stress (that you really don't need as that will make you worse) of battling your GP and get started on self injecting.
I had all of your symptoms as well as being short of breath and terrible sleep issues. My tinnitus remains unfortunately but as long as I take things steady and inject every few days, take my supplements, I am generally OK. I had to quit my job though. Feel free to message me if you need any support as we have similar journeys and it may help to have some idea of what's to come (potentially, everyone is different).
Honestly this chat is the only thing that makes me feel positive about getting sorted. The GP has made me feel like it’s all in my head at the minute to be honest. Happy to write me a sick note though for work. Luckily my manger is a nurse and understands B12 issues, so she very supportive. Is there any recommended places to buy B12 injections, I don’t want to buy them from dodgy places 😂.
It's a lifesaver, literally. There's nothing wrong with you yet they'll write you a sick note? 🤔 I'm sure they'd prescribe you antidepressants in a heartbeat. Sorry, I'm just really cynical about the NHS these days. Feel free to message anytime! If you look back on the forum, Wedgewood had posted many times the links to reputable places to buy B12 from. I fought for B12 on prescription but I'm lucky and don't suggest fighting that battle unless you fancy the fight!! It took a lot out of me.
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