Hi! I am now going to be starting Vitamin B12 injections in a couple of weeks, one every other day for 2 weeks then one every three months. I just wondered what others experiences are with these injections - how quickly did you start to feel better? Any side effects? And how is it after I finish the initial 2 week course? Do symptoms return, or does having them every 3 months after that help to stop symptoms returning?
For extra info - I’m in the UK and according to my NHS app the injection is called hydroxocobalamin. My B12 is 173 (range 197 to 771). My GP has also prescribed me with a course of folic acid to take starting after my 1st injection.
Please become a member of the PA Society so you have access to reliable information. PA/B12D is poorly understood. Keep a symptoms diary. Your symptoms are yours.
We can have a wide variety of symptoms. You can feel worse before you feel better. Nerves healing can cause more pain, burning, it I called the reversing out process. Recovery depends on age, length of deficiency, severity length of deficiency, other comorbid diseases. It is not linear.
Many of us cannot wait for the 3 monthly injection so we source our own supplies. Please get copies of your blood results in hard copy. I hope you had good ferritin, vitamin D levels.
Thank you! I will definitely be joining, although interestingly my GP doesn’t think I have PA as the test was negative… she doesn’t think it’s diet related either.
That makes a lot of sense actually regarding the reversing process. I’m 32, we don’t know how long the deficiency has been going on for, the first time it was tested was in December and it was low at 180, now dropped to 173 in blood tests done last week. Symptoms wise my main one is fatigue. I’ve had the occasional pins and needles like sensations in my fingers too but this isn’t too often and comes and goes - my GP isn’t even sure it is a B12 symptom but I’m thinking it possibly is.
I have the NHS app which shows all my results, and I’m definitely making sure I have copies of everything… my Vit D was last tested 12 months ago and was above range (I’ve been Vit D deficient in the past but was successfully treated) interestingly I had iron deficiency anaemia for the third time last year and was treated, however in 2 months my ferritin has dropped from 60 to 32 (range is from 30) but because nothing else in my blood count tests dropped my GP didn’t want to put me back on iron tablets just yet and said to see how I feel after they’ve sorted my B12… she thinks it’s my periods and has swapped my HRT to a patch to see if that will help…
Thank you for your reply and all your advice, so much to learn and take in.
Please get hard copies - I say this as a Software Engineer. I am unimpressed with the NHSApp, data is growing legs and walking off. Similarly, GPs and other Health Professionals cannot access all your data via their screens.
I am also a qualified midwife (women carry their own notes). I am unimpressed by your ferritin levels at 32 mg/L with PA/B12D. With B12D you need them well above 60 mg/L. They work in combination.
It is very interesting to read that your GP thinks it is your periods and has swapped your HRT to a patch. Very often women are fobbed off with antidepressants and hormones instead of being investigated properly. It is a cop out. You are 32, so of child bearing age.
If you had the Intrinsic Factor test it is only 50 % reliable. Martyn Hooper chairman of the PA Society had 4. Two were positive and two were negative. It is not quite as useless as a chocolate teapot.
Women can have all sorts of gynaecological issues because of PA/B12D which includes no periods, erratic periods, infertility. Menopause can trigger PA/B12D.
Many of us take a multivitamin/mineral to keep things ticking over. Doctors are not trained in nutrition /dietetics. Not their fault. They are trained in pharmacology. So, are out of their depth in this area.
Now, you had a history of Iron Deficiency Anaemia and Vitamin D deficiency. Why ? What is going on in your gut ? You need to have malabsorption illnesses excluded. Any family history of Inflammatory Bowel Disease ? Coeliac Disease ? Any Autoimmune Diseases in the family ? I hope you had your Thyroid checked too.
Thank you! I will be printing off all my results so I have hard copies.
I’m not too happy with my ferritin either. I’m tempted to just self supplement, especially if there’s a link between B12 and Ferritin. I’ll keep pushing it with my GP too.
I had a parietal cell autoantibody test done last week which was negative. Like you said though, I understand this can’t rule it out as the test isn’t accurate.
I don’t know what’s going on. I’m hoping that once my B12 gets sorted I’ll have the energy to push to get this all looked into more thoroughly to figure it all out, at the moment my GP doesn’t think there’s a connection but wants to keep an eye on me. I’ll definitely be pushing this more as I’m sure there must be something more going on. I haven’t had any stomach issues, my GP tested me for coeliacs disease last week but the TTG IgA was bottom of the range so negative… she also tested my thyroid hormone level back in December and that was in range too. I had Covid back in December 2022 and haven’t been right since then so it could just be all long Covid related but I don’t know. My Mum and Grandad (her Dad) both have MS, I’m under neurology myself because an MRI showed I have a cystic area in my brain but they think it’s something I was born with that’s quite common and nothing to worry about or cause any issues, they’re just keeping me monitored because of my family history of MS, and all my MRIs have showed no change. I’m actually due a repeat one later this year and follow up, I’m trying to get this pushed forward because of the B12 to ensure we’re not missing anything there.
Thank you again! It’s so useful getting real first hand experiences on something that’s so new to me.
Thank you… I flagged it with my GP cos it’s dropped from 60 to 32 in 2 months… she said that it’s still in range and because nothing else has dropped she wouldn’t put me back on iron… I’m tempted to ask for a second opinion next week because I’m not really happy just letting it go down like it has… thanks
Yep… my only real symptom is fatigue, so it’s really hard to know whether it’s my low B12 and what’s from my iron dropping, and I don’t really know enough to know how much if any affect the two have on each other… thank you
I SI'd EOD for a year and reached a plateau. I still had no resilience or any sense of a core strength. That's when I looked further at possible causes. Ferritin was bumping along the bottom. It was minimal and I've learnt to no longer accept minimal. I'm looking for optimal to feel anything like my old self. My GP didn't know how to respond to this which is why I had to pay privately. In my case B12D/PA and non-anaemic ferritin deficiency appear to be closely linked. How and why I've yet to discover. I hope to know more in April.
I’m so sorry to hear how much you’ve had to fight and push just to feel somewhere near normal… it’s horrible isn’t it, and I can only begin to imagine made so much worse when you don’t seem to get the help and support that your Drs could so easily give. That’s very interesting re a link between iron deficiency without anaemia and b12 deficiency… I’ve been iron deficient in the past but with anaemia, this is the first time without the drop of everything else… something I need to look into for sure!
Thank you. Yes I think I need to look into private testing and doing a full iron panel… my main symptom is fatigue and it’s hard to know whether it’s my low B12, low ferritin or long Covid (I had it back in December 2022) causing it!
Sincerest apologies Nicki-Lou92, of having to remind me of your history and family history.
There we go - long Covid related. 70 % of the immune system is in the gut so yours took a whack. So, lots of people who had COVID will have ‘poor nutritional status’. Having lack of appetite is only a minor part of the problem.
The virus has upset your gut microbiome. The good microorganisms are involved with producing and metabolising vitamins and minerals. But COVID really upset the good microorganisms, they have been struggling to do their job.
At present, I cannot find the research paper I usually post for those affected by long COVID which basically says the importance of a multivitamin/mineral in recovery.
No apology necessary! I’m grateful for your knowledge and support, and I’m so thankful my Mum and Grandad are doing well!
Ah that’s so interesting, and definitely something I need to look into more. It doesn’t explain why I was Vit D and iron deficient in the past but could certainly explain the anaemia last year and low ferritin and B12 now for sure!
I hope you soon see some improvements when your injections start.
Your GP appears to have put you on a treatment pattern for those without neurological symptoms.
If you have neuro symptoms eg brainfog, tingling, pins and needles, tinnitus, limb jerks, migraine, tremors, poor balance, dizziness, twitching muscles, memory problems (there are many other possible neuro symptoms) ..... there is a different pattern of treatment with more frequent B12 injections.
Search for this UK document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly including Background Information section. It discusses treatment ptterns in Management section.
Try to find the local B12 deficiency guidelines that your ICB (Integrated Care Board) in England is using (Health Board in Wales/Scotland) and compare them to NICE CKS document.
NICE are due to publish a new B12 deficiency guideline in March 2024. Search for "NICE draft B12 deficiency guideline" if you want to see what they are working on.
Your GP is likely to refer to local guidelines for advice on treatment/diagnosis. Some of them are not as helpful as they should be. See blog post below.
Vital to get adequate treatment. Inadequate or delayed treatment increases the risk of developing permanent neurological symptoms. In severe cases, the spinal cord may be affected.
I posted a lot of information that might be useful in the thread below.
Some links I post may have details that could be upsetting.
I believe that you need to continue with the B12 loading doses ‘until there is no further improvement’ not only for two weeks. You might need to fight for this.
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