Hi everyone, I’ve had ID anaemia (microcytic hypochromic) for over 20 years and was told by a GP many years ago that this was due to malabsorption. I’ve had hypothyroidism since 2014, long covid for the past 2 years, and a vax injury from March 2021 that is only just being investigated by rheumatology, and may have caused nerve and/or tendon damage to my left arm/shoulder as I can't lift or rotate it. I also have undiagnosed ADHD, and there’s a family history of anaemia (mum and sisters). I was prescribed ferrous fumarate 305mg in 2014 and have been taking it ever since. Despite this, my bloods came back ‘abnormal’ year after year (e.g. Hb104 g/L /Serum ferritin 9 ug/L in 2020).
This was finally investigated in Sept 2020, when I had a gastroscopy and colonoscopy, followed by the removal of a uterine polyp by hysteroscopy. Since then my bloods have improved slightly but are still on the low end of ranges and no further action has been taken, despite my symptoms.
My LC symptoms were relatively mild until January 2022, when I got covid again and developed lots of new ones. I had a major relapse in July 2022 and haven’t been able to return to work since as I’ve felt so unwell. I have lots of different symptoms, including neurological, and many of them are identical to signs of B12 deficiency. Current symptoms are cognitive dysfunction, extreme fatigue, inflammation, headaches, tingling/numbness/burning and shooting pains my arms, hands, and fingers, tingling in my face and tongue, tinnitus, dizziness, muscle weakness/stiffness, lower back and sciatic pain, joint pain, blurred vision, shortness of breath/wheeziness and temperature dysregulation. Some symptoms relapse and remit, others are constant and I sometimes get them all at the same time. My sleep is also poor as the pain and numbness in my arms wakes me up and I often can’t get back to sleep. I also have low BP.
Most recent test results are below and all ‘within range’.
Serum vitamin B12 level 493.0 ng/L [211.0 - 911.0] (this was done in August 2022 while I was taking a high dose oral B12. I was retested yesterday, 4 months after stopping supplementation, and I’m waiting for the result. Serum C reactive protein level 4.12] Serum magnesium level 0.81 mmol/L [0.7 - 1.0] Intrinsic factor antibody level 2 u/ml [0.0 - 24.0] Parietal cell autoantibody level - Negative Serum TSH level 3.28 mU/L [0.35 - 5.5] Serum free T4 level 16.0 pmol/L [10.5 - 21.0]
I asked the GP for 2nd line testing and a B12 therapeutic trial in light of my symptoms (I gave her a completed B12 symptom checklist and other B12 deficiency info) but she refused. She then referred me back to the LC ‘management service’ who agreed with her decision. I have an appointment with them tomorrow, which feels pointless as when I saw them in Feb 2022, they ‘couldn’t find anything wrong with me’ and suggested exercise and mindfulness…
I changed GP surgery in November and requested further testing and a B12 trial, but was again refused, even though my symptoms were getting worse. In the 10 mins he spent with me, the new GP said that: “there would be things we wouldn’t agree on and that we’d have to respectfully agree to disagree”, “some doctors don’t believe that B12 deficiency is a real thing” and that if I ‘wanted’ B12 injections I’d have to find a private doctor to prescribe it. There is an iron clinic where I live, but it charges £830 for a consultation and treatment and I’m currently living on UC. As he ushered me out of the surgery he asked if I’d considered that I might have depression!! I said I was angry about not getting adequate testing and treatments, not depressed. I later checked my GP record and it said “Mixed anxiety and depressive disorder” - I note she's under CMHT. I cannot find any letters re malabsorption under the attachment mode”. I was furious and emailed the surgery to get them to correct my record as I’ve never been diagnosed or treated by MHS and some GP notes from years ago are missing.
After that, I decided to try SI and ordered a box of Pascoe B12 depot from Germany, which arrived yesterday. I’m now just waiting for the needles, syringes and sharps bin to arrive, but I’m a bit nervous about doing the first injection unsupervised. When I asked said GP if I could get the first one done by a nurse at the surgery or if they could show me how to SI, he said no. How safe is it for me to do the 1st one at home on my own? I intend to do SC as I can’t face IM. Are there pharmacies or other places I could get the 1st one done at low cost/for free? I live in Cambridge, UK. Thanks for reading this and for all the helpful info and posts that have brought me here!
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I have several autoimmune conditions and Pernicious Anaemia is one and my mother also had this condition.
My GP told me I can as many B12 injections that I feel I need. I have monthly B12 injection now instead of quarterly (I used to have it every 3 months).
My mother's GP told her she no longer needed B12 injections and both my sister and myself thought that was 'good'. It definitely wasn't a 'good idea at all as that decision (I believe) caused her early demise.
A diagnosis of Pernicious Anemia means injections for life. Withdrawing B12 in such circumstances is at the very least malpractice or other stronger words I'm struggling not to write here. You would be withdrawing something that is vital for life (vitamin) that someone cannot absorb from their diet because of this condition. The outcome of such a withdrawal is inevitable and foreseeable.
So sorry to hear that. The misinformation around this is really harmful. It's good that your GP is working with you on this. I'm really hoping the B12 will make a difference to at least some of my symptoms.
"Some doctors don't believe that B12 deficiency is a real thing " .......... ????
Luckily, the people who write the NICE (National Institute for health and Care Excellenece) guidelines for pernicious anaemia and B12 deficiency disagree. The new guidelines are due out in November this year.
Luckily, the people who write the BNF (British National Formulary) guidelines - the Doctors' Bible - also disagree.
Luckily the BCSH (British Committe for Standards in Haematology) also disagree.
Really luckily for us, Martyn Hooper MBE also disagrees - he is the founder of the PAS (Pernicious Anaemia Society) and was awarded the MBE in recognition of his work on our behalf.
He is also registered disabled , having been diagnosed as having sub-acute combined degeneration of the spinal cord secondary to pernicious anaemia.
This is an avoidable condition - if correct and prompt treatment for B12 deficiency is administered.
Totally agree. It's appalling, and the longer they delay diagnosis, the worse people get. I'll be making a complaint when I have the energy and can get my hear around it. I even gave the GP a summary of the guidelines for B12 diagnosis and treatment. GPs are making decisions not to investigate or treat based on poorly formed opinion, not science. The same happened with the practice physio, who decided that the problem with my arm/shoulder was me "looking for a passive fix", "fear of movement". Refused imaging and was really patronising when I said I thought it was nerve/tendon damage. He suggested exercise... The thing that is really concerning is that both surgeries are teaching practices for the university!
And so the problem goes on and on and on - since teaching is the only way that the next generation retain the knowledge of the previous one and build upon that foundation. Especially now that books are no longer the method by which information is preserved.
I know how debilitating restricted arm movement alone can be - I broke both arms at shoulder joint and both required further operations and intense physio to enable me to get back to work. Luckily not both broken at the same time !
No - ten years apart. The first one pinned (surgery), the second one debraded (keyhole surgery).
The first break I was told that I would never be able to raise arm - even before the operation by the surgeon. But with intense physio (17 one-to-one appointments) - I did, which meant I could still do my job.
The second break I was later given the keyhole surgery because of restrictions due to muscle damage, rotator cuff damage, bone particles etc. Clearing out the rubbish. This was a half-day outpatient procedure - I could feel the difference immediately on waking.
Not all breaks are as simple as 4-6 weeks in plaster and there is much they can do later. I was very lucky and got excellent care and support for this - which allowed me to continue to teach woodwork, including safe use of industrial machinery.
It was B12 deficiency which later put an end to my career.
"Some doctors don't believe that B12 deficiency is a real thing " .......... ????
I spoke to one GP who more or less said he didnt think B12 deficiency was a real condition. It was my first and final appointment with him LOL. Truly shocking level of ignorance.
I feel for you and your plight against a system of ignorance based on a lack of education or even a fundamental understanding of the human body. I was always a bit cynical of medics before, but since becoming B12 deficient it's confirmed my view that the medical system simply does not have a firm grip on internal biology, only external biology.
Most, if not all, chronic health conditions--I believe--can be attributed to the role of the digestive system and the nutrients we put into them. If medics and the general public did have a good grip on understanding nutritional science, we would regularly recommend increasing protein during times of stress, or even supplementation, to ensure sufficient B vitamins enable the body to cope. Zinc, cobalamin, folate and many more can take a hit during periods of chronic stress. But would a GP or Doctor ever tell you that?
No.
Because they haven't been trained in nutritional science - the fundamental basis of life. It's shocking really and of course an insult to our personal experience. Are we all 'full of health anxiety'? Do we all have phantom pains and aches?
I'm sorry you have had to fight so hard. But doing it yourself will at least put you in the driving seat.
You've obviously thought about getting the first jab in a cosmetic salon which is great. This way, you can see the equipment they use and how easy it is to do it. I personally prefer IM into the arm deltoids because I have very long arms and can see where the neelds goes in. SC terrifies me because I simply would not be comfortable injecting it into my stomach. We are all different, so find what works for you.
You need a 30G x 1/2 inch needle ( yellow )for sun -cut . On the German produced packs of B12 ampoules you will see that it’s suitable for I. M. sub-cut and intra venous injections . In the U.K. it’s only given by I.M . But many PA patients now use sub-cut .
Also it’s less intimidating for new self-injectors .
when I first started s.i I used to fit the needle to the syringe and draw up water then practice injecting on an orange,it gives a good feel for pressing the syringe plunger and helps get over that fear and gets you used to just handling the equipment needed,have a try! X
I couldn't agree more! Just imagine all the other things they don't teach them as medical students. The medics I've seen over the past few years have had little to no knowledge of nutrition (among other things) in addition to an inability to listen to a patient's lived experience. Doing your own research and SI is the only way to take back control, and sub-cut feels less intimidating as a beginner.
" I was prescribed ferrous fumarate 305mg in 2014 and have been taking it ever since. "
This is a massive Iron dose to be on for such an extended period. If you're taking it daily this could even decrease Iron absorption (surprising I know) due to increasing inflammation and something called Hepcidin. Some clinicians have pointed out that better increases in Iron are seen with lower doses, typically under 100mg, taken on alternate days rather than daily. The inflammation and gut damage causes by massive Iron doses can cause problems in and of themselves.
Your experience with that GP who diagnosed anxiety and depression is unfortunately familiar to me and others who experienced similar treatment. Pure gaslighting. Try to rise above their ignorance - you are not imagining your symptoms and you deserve proper treatment, don't give up and call them on their bullshit when you hear it.
That's good to know, and looking at my iron levels it doesn't seem to be doing much good. I was told to take 305mg x2 daily (!) but I've only been taking one every other day as I don't tolerate it well. By the sounds of it, even that's too high so I should probably ask for a lower dose.
Also consider other more well tolerated forms like Iron Bisglycinate. Although Iron/Ferritin levels can take a while to come up, if they're not budging in all those years it strongly suggests the dose regime is not working.
Good point. I now vaguely recall reading some research a couple of years ago about this and taking lower doses but my LC brain must have blocked that out! I'll ditch the FF and get some IB.
There is no one size fits all, take as much as necessary to keep folate in a good range based on labs. Many do fine on 400mcg daily, you may need more (or less) depending on how much folate is in your diet, any absorption problems etc. For example I eat 2.5 times the folate RDA so supplementation would make no sense for me (and I felt very poorly and condition worsened until I stopped all my folate supplementation).
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