I have vitamin B12 injections every 8 weeks but started having to reduce the length of time in between as found the 2 weeks were neurologically symptomatic.
I am now finding I’m hitting the 6 week mark and I am so fatigued and symptomatic it is getting me down. I had a blood test before my last injection and that has comeback in the mid range. My GP asked me if I thought it was psychological. I explained I know it is creeping in. Mentally- I feel the inability to function somewhat normally is getting me down.
I asked whether the intrinsic factor had been tested and she laughed saying that I would have to have a biopsy of my stomach lining. I thought it was a blood test???
Any ideas?
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Gloucester12
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Hi thank you for your response. I am on 8 weekly injections which does not seem enough.
I am now worried my GP does not have a clue. My original referral to the hospital was made by my dentist, due to painful persistent mouth ulcers.
I have had my iron , thyroid , liver function and diabetes check but told it’s all fine. I do have a blood clotting disorder so she is going to ask my consultant.
I have fibromyalgia too so not sure whether that can be a factor in it too? Also vit D deficient.
Did you see the actual results or were you just told they were all normal?
These day I don't trust what I am told about results unless I have a copy in my hand or on screen. In the days when I was very ill, I was told everything was normal/no action more than once and then found abnormal and borderline results on the copies.
Thyroid Tests
In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests that the GP can order (but are often reluctant to do so) eg TT4, TT3, FT3, FT4, rT3, TPOAb (Thyroperoxidase antibodies), TgAb (Antithyroglobulin antibodies)
I suggest putting any thyroid results on the Thyroid UK forum on HU.
Gloucestershire's guidelines on treatment of B12 deficiency have not been changed for years and do not match what is in the UK national guidelines. Worth comparing them with national guidelines.
"I asked whether the intrinsic factor had been tested and she laughed "
Unless your B12 deficiency is clearly due to diet then my understanding is that you should have been tested for PA. However IFA test is not very reliable.
Flowchart from BSH Cobalamin and Folate Guidelines
Thank you. Information very helpful. Just feel like my confidence has been knocked. As you know when you feel so rubbish you have no energy to fight. Just entering the 6 week phase- been in bed for 2 days now😢
IFA test is a blood test but it isn't very sensitive - so it gives false negatives a lot of the time (50% approximately) so a negative is a long way from ruling out PA.
PA is an autoimmune disorder that attacks the mechanisms in the ileum that allow you to absorb B12 so guess GP may have been referencing looking for this characteristic damage.
Sounds as if you actually need injections every 6 weeks but may be difficult to get your GP to agree to that.
there are very mixed views over whether its worth doing IFA - you may need to do it several times before you get a positive- false positives are rare (unless you have test too close to an injection/supplementation).
Getting a positive confirmation of PA means you know to follow up on other potential gastric issues.
Not sure who you mean by 'they'. Some doctors do prescribe more frequently than 8 weeks but other get very wary of this because the licencing is only for 8 weeks ... but that is to do with how licencing works rather than safety of B12 injections.
How many loading doses did you have at start of treatment?
In UK, people without neuro symptoms are supposed to have 6 loading jabs followed by jabs every 2 or 3 months.
Patients with neuro symptoms present are supposed to have every other day loading jabs for as long as symptoms continue to get better then jabs every 2 months.
There is no time limit on how long the every other day loading jabs can continue if neuro symptoms present although BSH guidelines suggests possibility of a review after 3 weeks worth.
Just wondering if you had recommended pattern for loading doses? See BNF link for details of UK treatment., also BSH link.
I was really shocked to hear that your GP thought that a test for the Intrinsic Factor antibodies involved having a biopsy of your stomach lining . It is a blood test . I despair to
hear that ........
Yes you must try to get more regular injections . If you don’t manage that , I would turn to self-injecting —Cheap , easy and convenient
. Once you have started B12 injections , it’s a waste of time to be having it tested . Best wishes .
I have 8 weekly injections but dip dramatically with neurological symptoms and severe headaches and exhaustion. Have you heard of anyone having them 6 weekly. GP claims they may cause damage but I’m not living 😥
Well I’m really annoyed to hear that your doctor thinks that more injections would be harmful . It is absolute nonsense . Read through the “ pinned posts “ on the right . You will find all the evidence you need .
Mind you my doctor told me the same . If you can’t get more frequent injections , you can
1- Go to a private doctor
2- Try a beauty clinic who offer B12 injections for weight loss ( nonsense of course )
2’-self inject . This is what I do once a week . It’s cheap and convenient . Costs no more than £1.20 if you buy in bulk . If you are needle phobic there is a device to buy which makes it less stressful .
So sorry you are suffering. Sounds like maybe your injections are way too long apart. I am at the two year mark and just switched to weekly injections and I feel worlds better. For the first year and a half I would sleep for an entire day when I got an injection. Idk if the injection knocked me out or if I just used up all my strength surviving while I waited until the injection. Keep in mind I have no medical training please.
You mentioned that you have fibromyalgia. There is a lot of overlap as well as PA can also be misdiagnosed as fibromyalgia.
As soon as I was diagnosed my doctor ordered an endoscopy and colonoscopy to check for problems that might cause B12 deficiency or that occur frequently in people with PA.
Any doctor who laughs at a patient should be fired.
I spoke with a doctor yesterday that told me to add folic acid and B6. He said without it you might not be getting the absorption even though it shows in your blood test that your numbers are in the middle.
Sorry about the late reply, only just found this thread. I suspect GP was being awkward/picky - presence of Intrinsic Factor is no longer tested directly (involves a nasogastric tube to collect gastric juice) and Intrinsic FactorAntibodies are tested instead (sometimes called anti-intrinsic factor antibody test) which is a blood test. Martyn Hooper's What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency is well worth a read. Best wishes.
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