Hi all. I know that this topic has been covered here in depth but I still can't make a decision. I have been on injections since May and after a fight explaining that I should have had more injections than I have, (because of neurological symptoms) I am now on 8 weekly injections. However, after three weeks I feel awful and after the doctor agreed to a blood test said my levels are now 700 and they were 120 just a few months ago therefore the treatment is working. My MCV and MCH were still raised but they tell me that is also normal. Then one doctor said I had an iron (ferritin) deficiency yet the doctor today said that I didn't.
I am contemplating self injection but wondered if 700 is high enough to not need to even though I am exhausted and symptoms have returned. Any advise would be great. Apologise for lack of understanding with this.
Jan x
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JanetteWebster
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It tells GP bottom of page 4 under, "How is response to treatment assessed" :
"Cobalamin and transcobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment and retesting is not usually required".
In other words, once b12 treatment is started, the serum b12 test results are not reflective of how effective the treatment - it is the clinical condition of the patient that matters....
BCSH, BNF and UKNEQAS guidelines all also clearly state that there is no gold standard test and neurological symptoms should be treated without delay until no further improvement as follows: (the u in ug is an upside down h)
"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".
If you are still refused more frequent injections, you could ask for MMA urine test (see again BMJ research document summary and bottom of page 3) as this is judged more specific in diagnosing B12 def., as you will see that both MMA and homocysteine levels are high in B12 deficiency.
Bottom of page 4 - Response to treatment MMA & Homocysteine - levels should drop within first week of treatment confirming correct diagnosis.
The above BMJ research document is supported by many research papers and has a useful summary if GP won't read the whole document.
That's great info, thank you very much. It seems to be every time I see a GP they tell me different things. I went yesterday because I have had a waterinfection since last Weds and hoped that it would clear up on its own. It didn't and needed to see GP. I don't think it's any connection to B12 deficiency but when I mentioned to her that the GP last week told me my iron levels were low she insisted that they were within range.
Is it me or does everyone get told different things every time they go to the GP..?
I am in exactly the same position as you. I receive 2-monthly injections but feel rubbish after 3 weeks.
I looked into the test for 'active' B12 as my B12 serum is always around the 1500 mark, so the GP says I don't need them more often. But you have to draw blood for the test so I would need to ask my GP if the surgery would do this.
I have booked a telephone consultation this week with the GP and am going over the conversation in my head all the time as to what I can say to get monthly injections.
I don't want to go down the self-injection route as it scares me although many have said there is nothing to be scared of- (except maybe the cost!!)
With regards to Ferritin levels. I have taken the following from a file on the 'Pernicious Anaemia/B12 Deficiency - Support Group' on Facebook. I found that site very, very useful. I had never asked for my results as I thought the GP knew what-was-what but have since decided that they cannot know every little thing about every condition.
My ferritin levels always came back satisfactory but when I started asking for my results I found they were 25.6ug/L with the range given 22-322. I would not have known that this was too low. I am now taking iron tablets to bring the level up.
If anyone can give me any tips on what to say to the doctor to get her to agree to monthly injections I would be very grateful.
It's crazy isn't it. Why won't they just do monthly injections if the patient insists. I agree. I am not sure about self injecting its a tricky one but not sure I have the energy to fight the GP either.
I feel just the same JanetteWebster, my doctor took a blood test in May after the B12 injection and it came back 2000 so decided I wasn't suffering from PA and stopped my injections I went to see a partner in the practice and he reckoned they have no record of me having PA, I have been with the practice at least seven years!!! He did another blood test three days later...after three months I was told I didn't have PA as Paretal cell and IF antibody test was negative....pointless arguing with fools so began to SI, I hate it but hated nearly dying ten years ago more. I rang PAS and spoke to Martyn Hooper, on his advice I am going to see the other senior partner next Tuesday to tell them I have contacted PAS etc to see if they will reinstate my two monthly injections and show them guidelines etc and then we will see what happens.
"one doctor said I had an iron (ferritin) deficiency yet the doctor today said that I didn't."
After finding out on more than one occasion that what I was told over the phone or to my face was not always what was on a paper copy of results.... I always get paper copies of all my blood results.
"but wondered if 700 is high enough to not need to even though I am exhausted and symptoms have returned"
People react in very individual ways to B12 treatment. GPs should treat by symptoms. This is made clear in the BMJ article that Polaris mentions and I think is discussed in the
"BCSH Cobalamin and Folate guidelines".
The BCSH Cobalamin guidelines came out in 2014 and some Gps are unaware of them. I copied the whole document and gave a copy to my GP. I was told in my area that the NHS should be following the BCSH Cobalamin guidelines. Your local CCG should be able to tell you if teh BCSH Cobalamin guidleines are being followed in your area. Not sure of equivalent organisation in Wales, scotland, NI.
I despair at the number of doctors who are completely unaware that once on B12 treatment the tests are quite useless. Of course the levels in the blood will be raised - but that is not where they are needed. It is in the cells where they do their work - hence the Active B12 Test which is only available privately. How convenient for the less than helpful NHS. Your result of 700 is still not near the 1000 suggested by Sally Pachlok - or near the top of the Japanese range of 1300.
Do hope you soon find the treatment you so deserve....
Thank you all so much. I keep reading all this great info over and over but it just don't seem to sink in :(. I began thinking lets think positive and went yesterday to buy the B12 oral spray from Holland & Barret (as many have mentioned it) and then this morning I woke up feeling dreadful and with another black eye. I have no idea if this is part of B12 or something else but it happens every few weeks. Do anyone else have this?
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