I had an appointment today with a GP to discuss my recent blood test results. Got into the room, he said: "everything looks fine and I don't see any reason for you to continue with any B12 supplements - injections or otherwise." and I was sort of like "?!?!?!" and he said: "your levels are within the normal range now." and basically shooed me out the door.
I feel like I'm not being treated properly because I'm being tossed around by different GPs. My first GP left the surgery, so, I moved onto a second and she was really helpful and sent me for my second loading dose, followed by a month of weekly injections, bug then she took time off and won't be back until the end of the month so I went to a third GP and he knew nothing and kept trying to blame my condition on a poor diet. He's the one who sent me for the blood test and I made an appointment with a fourth GP for my results, hoping he would be more helpful.
My mistake.
So... I'm not sure what I can do from here. I'm still exhausted 24/7, getting twitches in my thumb, pins & needles in my back, migraines etc. and this is only 4 weeks without an injection. I have some of the vials left over and am contemplating whether or not I should self inject once a week until my regular GP comes back.
Anyone have any suggestions?
Written by
KCxo
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My understanding of it is that once diagnosed even if you are now within range you still should be getting the barest minimum of one quarterly. If you feel you need it more frequently then you might need to self supplement.
You will be high or in range as the injections you have had will have done their job. Frank will tell you his levels are regularly up to 6000 and gps worry if our ranges go over 200!!!!!!
If you cant get your gp to reinstate then i guess you will need to consider getting your own b12 onboard, whether that be patches, lozenges, tablets or injections.
Once you are started on vitamin supplementation in which ever form, injections, lozenges, spray etc. Your levels may be monitored from time to time to check that they are rising and looking as if they are at a good level.
However once supplementing, your B12 levels will usually always look high and this should never be used to reduce or stop treatment.
He wouldn't even prescribe folic acid or cyanocobalamin tablets - just basically said "you're fine now" and sent me on my way. Didn't even read out my results, either.
And, my blood test was taken a week after I'd finished a round of 10 injections, so obviously my B12 levels would be high at that point.
Yes - definitely needs to do some reading up on B12 ... and probably to start thinking things through rather than just reading results off by rote. Far too much of that out there.
Hope that you can hold on until the other GP gets back
You must go back if you can and ask for a copy of your blood results. Ask the doctor to treat your symptoms. Keep fighting. I think b12 does something to your spine? Any other users know about this?
Yes. I am currently undergoing tests by a neurologist for ms-like symptoms. I believe it could be combined degeneration of the spinal cord caused by undertreatment of either b12 or folates. I now SI every other day but my Neuro symptoms are not improving. Do not waste time. For those who get the right treatment before it is too late, the prognosis is good.
Yup. The PAS do a very good leaflet on this - PAIL2 - but you need to be a member (only £20 for life membership). pernicious-anaemia-society....
Hi.
You need to educate your gp. Look on the pernicious anemia society website for info. The update for medical professionals will help as will bcshguidelines.com
Www.b12deficiency.info
Www.b12.org and finally
Www.b12awareness.org
Highlight the important bits and give them to him.
He obviously has not read them lately! Even nice say they are for life and that further tests look on b12 are unecessary ckc.nice.org.uk/anaemia-b12...
I have just experienced a very similar situation. I have written a letter to the medical centre practice manager and am awaiting a reply. They wanted to discuss this on the phone but I wanted a record of what was being said. If you want a copy of my letter for you to use as a starting point I am happy to forward it to you. In it I have included sections from the NHS website which says what good practice in PA management looks like. Good luck
Go to holland and barrett and buy the b12 spray. You do 2 squirts inside each cheek. There is lozenges you can buy and a nasal spray if you can afford it. Book an appointment to see the practice manager. I have refused to let my son have any b12 blood test now and have stayed at the surgery until he gets an injection. Just keep going back to the doctors even if you get shut down. Write a note asking why they can't just treat your symptoms and get them to put it on your records. Ask for a copy of your blood results and keep it. Tell them you are thinking of self injecting and ask for a prescription of the b12 and needles. Ask them what guidelines they are using for treatment of b12. I wrote everything down and just passed it to the doctor and stating the obvious keep a copy for yourself. Sorry not being condescending but know how hard it is to concentrate with low b12. The b12 that you have can be inactive so the blood results can be false. Take a look at the bcshguidelines. If money is an issue as lots of people with this condition are unable to work then b12 deficiency can give you free b12. I am going to start a petition online and will take it to downing Street. Feel for you.🐇🐧
Did your first or second "helpful" GPs diagnose you with P.A. or B12 deficiency or give you a cause for malabsorption and what tests were done?
Was your third GP anywhere near the mark regarding your diet? Are you vegan or vegetarian? The only "natural" way to get B12 via daily food is by eating red meat, fish, dairy products etc although some cereals now have it added. You will also need to be eating green leafy vegetables to provide the necessary folate (Folic acid) which helps process the B12. This too is added to some foods
Have you had gastric surgery?
Do you regularly take antacids or are you on proton pump inhibitors such as Lansoprazole?
Are you diabetic and on Metformin as this is known to affect B12?
I am not a medically qualified person and there are others on here that will give you good advice but I think it would help them if you could address my questions.
Of course if you were diagnosed with P.A. all the above is irrelevant and you should have B12 for life - which any GP worth his salt will know.
My first GP had me on the pill version of cyano for a while before I went back, requested a blood test and got the confirmation in December. She then sent me for a loading dose of injections and when I went for a blood test 3 weeks later, my levels had dropped back down to 93 and my folate levels were half the normal range.
I'm not vegetarian or vegan - red meat isn't a favourite of mine but I do eat it occasionally. It's mostly chicken/turkey that I eat. I do eat dairy. No fish, though.
They did test my intrinsic factor but apparently that came back normal. But, I do know from past experience that their "normal" is usually below average or the bare minimum.
No stomach surgery, not diabetic, not on any other medication that could cause this etc.
It's so frustrating knowing that there's something that can be done to relieve this suffering and they don't want to help.
Thank you, though!
Gather information from this website & others. Go to Holland & Barret & buy oral B12 sullpiments from them. Or buy from Amazon needles and injection. I think.To keep you going.
Looking at your past posts KCxo, your B12 levels were very, very low at 93, with many neurological symptoms of B12 deficiency so I'm glad you have been prescribed B12 injections that, according to all the (BNF, BCSH,) guidelines and research, should be 'until no further improvement.'
But, it is quite scandalous that there has been no attempt to find out why they were so low in the first place and injections now stopped. It is so very important to continue, even if you have to self inject, as I believe failure to diagnose and treat correctly or adequately by her surgery contributed to my relative's continuing and severe neurological damage.
If it is any help, this is part of a letter, our family have just sent to hospital specialist and we are still waiting to see whether her injections will be reinstated:
................
"The reason given for not continuing B12 injections is that the serum B12 test showed levels that are already high. The latest BMJ research document, as well as BCSH guidelines, both state that further testing is not required after parental treatment has begun - please see bottom of page 4 under:
'How is Response to Treatment Assessed":
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment and retesting".
Folic acid has been mentioned above and it would be better to avoid taking this whilst your B12 is perhaps not being absorbed. There is an excellent film on the B12 deficiency site with information on this and various templates for writing to your doctor:
"If you treat someone with B 12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."
"High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood."
I'm confused now as I've always read on here that if we are taking B12 supplement (which I am) then we should also be taking a B-complex - which has folic acid in it. Please can anyone clarify?
But in the quote above it seems to say that folic acid shouldn't be taken until B12 is at a normal level, and by normal I mean above at least 500 although I'm aiming for 1000! At my last test I was 284 (190-900)
By 'Normal' they mean 'Not very low' or 'Within the range that we usually call narmal'.
This article - umm.edu/health/medical/altm... - says that it's large amounts of folic acid that may be a problem and that you should consult a doctor before taking more than 800ug a day to make sure you don't have a B12 deficiency.
"Folate is required for the synthesis of red blood cells, those tiny disc shaped cells that carry oxygen in your blood to deliver it to each and every corner of your body. However, B12 is required in a reaction that converts folate into a form usable by the body to make red blood cells. Without that, folate cannot participate in the synthesis of red blood cells. So without B12, folate is literally of no use! ". - 'The B12 Deficiency Survival Handbook', by Dr Aqsa Ghazanfar
"If there is noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord.
In patients with isolated vitamin B12 deficiency and anaemia, additional folic acid is recommended until vitamin B12 is replete to prevent subsequent folate deficiency after replenishment of B12 stores."
As a nurse told me "when your levels are high it is because you are having B12 injections so, if you stop having them they will return to a lower level so what is the point in stopping them" - with an "any idiot knows that" look on her face!!!
I find it desperately sad that GP's are so ignorant of B12 treatments. We, the patients, need to be our own experts, and our own advocates, just to get the treatment we need. Just because blood levels are high after injections, doesn't mean they will stay high. Or tell us how much of that B12 is actually reaching cellular level! Fight for what you need to be well. Also ask the Pernicious Anemia Society for help if necessary. They have leaflets to give to your GP. Best wishes MariLiz
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Time to upset GP Practice
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