I’ve had crohns for a long time and in 1996 I had and ileostomy and then a further two small bowel resections
For the last 17 years I’ve had B12 injections every three months. I moved 180 miles away from my surgery where I used to go. I now have a doctor who refuses my B12 injection saying I don’t need it. I’m folic acid deficient and low in iron. He prescribed folic acid but I have short bowel syndrome and find my Vitamins in my pouch within 30 to 40 mins still intact.
I was told by my consultant I will need B12 injections. I was also told that a blood test may indicate one month that my levels were ok but the can decrease and go missed the next month so is best to always continue with these jabs
My stoma nurse emailed my doctor but he ignored and at one point my GP was sarcastic and told me do I want to sit in his chair
Please help
I’ve ringing in my ears
I feel faint
Depression
Can’t sleep
Terrible head aches
Arthritis in my knees causing feeding pain
When I used to have regular shots I never suffered like this
My relationship with my doctor is terrible as I’m also classed as a druggie due to me taking pain medication for my back.
I’m so fed up and I know damage is being done.
I refuse to take folic acid vitamins orally as it’s a waste of time. My slow release medication I take is also a waste of time as it flys through me
So what now
Please help me
Adele
Written by
Twinkle_Little_Star
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Thank you so much, I’ve been in tears. 18 months now with no Vitamin B12 injections. I’ve barely any bowel left
I feel terrible all the time and my poor tongue is so dam sore
I don’t know if I complain will they take me off there books
I feel like I can’t hold a gun to his head. He told me he would test my blood but that was 8 weeks ago and when I asked about the test he said I don’t need a blood test
I’m at a loss but I will get something in writing I think
Look up NICE guidelines for B12. GPs are supposed to treat on symptoms.
I was too ill to argue with **** GP so got on with it myself. First methylcobalamin sublinguals which got me over the worst, then a lovely friend from my local HypoClub gave me a hydroxocobalanin vial & equipment to try so I could join a B12 share group (now closed down). Some folks are ok on cyanocobalamin, but I accidentally bought sublingual lozenges & spray containing this, & ended up completely floored on both occasions, so have stuck with the natural forms for injection (hydroxo) & sublingual (methyl) if I'm away from home at injection time. There are how to videos & instructions online, I remember looking up information re what to do on the website I mentioned above.
My local needle exchange give sharps boxes, alcohol wipes, & needles when they have them spare, & will take my full sharps bins for disposal. Maybe look up where your nearest one is & ask if they'll help before you buy your own equipment.
Don't forget how important it is to have good folate levels as a cofactor for effective utilisation of B12. I eat a lot of folate rich foods & take a B complex containing folic acid. Some folks have an issue with methylation so need methyltetrahydrofolate (MTHF) which is the form our cells use. I'm yet to get to grips with studying this so I'm afraid I can't explain the details fully, I'm just aware it exists.
ps I take pain meds too. I've found more long term relief from B12 than drugs. I still have episodes where I need them though the episodes of severe pain have been reduced in length to weeks not months.
I can only suggest that you self-inject with vitamin B12 plus Folic acid . You can get these combined vitamins in single use ampoules from some German online pharmacies . The cobalamin involved is Cynocobalamin which works as well as Hydroxocobalamin, only a bit slower it is said . Cynocobalamin is the B12 of choice in the USA . The ampoules are made by a reliable firm called HEVERT . They come in ampoules of 3mg of B12 plus 20mg folic acid . As you know these vitamins work together .
At the moment , BODFELD is the cheapest for this item. €29.31 for 2 x 10 packs . You can search for vitamin B12 plus or just enter it’s reference number of 00296093 .
These vitamins can also be obtained in separate ampoules .
I have just looked up how to inject the combined vitamin ampoule and sub- -cutaneous is not listed . So it should be the Intra-muscular method I.e. I.M.
I suggest you write a polite and brief as possible letter to GP pointing out your concerns over lack of treatment. In UK, letters to GP are supposed to be filed with medical records.
Consider copying letter to practice manager.
If possible include extracts from any relevant medical guidelines that support your need for B12 injections.
Try to get access to your medical records. Details about online access will be on GP surgery website.
Have you challenged him by asking why he thinks you don't need them. If you know the reason why, it can make it easier to argue against their decision.
"My relationship with my doctor is terrible"
Can you see a different GP in the practice in the future or change to another GP practice?
I suggest taking someone supportive with you to any future GP appointments. It's my impression that GPs are kinder when a witness is present. Even better if person knows about B12 deficiency and is willing to back you up.
I wrote a detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
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