21 years ago I was diagnosed with ulcerative colitis; within 12 months of being diagnosed I had my bowel removed. I was then treated for anemia on numerous occasions with blood transfusions before being diagnosed with pernicious anemia. At the time I had a fantastic doctor that gave me B12 injections every 4-6 weeks. I then moved house and had to register with another doctor who told me I would have to have the B12 injection every 8 weeks and not before, by week 7 I was struggling and this continued. 12 months ago I went to get my injection and was told that I would not receive it as guidelines stated that it was not necessary to give B12 injections more frequently than every 12 weeks. I explained that 8 weeks was the maximum I could wait but to no avail, they would not budge.
I am now at week 11 and have the symptoms I have been told I have to live with. Although I am totally exhausted, I struggle to sleep properly, I have heavy nose bleeds, incessant ringing in my ears, shortness of breath and heart palpitations (I have been told these symptoms are not related). Every aspect of my life is affected by the way I feel, I have very low concentration, I work as a Human Resources Manager and know that my judgement can become cloudy, I drive a lot of miles and am now starting to wonder how long I will be able to do this for. I like to go to the gym 3 times a week at least however I have been unable to go for the last 2 weeks. My family are walking on eggshells, will I be screaming and shouting for the slightest little thing or will I be sat in a corner crying for no apparent reason.
I would like to know, is there anything definitive that I can put in front of my doctor to say there you go; it isn’t just me feeling like this, other people need B12 injections long before 12 weeks.
I am sure they think I am making my symptoms up. They make me feel as though I am wasting their time
Written by
michellelofthouse
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Are you a member of the Pernicious Anaemia/B12 Deficiency support group on Facebook? There are 7000 members. Many have had this problem and there is a lot of information for you to take to your doctor on that site. I have found out so much in the last two months and am taking matters into my own hands with my daughter's b12d.
Treatment for PA or B12 deficiency with neuro symptoms is more intensive than for those with PA or B12 defic. without neuro symptoms.
Your GP should have a copy of the BNF (British National Formulary) on their bookshelf. The relevant info is in Chapter 9 Section 1.2. The BNF is copyrighted.
"was told that I would not receive it as guidelines stated that it was not necessary to give B12 injections more frequently than every 12 weeks. "
Guidelines state that B12 injections should be given more frequently than every 12 weeks to PA or B12 deficiency sufferers with neuro symptoms. Guidance on treatment and frequency of injections can be found in the BNF and the "BCSH Cobalamin and Folate guidelines".
My understanding is that people with PA or B12 deficiency who have neuro symptoms should have an injection every two days until they stop improving so that might mean you get loading doses for several weeks or even months. After you stop improving it's an injection every two months.
Has your GP got a copy of the BCSH guidelines?
The PAS website has a summary of it in the library section of the website.
I gave a copy of page 29 from the BCSH Cobalamin and Folate guidelines, a diagnosis flowchart, to my GP.
This is the latest BMJ Research Document detailing the treatment of PA and, as Sleepybunny says, with the neurological symptoms you have, you should be treated at least every two months, if not more frequently. Your doctor is putting your health and livelihood in jeopardy. If your GP will not read the full document, show him the summary. I'm told that one of their biggest fears is being sued so it might help to have things down in black and white,
If all else fails, there are people on this site who self inject successfully.
cmim.org/pdf2014/funcion.ph...
Cmim/BMJ document. " Summary:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
Hi Michel, It's unlikely that you will change the Drs attitude to the rules. Your best bet would be to see a consultant haematologist. I got some sympathy from one in Manchester who said she didn't see any reason to make me go more than 3 weeks. I did present some evidence from the methylation pathway genes which showed I may need B12 more often. I left copies of my evidence with her but didn't get any comments on it whatsoever. It's a long and tedious journey. In the meantime, seeing as you have already been tested, get some sub-lingual methyl B12 and see if it helps. Holland and Barrett sell it. It helps me sleep and no I don't have shares in the store!
Hang in there it will get better.
David
p.s. the previous posters seem to have all the angles covered.
Thank you very much to everyone that has replied, even though I have had pernicious anemia for so long, I didn't realise there was so much information out there and i had no idea about the sub-lingual methyl B12. You have all been a great help
Good luck and I hope you get better treatment from your GPs.
Some people have B12 infusions (B12 on a drip). The PAS should be able to tell you more about this. It is possible to get B12 infusions through private healthcare.
Some people use B12 skin patches and some use nasal or oral sprays to supplement. I got best results from injections but everybody is different.
The NHS uses hydroxycobalamin in its injections.
Some people get better results from methyl cobalamin. I think the USA tends to use cyanocobalamin. There is also adenosyl cobalamin. If you have time you may find it interesting to google "methylation cycle" and "MTHFR mutations"
Some people just don't do well on the standard NHS treatment. I'm aware of people who are fine on the standard NHS treatment of an injection every three months and I also know of people who inject the equivalent of several doses a day. Again it's very individual.
Has your GP checked your levels of ferritin (iron) and folate, You need good levels of folate, ferritin and B12 as teh way they work in teh body is closely interlinked.
Has your GP given you a recent full blood count? there can be useful clues on this. I got copies of all my full blood counts. High MCH and high MCV can indicate the possibility of a macrocytic or megablastic anaemia. PA can cause a macrocytic anaemia.
Low iron makes red blood cells smaller. Low B12 and/or folate can make red blood cells bigger. If you have low iron at the same time as low B12 and/or low folate then your red blood cells may appear "normal" size.
Some people get a "blood smear" or "blood film" which can show abnormally shaped blood cells. This is not often done on NHS but can be done privately.
I always get copies of any blood test results. I learnt not to assume they were normal even if told they were....There will be charge for copies. It can be useful to see how close to the edge of the normal range you are even if your results are "normal".
"I am sure they think I am making my symptoms up. They make me feel as though I am wasting their time"
Many of us have been through a similar experience. I was traumatised by my experiences and still do not have a diagnosis of PA although have many symptoms.
I was told it was depression, hypochondria and psychosomatic.
You are not wasting their time. Any caring medic should always be willing to listen politely and respectfully and respond to questions even if they disagree with you.
Do you have somoen who is caring, supportive and believes and understands your illness? Can they come with you to your appts?
In my experience medics are kinder if there is someone with you.
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I would like to start self injections.
I don't want to go down the rabbit hole again...
