I'm so fed up and ill. I was diagnosed with PA back in 2012 then I had bowel cancer in 2013 so after a right hemicolontomy I've pretty much got a double headed. anyway all was good on the injections every 8 weeks until 6 months after I brought my wonderful son into the world. I started feeling tingly in my hands and very fatigued (more than a new mum should feel since he was sleeping very well). more and more symptoms have developed like numbness in legs, hands, trouble gripping things, blank spots in eyes (saw the optician who thought it was diabetes - tests came back fine), numb tongue, dizziness, headaches, insomnia, loss of sensation in female area. this comes on at my 6 week point even my hubby jokes about it being 'my b12 time'.
been to 3 gps now and all said my levels are high at 600 and there is nothing they can do. everytime i see the nurse for my jabs, she treats me like a junkie if im a day early and says i can overdose on b12 which we all know is bs. been referred to a haemalogist who I've never met as they refused to see me said I don't need extra jabs, a endocrinologist who refused to see me and now I'm on a urgent waiting list to see a neurologist which the current waiting time is 26 weeks.
I have a 1yr son and live most of the time on my own due to hubby away in the armed forces. I won't self inject as not good with needles.
I don't know what else to do.
any advise?
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Jenispinks
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I just literally done my first injection..... it was a doddle..... but I get you with the injecting... I have panicked about it for weeks- but as I started getting symptoms, I thought ****it.... it’s better than feeling crap!
Anyway can I suggest you try an under tongue spray? That worked a little for me.... but not any where near as your “B12” fix
If your interested you can get this from amazon or Holland and baratts.
If called “better you boost pure energy boost” comes in a small yellow tube. That’s all I have tried. But you can also get slow release patches - no idea if they will help.
other things you could try are sublinguals (tablets and sprays), nasal sprays and skin patches but it's a bit hit and miss. I get my supplies from a company called detox people but others get theirs from amazon etc.
if you aren't already a member it might be worth joining the PAS and speaking to them
The cheapest and most efficient way to get B12 into your system is to have injections . Bought in bulk. one costs about £1.00! Could you get your husband to inject you ? You can watch videos on utube . Some are useful , some not so . There is a device , I can’t remember what’s its called , that has been developed for folk who hate the though of self-injecting . For the life of me I cannot remember what it’s called . I know it’s made in Denmark , is called a something or other pen , and costs about €95.00 with P&P. I will try to find out something and let you know .
HI Jenispinks do you know what your Folate level is or have you been supplementing with folic acid?
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
and I guess the doctors all say that dreaded word "NORMAL".
The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
Hi there congratulations for beating the cancer and for then going on and having a baby. Chemotherapy is a necessary evil unfortunately and is at the end of the day it is toxic and does deplete your body at cellular level. If you read up on mitrochindrial health it will tell you what you need to start repairing the damage. Also when gut is concerned in any way absorbing any vitamins and minerals is a nightmare so it could be that you are deficient in magnesium, potassium, etc etc. Start at the bottom with repairing mitochondrria. Good luck
"I've tried giving them stuff to read as per pernicious Anemia society suggested too"
My preference is to put info into a letter to GP as my understanding is that letters to GP in UK, are filed with a patient's medical notes so are a record of issues raised. I keep a copy of any letters I write. See letter writing link below.
My point about writing letters is that as far as I know, in UK they have to put a copy of any letter from patient to GP in patient's medical file so even if they won't listen to you or look at articles, they should still file a letter. If letters contains extracts from UK b12 documents and PAS articles then that info will be on file even if they don't want to know.
I always include a request in a letter to place a copy in my medical notes to make extra sure it gets filed.
On one or two occasions in appts, I have referred to a letter previously written to GP which meant that they then had to look up the scanned version on their system which meant I knew they had read it.
Can the PAS intervene further? I know they have written letters on behalf of some PAS members in the past.
Have you told PAS you have passed on relevant info and GPs are still not listening?
With PA history and risk of using nitrous oxide, if you had gas and air I thought you would have been given extra B12 injections after birth. Nitrous oxide can bring about severe neuro damage in some B12 deficient people.
PAS (Pernicious Anaemia Society) may know more about whether it is usual to give PA sufferers extra B12 injections after birth if nitrous oxide (in gas and air) has been given. They may know more about effect of nitrous oxide.
Is your GP aware of the effect of nitrous oxide? Perhaps they would be interested in above gov.uk article about Nitrous Oxide?
Neuro Consequences
Have you pointed out the potential neuro consequences of under treatment? It might concentrate the minds of some doctors on risk to patients. See following links.
Hopefully haemotologist would emphasise need to have injections at least every 8 weeks but don't be surprised if haemo is unhelpful. Sadly lack of understanding of B12 deficiency and PA can be found in soem specialists as well as GPs.
Neurologist
With neuro symptoms, have you been referred to a neurologist? There is always the chance that neuro may suggest an extra set of loading doses or at least being put back on 2 monthly injections.
It is your right to request referrals but GP does not have to agree. I put requests for referrals in a brief, polite letter to GP and include in letter reasons/evidence/extracts from documents that support need for referrral.
A word of warning...
Some GPs find assertive patients difficult to deal with and writing letters may affect GP/patient relationship.
my gp asked a haemalogist for advice but they said I didn't need anymore frequent doses. now been referred to a neurologist but my health board wait is 26 weeks urgent & routine. I'm tempted to ask for copies of the letter to the haemalogist and from. I was on nitroxide gas but only for a few hours then a epidural for nearly 14 hours.
I might take you up on the letter writing and contact yourselves next week. also tempted to speak to the patient care trust people too.
There is a chapter in Sally Pacholok's book "Could it Be B12" about the effect of nitrous oxide.
I think nitrous oxide is also mentioned in following books.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies. I cried when I read the case studies in this..it was like reading about myself.
Neuro Appt.
Perhaps you could ask if nitrous oxide could have triggered deterioration after birth. Glad to hear that you have been referred to neurologist but be prepared for possible lack of understanding about B12 deficiency and PA.
For any appts where B12 might be discussed, I take relevant B12 articles with me and if I'm feeling flush I take a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" to leave with doctor.
I think it's a good idea to ask for copies of letters.
Misconceptions about B12 deficiency (English language article from Dutch B12 website)
I hope you have someone supportive who can go with you to appts. Even better if they have read up about b12 deficiency and PA.
It can be very helpful to have a witness present. I had some unpleasant experiences with doctors and wish so much I had had someone with me who would have spoken up for me.
Unsurprising attitude -when people are being told that B12 is "highly addictive" "toxic" or "carcinogenic" by Haematologists, they are also likely to be giving out this information to worried GPs etc. They are not supporting these statements by providing any research evidence or information about where to source this , even when it is asked for.
I have looked hard for evidence to back this up and found nothing at all. Googling B12 and Toxins together will bring up only how B12 is used in vast amounts as an effective ANTI-toxin.
Perhaps this is lack of awareness, theory or even personal opinion, I'm unsure which, but they all need to calm down about any supposed ill-effects and get on with treatment for what they are seeing. Certainly everyone who saw me at my worst (injection every 3 months) and has seen me lately (every other day) believes otherwise. One specialist advised me to continue self-injecting, persevere and be patient. Improvement is slow but evident. I'm also taking vitamins as I don't seem to be able to hold onto anything. I haven't had a diagnosis yet but believe I am getting close, thanks to everyone here, a tenacious and intelligent GP, and some thorough specialists.
I have also just read a post from poppylove called "GP appt update - wow!" which only shows how much luck plays a part in healthcare and how we all respond differently to treatment.
Sometimes, when it is just us, we question our own judgement.... when others around you notice, it is confirmation. Did your husband manage to go with you to GP ? This could be an easier option than just waiting for the neurologist and might work. Anyone else close who could go with you and back you up? You've been through a lot. Definitely things there that a neurologist can measure though. Best wishes and good luck.
I completely agree Cherylclaire, it really is down to luck. My brother had his injections stopped by his GP's surgery because he was only diagnosed B12 deficient, not with actual PA. They will only give him tablets and because his level is in the 300s with them they say that's fine.. He now has cervical spondylitis and is in constant pain.
To be honest I almost felt bad about posting of my success as it was so easy for me and I felt guilty about everyone else here going through so much and still being ignored. But then I figured we DO need to hear of the (very) occasional success to keep us going.
thanks cherylclaire. I'm ready to give up the as it's ruining my life. saw a different nurse today for my b12 and explained about the other nurse and said I refuse to she that one. my next jab is due the day I'm due back from a holiday in Cornwall and I'm worried I'll be wrote off during it. the nurse said I'd have to speak to a go to get it early but I know if be going round in circles. so I can't get my next jab till the following Monday now. my hubby works away a lot so difficult for him to come with me to see the gp. just feel it's my cancer again as it took 2 years for them to believe me that something was wrong. it was only after I challenged the gastro to give me a colonoscopy that they found the tumour. my son is the only thing keeping me going.
I have no idea where you live Jenispinks but you have no idea how much I wish it was near me so you could either come to my surgery to get help, or so I could go to yours with you to fight in your corner.
Well then I think you should write a letter , then allow yourself some time to mull it over. You may wish to revise it before you send it. Be careful: because, as Sleepybunny quite rightly says, they have to put this on record and so are far more likely to respond. My own GP's reponse was to stop my twice weekly injections, tell me this had gone beyond primary care, and sent me to the haematologist (and you already know how THAT went !). This could have worked out well, and to be fair, this did start another avenue of investigation: neurology, Lactulose breath test etc. which might not otherwise have happened or at least not so promptly. Keep a level head, I know it's hard, but you need to use facts and research to back up your requests. Sound advice here will help you. You've got through a lot more than this in the past.
Best wishes to both of you. Taking luck away from one person doesn't give it to another, so stay lucky poppylove - good stories are inspiring.
Jenispinks you are also an inspiration. You have been through a really tough time and need a break from struggling. It won't always be like this, having to jump hurdle after hurdle. I have also felt really lost and alienated at times. But here I am at work (!) after 15 months off sick. Alright, I'm only back for one day a week, but it's a start and it can happen.
Doctors and nurses do read this.
They also get B12 deficiency and PA.
Have a read of Dewbuc 's posts- also an inspiration !
thanks. my hubby has just been on video chat with me and eventhough I only had my jab this morning he could tell I had. he said the colour is back in my face. it's amazing how it starts to work. something so cheap but something held from us
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