Hi about 4 years ago I was diagnosed with the above, I had very low blood pressure and was sent for blood tests. Since then I had a serious of injections of B12 over 2 weeks then religiously every 12 - 13 weeks. 6 months ago around a week after a jab I had to go for some more blood tests cholesterol etc. The Doctor called me in and said that my B12 was very high now and that I should stop having them and to be retested in 6 months which I am now due. I have been to the Doctors today with bad stomach acid chest pains and pins and needles and numbness in my hands and feet and no energy...... when I said about having pernicious anaemia she looked surprised that the other doctor had stopped my B12 jabs. Can anyone tell me if I should have perhaps have sought another opinion as when I did ask the other doctor about having to have them for life she replied no and stated that it was to high. Can I ever say I no longer have this condition?
Thanks
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Julesadams
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Firstly, there is no such thing as B12 levels being 'too high'.
Secondly, yes - you do need your jabs for life. Indeed, with neurlogical symptoms (like yours - pins and needles) you should be having them every two months, not every three months,
Here's a link to the BCSH recommendations that your quack should be following -
Yes, you will need injections for the rest of your life. PA is not curable. When the B12 supplements are withdrawn the levels will drop. Testing to watch them drop is pointless. And, as the BCSH guidelines say -
"In the presence of discordance between the test result and strong clinical
features of deficiency, treatment should not be delayed to avoid neurological
impairment. "
In other words, doctors should treat the symptoms, not the numbers.
If your doctor refuses to be budged then read that above quote from the BCSH summary to him. Then explain that you shall sue him if he refuses treatment and that refusal leads to Sub-acute Combined Degeneration of the Spinal Cord Secondary to Pernicious Anaemia (what the BCSH mean when they say 'neurological impairment').
I have experienced this too- one doctor wanted me to stop injections as my Vit B12 levels were way above the range after my injections. She suggested waiting to see if the levels fell too low!! I protested that I had been very lucky to be diagnosed just in time as , although well below range initially, I hadn't had any warning symptoms.
Fortunately another doctor in the practice confirmed there are no effects if the level gets too high so I have continued with 3 monthly injections.
I called the surgery today after the responses and asked for an explanation the surgery called me back and said the doctor had commented saying the reading was high and that I didn't need my levels checking for at least a year ......I said well that's strange as after seeing a different doctor today she has advised I get tested now.......not sure where to take this now I am due to see a neurologist in December over migraines do you think he will table to help?
Take B2 for migraines It really helps! You can check around the internet for the amount others are taking. If you can put off the appointment until about a month after you have taken B2 every day, then do so. You might be able to cancel altogether.
I'm shocked your injections were withdrawn especially as you have confirmed PA. I'd urge you to contact the PAS. In some cases of withdrawn treatment they are able to intervene.
The phone line is open on Saturdays 8 till 2pm (and on every day but not Sundays). If you leave a message they will get back to you.
Website below is also supportive. It's run by a B12 deficiency sufferer, e-mail contact details on website. This link may be helpful as it has examples of letters to write to GP if not happy with treatment.
wwwb12d.org is also worth looking at in my opinion but can take quite a while to get answers from them.
Have you contacted your MP? Most MPs list times they give appts for advice on their websites?
Second Opinions from HDA
This UK charity uses private doctors to offer free second opinions on treatment and diagnosis. There is an online contact form. I think patients probably have to supply a full medical history, They usually get back to people pretty quickly.
The treatment you describe suggests that you are on the standard NHS treatment for B12 deficiency/PA without neurological symptoms.
The treatment for someone with b12 deficiency with neuro symptoms is more intensive than you have received. The info is in the BNF (British national formulary) Chapter 9 Section 1.2 All Gps will have access to a copy of this, probably on their bookshelf. It's also fairly cheap to buy a secondhand copy. The recommended treatment is also in the "BCSH Cobalamin and Folate guidelines". The BNF is copyrighted so can't reproduce info here but this link contains similar info. Scroll down to Management.
It's made clear in the BNF and the BCSH Cobalamin Guidelines that treatment for PA is for life. I gave a copy of the BCSH cobalamin Guidelines to my GP. The PAS (Pernicious Anaemia Society) have a summary of this document in library section on website.I found page 29 in the BCSH Cobalamin guidelines useful, it's a diagnosis flowchart.
Hope you get it sorted. Its an awful thing to have. I had corroboration from the gastro team about the problem but one doctor in the practice was if you feel ok ! fortunately not my doctor. good luck. I had a friend a barrister who just refused monitoring unless she had treatment. she didnt sue anyone but i think it focussed their minds. she didnt do it. Have not done it myself and wouldnt really recommend it x
You could also write or email the latest BMJ research document and refer them to bottom of page 4, "Response to Treatment" - in which it clearly states that it is ineffective to measure cobalamin or transcobalamin once treatment has begun.
It is the clinical condition of the patient that is important:
Your first doctor doesn't surprise me. There is a real lack of info regarding Vitamins. The amount the U.S. government says people need a day wouldn't keep a flea alive! Make sure you take other vitamins too, like D3, B2 and b-complex.
I have been without any b12 support for a year now, same reason as yourself. doc told me it was too high also. It is a life long condition, I also read somewhere that you do not need retesting and can have it put on your notes you do not want the test. I've had an horrendous year, most of it in bed, so many illnesses and heightened symptoms of pa.
I was diagnosed PA in June 2005. Been with my now gps surgery for around 8 years getting two monthly injections. Suddenly in June this year I was told my levels were too high and no way was I B12d I made an appointment with one of the owners of the practise and took in the Nice guide to treating PA with neuro only to be told they have no record of my PA?? They sent for me a few days later for a blood test, I waited three months for the results only to be told I didn't have PA because they had IF & paretian cell results back that were negative!!! No more B12 for me unless I can go in with symptoms they can test for???? Meanwhile I have given myself a loading dose of 11 vials over a three week period but don't really understand the iron, folate etc that all goes toward getting active B12 working.... Scared of my future with no medical help, my hubby really exhausted with all the stress of it so I'm in the same boat....heading down the white water Rapids without a bloody paddle 😟 Hope you get some help X
I've since been for a test and my folate is at 1.7 which apparently is mega low and my b12 has halved since my last test I have printed out loads of things and the docs rang me the morning after my tests and have made me an apt with the second doctor ( not the first thank god) I am due in on Monday hopefully will get back on it but will have to see. I am going to get something out on my notes though regarding PA as this shouldn't happen ....... Maybe some of the advice on here may help you also I have found it really useful x
Having been on the Thyroid UK forum of HU for 4 years - it has become very apparent that those of us that make headway and become well - have taken things into our own hands. It's just a sad fact of life.
For those of you that have watched - Doctor in the House on BBC will have seen - he openly admits that the root cause of the most common complaints and conditions cannot be dealt with in a 10 minute appointment. It would seem if they did not learn about things in Medical School then it does not exist
I have learnt so much from the knowledgeable people both here and on Thyroid UK. I feel we just have to keep reading and learning for ourselves. It seems the NHS can handle critical care quite well - but chronic conditions or preventative care - well please do not ask us in the NHS - seems to be the general trend....
What a pity your GP does not realise that only round 20% of the serum B12 reaches the cells where it is needed. Do hope you soon feel stronger.....
This happened to me but it was the nurse...she said that she wasn't aloud to give me it when its above a certain level.. mine was 1900. i didn't have it that time and went another 12 weeks after that.. I was very ill and couldn't walk straight, breathing issues, the list of symptoms is endless really. i went to see the gp had some bloods done, including active b12..( and acid test) my blood serum level was 72... my active level was 34!! dropped that much in just 24 weeks)
This happened a few years ago and i've had injections every 10 weeks after the loading doses...my gp was very angry and told me to never not have them and if there's a problems the nurse needs to contact her first... i've done so much research on this condition and my own symptoms as i don't trust all gps to know what's going on and we have to look after ourselves..
I have since had neck surgery as ive got spinal cord issues and degenerative disc disease , peripheral neuropathy in both feet to my calves , ive been under a neurologist for two years now .. more blood tests and investigations ( all because i was deficient in b12 for many years)
Found out i wasn't absorbing it to the cell level so as it depletes really quickly after injection i was always deficient and never seem to feel better for longer than a few weeks after jab ... but my blood test would say my levels were high and therefore nothing was done .. things have moved on im getting the help i need now.
Please don't take no for an answer and gather evidence to show gp xx
"Found out i wasn't absorbing it to the cell level so as it depletes really quickly after injection"
How did you find this out? I strongly suspect something similar is happening to me. My symptom log suggests that I really need i000ug every 8 days to keep the fatigue etc. away. I'm worried that less frequent injections may make the neurological damage I've already got worse.
homocysteine acid and serum methylmalonic were increased, my neuro said your body takes what it needs that goes to the liver and the rest goes to the kidneys and you wee it out .. so if you dont absorb what you need in the first few weeks you just need more injections ? they treat you the same regardless of the cause. i was also checked for ms and currently been told ive got neuromyotonia... i came to the conclusion that it may not be b12 after all or that i may have something else going on turns out i do but not absorbing b12 properly hasnt helped x have you tried magnesium? i take 500mg daily it does help also epsom salt baths
I am new here, was diagnosed with PA 2 years ago, had 10 loading injections at weekly intervals and the gp refused to give me any further treatment as he said my levels were in range. . he said my liver would store it for 5 years!, but I now have all the neurological symptoms back . he has said I can have 1 x b12 injection and then be retested in 3 months. I had this injection last week and feel no difference. I used to be quite active but now everything is an effort, I don't think I can wait 3 more months . Just so tired and lethargic, so they give me antidepressants....
...have you considered trying the lozenges that dissolve under the tongue ? Jarrow Methylcobalamin B12 5000mcg from Amazon may help you. I have read positive comments both here and on TUK. There are also nasal B12 sprays. I have weekly injections and often top up with the lozenges....
Also look at the Guidelines posted above - print them off to show your GP. They are in the post by fbirder at the very beginning. They should be looking at symptoms and not the blood test. It is pretty useless once you have had treatment. You need the B12 in the cells - the blood test only shows what is in the blood .......
Do try not to take the slippery route with AD's - there is no blood test for Prozac Deficiency - yet they still prescribe willy nilly....
For almost a year now my health has been going down. I was diagnosed in 1991 as being a PA at that time I was told I would be on the shots for the rest of my life. About 8 years ago my medical Dr told me my levels were great that I didn't need to take anymore shots at the present time. I have been fighting fatigue, dizzy spells, numbness and tingling in my hands and feet. Heart burn and cramps in my legs and feet also been having chest pains. I found you statement that you posted and everything that you mentioned is exactly what I've been feeling for over a year now. The Dr told me it was vertigo and that take this medicine and it would help. But it did not and now my lungs are filling with fluid at night and it's getting harder and harder to get around. If anyone can read this do not let your Dr make this call without you getting a second opinion.
My GP called me last month after a series of blood tests that came back showing my B12 was okay but I had pernicious anaemia and told me that I would have to stay on B12 for the rest of my life, which I assumed as I was a ceoliac that I would any way.. I can't understand your GP wanting to take you off B12 if you have PA
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