I would appreciate any advice anyone can offer. Diagnosed with PA some years ago and have B12 shots every 8 weeks. End of last year noticed I was offish not myself and generally run down so asked for blood tests. Have been tested for everything under the sun but nothing has shown up. I was suffering terribly with grief a few months back so totally appreciate this will have affected me however I just feel so run down and keep going dizzy. Since having my last B12 shot 2 weeks ago I have not improved. Any tips suggestions or advice gratefully received.
Just to say huge thanks to everyone who replied and for your advice. Following a trip to A&E recently I found out I am suffering from Postprandial Hypotension. Basically low blood pressure after eating. Drinking water before meals, eating small and often and snacking on salted crisps and peanuts. Feeling so much better but still tired and lacking energy. Also started on folic acid and magnesium. Shame on the GPs for just brushing me off with depression.... easy solution for them. I have another appointment in a few weeks time could anyone advise on what is involved with an active B12 blood test? Or anything else I should mention to them?
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Mullers26
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Thank you for responding. Apparently all my test results were fine?I had problems few years ago as they discovered my iron and folate were really low. I will take on board how grief can affect everything but I am totally off cannot cope with constant dizzy spells. I asked for more frequent injections but told 8 weeks is minimum?
I was told on more than one occasion that everything was normal/no action and then found abnormal and borderline results when I got access to or copies of the results.
I think it would be good to get a print out. Look for trends in results.
Results may be significant if they are increasing or decreasing over time even if still within normal range.
The feeling dizzy reminds me of when I was diagnosed with PA. That was one of the symptoms that I experienced .
once you have a diagnosis of PA , you need to keep B12 readings high It’s more than unfortunate that doctors are mostly really ignorant aboutPA / B12 deficiency. and think that having high B12 readings mean that you have sufficient B12 . This is. of the case . We are all different and require different regularities of B12 injections . I could get no more than 1 injection every 3 months , which left me in a terrible state . GP refused me more injections, so i had no alternative but to self-inject, which has helped enormously .
If it’s affordable you could try having extra injections at a beauty parlour ( googje to find one ) If they help , you could then try self-injecting which is really reasonable at about £2.50 . If you would like to try this , do let us know and you will get information.
You could of course try getting your GP to give you injections more regularly . This might be difficult. Anyhow you have found this forum now which is great ! You can always get help here
PS A modest tablet of folic acid which is vitamin B9( 400mcg )works together with B12 . So do take one daily .
Dizziness was one of my symptoms. Unnerving. EOD self-injection has resolved the issue,along with all the other symptoms.Where the medics get the 8 or 12 weekly regime from seems to be lost in the mists of time. So many of us know that it is a tragically inadequate regime but clung to because it saves money and surgery time and keeps doctors protected behind a wall of illusory certainty.
I was diagnosed with PA after a year of symptoms attributed to grief after a bereavement.
Dizziness and a sense of falling while still was the first symptom to take me to my GP - “it’s grief dear”
Then I began having heart palpitations - had ECG - “it’s grief dear”
Then I started having panic attacks and anxiety attacks in the night - I didn’t go to the GP
However eventually my B12 was tested and as a result I was given loading doses of B12 plus folate and vit D which were also low. But only one maintenance injection every 12 weeks.
I felt dreadful after the loading doses and after research and with the courage and knowledge I gained from this forum, I now self inject every day - no dizziness, or heart palpitations since but I still have anxiety once in a while completely out of the blue - tends to be when I have overdone it.
It’s hard but I think you need to come to terms with relying on yourself now as sadly the NHS is way way behind the curve on PA. If you want a life, it’s still there, but only you can go get it. But you’re not alone some amazing fab people on here to support you all the way.
I made the mistake of thinking my symptoms were all grief. For a long time.
And just let things slide thinking they will get better. Of course they will get better. They did not. And have been diagnosed with quite a few things since then, but virtually all by me not backing down - nope, something is up.
Your body is telling you something. Listen & advocate. And make them provide clear answers that you are settled with - if you can not get that experiment yourself, in a safe manner with b12 - just to see.
It of course might work the other way around - grief night biologically deplete.
All the best to you & once again am sorry for your loss.
Thank you all for your help and advice. Went to A&E today and have diagnosis of Postparndial Hypotension (low blood pressure after eating). Explains my dizziness. Lots of links to B12 deficiency and autoimmune conditions. Shame GPs could not have figured this out when I told them about my dizziness 3 months ago!!
I am in the same situation get it every 8weeks but it's hell from weeks 4im so tired then can't sleep has turned into insomnia that I've had now for about 18months fed up cancelling things I was supposed to do .only thing I got was 8sleeping tablets to do 2months .hopless and now as I'm not better have put me antidepressants I'm not depressed !I'm exhausted.so all I can say is once again go back to docter if you can get on it appears all we get is a phone call however I'm going to demand to see someone I would advise you to do the same good luck x
Dizziness is a neuro symptom so I would expect you to be on the pattern for those with neurological involvement.
How many loading injections did you have at the start of your treatment?
Those with neuro involvement should get loading injections every other day for as long as the symptoms continue to improve.
There is no set time limit for how long this can go on. Could be weeks or months of every other day loading injections.
If you didn't get this then you would have a good case for asking for loading injections to be restarted. I suggest in a letter to GP and maybe copied to practice manager.
The GP can also find the treatment info in their BNF(British National Formulary) book Chapter 9 Section 1.2
See Point 1 in next link, about under treatment of B12 deficiency with neuro symptoms
You might want to point out that if B12 deficiency is under treated there is an increased risk of developing permanent neuro damage including spinal cord damage.
This might make GP pay more attention to you.
PAS have a leaflet about SACD, sub acute combined degeneration of the spinal cord that the GP might find interesting.
Have you asked your GP if you can have B12 injections more often?
They might say we have to stick to the guidelines....if they do, ask them which guidelines they are referring to, get an exact title so you can look them up yourself.
You could also point out to GP (they might feel this is confrontational) that doctors are allowed to use their professional judgement to prescribe off licence or outside of guidelines if they feel it is in the patient's best interests.
There's a lot more info I could post, just let me know if you'd like me to post more links.
OK, let me mention these 2 books right off. Could it be B12 by Sally Pacholok & Jeffrey Stuart and What You Need to Know about Pernicious Anemia & Vitamin B12 Deficiency by Martyn Hooper. OK, I was dx'ed about a year ago, however, I'm certain wife and I have both been def for years, it's just gotten really bad about a year ago. What I've learned is this: when you are being treated, injections of B12, pills, sublingual, liquid, etc. and you begin to feel better, I think people, (us included) start thinking that their getting better and slack off on shots, pills, etc. However, it takes from 6-12 months before one begins to feel as back to normal, and what is normal? in the U.S. the lab levels say healthy level of B12 is 300-700, but we've researched and learned per articles on the internet and in books (see the ones above) lab levels are very out of date and need to be updated. For anyone age 60 or older they need lab levels of 1000 or more, anything less than 1000 for those people is not healthy. Remember too, when one gets an injection, 2 days later we've absorbed it but only roughly 20% remains. It's the storage tank (so called) our reserves that must be kept to a good level. Read the books and you will learn much about Vit B12 deficiency issue. Good luck
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