Just joined this as not sure where else to turn! My Dad is 72 and in November 2020 his bloods showed that he was low in b12 (sorry don't have exact result). At the time I was baffled by this as he was eating eggs daily and ate red meat regularly too.
After a quick search I read about PA and a lot of the symptoms listed aligned with how he had been feeling - particularly the debilitating fatigue. He had also been suffering with pins and needles for years. He was prescribed oral b12 and I explained this was unlikely to help if it was indeed PA causing the deficiency but he wanted to go by the doctors ordered and give it a go. I should mention he also suffers from Hypothyroidism and I know the two often go hand in hand. Anyway, needless to say, the oral b12 did nothing for him. I asked his doctor at that point if he would trial the injections and he said no that his b12 levels were now 'normal' (sigh) based on the serum b12 test which I explained was not a reliable indicator.
Anyway, long story short, I have been back and forth with his doctor and he is still refusing to trial the injections. He did do other various tests such as the one which looks at the size of your red blood cells (?) and for the intrinsic factor antibodies which came back negative but I know it can do even when PA is present. The GP keeps just sending him for the bog standard bloods to see if anything is showing up and other than low b9 (he is now on 5mg Folic acid) and a slightly raised TSH (4.8) nothing was really explaining the chronic fatigue.
So, I found a lady near to us who administers b12 vitamin boosts, and he started to go to her for weekly and now twice weekly injections. He has noticed an improvement in his energy levels and brain fog and really puts it down to the b12. I told his doctor this and he said it was probably placebo!!! Still refusing to trial the injections as said it is not possible he has PA as he has never been anaemic (is this true?). Anyway, at the moment, dad is paying £35 per injection so we need to figure out where we go from here.
If anyone has ANY advice, I would truly appreciate it. Are there any other blood tests we can try, even if we have to pay privately? Has anyone tried Blue Horizon? Should dad keep going twice weekly or what kind of frequency do people tend to inject?
Thanks in advance
Clare
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Welcome to the forum!! I can't stay long so this will be short for now, other will be along to give more info
First, your dad is lucky to have such a supportive daughter
Typically treatment with hydroxo b12 is every other day (EOD) injections 'until no further improvement' when there is neuro involvement , that includes pins n needles. After that it's a matter of slowly titrating down and seeing how often you need them based on symptoms - it is very individual.
2x a week isn't horrible but easiest will be to get your own supplies and self inject EOD, i believe it comes to less than 1 quid per shot this way.
Medichecks has a private bare-bones PA screening panel but most of it will be meaningless since he's now on injections. Everything will come back 'normal' such as MMA, Homocysteine, and active B12 (last two you would have to get elsewhere). So best might be to periodically retest intrinsic factor antibodies. You can also get gastric parietal cell antibodies tested. You might also want to get yourself tested at some point, PA can be hereditary.
You do NOT have to have anemia or RBC involvement with PA/B12D. Up to 20 or 30% cases can start with only neurological involvement. This is a common misconception.
Google "the many faces of cobalamin deficiency" by Wolfenbuttel from the mayo clinic papers - it is a freely available journal article, and in the beginning has a nice list of common misconceptions. Sorry am unable to post links right now.
Hope this helps for now. I am sure Sleepybunny will be around to give you a comprehensive set of links.
Also search for the user < wedgewood > and their replies to other posts , lots of info about ordering b12 from german pharmacies. I would wait to order until it's a bit cooler as b12 can get damaged above 25 celcius.
Welcome to the forum, Jade has given you good advice.It will take time for complete recovery, and it's good that he can feel the benefit already. It shows that your dad needed the injections.
Are you adverse to giving him injections yourself ?
I have had to do this with my partner in the last 6 months,
But it is well worth it.
You are paying £35.00 per injection, for double that (£70.00) you could buy all you need for around 100 injections ! .... makes you think !
Definitely makes you think! Never thought about injecting him myself, feel like I would need some training! But Definitely something to consider. Thank you
Perhaps the lady who injects him would help you Or perhaps go with your dad and observe how she does it. .... another thing perhaps she would let you have the used syringe and you could practice with an orange. There are also videos you can look at.
Please be aware B12 tends to run in families, so lookout for yourself and tell tale symptoms !
Sorry, but I'm just venting at the situation and our apparently 'wonderful' medical service. And the word placebo, which I must've heard 10 times in the course of this B12d journey. Sorry to hear of your worries over your Dad.
The man deserves so much better treatment than this.
Is there any way you can share the blood word results, with ranges? I know my Dr just told me everything was entirely normal, but until you see the evidence it's just his word. And you're entitled to receive copies of all the blood work you get.
I'm sorry to say but the medical community is pig-ignorant over nutrition and vitamin deficiencies. It's frankly shocking how widespread this ignorance is. And it drives most of us to take matters into our own hands.
If you can afford the shots then at least 2 per week. But in the end, your Dad will probably need more and so I'd recommend preparing yourselves for self injection every other day for at least 3 months.
Also, I think the Doctor is falling into the trap of believing that Pernicious Anemia is the same thing as B12 and Folate deficiency anaemia.
It isn't.
It's a word that is meaningless in its truest sense. It's a form of gastritis that isn't the same as having anaemia.
I think if it were given a different name, it may help us all out TBH. But I suspect this is why the GP is insisting that he must have anaemia to have pernicious aneamia.
Thanks so much for taking the time to reply. I have requested a copy of his bloods dating back to Nov 2020 when his b12 was first recorded as being low. Thanks again
PA is a confusing term and it does tend to lead medics into thinking it is about anaemia so it may be better to talk about B12 absorption problems and B12 deficiency.You can be B12 deficient without having anaemia - about 20% of patients don't have anaemia when they first present. Things get more complicated because B12 absorption problems can also affect iron absorption leading to two competing anaemias and it can make interpreting the blood results difficult.
You could try pointing the GP at the BCSH standards on diagnosis of cobalamin and folate disorders
and also at the area of the PAS website specifically aimed at helping medical professionals improve the diagnosis and treatment of B12 absorption problems.
Lots of good advice given already but I thought I’d just add my experience regarding injection frequency.
I started being given injections every 2 months by my GP and this was moved to monthly when I found that my symptoms (exhaustion, brain fog, losing words) came back before the next injection.
I was still getting a return of symptoms before the next injection so I decided to self inject weekly and that was almost good enough. Eventually I settled on twice weekly and this allows me to live a full and active life.
Since being on twice weekly I have experimented with stretching out the gap between injections but this leads to a return of symptoms which takes a few weeks to get rid of.
From what I’ve read on this forum, we’re all different and it’s important that your Dad finds the injection frequency that suits him, probably by trial and error.
Welcome to the forum. As Jade has mentioned, please check in with thyroid uk site. Your Dads GP is an idiot. Thyroid of 4.8 is at the top of the range, he really needs his dose increased to bring it down to around 1-2 . The symptoms of fatigue and pins and needles apply to both thyroid and B12.Do check in there, there’s invaluable information, as on here too.
Hope you soon notice a difference in your Dad. Best wishes
Thank you. I am going to look more into his thyroid for definite, his results had actually been checked weeks before and they said no action was needed. It was only when I asked what the actual level was that they said oh yes it is slightly on the high side maybe we could increase his levothyroxine. Anyway, thanks so much for replying.
Clare, Your story/situation is near and dear to my heart. I do not understand why in the UK there is such an issue with giving B12 injections. They are both cheap and harmless (no toxicity). My dad passed in 2016 of undiagnosed PA. All the symptoms, strange gait, neuropathy, severe fatigue, most everything PA offers. I watched him wither away to dementia, blindness and to nothing as I was ignorant at the time and so believed in his doctors. Then in 2019 I started having the same symptoms and was finally diagnosed with PA in summer of 2020 (PA can be hereditary btw). I did this by ditching most doctors (I went through 14 in that first year) until I found one that understood and was willing to listen. Too late for my Dad but now I am on the mend. My heartfelt advice is this if you're not satisfied with your doctor, if he/she is not answering your questions concerns to your satisfaction ditch them. I mostly use private doctors now, I pay through the nose but what price do you put on your health or your life. Honestly B12 deficiency is just not uncommon with elderly even those without PA so I am befuddled at your doctors response. Any elderly that exhibits those symptoms should be given B12 injections. That's my own non-doctored opinion.
I am also a bit befuddled as to why they even test for IFAB. It is known that this test is unreliable and only 50% of those with PA will test positive. A better antibody test is Parietal Cell Ab. This test 90% of those with PA test positive. In the US they test for both along with the other tests homocysteine and MMA etc. I came back positive for PCAB and negative for IFAB. Not at all uncommon. I don't even know if that PCAB test is available in UK but I would advise to ask for it.
There are many great members on here that are great at navigating the UK healthcare system of which I really know nothing about.
Wow. Thank you so much for this response. I am sorry to hear about your Dad. I truly appreciate all of this advice. I am going to change his doctor and also get an PCAB test as soon as possible for him. A million thanks for responding
Thanks for replying. Interested to know.. how did you manage to get it on prescription if you had a negative test? Similar situation to my dad in that his serum b12 was low (137 I think)
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local B12 deficiency guidelines
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down the local guidelines for his area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
Read blog post below if you want to know why I urge UK forum members to find out what's in local guidelines.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date. See BNF hydroxocobalamin link for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
If you've got some time and energy, wade your way through the threads below.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
There should be some useful quotes from the UK B12 documents that you could include in a letter to his GP and may be copy it to the practice manager as well.
It's possible that you may need your dad's signed, written permission to act on his behalf.
If he still has capacity to act for himself but is in danger of losing it, you may want to discuss Power of Attorney with him.
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters brief, to the point and polite. Harder to ignore a letter in my opinion.
3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
You and your dad may want to discuss with GP that B12 deficiency can lead to permanent neurological damage if not treated adequately, including damage to spinal cord. See info below on SACD.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Results of tests such as MMA. Homocysteine and Active B12 (Holotranscobalamin) will be affected by recent supplementation/injections but maybe useful in some situations.
Have read that gastrin and pepsinogen tests may be useful in helping to diagnose PA.
"Still refusing to trial the injections as said it is not possible he has PA as he has never been anaemic"
Quote from NICE CKS B12 deficiency anaemia and folate deficiency anaemia
"A lack of vitamin B12 (with or without anaemia) can cause complications."
Track down the local B12 deficiency guidelines for his CCG/Health Board and see if document has any similar quotes in it.
If you don't mind people knowing his CCG (Clinical Commissioning Board) or Health Board then you could mention it on this thread and maybe a forum member might be able to find them if you can't.
I think people should be careful with how much personal info they reveal to protect their privacy and privacy of family members. Posts from HU can sometimes appear on NHS website.
To change this post to a more private setting (so only people who visit this forum can see it)
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Dad has GP appointment - some info required to be armed!
Help re B12 and folate treatment please...
My GP wants me to have blood tests...
Hope you can help me, posting for my dad
HELP PLEASE STUPID GP
