Hello Everyone, I haven’t been here for years and I need some advice please. My hubby started having strange symptoms over ten years ago and it was discovered that he had low vitamin b12, despite eating meat. His GP said he likely had Pernicious Anaemia and gave him a loading dose of injections and then he had an injection monthly thereafter. It took some time for him to be well again and we would notice his symptoms returning after two weeks.
We then moved and attended a new GP clinic. They were not happy with his injections and we had to fight. Then, two years ago his levels were 2,000 and they stopped the injections.
Recently, my hubby has the following symptoms: forgetfulness and confusion, anxiety, restless feeling, panic attacks, numbness in his arms, he has been depressed and snappy and irritable and has been suffering from a bad back- which he has never had before. He has had cuts on his eyelids and has said that he feels like he is going mad. He eats meat usually but has gone off it lately and we supplement with Holland and Barrett’s Vitamin B12 spray.
Last year he asked for a vitamin b12 test and was refused. He has repeatedly asked since and they have refused saying he doesn’t have any symptoms! Thank goodness a nurse gave him a test last week. It has come back at 185 with the range starting at just over 200. We know it is going to be a fight to get him any treatment.
The GP had told him that he didn’t have P.A. when they took him off the injections. How can we test for that? He has red hair and blue eyes and his mother had P.A. but was not diagnosed until years of her being misdiagnosed as having MS and being in a wheelchair.
We would be very grateful for any advice. We researched all this over 10 years ago and bought Sally Pacholok’s book but are a bit rusty now so will have a read now and familiarise ourselves with any updated information but fear we are facing a fight with the NHS. Thank you.
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CarolineAnne
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Welcome back. I am sorry to read of your husband’s poor treatment and illness. I do hope he is a member of the Pernicious Anaemia Society.
First and foremost, please may both of you apply to your Trust or Integrated Care Body for hard copies of your notes. There is standard documentation for a Subject Access Request on the Information Commissioner’s Office website : -
He can then have the exact time and date and by whom of his diagnosis of P.A. and the treatment he received.
Moving GPs can be problematic but from a Medical Records’ point of view, data has to be obtained, stored and transferred properly.
The retesting of B12 once treatment has commenced is pointless. It will be high. There is literature from the British Haematological Society. A patient has every right to say NO to be tested. Informed Consent has to be gained before any procedure.
Last year he asked for a vitamin b12 test and was refused. He has repeatedly asked since and they have refused saying he doesn’t have any symptoms.
This is extremely dangerous. I do hope you know who and exactly when he spoke to THEY.
Your husband has symptoms, diagnosis, had treatment in the past, a family history. Your Integrated Health Board or Trust has a Data Protection Officer and Information Governance Team.
The new GP practice is NOT handling your husband’s data properly. So, you can use that to get his injections reinstated. They wouldn’t want someone from the National Audit Office waltzing in and issuing them an extremely large financial fine, would they ?
Think of your or your husband’s Medical Records as a bank statement.
4 July 2010 Direct Debit £25.99 House Insurance.
compared to :-
1 June 2008 10.30 a.m 5th loading dose of 1 mg/ml of Hydroxycobalamin I.M. in left arm by Forrest Gump at Dr Seuss’s Surgery.
The new GP Surgery CANNOT deny previous ‘events’ because they are already in his notes. Medical records are legal documents and Information Governance is a massive legal framework regarding data.
All you need is to write an objective letter to the right people and have a tiny bit of knowledge about the Data Protection Act (2018). There are plenty of other data laws that NHS employees have to adhere to. In your husband’s case the Records Management Code of Practice (2021) is pertinent.
Thank you, I am not sure if he was officially diagnosed with P.A. from memory I think that is what the doctor said and just gave him the injections but I do remember telling him to ask for a test for intrinsic factor, I think. I will do as you say and get him to request his medical records. It was such a long time ago that things seem vague. Thank you.
Search online for this UK document and read it thoroughly including the Background Information section.
"NICE CKS Anaemia - B12 and Folate deficiency"
Try to find local B12 deficiency guidelines used by your ICB (Integrated care board) in England or Health Board in Wales/Scotland and compare them to NICE CKS document above.
NICE are developing a new B12 deficiency guideline. It's due to be published in March.
Search "NICE draft B12 deficiency guideline" if you want to see what they are working on.
185 is really low and obviously, the spray is not helping much.
Even if it was high, it does not mean much as serum B12 is high on any kind of supplementation and does not mean that the body is getting the B12 it needs.
His symptoms are all of B12 deficiency. I suggest going the self-injection route. You can take a monthly IM shot, after perhaps some loading doses. Many including me have gotten these ampoules shipped from Germany.
Additionally, he can take 1000-2000mcg/day cyanocobalamin orals. In studies, this has found to work well. People often use the methyl version but it is not tested well and I did not find sufficient relief from it while the cyano version helped a lot, although the orals take time to kick-in and some initial injections are recommended to bring up the levels immediately. Good luck!
Agree with Mrs Tuft. The priority is for your husband to be treated now. Many people on this forum self administer and this can be done quite quickly. If you think this might be a better option then ask and people here will provide all the the info and suppliers you would need. Your GP is both cruel and incompetent and I suspect it will take time and too much of your precious bandwidth to get them to change.
Does he have a strange way of walking (unusual gait)?
Does he have proprioception problems?
Proprioception is awareness of the body in space. If his balance is worse when his eyes are closed, at night or when his view of his surroundings is blocked that is suggestive of possible proprioception problems.
For example, I used to be clumsy, bump into things and I'd fall off the pavement if someone walked directly towards me and my view of what was ahead of me was blocked. I wobbled terribly at night time.
The reason I'm asking these questions is that delayed or inadequate treatment of B12 deficiency (from whatever cause) can increase the risk of permanent neurological damage.
In severe cases of B12 deficiency the spinal cord may be affected.
If GP is reluctant to reinstate his injections then might be worth discussing this PAS leaflet with them or include it in a letter to GP.
I preferred written communication and always kept copies. A paper trail is useful if you need to make a formal complaint. See thread about Patient Safety in my other reply.
PAS leaflet about SACD, sub acute combined degeneration of the spinal cord
You would need to be a PAS member to access the whole leaflet.
If neuro symptoms are present, GP should refer him to a neurologist and possible a haematologist too.
See Management section of UK document "NICE CKS Anaemia - B12 and Folate deficiency".
It gives recommended treatment patterns for B12 deficiency and when a patient should be referred to a neurologist/haematologist/gastro-enterologist.
I met several specialists and only one thought B12 deficiency was a possibility. Fingers crossed you get one who understands PA and B12 deficiency but be warned that seeing a specialist is no guarantee of better treatment.
"He has repeatedly asked since and they have refused saying he doesn’t have any symptoms! "
Maybe you could fill in PAS list below and attach it to any letter you write. I added extra symptoms at bottom of page.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
I was forced to treat myself as requests for B12 injections were refused.
Some UK forum members get extra B12 injections from a private GP or beauty salon (expensive), some try high dose oral B12 (1000mcg or higher) but this doesn't work for some ( didn't work for me) and some as a last resort try self injection (SI). There is a pinned post about SI.
When I first went to the GP back in 2015, it was with extreme fatigue, daily diarrhoea and lower back pain that prevented me from standing up straight for any length of time beyond about 5 minutes. My legs would start to shake.
Nothing in particular was found to explain this at first. Cancer of the bowel was ruled out first on a two-week pathway. Later blood tests revealed B12 deficiency - 196ng/L with a local normal range starting at 197 ng/L. The GP said luckily they had caught this early, and that I needed to book in 6 injections with the nurse, via reception.
I'd never heard of B12 before. When she told me that, I thought the 6 injections were all that was required to get back to normal. By the fifth injection, having seen no change, I asked the nurse. She told me that these injections were for life, and that after the six, I'd need one every three months. That it would be up to me to book them.
When I asked my GP what had caused this, she said that it did not matter, since the treatment, whatever the cause, was the same.
WHY would that be true ?
The truth is: it isn't.
I failed to respond to treatment and continued to get worse. My MMA was tested and it was found that I had functional B12 deficiency. Both my B12 and the MMA that it is supposed to link up with remained in the bloodstream. So my injections were increased to 2 a week. Three months after the start of this new regime, I finally stopped having to ask the nurse if the injection had been done - because I actually felt the injection from that point on. Progress.
l now self inject at this frequency because it works for me. Management of symptoms, not a cure. My folate, ferritin, vitamin D, thyroid were all monitored regularly, as all can be difficult to keep at healthy levels, but NEVER my B12. "No point" my GP rightly said. It would have told her nothing beyond the fact that there was over the measurable amount ( over 2000 ng/L ) in my blood. And that is what I need to stop return of my symptoms and further deterioration.
I recognise ALL of the symptoms you have mentioned regarding your husband (well except the cuts on his eyelids, which is a new one on me personally ).
There are many odd symptoms. I think my oddest was an altered sense of smell, one that had me convinced that a local supermarket reeked of sewage.
Holland and Barrett's spray did nothing for me.
Your husband is likely to have B12 deficiency due to pernicious anaemia (PA) because he has had a diet which includes meat yet was B12 deficient, because he has an immediate close family history of diagnosed PA, because he has B12 deficiency symptoms and because his previous GP believed that this was the case; IS the case, since there is no cure.
With all this, I can think of no reason for refusing to test for B12. Once the below-range result had been given, there is then no reason left not to start treatment again - with a loading dose. With every other day (EOD) injections if any of your husband's symptoms are neurological for as long as improvements are still possible. And with an apology.
An intrinsic factor antibody (IFab) test, if positive, will get an indisputable (well 95% accuracy is about as near that as medical science can get) PA diagnosis. But will only pick up about 40-60% of those with PA. Martyn Hooper, founder of the Pernicious Anaemia Society, had to have three tests before getting a positive result.
If you are ready to have that discussion, to attempt to get the new surgery to treat your husband properly, to try and get a PA diagnosis on his record (keep a copy yourself), then you will need to start reading the latest information and research. NICE guidelines (advice to GPs) are due to be published in March this year but you can read the draft copy (some 40-odd pages) - or if you want to start with something less bulky, start with Prof. Wolffenbuttel's article on the PAS website - the very final link from Sleepybunny's informative post.
Self injection may sound like a drastic measure. By comparison with continuing to worsen due to lack of treatment/ undertreatment ? Not so scarey.
If all else falls on deaf ears or takes too long, it is worth considering.
God help you! Because the NHS probably won't! They never helped me , my mother or my father. I have to inject twice a week. My father was diagnosed with PA too and never treated for it. He died after a fall 19 years ago, my mother was cured by her GP as he checked her B12 serum shortly after two years of injections and announced she didn't need anymore, she died two and a half years later. I got her B12 checked while in hospital and it was barely 200.Buy B12 from Abroad. Now.
Good morning CarolineAnne. I'm so sorry to hear what they've done to your husband. I don't know if anybody mentioned it because I haven't read all of the replies. But before he starts injecting B12 again he should have certain tests. since it's been a year he no longer has B12 in his system and he could take the test necessary for pernicious anemia. Like an IFAB test. That's an intrinsic factor antibody test. But if you're having trouble even getting a B12 test, I doubt they're going to want to do those. You're in a catch-22 where your husband needs to be treated right now, with B12, but if he doesn't get these tests and you inject B12 it will muddy the waters and you'll never get an accurate diagnosis. But it also seems safe enough to say that with his symptoms and what you just explained that he definitely has it. And he needs injections for the rest of his life. The frequency depends on him because everybody's different but a lot of us inject every day sometimes more sometimes less. We buy our B12 from Germany and inject ourselves. You need to decide whether you want accurate testing or immediate treatment with b12. Because once you start treating with B12 the waters become muddied.
I'm very sorry that they did that to your husband he's been suffering unnecessarily and terribly for over a year. I feel so badly for you. But I can tell you that when you start the B12, those symptoms will start subsiding. And he will not feel so irritable and he will not feel like he's losing his mind. Right now he IS actually losing his mind and it has to do with the B12 deficiency.
Also, because of the pain in his spine, I do believe it sounds like he could have Subacute combined degeneration which affects his cognition and his legs and arms. The only treatment for Subacute combined degeneration, (sacd) is B12. So everything that is wrong with your husband will start to get better when he gets the proper amount of B12 on a regular basis for the rest of his life. If you can't find a doctor to run the test again, I feel, and I'm not a doctor, that treating your husband with B12 from Germany on your own, would help him tremendously.
I don't even go to my doctor anymore. They don't give me any injections they don't treat me for anything. They found everything that's wrong with me and now I treat myself with B12 because they know nothing and don't care. It's been a long 2-year Journey and I'm on my third year right now and I'm getting better. There's nothing docs can do to help me anyway because B12 is the only treatment for what's wrong with us and they won't give me enough. They can give you pain pills they can give you other things to deal with what comes along with it but the only treatment for what's wrong with us is B12. But you might have your iron and your folate tested as well and your D3. We often have deficiencies in those areas too. But right now it's imperative that your husband get B12. But you have to decide whether you want the testing before you start treatment or not.
Knowing what I know now about my doctors, I would not worry about any more testing and I would just get the B12 and start treating myself. But if the tests are important to you then you need to get those. The only thing all my tests did for me, was tell me exactly how much damage b12d has done to me. It didn't change the way my doctors treated me, it didn't change anything except for what I know. And what I know is, they know nothing and I need to inject myself and I don't need them anymore.
I am having to go to a GI doctor to get proof of my PA. PA messes up your stomach and a scope can see it. My GI doctor gave me a PA diagnoses and is going to help me in getting b12 prescribed. This is all in process and I'm in the USA, but this is how I've had to go about proving that I do have PA and can't absorb. I was diagnosed 15+ years ago and don't have access to that diagnoses. In the meanwhile I am SI-ing.
Yes PA does start in the gut. So if they found that you're parietal cells were damaged, that is a clear indicator. Even if you're injecting b12 and it muddies the waters, the parietal cells tell the story. Good luck.
The lining of my stomach is almost smooth. A normal stomach has many deep wrinkly folds. You can see in the pictures, it is atrophy, according to the doc that is par on course for those with PA. I'm sure the severity is different in different individuals, but it is a sure sign you cannot absorb.
thank you to everyone who has replied. I can’t believe we are at the start of this journey again after researching it over ten years ago. I had hoped that things might have improved on the NHS. We have an appointment tomorrow so fingers crossed. Thank you for all your support and information. x
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