Hi all - my husband had been going downhill gradually for about 3 years. He started to lose his confidence and slowly changed from a larger than life, jolly, capable businessman to a man full of fears, losing things constantly, bursting in tears, feeling depressed and very forgetful. He had also lost a lot of weight. He finally broke down and said that he thought he may be losing his mind. After urging him for months to see the doctor, he finally went and was very quickly diagnosed with Vitamin B12 deficiency and so far has had 4 loading does with 2 more to come. I can see an improvement in him already, not only does he look better with a much better colour, he is a lot more cheerful which is lovely to see, I find it hard to see how the lack of a vitamin can make such a huge difference! and wonder how many people out there are being diagnosed with depression/early dementia through lack of testing.........
My question is this, can you B12 Deficiency but not have PA? He has always eaten lots of all the foods that contain B12 so I can't think it's just a lack of it in his diet. When he's had his loading doses he won't be tested again for 3 months. Will this show if he can't absorb it, and does this mean he has PA? Am a bit confused at the moment!
Would be grateful for any help
Christine
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christina1952
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As his blood-test showed B12 deficiency, he should have been further tested for the antibodies to the Intrinsic factor The I.F. is needed in order to absorb VitaminB12 (only found in animal protein i.e. meat, fish and dairy products.) If this antibody shows up, B12 cannot be absorbed, and the pateint has Pernicious Anaemia, and must be treated for life, usually with B12 injections. In some cases the antibody doesn't show up but the patient still has P.A. Some P.A. patients find benefit from sub-lingual B12 lozenges, patches or nasal spray. I didn't. I have to self-inject, as my G.P. will not give me more than 1 mg injection every 3 months.
You can have B12 deficiency without having P.A. Vegans and strict vegetarians(No animal protein.)But you said that your husband ate those foods with B12, so it sounds like P.A. A test in 3 months time will show a high level of B12 after all those injection.. But you MUST find out if he has the antibodies to I.F. When I was tested for I.F. I had been taking huge quantities of B12 bymouth ,was covered in patches etc, but the antibodies showed up.. Injections are the only way for me.
And YES there are no end of people with the depression that comes from B12 deficiency. They are treated with anti-depression tablets. A lot of them are in care homes. As we get older, we do not absorb vitamins and minerals so efficiently due to lack of stomach acid. B12 deficiency, irrespective of its cause, leads to mental and physical deterioration. Please sign the petition to Parliament, regarding better treatment for B12d and pernicious anaemia pateints.
I had a much-needed laugh reading "...had been taking huge quantities of B12 by mouth ,was covered in patches etc, but the antibodies showed up...". I can picture it so clearly in my mind!
Thanks for clear helpful information, in addition.
Great to hear from you. I can tell you -I looked ridiculous covered in those B12 patches! But was past caring. I'd had to go to a private G.P. to get tested.for I.F. antibodies, My NHS G.P. had told me that my B12 serum levels at 150 thingies was a "bit low". I should eat plenty of leafy green veg. and come back in 6 months time. (confusing B9 with B12!!!) I had numb feet, was very dizzy and confused,and was totally exhausted. !!! I'm sure that there are no end of people out there with similar stories.! We all have to do everything possible to get help to others who are suffering. I was lucky enough to 1) have a computer , 2) the means to go to a private G.P. 3) the means to buy B12 injections over the internet. 4) to have the help of all you folk at the P.A.S. (Must send a regular donation to them, as they are struggling financialy.)
I am so grateful to those antibodies I can tell you.!!!
All the best to all of you out there! AND A HUGE THANK-YOU TO MARTYN HOOPER ! Where would we be without him???????
His story sounds like mine. I got the B12D from stomach surgery. Too many antacids also, and bacterial infection from heliobacter pylori.
It sounds like he has had neurological symptoms like I did. The short term memory seems to go first and also a sort of depression and brain fog, once he starts on injections some symptoms improve immediately but then return. It is like a roller coaster. Steep up hill right after the injection and then gradual downhill.
He should start a log book of medications versus return of symptoms. A neuro-
Psychologist friend put me on to measuring my mental ability and scoring on the day. Games like mahjong stimulate short term memory. I also do sudoku. There are also a lot of memory testing applications on the Internet.
I found I ran out of B12 early. Both in the uk when I was in Hydroxocobalamin and also in the USA where I'm now on cyanocobalamin.
I currently am on weekly cyano injections and find I've leveled off. It has been 8 years coming back.
The log book will also provide evidence to the GP when you ask for additional/more frequent injections. Any further B12 blood tests will only confuse the GP and he may think his B12 levels are now normal. From now on any blood result <900 pg/mL is too low. Mine are >1500. You cannot get too much B12.
But he will also need to supplement with folic acid to allow the B12 to fully function. The max available by prescription is 5mg. I take mine over the counter and can only tolerate 3.2mg per day. The log will also help find this balance point for him.
From now on measure the severity and treat the symptoms.
Also log all food and drink. I found that I had very similar symptoms from gluten and dairy. This all seemed to come on at the age of 50.
If you suspect a food item is causing issues, remove it completely for two weeks to get rid of all toxins in the gut and liver. Then reintroduce and monitor over the next 48 hours for the symptoms to reoccur. It takes this long sometimes because the gut and the hepatic loop (liver, bile, small intestine, and portal vein) are involved in recycling B12 (and other products & toxins).
Some symptoms seem worse right after the jab. This is because when the cells in the body get B12, metabolism takes off. It floods the blood with metabolic byproducts that the liver and other organs need to filter out. These specific symptoms are "good". I get a bout of diarrhea on the day after the jab. The worse the diarrhea the lower I know I was on B12 before the injection.
As nerve damage is repaired, one symptom is pain. This is because the signal is stronger but the brain takes a few days to recalibrate to the stronger signal. This makes it hard to start in the morning and get going. However once up and moving things improve significantly. This pain symptom is another one of those counter intuitive "good" symptoms.
Mild exercises that stimulate the nerves to move the muscles also stimulated healing and repair of the nerves. "Only use the nerves you want to keep." Is sort of an adage.
mental exercises will also stimulate the nerves of the brain to get repaired. I filled my spare time on my phone playing solitaire. I've since lost that phone and now need to find something similar.
Good luck find his path through all the symptoms.
Is he on antidepressants? I found these made matters worse for me. Any of his meds that don't seem to improve his condition talk to your GP and have them reevaluated.
I suggest that he, and all of us with this condition, also keep copies of all Lab Tests. I'm able to get mine on hospital website. I find that a spreadsheet such as Excel makes it easy to keep track of all this.
He really does need to be tested for antibodies to Intrinsic Factor (not gastric parietal cells). A positive result strongly indicates PA. A negative result doesn't mean he hasn't got PA - it could be a false negative.
There are lots of reasons why he may be B12 deficient without having PA. Does he take antacids or PPIs (Proton Pump Inhibitors)?
Also, making him stop for 3 months to see if his levels are normal should count as cruel and unusual punishment. The guidelines clearly state that treatment should be based on symptoms.
I'm so glad your husband was able to get an early diagnosis.
As you say, many people, including my vegetarian relative, who was misdiagnosed with ME for years and then dementia, struggle to get adequate treatment. Happily, she is now doing well on monthly B12 injections and also supplements with Jarrows Methylcobalamin 5000 mcg sublingual lozenges - others find oral or nasal sprays, etc. work well for them.
There are many reasons for B12 def. but one is low acid, (especially as we become older) leading to gastric atrophy. This makes it difficult to absorb nutrients from food. Vitamin B12 is particularly difficult to absorb as it goes through a more complicated process. Having had gastritis, H/Pylori, etc. for many years and treated with PPIs etc. which deplete B12, I now find taking several spoonfuls of sauerkraut (better than any probiotic) has hugely alleviated stomach symptoms and is, hopefully, healing the little villi in my stomach, and so helping absorption of B12.
Here are some links which you may not have seen that explain more :
The above latest BMJ research document is supported by many research papers and has a useful summary. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....
The symptoms of PA are actually the symptoms of B12 deficiency.
Deficiencies can either occur because you don't have enough in your diet (vegans) or else it occurs because you have an absorption problem ... of which PA (an autoimmune response that destroys either/both the cells in the ileum that absorb B12 or the binding agent that enables them to absorb.
Other causes include:
- lowering of stomach acidity - generally as you get older
- drug interactions - which includes a lot that are used to treat symptoms of B12D such as PPI's for heartburn, painkillers .... some of the ones that aren't linked to actual symptoms of B12D include metformin used to treat Type 2 diabetes, HRT (progesterone part of the cycle ... which is unlikely to be a factor here :)).
- gastric surgery affecting the ileum
- genetic abnormalities affecting the ileum.
Unfortunately the tests for PA aren't very accurate so you can get negative results for that but still have PA as the underlying absorption problem.
If your husband has neurological symptoms - pins and needles then recommendation by BCSH is for loading shots to continue until there is no further improvement and then maintenance shots every 2 months.
You may find that whether the maintenance is 2 months or 3 months it is quite common for people to run out of B12 well before maintenance shots are due so if the symptoms start returning then don't be surprised - there are plenty of options to explore in supplementing if that is the case.
Because the body stores B12 in the liver and then releases it through bile into the ileum for reabsorption it can take a very long time for a n absorption problem to become a full blown deficiency. GPs are generally very unaware of the range of symptoms caused by B12D and the tendency is to treat symptoms these days rather than look for underlying causes so I suspect that there are probably a very large number of people who are suffering unnecessarily - depression is one misdiagnosis - but ME and MS are also frequent misdiagnoses ... and whilst the condition goes undiagnosed the problems just get worse ... particularly the risk of permanent nerve damage.
I suffered 4 decades of depression - 3 decades of neurological problems before I finally discovered that I was B12 deficient - at which point my balance was starting to get very dodgy - resulting in a fall at home that left me hospitalised with a broken ankle that needed pinning - which was where the B12D showed up in bloods. It took me another 15 months to actually figure out what B12D actually meant and to learn that I needed to treat myself.
You mention that your husband is to have a series of 6 loading doses.
As Gambit says... if he has B12 deficiency with neuro symptoms then he should receive loading doses until he stops improving. This could mean loading doses over several weeks or even months.
The info is in the BNF (British national formulary) Chapter 9 Section 1.2
Every GP will have access to a copy of the BNF in their surgery and may be willing to show this to interested patients.
In the past I have given GPs lists of my neuro symptoms and asked GPs why I did not receive the treatment outlined for those with B12 deficiency and neuro symptoms. There is a small window of time before neuro damage risks becoming permanent.
It's very heartening that you are forthright and compassionate about the effects of b12d on your husband's cognitive and psychiatric health.
B12 deficiency can cause real major cognitive and psychiatric changes in some people. I think one of the best things loved ones can do is acknowledge and seek to understand this. It's incredibly supportive and immensely helpful in finding effective treatment.
All too often these symptoms are disregarded as anxiety or irresponsibility and the patient is blamed, brushed off, or subjected to misdiagnosis and harmful psychiatric drugs and the deficiency progresses.
There seems to be some sort of resistance in medicine and in society to the idea that some physical illnesses can affect personality. This makes it very hard to get treatment and understanding when you are the one suffering. I wish my family members were as clear-sighted as you.
Definitely look into the PAS website for an overview on b12d causes and other informative links
Many thanks - We run our own construction company and as I'm with my husband most of the day it was becoming very obvious that something was wrong, very gradually over around 3 years. It's been a horrible couple of years for us as my husband had lost 2 brothers in a short space of time and our son has been extremely ill with CD which cumulated in a life saving operation a few months ago. It has been unbearable watching him suffer and I put some of it down to this as we have both been at the end of our tether emotionally.
One of the brothers who died was around 18 years older than him, was diagnosed with dementia 5 years ago and the progression was very quick, and I think my husband's reluctance to visit the doctor was because he was scared he was going the same way and he's relieved that it's not that.
I'm so grateful for all the information you are giving me, I'll be watching very closely now and if he starts to deteriorate after his loading doses, will make sure he goes back and tells his doctor.
The other thing is, although I'm making sure he has lots of broccoli etc., should he take any supplements or would it be best to wait for this results in 3 months time.
If by CD you mean Crohn's Disease that is interesting and could be telling. Your son needs to know that B12 deficiency often occurs in those with CD, with or without surgery. He should be on the watch for symptoms and his primary physician should follow and test for deficiency. Sometimes they need to be reminded; also, it would be unusual for his surgeon (surgeon in US, but referring to physician who performed operation) to follow re B12.
Crohn's is known to cluster in families, but apparently takes complex genetic testing to confirm genetic basis. Has your husband ever had symptoms/signs of CD?
I have family member by marriage with Crohn's and know how terrible it can be.
Here is a link from CD Forum which may be helpful re CD and B12 Def.
Thanks all - am going to buy the books today! With my son and his Crohn's, he was undiagnosed for 10 years, suffered terrible bouts of pain but was treated for depression for all those years. Prior to his recent operation, everything he ate came back up again for many weeks, he had to have nearly all his small bowel removed and as he can't absorb anything on his own, is on parental feeding until the remaining bit of small bowel recovers and he has his reversal operation. As soon as he received the nutrients into his bloodstream, his depression lifted within days and mentally he's in a better state than he has been for years. This shows the horrible effects of being unable to absorb nutrients has on the mind.
I'm getting nervous about my husband. Initially he seemed much better and on some days he is, but he seems to be getting very anxious again. He had his last loading dose yesterday, but over the last couple of days he's talking at 100 miles an hour! and says his head is full of thoughts whizzing around and he's feeling very anxious. Is this a normal reaction to the injections? He has been eating better but still not sleeping well.
I've got an underlying niggle that something else is going on apart from the B12 but it's very early days yet so will see what happens over the next few weeks and go from there. Am not sure he should be supplementing with other things at this point? One of the symptoms he had before the injections was night sweats and this has happened again over the last 2 nights.
Am a bit overwhelmed with all the information at the moment as I thought he would get the injections, possibly for life and he would be OK.
Hi Christina, when I first had my loading shots my mind was also going at 100mph. I also felt quite agitated and angry (I'm normally very chilled). This passed after a day or so and things settled down. One thing I have found that brings good results is a good Vit B compound. Almost all B vits benefit brain/neuro function in some way. In the UK we have Barocca which although quite expensive at about £4.50 for 15 days (there are cheaper alternatives just as good) it made a huge difference to me. Just about every function improved and I now use it continually. Hope this helps.
I'm sorry your son went so long in pain and without a correct diagnosis. It's good that he is receiving parenteral feeding (TPN?) as that provides needed dietary elements that cannot be received in "routine" intravenous infusions. I hope he soon recovers enough to have his bowel repaired.
Others here on our board have longer experience with B12 deficiency symptoms and replacement, but I have read that as the B12 kicks in it can initially actualy cause activation of the symptoms for which it's being given. Also, it may be too early to determine how the B12 injections are going to help.
That said, has your husband had a psychiatric evaluation in recent past? I'm not thinking in terms of dementia, but believe eval would be helpful in ruling out a psychiatric illness perhaps in addition to B12 deficiency. Have anti-anxiety medicarions been tried?
You're going through so much, and hope you have some backup and support yourself. May I ask in which country you live?
Many thanks Leilani and I think you may be right in a return of the symptoms after the injection, as yesterday he was much better again. I'm sure that some of his symptoms are a natural result of seeing our son so ill and the death of his brothers but with the deficiency it has made it even more difficult to cope with it all. My son had cancer when he was 11 years old and he fully recovered and then he gets hit with Crohn's. He himself never says why me, but I do, and inside I'm so angry that he should have to go through this and life is just so b----y unfair sometimes. Over the last 6 months, sometimes I've wanted to just run away from it all as it's been so hard, but on the outside I stay calm even when I'm in bits. I don't let my husband know how worried I am about him but will just be watching and seeing how he get's on, and also getting all the information on here so I know what to do if he starts to go downhill. Its very helpful for me to be able to come on here, a sort of therapy as others are going through it all, so I may come across as a bit over emotional at times.
I'm keeping my fingers crossed that things will get better......
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