Hi all, I’m desperate for some help as our doctors just don’t seem to be listening
My husband has had anxiety all of his life. He was diagnosed with complex PTSD a while ago and has had therapy which has really helped. He is also on medication which has helped a lot too. About 3 months ago he had a really bad ‘episode’ which the doctors have put down to anxiety.
He really doesn’t believe this is his usual anxiety. He has had constant ‘tremors’ in his stomach, setting off his anxiety. The tremors haven’t gone and he has also had constant pins and needles and numbness in his hands and feet for months. When I looked up b12/folate deficiency he has all the symptoms.
We arranged for a private blood test. His folate was 3.19 uh/L and his b12 was 53.8 pmol/L. The private doctor says that they are low and to contact our GP. We contacted the GP, explained all of his symptoms. The GP has arranged (after us begging) for B12 injections. She said that his folate isn’t low enough to cause problems. He is having 3 injections a week for 2 weeks, and then a blood test in 3 months for PA.
My question is, can he take folate tablets as well? To me, if his levels are borderline and he is having all these symptoms, it’s bound to be worth a try??? Will this affect his blood tests in 3 months for PA?
We are getting desperate, the symptoms he is having have already sent him to A & E as he was suicidal. He can’t cope with these constant tremors, shaking inside and it sets off his anxiety. The tremors he gets in his stomach get much worse when he sits down (that is definitely not anxiety!) but the doctors keep on fobbing him off and saying he is just anxious
If you’ve got this far thank you so much for reading!!
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Lilly_E
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Hi lilly , welcome to the forum, I am not surprised he is anxious. Folic levels not great, so I would purchase them over the counter at supermarket and take them, B12 very low. It is good that he is getting 6 loading doses. NICE guidelines state that B12 Injections should continue if neurological problems still exists after loading doses. (Many Doctors are not aware of this or chose not to do it)
The first 2 to 3 months of treatment are the worst as the body has been starved for along time.
Good luck Lilly! This forum has so much information and many helpful people. They really saved me. Learn as much as you can. Anxiety was my last symptom to resolve, and truly my best clue that, even after a few years of injections, I was still under-treated. Now with frequent enough injections my anxiety is completely gone. It does take time to see progress so have faith.
I have read that if a folate deficiency is treated without treating a co-existing B12 deficiency, it can lead to neurological problems. In a person with both deficiencies, B12 treatment would usually be started first.
Some links I post may have details that could be upsetting.
I am not medically trained, just someone who suffered for years from unrecognised and untreated B12 deficiency.
B12 deficiency can have a huge impact on mental health.
Link has letter templates covering a variety of situations linked to B12 deficiency including neurological symptoms and mental health issues. Point 5 in link is about being symptomatic for B12 deficiency with an in range serum (total) B12 result.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
"he has also had constant pins and needles and numbness in his hands and feet for months."
These symptoms would usually be considered as neurological.
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. Might be worth tracking down the local guidelines for your 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 their 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 (UK) treatment info is out of date. See BNF hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
A bit about me.....
I had physical, neurological and mental health symptoms and was put under pressure to agree with doctors that it was due to depression. They didn't listen when I said I was depressed due to not being able to do the things I wanted to do eg reactive depression and it was not the depression stopping me doing things.
I also believe I have mild PTSD symptoms from the very difficult experiences I had with health professionals which included being shouted and snapped at. Probably I annoyed my GPs with my insistence that there was an underlying physical problem causing my issues.
I still ended up with lots of labels such as psychosomatic symptoms and hypochondria and others.
I tried really hard to get B12 treatment from NHS but in the end was forced to treat myself.
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.
My symptoms began 2 years before B12d really hit me and it started with agonising stomach pain. I'd just moved house and accidentally eaten some pasta I left in the cupboard when it should've been fridged.
The food poisoning (I thought it was) went away but the tummy pain did not. I got a colonoscopy and they took 3 polyps. Thought that was it.
Then I had a scan for something else and they found thyroid nodules. So I had surgery to remove it. But all the time I had terrible pins and needles in hands and feet ans growing problems with anger and depression. Also terrible insomnia - had to move to another room in the house to sleep.
A few months after my surgery the b12 kicked off and it really affected my nervous system. I definitely had mania/anxiety and confusion.
The injections helped but it takes ages to resolve. My wife had to drip feed me CBD oil to get through all the mental anguish and try to rest/sleep.
Push your Doctors for ongoing treatment - every other day injections until he is better. He has a very low B12 score.
Don't mess with folate too much. Its the b12 thats the issue, and too much folate could make things worse.
Concentrate on getting loads of b12. Get sublingual if you can, it may work. It did for me.
Still cant work out for sure why I got a deficiency but I believe it is gut dysbiosis caused by extreme stress, poor diet and lack of sleep. I did eat meat but not in a healthy way and not often enough. But the tummy was the issue.
Try probiotics (yoghurt etc) and buo-kult tablets. Eat proper healthy food, meat and veg, and stop any alcohol completely.
Get your checks done but don't invite too much folate. It's a myth that you need an equal dose of folate for b12 to work. Keep up the greens in the diet and see how the injections go first.
Also - I had terrible tremors in my solar plexus. I thought it was subacute degeneration of the spine which made me 100 times more anxious.
Your husband has neurological problems, thats clear, as is his low B12.
You must push push push the Dr for every other day injections. Refer your Dr to NICE guidlines (sleepybunny has highlighted below) and say that he is not well and needs ongoing injections to resolve this.
Do tell your husband that it will get resolved with enough b12. Its not permanent and he can reverse it. You just need to keep going with b12 (you can't overdose!)
Just to also say that Doctors will always fob off the strange symptoms he has.
If you can, just concentrate on one set of symptoms. For me that was peripheral neuropathy/pins and needles. Drs took that seriously then.
When I mentioned weird nerves in my belly/solar plexus that's when Drs got freaked out and asked me about any history of anxiety.
We have to play the game with a system based on ignorance and lack of training.
Especially as your husband does have a history of mental health challenges, its best to avoid any further accusations of anxiety or mental health and focus on the neurological issues with pins and needles.
One day the world will come to realise the impact of b12 on mental capacity. But until then, if ever, we have to play the game to get what we need.
It's a pity it's taken this long to get his problem dealt with, but at least you got there.
It's far safer to treat the B12 deficiency before folate supplementation, but once B12 replacement is under way, it should be safe to take folate. [Speak to the pharmacist for advice.] Be careful you don't 'drop off the end' once the prescribed course has finished because he may well need a continuous supply of B12.
Keep in touch with this forum, as there's nothing much new under the sun and folks will be happy to share experiences.
"He is having 3 injections a week for 2 weeks, and then a blood test in 3 months for PA."
You mention pins and needles and numbness which are usually considered as neurological symptoms.
Does he have other neuro symptoms?
See Symptoms lists in my other replies.
I am concerned that his GP is only planning to give him 6 loading injections (3 a week for two weeks) when BNF hydroxocobalamin link suggests loading injections every other day for as long as symptoms continue to improve. This could mean weeks or even months of every other day loading injections.
You have not mentioned any planned maintenance injections.
BNF hydroxocobalamin link says people with neuro symptoms, should get maintenance injections every 2 months.
I am also concerned about what happens if his PA test result is negative.
Does his GP know that it is possible to get Antibody Negative PA?
See BSH diagnostic flowchart.
Have you managed to track down the local B12 deficiency guidelines yet?
I can't figure out your numbers in the UK of 53. something but I can tell you that I had a reading of 190 in the US on my B12 and I already have nerve damage in my legs and still have it but because I found another doctor that gave me a prescription for 52 shots once a week for a year, it saved my legs and who knows what else if I would have stayed with the 190 ---B12 reading . I take a 2500 bill now every day which only give you about 2 to 3 percent of the pill value and my B12 is around 500 now.
Hi all, thank you so much for all your responses! I was very overwhelmed and it’s been a really stressful few weeks, so sorry I have been so quiet.
My husband has had 6 loading doses of b12 and has had no improvement at all, just a stomach ache from side effects.
His mouth is now full of sores We rang the doctor and said we are concerned about his folate levels, and she prescribed him 5mg folic acid. She said that the doctors should of treated him for PA before loading doses of b12 :/
He’s had 3 days of folic acid. Stomach aches, he’s very slow with his thinking, muddled up etc. and his pins and needles/numbness are no better.
I just don’t know what the next step is! I don’t know whether we should give the folate more time to work as his folic acid is low….
I’m guessing we have to wait 2/3 months without any b12 injections so that it doesn’t affect the PA test?? I’m so worried about his pins and needles, and his anxiety is getting worse because we just don’t know what to do with the next step….
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seeing neurologist, advice on b12 injections welcomed…
Serum ferritin too high?
About German online Pharmacies. — If they follow pharmaceutical rules rules,they are not allowed to supply U.K. with B12 ampoules! 
Silent Reflux and B12 Deficiency- Any Link?
