Ongoing b12

Started this thread (as suggested by sleepy bunny)

It is regarding my partner and his struggle of late. He got infection early november, antibiotics then had to have steroids spray as he still not well from infection. Since then developed sciatica and muscle pain, back and groin pain.

Anyway last week pain was so severe he was prescribed co codamol, which caused him to become delirious and having to call for ambulance. Medics suggested either water infection or possibly a reaction from codeine along with maybe low b12. (He had low b12 about 4 years ago and been on tablets since). Paramedics emailed doctors for a face to face appointment. Seen GP yesterday (not the most helpful of gps !) Explained, dizziness, (falling on to logburner) severe leg and back pain.double vision etc etc. Dr examined him, and prescribe different medication. I asked if he could have a blood test plus b12 test). NO, he said not for three months ! As he had b12 done in October. In fact this was October 2019 ! ( dr needs to go to specsavers lol) Rang surgery to point out mistake and they said they would inform dr. Well this morning phoned for the third time and receptionist booked him the tests (our receptionist unlike many are really good and helpful).

The problem has been that the original doctor told him to buy multivitamins , they didn't agree with him so have been supplementing with B12 tablets. The B12 tablets helped raise levels to over 200, But the latest doctor was some what angry that we were self supplementing and that the NHS were not involved with supplying b12 .

The original NHS doctor told us to buy our own, now they are angry fours years later we do that. We can not win.

I will just await the results before doing anything further.

Bring back family doctors, where you have continued care and not two or three doctors doing things two or three different ways.

[Nackapan]

My mum had very similar problems with co codamolAlso j thought getting dementia but if was yet another UTI

Akdk ovef medication of BP drugs

Ask fir a drug review to discuss side effects

Hers turned out to be meniers disease

Also needed b12 injections

I have to organise every 3 months.

Needs tgdm 2 monthly j think.

I woukd wait for blood tesrs.

Shoukd show if an infection still going on.

Ask for more tests

I F A ect

Or a trial of b12 ?

All j csn think of.

T c

[Hidden in reply to Nackapan]

Thanks nackapan. Yes I am going to wait the results. It just annoys me some dr.s are pro active and help with advice and another contradicts him.In fact In my last surgery one doctor said to me the other dr. Was a b....dy idiot. Yet the patient is piggy in the middle.

If only the human body wasn't so complicated

🙄😜

[Narwhal10]

Hi Sallyannl,

I am so sorry to hear. How very stressful and such conflicting advice which doesn’t help your partner or you. It is really difficult having someone you love be ill. Good to hear the receptionist are helpful. Levels of 200 are not that great, in my humble opinion.

So, my tendency is to log everything. It’s a bit tedious but we all know our battle in getting proper treatment. I’d recommend reporting the reaction to the Yellow Card Scheme (you can have a copy go to your GP as well).

yellowcard.mhra.gov.uk

The Medicines and Healthcare products Regulatory Agency are there for a reason and to be used. (I’m codeine sensitive- it’s a family thing).

Plus, a diary, a pen and noting things down. So, you know you spoke to Dr Jones-Smith-Make-it-up-as-You-Go-Along at 9.15 a.m. on 25 Dec 2012.

Stupid excuses like, ‘I’m so sorry can you bear with me a moment, I’m just paying the window cleaner’ whilst you grab that pen & piece of paper which can get transferred into diary. Ok doctor right, right, you suggest not taking any more vitamin B supplements until x, y and z. Thank you ever so much DrMake it up.

So, when you speak to another doctor and you don’t just say last time, or a few years ago but you give a time, date and name, they take you a bit more seriously.

Best wishes

[Hidden in reply to Narwhal10]

Hi narwhal10,How you doing ? I hope all your worries have been resolved or at least eased off for now !

I have a note pad writing everything down, tablet times what we eat etc. Just incase either of us gets a reaction to anything. I have had a good conversation with other half , so we can try and eliminate the anxiety he has been feeling since last weekend. He now tells me when the anxiety rears its ugly head, and we talk about it, and get him to take a deep breath to calm it down. I was the same years ago when low on b12, so Ican understand how scary it is. The trouble is it just comes on out of the blue which he cant understand.

Last weekend was frightening, so out is character for him. I swear if a doctor had come to see him he might have been taken away . Hes always so happy go lucky person ........but doctors dont know that !

anyway I have stopped him having the B12 tablets until after the blood test just in case..........hes been on them for four years and 269 is the highest..... so not that high...

(B12 1,000 strength) hes also said that if it is still low and treatment refused I can give him injection.

I count my blessings we have each other in good and the really bad times.

Time will tell..... lots of love and take care

[deniseinmilden in reply to Hidden]

You are so superb!

Go girl! xx

[deniseinmilden in reply to Hidden]

Anxiety is another classic symptom of folate deficiency!

[Hidden in reply to deniseinmilden]

Hi denise,

Thanks for reminding me, I dont think its folate, he had plenty of veg this week and even when his b12 was low he never had low folate.

Been up a few hours with him, hes now having to use bucket even though the bathroom is yards away. HE s always apologising say hes sorry.

My god if hadn't been for him years ago when I was seriously I'll with b12 I would be dead by now.

If it proves to be b12 then god help the NHS,

They dismiss you like we are idiots, yet they know nothing, and so ignorant of the damage caused.

God bless you for reminding me take care all

[deniseinmilden in reply to Hidden]

It's all so hard, isn't it!

Sending you love and strength! 😘

[Hidden in reply to deniseinmilden]

Thank you.

I had it with my mother although she was never diagnosed. But you cant tell me that six in the family have got b12 deficiency because of diet !

My gran,mum sister all crippled.

[deniseinmilden in reply to Hidden]

Absolutely! Similar vitamin and mineral deficiencies in my family, along with unusual heart arrhythmias. I'm desperate to get help with that and can't get anywhere with the local cardiologist.

[Hidden in reply to deniseinmilden]

Well denise if it took me three times just to get a blood test after being flatly refused god help us all.

My youngest brother had 6 x b12 June, not tested again till end Nov now had to have another 6 injections of b12. In between times had to take him to hospital for injections into spine for pain.

He is early sixties.

I always say prevention is better than cure, but with b12 when left to long there is no cure !

That is what the NHS and Doctors have got to understand. THERE IS NO CURE if left to long.

[Hidden in reply to deniseinmilden]

Good news, Doctor rang and apologised re blood test, he had only looked at the October Not the year. (Credit to him for apologising).

Anyway Dr. Said they want to see him again today,so I have manage to get him out of bed and son has taken him down, hopefully they will give him blood tests today instead of friday.

One good thing not water infection.

[deniseinmilden in reply to Hidden]

Thank you so much for your update!

It must have been quite reassuring when the Dr apologised and asked to see him.

Desperately difficult all round but hopefully you will get somewhere! 🤞 X

[Hidden in reply to deniseinmilden]

Just got back from dr. They took blood test so saves going down friday.

He went through records four years ago b12 was 119 told to take multivitamin !!!!!!!

I could cry

😢

Yes taking 1000mg got up to 269 .

Doctor will let us know latest when results are back.

[deniseinmilden in reply to Hidden]

At least he's said you can give him your jabs if necessary. xx

[Hidden in reply to deniseinmilden]

Yes and I will. Doctor promised to phone us with level of b12 and blood test results. If the levels do not go up into the 300 to 400 then I will demand he gets at least one injection, or I will tell them I will source my own and give it to him. It just might give them the kick they need.

(I already have some !) But I want the NHS to recognise his Dificiency for records sake, even though they have it on record from 4 years ago.

Thanks denise, everybody so kind

[Narwhal10]

Hi Sallyannl,

That’s great you write everything down, it’s quite laborious. I’m sure that week was quite a fright for you both. It’s good you have each other and your partner is willing to talk about things.

Now, you and your partner know each other best and what you are normally like, so these ‘anxiety attacks’ which come without warning, do you think there’s a possibility that it may be autonomic dysfunction ? It’s very subtle - years ago I had to stand with my hips pressed into a table to keep an upright position. Last year, prolific vertigo, the penny dropped - I didn’t though. Phew.

Thanks for asking. I’m getting there. Face pain ouchie but I did meet up with a friend who knows about vitamin B12 deficiency and said get it from the vets. 🤣😂

Lots of love back x

[Hidden in reply to Narwhal10]

At the moment its painful sciatica, so finding pain relief and a comfortable position a problem. At the moment hes in the sitting room in the recliner dozing, thankfully comfortable. I am pretty sure its b12 linked, extreme fatigue, but unable to sleep properly, dizziness unsteady on his feet etc etc. My anxiety stopped after a while and I'm sure his will eventually.

Glad you have a friend who understands all a bout b12, otherwise friends and family think we are just obsessed with the the subject. Vets and b12 ummmmmm yes can you imagine getting an injection from a vet.

Barking mad

😂

Stay strong tomorrows another day

[deniseinmilden]

So sorry for you - and him.

Just be thankful that the Dr you saw isn't his permanent one!

Try a different Dr to review the results - nowadays you are entitled to a second opinion so you can refuse to see hum id he is the one offered and you can legitimately say you don't trust him because he didn't even manage to read a date on a screen properly.

I know you are a kind soul and would rather give someone a chance but this is your husband's and your life at stake and remember Drs gets paid a high salary and has a duty of care.

They get paid whether they pull their weight or not so why should he be allowed to claim all that money for nothing when orher Drs and NHS staff work hard? It is only by flagging up his mistakes that he will be required to improve.

The NHS policy changed several years ago towards reducing vitamins and paracetamol on prescription, requiring patients to buy their own. This was to save the NHS £ks in wasted pills and save the patients who had to pay for their prescriptions the difference in price (OTC vitamins and paracetamol are generally cheaper than prescription charges). So he is wrong on this point to, and anyway has no business to be cross with anybody for trying to help themselves.

Protect the good people by making the receptionists at least aware that his practises are incorrect.

What antibiotics did your husband have?

It sounds to me like his folate has possibly dropped very low (the vertigo and blurred vision especially) and some antibiotics (most notably, but not limited to, trimethoprim) can "lock up" folate which can severely deplete it, especially if already low.

As I'm sure you know, folate deficiency stops B12 from working properly, as well as having similar deficiency symptoms on its own, so with low folate he might have a double whammy of problems. I think you said his tests have covered this but do double check.

Make sure they give you the actual results not just a brush off "all OK" comment over the phone.

Good luck and please let us know how you get on - it helps us and others to form a better understanding of things.

[Hidden in reply to deniseinmilden]

Well after another dreadful night ringing 111 with sky high blood pressure yesterday, got a message from 111 people this morning saying they cant get doctor to handle you case (over twelve hours to be told).Anyway phoned surgery this morning, a lady doctor phoned, I explained everything and even though his b12 has risen to just below 400 she agreed he could have b12 injection. (Her words were "IT CAN DO NO HARM")

Phone for appointment... not until 31st DEC. THe receptionist said wait I will go and see nurse and got him in at 9.40 tomorrow.

I really cant thank them enough, the receptionist have been absolutely brilliant, I have never ever had such help from other receptionists in my life.

God bless We were kicked out of our previous surgery for sub standard treatment and altering medical files.

[deniseinmilden in reply to Hidden]

So hard for you but maybe some light? 🤞😘

[Hidden in reply to deniseinmilden]

God bless you, we are all in this together !

Thankyou all, I would be around the bend without you

[Hidden in reply to deniseinmilden]

He had his first b12 injection this morning, and hes now dosing peacefully on the sofa!

I did warn him it could make him sleep or make him a little bit hyper.

🤞 it's the start of recovery.

[deniseinmilden in reply to Hidden]

Lovely!

Good for you! X

[Hidden in reply to Hidden]

Update from yesterday , if it will help others.He slept for around 20 hours on and off on the sofa where he is more comfortable.

Medication for pain a lot less than the previous few weeks, in fact he woke up and said he was in no pain.

Today he was awake 8 hours now snoring away again. He insists on sleeping on sofa, and I wondered if this is because he has support behind his back!

One thing I am interested to find out is drinking as in tea and coffee.

Completely went off coffee a week ago and now he only manages one or two cups of tea, and sticks to water.

I know when I was first treated all I could drink was water. Is this common with others.