Blood results normal so why do I feel so bad?

[Cauliflowercheese]

Have just joined forum so hoping to learn from others. I have been having 3 monthly injections until lockdown. Now GP practice has decided no more injections and you buy your own tablets. I'm not finding these very effective - fatigue, tingling fingers and toes , restless legs etc. Had blood test and was told B12 levels are fine. Am thinking about paying for an injection to see if it makes a difference. What is the optimum level in a blood test? Are my symptoms related to something else? Any advice gratefully received.

[Nackapan]

No optimal level. Apart from being in range .as far as I know

Yest8nf doesnt mean anything once on injections.

Get your b12 injections reinstated.

Write to Go staing symptoms are returning.

You are doing well that 3 monthly enough. So why oh why are they stopping them??

Just say you cannot aborb tablets a d need I jections.

[Cauliflowercheese in reply to Nackapan]

Thanks for advice. I used to get really tired towards the end of the third month. Asked Gp if I could have injections more often. They tested by blood and said no my levels were fine! But now not allowed injections at all - was sent a blanket letterrom GP surgery). I’m considering having an injection privately (£20) to prove to myself that that is what I need.

[Nackapan in reply to Cauliflowercheese]

Tests are not necessary.

You are being treated to keep your b12 levels up!!

Like saying to a diabetic oh your blood sugar is fine you dont need insulin anymore. Ridiculous.

Get your injections reinstated.

Get one if you wish but the Gp shouldn't have stopped them

[Dewy9698]

Hi

If you have pernicious anaemia it means you lack intrinsic factor and cannot absorb B12 from any tablets or food, so you absolutely need to have your injections!

Complain to your GP! And right away.

Myself and my son were lucky, they've continued with our injections throughout lockdown, so not all surgeries are the same.

Take care

😊🌻

[Cauliflowercheese in reply to Dewy9698]

Thanks Dewy. I’m going to get back to GP in view of your advice. Best wishes

[Dewy9698 in reply to Cauliflowercheese]

Fingers crossed 🤞it goes well. Let us know.

😊🌻

[fbirder]

You need your injections reinstated. Indeed, you need them more often that every three months.

Phone your GP, explain that you have neurological symptoms and that you are afraid you may suffer permanent nerve damage. Say that you want your injections reinstated and that you want them every two months, as described in the British National Formulary (BNF). You also want a referral to a neurologist. It would be best if you could get that out before the doc can say anything.

"Hello this is Dr Nonowt."

"Hello doctor, I have tingling in my fingers and toes which I believe is caused by my B12 deficiency and I'm afraid I may suffer permanent nerve damage if I do not receive my injections every two months as recommended in the BNF. I also want to see a neurologist"

Try to say those two sentences in one breath. Respond to any mention of blood levels with

"But I have tingling in my fingers and toes and need my injections as recommended in the BNF."

If that fails then write to the doc. Use the above explanation and add that the British Society for Haematology covid- 19 recommendations say that people with your symptoms should be treated with injections.

Include a copy of the BSH guidelines and the BNF. Send copies of the letter to the practise manager, your local MP and local press, radio and TV. Make sure those people are listed on the letterhead so that the doc knows that there may be outside interest.

It's really annoying that sick people need to fight so hard for such simple, but life-changing, treatment.

BSH Guidelines - b-s-h.org.uk/media/18259/bs...

BNF recommendations - bnf.nice.org.uk/drug/hydrox...

[Cauliflowercheese]

Thanks very much for this - and especially the links to the relevant guidance which I’ve printed off. Don’t want to antagonise my GP but I won’t be fobbed off either! This gives me the ammunition I need. Best wishes

[Deejanator]

My doctor will only give me B12 injections 1every 3 months I’ve tried asking them for them every 10 wks but no they won’t have it, I’m suffering with a mushy memory , fidgeting legs and anxiety. I’m going to pay for a injection in between my Gp appointments. It’s going to cost me £25 but I’m not bothered .and I’m also thinking maybe buying some and doing a weeks booster just to test if it is my B12 making me feel this way . Who is a safe supplier to buy from plz including needles etc . Thanking you in advance 😊

[Maxie902]

Please do get back to your GP. I was in the same situation as you. I went back to the doc as really noticeable symptoms. By that time guidance had changed, and I got my injection. But the delay of 4/5 weeks has really knocked my system, and I am still getting some symptoms despite my injection. Have gone back to doc who admitted she did not know much about B12 and would speak to a haematologist. I have to speak to doc next week, so will see what comes of that. Like you, I also think I need my injections more frequently. It is a bit of a battle, but joining this forum has given me the knowledge to feel more confident in challenging a doctor. Good luck!

[Gillyhe]

Oh i feel your pain , i have had countless discussions with gps about my injections .im now 10 weekly and have been for 4 years . Recently my gp stopped my b12 injection and i had to wait until i was well into my 11th week before it was agreed i could have it .

My levels are extremely high . ! But when dr was telling me that , i came back with ," the levels in blood are only a part of the picture " I have read and studied a lot recently on symptoms and blood levels . Really its actually irrelevant and im not sure why drs insist on using that as a guideline for people on injections . Our symptoms are the key here . I have also bought some from germany as a back up .

Please dont be imitimidated by your gp . They are human and not gods . Put your point in writing , keep a copy of your letter . Good luck 👍

[Boodlecat]

I pressured my GP until I finally got mine again. However he is still threatening to stop them in the future. He wants me to go on privately purchased B12 1000 after four weeks. The theory being that even if you don't have intrinsic factor the gut still absorbs 10% so I should then still get enough. I usually have my injection every 8 weeks as I get symptomatic after 7 weeks. He has in the meantime done a B12 test and hello, of course my B12 in the blood stream is above normal. He has now done a test for intrinsic factor, but the results are not back yet. If that does not give me the result I need, I will then insist on a liver function test. I know it is not easy when feeling so low, however do keep pushing. There is something wrong with you and they need to get it sorted. Good luck

[Cherylclaire Forum Support in reply to Boodlecat]

Without intrinsic factor, absorption of oral B12 by passive diffusion might give you 1% of the amount, not 10%.

Is "might" good enough for your GP ?

More to the point: is it good enough for you ?

I don't believe that there is sufficient evidence to replace B12 injections with tablets in those with B12 absorption problems (whether diagnosed PA, as-yet-undiagnosed PA or any other problem) and I'm appalled that this seems to be happening lately as a new practice policy- without close long-term monitoring of patients.

Without discussion ?

Before altering a treatment that has been working in preventing a patient from deterioration, sometimes for many years, wouldn't a GP want to at the very least check that the patient was in agreement ?

So why aren't they doing that ?

If I were to agree to be part of such an experiment - which is what I believe this to be- I would firstly want to have a GP that I can trust, one who also trusts me.

Without mutual trust, how can you be sure that your GP will reinstate injections immediately should your symptoms return, and how can you be sure that your GP actually believes that your symptoms are all related to B12 deficiency in the first place ?

The lack of transparency worries me.

[Boodlecat in reply to Cherylclaire]

Oh, yes, maths were never my strong point. I have had a very good relationship with this particular GP over many years and apart from the injections being stopped it has also been a shock that he has become quite dogmatic about this. I believe that there are instructions from higher up the chain, that is, I believe he and all GPs have been instructed to try and get as many people off the injections as possible by the NHS. I have no idea why this might be, but it does seem to be UK wide. It is difficult to argue with the GPs when you feel so low. However, as I am feeling OK now as I had an injection three weeks ago, I feel strong enough to continue the fight.

[Cherylclaire Forum Support in reply to Boodlecat]

"First do no harm": it will become evident that, in attempting to please the powers-that-be on this issue, GPs will be pushed into having to ignore returning symptoms. This won't sit well with them.

What we really need before change in treatment is research.

[Mollieharry]

I’ve got the same symptoms as you cauliflowercheese.the doctor had withdrew my injections too because of covid,even though I had told them previously that every 3 months just wasn’t cutting it.i started taking high doses of sublinguals but defo not helping.too tired to argue with doctors and very afraid to go back to how I felt a year ago,so I have now decided with the advice I’ve read from this site to buy and self administer injections myself.