I am new to this site and hopefully someone can give me some clues. I am B12 deficient . My level is 172 that’s all I know. I am being tested for PA. I have had 5 of the 6 loading injections.
last night after 2 hours sleep I woke to my body shaking quite strongly. It was in my shoulder and chest area and also in my legs, I could visibly see my legs shaking and my whole upper torso was trembling.
I take a complex B12 supplement and turmeric every day. I take a Vit D supplement.
I am low on iron. Don’t know my score snd am getting an infusion on Thirsday.
Anybody have any idea what might cause the trembling/shaking. Wasn’t really in my hands, more under my shoulder bone area.
Got the pins and needles in feet and now shooting pains in toes too.
Do you have neuro symptoms eg tingling, pins and needles, tremors, tinnitus, memory problems, balance problems plus other possible neuro symptoms?
If yes to neuro symptoms, recommended UK treatment for B12 deficiency with neurological symptoms is ....
A B12 jab every other day for as long as symptoms get better (could mean loading jabs for weeks even months) then a B12 jab every 2 months.
In UK, recommended treatment for B12 deficiency without neurological symptoms is ....
6 B12 jabs over 2 weeks followed by a B12 jab every 3 months
Which pattern of UK B12 treatment is GP planning to give you?
It's vital to get correct level of treatment otherwise there is a possibility further deterioration can occur including problems with spinal cord.
See BNF, NICE CKS, BSH Cobalamin and Folate Guidelines links for more info on UK B12 treatment. NICE CKS link suggests that GPs should seek advice from a haematologist for patients who have B12 deficiency with neuro symptoms.
If you have neuro symptoms, has GP written to/referred you to a haematologist?
Have you seen a neurologist if you have neuro symptoms?
Side Effects of B12 treatment
Some forum members report that their symptoms increase/worsen when treatment starts.
Some people can experience a drop in potassium levels when treatment starts. Has GP checked your potassium levels? See BNF link for more details.
Have your folate levels been checked? I'm assuming your iron levels are very low if you are getting an infusion (transfusion?).
I think when b12 treatment starts there are also demands on iron and folate levels in the body.
Have you been tested for Coeliac disease? H Pylori infection?
Coeliac Disease
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.
Hi Sleepybunny and thanks for such a generous response. My GP is very good and actually diagnose me from a strange list of symptoms and I have been impressed with her diligence and patience. She admitted to me, and she is 52, that they don’t get taught this stuff and medicsl school!!
I am in Scotland. I do have neuro symptoms yes and the initial plan is 6 loafing dhots then quarterly injections although she did say we could do 2 months. She I calling me the day after my last injection to check up on me so I will mention continuing the shots under the NHS guidance.
I have had s full spine MRi which is clear save for bulging discs at C5/6 and C6/7 casubing nevk Odin so gotvreferred to Rheumatologist who is running bloods and I see him tomorrow. See Neuri at end of June but will see if I can bring that forward. Had CT scan of abdomen and chest etc all clear. Had colonoscopy and gastroscope both clear, they tested for h pylori but I was on PPIs snd you can’t get a true test so need to read run that. My calprotectin was high at 464 so getting a pull cam endoscopy on 15th. At least I small getting seen for stuff.
I’m told that most of these things are down to B12 and that things will improve. I’m more tortured than that but as I say things are moving.
3) Perhaps GP would find a copy of BSH Cobalamin and Folate Guidelines useful. Some UK GPs may be unaware of this document. I gave my GPs a copy of Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and B12 Deficiency"
"have neuro symptoms yes and the initial plan is 6 loafing dhots then quarterly injections although she did say we could do 2 months"
Did she explain why she is putting you on standard B12 treatment pattern rather than neurological B12 treatment pattern?
I've read it's vital to get correct level of B12 treatment to lessen risk of further deterioration including SACD.
UK GPs will most likely have a copy of BNF on their desks. If they turn to BNF Chapter 9 Section 1.2 they should be able to find info on neurological treatment regime for B12 deficiency.
IFA test
If your IFA test result is negative or normal range, may be worth pointing out that BSH Cobalamin and Folate Guidelines mention Antibody Negative PA.
Has she contacted a haematologist? See NICE CKS link.
Be prepared for a situation in which haematologist/neurologist may not understand B12 deficiency as well as they could.
Proprioception
I hope neurologist checks your proprioception sense (awareness of body in space). Loss of proprioception can be associated with B12 deficiency. Two neuro tests for proprioception are
1) Walking heel to toe with eyes closed
2) Romberg test
Important that these tests are only carried out by a doctor in medical premises due to risk from loss of balance.
"I am in Scotland"
Are you aware of the petition about b12 deficiency before Scottish parliament?
I am unsure as to whether there are any active B12 deficiency support groups in Scotland. There was a support group based in Kilmarnock for Thyroid/B12 deficiency that posted meetings on Thyroid UK forum but I don't know if group is still active. PAS are always keen to hear from people who want to set up PAS support groups.
In UK, GPs sometimes only test TSH, which won't give a full picture of thyroid function. It's not uncommon for people on this forum to have thyroid problems as well as B12 deficiency so may be worth putting any thyroid results on Thyroid UK forum on HU.
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.
Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
Thanks Clive that is very helpful to know. I am taking a B12 complex vitamin supplement every day which includes the folic acid.
I have a telephone call with my GP tomorrow in which I’m going to ask her to continue the loading injections fas I still have neuro symptoms and I want to go back to work tomorrow.
I’m thinking of self injection if she refuses and it would be great if anyone can tell me if a reputable place to buy B12 and where I get the needless - any special type, size etc. Bit worried about buying off the internet but if others have done it safely then it feels like an option.
Thank you all for your really kind replies - it really does help!
If you want to go down the self injection road I suggest you open a new post dedicated to that as it is more likely to get a response as this is the end of a long thread.
"have a telephone call with my GP tomorrow in which I’m going to ask her to continue the loading injections fas I still have neuro symptoms"
My personal preference is to put queries about treatment etc in a brief, polite letter addressed to GP.
My understanding is that in UK, letters to GPs are filed with a patient's medical notes and are therefore a record of issues raised. I always keep copies of letters I write. In my personal opinion, I think letters to GPs are less likely to be ignored than something discussed in an appointment/phone call.
Some GPs may be irritated by a patient writing letters but I stopped worrying about that when I realised that if I didn't get treatment soon I was likely to deteriorate badly. See link in my first post above about writing letters to GP about Under Treatment of B12 deficiency with Neuro Symptoms.
There is a useful summary of B12 documents in third pinned post on this forum.
If GP refuses to give neuro treatment regime, may be worth
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So nervous and upset.
