VIT B12

[daisylazy]

Just found my Vit B 12 is low and need injections. Been complaining for months about exhaustion and fobbed off about fatigue and PMR. Anyone else this happened to and did the treatment help?

[piglette]

If you have injections and your B12 is low the injections should definitely improve things.

[Ebiker]

I am tapering very slowly from 6.5mg pred to 6mg and have had awful fatigue. It started when tapering from 7 to 6.5mg. I can only comment on my experienceIt has been difficult to sort out whether the current fatigue is due to tapering or low B12 as that was picked up in July.

The first 6 injections of B12 over 2 weeks made a lot of difference but it did not last so I was given a second lot of 5 over 5 days as fatigue returned. It seems now that the fatigue at that point was probably due to pred drop as other problems worsened...ie hot flushes, zombied head.

Have just has a single top up injection after 12 weeks or so and it has made a lot of difference again. So there you go.

The B12 certainly helped me but I would say that I need the injections more often. I am seeing the doctor in early Dec to look at all this.

If necessary I have a B12 supplement I bought and if the NHS prescribed top up only happens every 12 weeks I will purchase injections.

Remember taking B12 if you don't need it is not harmful as your system flushes out what your body doesn't need.

Hope this helps.

[PMRpro Ambassador in reply to Ebiker]

If your problem is not absorbing the B12 - possibly due to pernicious anaemia or use of PPIs - then sublingual B12 apparently works as well as injections for most people.

[Ebiker in reply to PMRpro]

Thanks PMRpro. I have spoken to nurse practioner about B12 as she sees me regularly for INR test. She has asked for a test to check absorption...can't remember what she called it but it was something like 'intrinsic'???You have mentioned sublingual B12 before.

Can one buy them in chemist or online?

[PMRpro Ambassador in reply to Ebiker]

Intrinsic factor - that relates to pernicious anaemia.

I just googled "sublingual b12 uk" and loads of links appeared - and of course the BigA has an offering

[Ebiker in reply to PMRpro]

Thanks for useful info. I am on PPI and doc upped it in Jan after awful problems suddenly. I said at the time that it was after taking the apixaban ( we had a conversation about this in a previous post you might recall as I had a pulmonary embolism) but doc didn't think so. Eventually he changed me to warfarin and reflux has almost gone. All of this has possibly affected B12.For fans of this forum out there can I add that it was this team who gave me a red alert message re pe.

Ever grateful. 🤗

[PMRpro Ambassador in reply to Ebiker]

The lack of acid probably interferes with B12 absorption, the results of studies are mixed but short term use definitely has some effect.

In my book, anything that starts soon after a change in medication must be considered as linked until proven otherwise. Especially in patients on a cocktail of drugs.

[Ebiker in reply to PMRpro]

Agree. Given the time it took and the awful problems I had for so long I must say it didn't please me, particularly as the doc at the time tested for cortisol when I mentioned adrenal insufficiency not understanding that it was the pred giving me the cortisol. Hence my visit to a private endocrinologistI cannot knock our Health Centre however. I have had so much attention with face to face, telephone consultations referrals, tests galore etc. They cannot possibly get everything right.

[SnazzyD]

I used to give it to people regularly. Sometimes at the start it took a few weeks to feel better.

[seamaid]

I was diagnosed with Pernicious Anemia twelve months before Covid and had B12 injections every three months , before too long I felt I needed them more often but Covid struck before I could discuss it with my Dr , Obviously I could not then go into the surgery to have the injections so was changed to a tablet which I take every day, I was not happy at first but soon realised I was so much better, feeling I was being gently topped up each day, and have requested I now stay on the tablets , and do feel so much better malthough age and my PMR ( which was diagnosed last year 2021 )has slowed me up LOL . All best wishes

[PMRpro Ambassador in reply to seamaid]

Are they sublingual tablets (dissolve under the tongue)? Ordinary tablets don't usually work in PA.

[seamaid in reply to PMRpro]

no they are the ordinary tabs but do do the job - Cyanocobalamin 1mg tabs per day -blood tests taken regularly Definitely have PA amongst various other conditions 🙄 PMA, Heart, Kidneys and Thyroid . just keep smiling !

[Blearyeyed]

The doctor should get the Intrinsic Factor tested for you to see if you have Pernicious Anaemia. Only 50% of patients with PA test positive for this , so having a negative result does not mean you don't have PA.Steroids treatment , infections , other medications like PPIs , various antiepiletic and antidepressive meds and dealing with the constant healing with a Chronic illness can cause the low B12 , or B12 deficiency.

If your B12 is low but not deficient , your GP may need to be convinced to put you on the loading doses of injections and ask you to try high dose supplements and diet changes first , unless you also have neurological symptoms.

If your diet is already good, and you have already been taking a combined vitamin or B complex supplement you need to tell them to show that , that did not work for you and is not enough. Tell them politely, but firmly , how much the symptoms are affecting you , especially if you have neuro symptoms like loss of balance , dizziness , breathing issues, palpitations and blood pressure problems. loss of concentration and thinking skills , loss of motor skills , so you are dropping things and losing coordination as this proves the need to more immediate injection treatment.

Don't assume the GP will know that you have other health issues or are already being treated for these problems , they don't remember and need to check it on your records first .

Ask to be put on the loading dose , and the three monthly injection after that.

If you have Neuro symptoms you can be put on two monthly injections as ruled by NICE guidelines , but be prepared , it can be a battle to get the surgery to do that and especially any further increase.

You do not need , and it is not recommended by NICE to have B12 blood tests after injections begin unless they are stopped , and then the test is better after a year. A B12 test on injections will give misleading results. It will begin high , which is why GPs that do it then say you don't need injections anymore and stop it. Unfortunately then over time the levels decline until you are low or deficient again with symptoms growing as it gets worse. When on the injection it is better to stay on the protocol and have iron and Folates checked regularly.

You also need to take a B12 supplement each day to maintain your levels between injections . It needs taking with lots of water with some food that contains no Vitamin C as this can reduce how much B12 you absorb.

You cannot overdose on B 12 it does not cause toxicity issues no matter what many ill informed doctors think it's something the PA Society get most frustrated about.

Other vitamins , including the other B vitamins and iron, are better taken after the fattiest meal of the day with Vitamin C in food or a drink to improve their absorption.

Just make sure you do this at the right time away from other medications or supplements that may not be allowed to take at the same time as anything in your supplements.

If they haven't already done it get them to do your full blood count , as low B12 can affect the shape of your blood and your platelets, your full iron Ferritin panel , as low B 12 causes Anaemia you may require iron supplements at the same time, and , importantly, your Folate panel as Folate deficiency is common alongside B12 issues and causes the same symptoms , especially Fatigue. If Folates are low you need high dose supplements to resolve it. Drinking more water each day is vital if you aren't quite getting the recommended amount. You need water to help metabolise B vitamins and absorb all nutrients better. Internal dehydration is common with low B 12 and it increases Pain and Fatigue .

You do feel better and get an energy boost quite quickly with B12 injections. You can , however, have growing symptoms before your injections if you aren't getting them at the right intervals and sometimes have a day of Fatigue and sleeping after it. Also , be prepared , if you have low blood pressure or take medication to improve high blood pressure the return to normal B 12 levels can help to lower blood pressure more. You may find you need to reduce blood pressure dose if the B12 has started to improve that , with low blood pressure , don't take B12 in the evening. Hope it helps to improve things for you soon, Bee

[SusanEleven in reply to Blearyeyed]

Thank you for this. I have all of these symptoms and a B12 test has finally been added to my blood lab appointment in a few weeks.

>

[Viveka in reply to Blearyeyed]

Wow, very informative, thanks.

[Viveka]

I was put on three-month injections after low B12 bloods. Main symptoms tingly hands and feet and tiredness. I was told by a nurse I would have to be on them for life despite having no investigations for IF. I thought it was something to do with veggie diet so stopped the injections and took 1000mcg ordinary B12 tablets (doctor prescribes them) and had bloods checked every six months or so for a while. Levels have been consistently fine since then. Only take a tablet every few days. Just something to think about for the future.