Please some help treating low b12

[Tbob]

Hi I have had low b12 for over 15 years I was first given injections in my 20s then told I was cured I became ill and struggled to walk shortly after I was then diagnosed with chronic fatigue syndrome for the following 10 years by this time I was almost bedbound after searching the Internet with my systems I tried b12 sublingual methylcobalamin b12 at 5000 mcg this thankfully worked and I slowly got some life back but had been left with some nerve pains in my feet, jumping forward to present day for over the last 9months the b12 symptoms have come back aching calves burning feet burning tongue extreme fatigue blury vision I have doubled the b12 to 10,000 with only slight improvement my blood pressure has dropped and I feel light headed and faint most the day, can sublingual b12 stop working for a person? (I take the jarrow formulas brand) is there something wrong with the brand?I am highly sensitive to fillers and medication so having gone through a few brands years ago I have stuck with these but can they now not be working?

Should I consider injections?

Could anyone help me with information on self injecting brands that have the least likely unwanted side effects?

Also where would I start to look to obtained them?

Apologise for the many questions I hope someone can help me I feel so alone in this

[Nackapan]

Sounds like you need further blood tests .Include folate,iron ifab ,

Iron / ferritin.

FBC.

B12 injections may be needed.

The first one should be done in a medical setting .

Hydroxcobalamin is the type of b12 used in the U.k.

With your history and symptoms I hope loading doses are offered .

If the frequency offered after that is inadequate abd they have given good results then consider self Injection to top up NHS prescription.

Hope you get some answers

[wedgewood]

You need B12 injections . The most efficacious way to get B12 . You possibly have Pernicious Anaemia, Most people on this forum have P.A. and have to self inject B12 because their GP will not prescribe sufficient B12 injections . We have to get our B12 ampoules from excellent German online pharmacies .

First you must see your GP. and get a diagnosis. Warning — B12 deficiency/ Pernicious Anaemia is badly understood by the medical profession . It can be an uphill task to get a diagnosis . Come back here if you fail to get diagnosis and treatment . You will get help .

[Wwwdot]

Hi Tbob

Welcome as you are now in amongst a group who will be able to help you and you certainly sound like you need help and lots of hugs.

It is horrible how you have been treated but hopefully we can help you look forward to happier and healthier days.

I would go to your GP as suggested as that must be your starting point. Take a list of all your symptoms and ask for B12, folate, iron and vitamin D and potassium to be tested. Since you get some improvement with oral B12 that suggests you are on the right track but you need more B12 so you can recover more quickly.

Look of the B12D society and the pernicious anaemia society websites for symptom lists It’s quite probable you have other dumpy that you didn’t realise are B12 related

If your GP does not suggest every other day loading doses then come back to this forum and we can suggest next steps. As already said, be prepared to self inject and if your GP doesn’t give the help you need there are private options.

Take care and let us know how you get on. It will be lovely for us all when you begin to recover.

🤗🤗🤗🤗🤗

[Hockey_player]

The sublingual B12 stopped working for me and now I need injections.

[Hectorsmum2]

There is no cure, your injections should never have been stopped all those years ago.

[Tbob]

Thank you all so much for your replies, I have been back to the doctors many times they have sent me for nerve test for the pain in my feet but nothings ever come about from that, when they test my b12 it is always over range now as I take the b12 methycobalamin daily. my last test results was as follows-Test taken in March 23

Folate 10.9 (3.10-20.00ug/L)

Ferritin 187 (100-300.00ug/L)

B12 2000 (187-883.00ng/L)

Iron 25.3 (10.00-31.00umo/L)

Vitamin D 68 (51.00-220.00nmol/L)

Full blood count normal

As you can imagine my doctor sees the high level b12 and won't acknowledge I have a problem

I have tried over many years to get help from them to the point of gaving up, I have just tried my best to self treat and manage but it seems the sublingual approach is no long working, I feel myself heading back to them dark days where I was nearly bedbound trapped in my home unable to do much, its a scary place to be. I really appreciate all the information shared, where do I start looking for B12 ampoules from German?

[wedgewood]

Many P.A. patients cannot absorb b12 orally . I cannot . I know some doctors insist that they can ( they don’t want to employ nurses for the injections!) You can self -inject with no problem . Either by Intra-muscular method ( I.M.) or sub-cutaneous ( sub-cut )

You can get the B12 single dose ampoules from some German online Pharmacies . Controlled strictly by the German Health Authorities.

apohealth.de ( You can get the site in English bottom -left corner on my device , union flag . Free delivery .

versandapo.de You need Google Chrome for translation.

Panpharma B12 depot

are popular because they are the cheapest ‘ use ref.no. 16199653 This b12 is the type used by NHS called Hydroxocobalamin.

Also Pascoe B12 depot are popular . Both above are 1ml Panpharma has 1mg and Pascoe has 1.5

Hevert b-12 Depot is also a possibility This is a 2ml x 1mg ampoule .

These come in packs of 10 .

I have to go now . I can tell you about needles , syringes , swabs and sharps bins later . Obtainable from

medisave.u.k.

[Sulphonic6418]

Hey there my friend.

I would echo wedgewood's reply regarding suppliers of B12.

2 days ago I ordered 40 ampoules of Hevert Forte Injekt from versandapo.de.

No need for a prescription. No questions asked by the pharmacy.

They are 2ml ampoules containing 3000ug of B12. I paid using online banking with their IBAN number and they have dispatched today.

With postage, 40 cost £49.77.

However, they do sell them by the 100 at about 100 euros. Literally around a quid a piece.

Because i was a point or 2 above the threshold when the gp tested me ive never been prescribed it. But prescription charge is £10 now. As far as I know you get 1 ampoule of 1ml/1000ug every 6 weeks.

So the Germans are 90 % cheaper for a dose 3x the strength!!!!!

There are some places selling it in the uk now but it is really expensive, around £250 for 6 doses. Germany is way cheaper.

It was pretty easy to order I just needed to use google chrome to translate the website and paste the emails into google translate in case i missed anything.

Take care

[Tbob]

Thank you wedgewood and sulphonic6418 for the information I have a lot to learn about, I really appreciate your time. what starting dose would I need and how often? I know everyone is different but a ball park would be helpful, if I was taking 10,000 b12 sublingualy daily does this mean I will need to inject the same amount daily? And yes please sulphonic6418 I dont have a clue what needles ect I will need.

Thank you also wedgewood for the pricing I have been spending around £35 a month on tablets that are not working so that pricing seems reasonable to me.

All the help is so greatly appreciated!

[jade_s in reply to Tbob]

Hi Tbob, typical starting dose is 1000 mcg (1 mg) hydroxo every other day (EOD). If you have neuro symptoms (burning, tingling, balance, vision issues etc), then EOD 'until no further improvement' but some of us are improving years later. You will have to find the frequency that's best for you - anywhere from twice daily to weekly to monthly. Go by symptoms. But likely will not need 10,000 mcg - injections are absorbed much more effectively & bypass the faulty absorption mechanism those with PA have.

I will send you a Chat message with more info on ordering.

My 2 relatives and I managed on tablets for a while but in the end all of us ended up on injections. At the end I too was taking 10,000 mcg sublingual b12 & it was doing nothing at all.

[Tbob in reply to jade_s]

Hi Jade_s thank you so much that's really helpful,

[Cherylclaire Forum Support]

You have tried with sublinguals - but these do not help everyone. You have some symptoms that are neurological and nerve damage can become permanent. I think you have sufficient proof that you need your injections reinstated and are far from "cured". Unless this was solely a dietary deficiency, which could be addressed successfully by daily supplements or food supplemented with B12.

Please do not feel alone in this. All of your symptoms sound like B12 deficiency and are familiar to many of us here. You just need more help than you have been getting so far.

Go back to your GP surgery and tell them your history, just as you have told us. If you are tested, get folate, ferritin, vitamin D and thyroid checked. Your serum B12 level should not be tested (pointless) but probably will be. The only "pernicious anaemia test" available will only pick up about 50% of those who are known to have pernicious anaemia (PA) - that is the intrinsic factor antibody test (IFab). Since most GPs are not aware of this, a negative result may be used to rule out PA erroneously. Neither is a search for macrocytosis (with similar percentage) useful, unless it is acknowledged that a lack of enlarged red blood cells does not rule out PA.

Have a look at the guidelines for testing and treating:

NICE (National Institute for health and Care Excellence): cks.nice.org.uk/anaemia-b12-and-folate-deficiency. These are currently under review and a NICE guideline draft (July 2023) has been much discussed here and elsewhere.

BNF (British National Formulary): known as the doctor's Bible, as a copy of this was usually to be found sitting on the GP's desk.

BCSH (British Committee for Standards in Haematology): onlinelibrary.wiley.com

Those with B12 deficiency with neurological symptoms should initially be treated with intramuscular injections of hydroxocobalamin every other day (EOD) until there is no further improvement, then a maintenance treatment regime of one injection every 2 months is advised.

Since you have neurolgical symptoms, this should be a starting point for return to treatment for you.

It may take some time for longstanding nerve damage to repair. Do not allow the GP to move you from EOD injections unless you are certain that no more improvements can be had - remember that the injection every two months is intended only to maintain your gains !

If this does not do it's one task - go back. One injection every two months will only maintain gains for some of us. For others, a GP is able to be led by observations and discussion - so keeping a daily symptoms chart/diary will help them and you to see an emerging pattern, hopefully, to work out what frequency is effective for you as an individual. Also useful if you can have a real appointment and some continuity, so that your GP gets to recognise you when symptomatic and you when doing well. Sounds awful to say that visible symptoms help here - once I started getting better, nurses told me that I'd looked very grey at the start.

For others, the only way to keep their B12 deficiency symptoms at bay is to self inject.

After seven years of frequent B12 injections, many of my symptoms are gone/rare/much less severe.

I have been left with a constant burning tongue, which I have just been told by a consultant is nerve damage. I decided to let them say "...due to B12 deficiency" - but of course they never did. Do not let them off with diagnosing this as a "syndrome" -that just means a group of symptoms and is not in itself a diagnosis. If you get sent to enough specialists, you could end up with a syndrome of syndromes: irritable bowel syndrome, burning tongue syndrome, etc etc - and no prize at the end for collecting the set !

There may be other GPs even within the same practice who treat B12 deficiency more seriously, and who will help you. My GP gave me two injections a week for six months.

[Tbob in reply to Cherylclaire]

Hi Cherylclaire thank you for your message I will again try to speak with a new doctor and explain I had given up on them in all honesty, the last time I asked a doctor about it they wanted me to stop taking the b12 supplements for a few months and come back to be tested, I couldn't bring myself to stop, I wasnt prepared to make myself very ill again.I will try to get some seconds options if the outcome is the same, thanks again

[Cherylclaire Forum Support in reply to Tbob]

Do not be tempted to deteriorate in order to demonstrate to a new GP that you are not lying/exaggerating symptoms. No-one wants to go back there again and no GP should ask that of you. If they do, they are not for you.

Having said that, I once stopped treatment of my sore splitting and bleeding mouth (angular cheilitis) just to show a different consultant that the treatment was containment not a cure - and the appointment got cancelled three times !!! I posted a photo on here a while back. Yes, I felt a little foolish..... ah, well. Easily reversible at least.

Seriously, though, B12 deficiency is not something to mess with, however desperate you feel. Symptoms, especially neurological ones, can end up being very difficult to recover from. Some nerve damage, especially if long-term, doesn't return as before.

I wish you well.

[Tbob in reply to Cherylclaire]

I definitely don't want to deteriorate to demonstrate I will try my best to get my point across to a new doctor but I am not hopeful finding a right doctor seems near impossible.I hope to start self injections very soon as I'm fearful of the nerve damage taking place now my feet are burning as I speak

Wishing the best for your angular cheilitis I hope you got the help you needed from the consultant

[Cherylclaire Forum Support in reply to Tbob]

Don't waste time trying to find a B12 expert. Look for someone who will look at you, listen to you and believe you.

Initially, I had to keep insisting that I was not depressed and not in need of antidepressants. Three times I think. I stayed with my choice of GP because I knew she cared enough to get it right and get me the help I did need.

Glad I did.

Wishing you similar luck.