Vitamin B12 Injections

[bubbatetley]

Hi, I hope you're all hanging on in there and having a better day than me,,,

I have just started a loading dose of 6 Vit B12 injection because I've been suffering badly for a year now with Pins and Needles all over my body daily especially my head. I have had 5 injections now and I'm still the same . I am also being tested for Multiple Sclerosis and having a brain and spine scan tomorrow.

Thank you for all the help and advice I have received on this Forum, I would be lost without all you guys!!

Take care

Keep smiling

Jayne🌝

[jade_s]

Hi bubbatetley, Jayne,

Beat wishes for the scan!

From what I've read, very few people notice anything from loading doses. Some people get worse / symptoms regress.

Are folate levels ok? B12 needs good folate levels to do its job.

With continued neuro symptoms, which include tingling, guidelines call for every other day injections until symptoms resolve or 'stop improving'.

Let us know how it goes. Take care and keep smiling as well 😄

[bubbatetley in reply to jade_s]

Hi Jade, Thank you so much for the reply.. My folate levels are 16.2ug/L [ 4.12 ] my GP has started me on Ferrous Sulphate 200mg, are these ok to take, I also take Vit D3 3,000 units daily? I have now had 5 B12 injections and no improvement, I've been having the injections every other day?

The pins and needles are awful, especially in the head. Do you ever have this?

Again, Thank you

Take care 🌺🌺

[Jillymo]

If you have only just had your loading dose your not going to see a lot of improvement. Many feel worse before better and it is early days for you as yet.

What regime has your Dr prescribed after your loading dose ? 3 monthly or every other day injections ? If your experiencing neurological symptoms ask your Gp to refer to the guidelines. Not many do but you need more frequent injections, I now self inject daily. I was also screened for MS so dont be too concerned many of us have suffered similar symptom's.

Good luck with regard your scanning. 🤞

[bubbatetley in reply to Jillymo]

Hi Jillymo, Thank you for replying, I really appreciate it, I would be lost without all of you guys on this Forum.. I am having 1 injection every other day for 2 weeks, so far I've had 5 injections and no improvement. My GP has said after the 6th one I will have a blood test to see what difference the injections have made. She has also given me Ferrous Sulfate 200mg to take 1 daily. Did you have pins and needles in the head, it's awful?

Keep ya posted

Cheeers 🌺🌺

[Jillymo in reply to bubbatetley]

Hello,

That is the standard loading dose your being given, how often are they intending to give them to you after your loading dose ? Healing is a slow process, I am still healing after 2 years, so be patient.

I am not familiar with Ferrous Sulfate but it is an chemical iron compound, I take an iron supplement along with Folic Acid prescribed by my Gp.

My head was numb to the touch with strange sensations that ran down my face. My legs and feet were agony, burning, pins and needles along with numbness. My eyesight was affected along with my balance. There are so many horrid symptoms so we know what your going through.

At least your Dr has acted so stay positive and see what she suggests after the loading dose. Point out that you have neurological symptoms especially if 3 monthly injections are offered. 😘

[bubbatetley in reply to Jillymo]

Thank you Jillymo.🌺

[bubbatetley in reply to Jillymo]

I have my last loading dose on Friday, so will make an appointment to go back to see GP next week. I will take along the NICE Guidelines info with me.

Take care Jilly 😘

[Jillymo in reply to bubbatetley]

Like myself I see you have an underactive thyroid and diverticulitis !

Snap. 💐

[Sleepybunny in reply to bubbatetley]

Apologies if I've posted these before on your threads.

Link to NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

If you have neuro symptoms, I'd expect you to be put on the treatment pattern "For people with neurological involvement" outlined in link below.

cks.nice.org.uk/topics/anae...

If you have the time and energy try to find the local B12 deficiency guidelines for your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.

Letters to GPs about b12 deficiency

b12deficiency.info/writing-...

This next thread on Patient Safety has links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

[am111]

It takes time for the body to heal, even after B12 has been corrected. For me, it takes one week to feel any difference at all, especially neurological issues. Even fatigue resolution takes a week or so. Hence, continue on the injections. After the loading doses, you may need more regular injections than once every 3 months etc. Ask for at least once a month or once every two weeks. Even then, it may take one or two months before things become better, and even more time for full resolution, especially since you have had neurological symptoms for a while.

[bubbatetley in reply to am111]

Hi am, Thank You For the reply, I really appreciate it, I would be lost without all you guys. The Gp's dont seem to know much about Vitamins/Minerals, I really had to nag them into giving me the B12 injections, all they wanted to give me was antidepressants, which I HATE! I have been told by the nurse who gives me the injections that, after the 6th one I will have a blood test to see what my ranges are. Did you ever have pins and needles ? especially in the head?

I am going for a brain and spine scan today, which I'm dreading!

Keep ya posted

Cheers and take care

Jayne [ Bubba] 🌺

[Sneedle in reply to bubbatetley]

Hi there The NICE guidelines state no point in checking b12 levels once on injections as they will always read very high.

Sorry bad brain fog can't find it for you. But wanted to say.

[bubbatetley in reply to Sneedle]

Thank you Sneedle, I have my last loading injection on Friday. I am ringing my Gp tomorrow to find out what happens next.

Take care 🌺

[Sneedle in reply to bubbatetley]

Good luck and let us know what happens 👍🌸

[bubbatetley in reply to Sneedle]

Hi Sneedle I hope all well with you.

I went back to my GP after my 6th loading dose . She said my blood test came back raised to 2,000 and I DON'T need any more B12, regardless of all my neurological problems I am having and am now under a Neurologist for a Tumour on my spine and Arthritis all in my spine.

PLEASE CAN YOU ADVISE ME on what I Should do please.

Thank you and take care

Bubba 😘😘

[Sneedle in reply to bubbatetley]

Hello bubbatetley,I'm going to ask Sleepybunny as an admin to respond to you as she has the experience to help you from here.

One thought is that you may need to see a different gp.

A second is that many people decide to self-inject b12 if they feel they have got as far as they can with the doctors.

For example I'm writing a letter right now to my daughter's gp to ask for continuation of b12 every other day following her loading doses. If the gp won't do this, I am going to ask a different one.

If we get nowhere we are going to look at self-injecting and ask the gp to show my daughter how.

Have you put down how you're feeling/symptoms and referred to Nice guidelines in a letter to the gp? And taken someone with you as a support?

It's so hard to stay with it in the appointment, I've got lost in appointments before now because we assume the gp knows best. And in this case you are having to deal with a very ignorant one.

I'm sorry I can't help more 😔

X

[Sleepybunny in reply to Sneedle]

Hi,

Just to let you know that I'm not an Admin just someone who posts regularly.

Link to list of Admins for this forum.

healthunlocked.com/pasoc/me...

How to write letters to GP about B12 deficiency

b12deficiency.info/writing-...

Link to thread about Patient Safety, has links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[am111 in reply to bubbatetley]

I was also told anxiety in the beginning, but kept on getting worse until I took B12. The blood test is totally useless once you are on ANY kind of supplement, including even mild orals. I was on 750mcg orals and the test always came out high. I was advised to stop and then the symptoms came back right on. Yes, pins and needles can occur anywhere. I have had on tummy, head. Also, brain and spine scan will come out OK. Of course, the spine MRI can show degeneration, which is typical of B12 deficiency and typically goes away with supplementation. Anyway, the solution is clearly to have regular B12 supplementation. If they won't give injections, take tablets. 1000-2000mcg cyanocobalamin/day has been shown to be good in many tests, but takes time to work. The main thing is to be consistent, i.e. take the same dose everyday/same frequency of injections and don't change it. Generally, after loading doses, once every two weeks or once a month should be sufficient. In the gap time, you can take tablets if needed. Most importantly, keep patience, as it takes time for the body to heal.

[bubbatetley in reply to am111]

Hi am111, Thank you for the reply,, I've had 7 loading doses now and feel worse than before, Pins and needle everywhere especially in the head.. I am going for a B12 blood test tomorrow as my GP said too much B 12 in the body can be toxic!

If my bloods come back low, then she will give me more B12,,,

I am totally confused!!!

Take care

Bubba 🤪

[am111 in reply to bubbatetley]

Your blood test will not come out low. Also, your GP is misinformed. Too much B12 is NOT toxic, but can become habit-forming. Anyway, after the loading doses, you should continue maintenance doses, either as orals every day for the rest of life or every week/every other week for a month or so and then monthly/bi-monthly for hydroxocobalamin. Some people seem to have an increase of symptoms initially as the the pins and needles can mean the nerves are healing. If it lasts too long, then something is wrong and another reason should be explored.

[bubbatetley in reply to am111]

Hi am, Thank you for replying, much appreciated. My GP is saying they have to follow the NHS guidelines, plus I don't think they are very knowledgeable in Vits and Minerals. Pretty much useless in every aspect really!!

Do I need to take a Ferritin supplement as that is also low? could you recommend one please. I told her about NICE guidelines and again she said she needs to read up about what they recommend. [lotta CRAP]

Thank You for all the advice

Take care

Bubba🐵🐵

[am111 in reply to bubbatetley]

yes, iron tablets need to be taken if ferritin is low. I take ferric pyrophosphate, as it leads to less constipation for me than other iron salts. Also check your thyroid levels, as both iron and B12 being low could mean hypothyroidism. Also, they should ideally do an endoscopy as well and other tests to determine the exact cause of these deficiencies (PA, gastric atrophy etc.).

[am111 in reply to bubbatetley]

please see this paper: serum levels WILL be quite high for quite some time after a single injection, more so with hydroxocobalamin than cyanocobalamin, so useless to test.

ashpublications.org/blood/a...

[Sleepybunny in reply to bubbatetley]

"I have been told by the nurse who gives me the injections that, after the 6th one I will have a blood test to see what my ranges are"

Have a look at these two articles about Testing B12 during Treatment

PAS article below has some useful quotes from UK health documents.

pernicious-anaemia-society....

Article from Dutch B12 website

stichtingb12tekort.nl/engli...

[bubbatetley in reply to Sleepybunny]

Thank you Sleepbunny, going for my 6th injection later today, then to see the doctor,

I'm gonna ask if I can still have the B12 every other day. 🤞

[HeartyGilly]

according to NICE guidelines loading doses should continue until there is no further improvement so demand they continue until your symptoms ease

[Wwwdot]

Hi Bubbateley

Great you are now getting B12.

You MUST encourage your GP to continue B12 injections every other day as per the NICE guidelines.

Unfortunately when your B12 is very low to start it needs regular B12 and lots of it to kick start healing and therefore it takes time to see improvements.

Absolutely waste of time testing B12 as it will be high but check folate because unless you are supplementing it should go down because the B12 will use it to heal you.

If you can’t get your GP to continue every other day B12 you may want to consider self injection. I am needle phobic and a wimp but I manage to inject every day.

Best of luck

🤗🤗🤗🤗🤗

[bubbatetley]

Thank you Wwwdot, hope you're having a good day. I am going for my 6th B12 injection today, then after going to see my Gp. I'm going to ask if I can have more B12 as I am still having the Neurological symptoms and dont feel any better..

Have a good weekend and take care, keep ya posted!🌺🌺

[Technoid in reply to bubbatetley]

I want to emphasise that if you had neurological symptoms for more than 6 months to a year, it is very unlikely that the symptoms will disappear completely after loading doses. It may take weeks, months and even years for some symptoms to resolve. Its important not to have false expectations - this is a long term healing process.

It is possible that symptoms that were present for several years may never fully resolve, depending on the extent of nerve damage. Important to be positive and look forward to improvements but its not going to be an overnight fix. B12 is important but you need all the other supporting nutrients to make it work, so diet and nutrition is just as important as receiving the B12, to a successful recovery.

I mention diet in particular because looking through your posts over the years there are some very concerning messages such as eating only crackers or in this post some 9 months back:

"I do not have an appetite and only eat cereal and yogurts , some days I don't eat anything. "

from healthunlocked.com/pasoc/po...

If this is still the case I highly recommend engaging a registered dietician or other relevant health professional who deals with eating issues to get your nutrition back on track. I am a fan of supplements where needed but you cannot supplement your way out of a very poor dietary situation. Wish you the best of luck.

[bubbatetley]

Thank you Technoid.. I hope you are having a good day and ya health is better.

I have Anorexia, which has been with me all of my life, so eating is a real problem. The pins and needles seem to be worse since starting the injections? especially the head..

I am going for a B12 blood test tomorrow, If I'm still low on B12, the Doc has said she will give me more so. She's already said that you can become Toxic on too much B12!!!!

I'm totally confused with all these incompetent Docs!

Take care

Bubba🤪

[Technoid in reply to bubbatetley]

Don't take B12-related advice from someone who says too much B12 can be toxic. No matter their qualifications this shows they are deeply ignorant on the current medical consensus on B12 toxicity (i.e. there is no toxicity).

I hope you can make progress on your anorexia as proper nutrition is really fundamental to a full recovery and your future health.

Worsening pins and needles would be something I would expect, I personally experienced this shortly after my treatment started. Most likely it will improve but it may take some time. Be alert to other issues of course and not putting everything down to B12. In calorie and nutrient deficient conditions other deficiencies and health conditions may develop which is another reason to think outside the B12 box, you need many other things for B12 to work properly and you can't supplement them all.