b12 injections done but don’t feel better

[16131613]

hi I’ve recently been diagnosed with b12 deficiency, no idea why my if was fine apparently and no sign of coeliac. Dr doesn’t seem to want to look into it any further which is annoying. But I’m finished with my initial injections almost two weeks ago and I don’t feel any better. Is this normal?

[Nackapan]

The IFAB test csn be negative in 50% of those with PA.Depends on how long you were deficient

What your symptoms are

Have iron ferritin vit D folate befn tested

What is your maintenence b1e treatment

2 weeks id very early days.

Next more info really for yoh yo get more replies

[16131613 in reply to Nackapan]

What’s a b1e treatment? My initial test was 149 and they retested and it came back a month later as 175ng/l the last test before which was 2017 was 262ng/l. My serum folate was 2.7 ug/l and ferritin was 17ug/l. Vitamin d wasn’t checked. My diet is limited but I eat a lot of dairy products. I have laryngopharyngeal reflux and my ibs which has been dormant for about 20 years has flare back up badly the last 6 months. I’m a literally wiped all the time. My vision varies daily and I have bad headaches every day. I get pins and needles in my hands mainly my right which I disagree is carpal tunnel but that’s what they reckon. I’ve also been gaining weight recently that bi matter what you I can’t shift

[HeartyGilly]

injections should continue until there is no further improvement according to NICE guidelines so go back and ask for them to continue until you feel better

[Wwwdot]

Hi 16131613

Are you taking folic acid?

As others have said it is early days but perhaps you need more B12 until symptoms improve or plateau.

All the best 🤗🤗🤗🤗🤗

[B12life]

what was your b12 level before any injections?

If you are deficient and not vegan, you will need every other day (EOD) or daily injections for a long time (2+ years) to get any sort of normalcy. Docs don't understand that and thus always stop the injections. b12 comes from meat. If you eat meat daily, yet still ended up deficicient, you may need injections for life. The progress toward getting normal is VERY slow. Much like your b12 stores were gradually depleted over years, they will take a long time to be restored and the damage to be repaired.

If you don't get treatment, the damage can be permanent.

Read:

ncbi.nlm.nih.gov/pmc/articl...

And then there are a lot of articles on PAS site: pernicious-anaemia-society....

and

stichtingb12tekort.nl/engli...

[PaintLadie]

This may or may not be helpful, but after reviewing my medical records I realized something. I don't methylate properly.

That means my body also does not utilize the B12 and folate I do get efficiently in a way that helps my body fight oxidative stress and allows it to detox. B12 is part of the methylation process and not methylating properly carries the same symptoms as just having a B12 anemia. So I'm having to take a ton to get even a small end result because I'm not methylating what I am taking. I recently just started taking Glutathione, L-Metathione (spelled this one wrong I'm sure of it)and NAC. All amino acids, I think, to help my body Methylate and detox. They seem to be helping as many symptoms including the are staying at bay longer and I am finally starting to feel bigger changes. I still am taking a high dose of B12; I'm at 2 ML a day now alongside the other supplements, but I think I'm still healing. My body is also detoxing at a high rate now; I can tell as I keep getting this itchy rash I've had in the past when doing a detox for health.

My last doctor tested me for the MTHFR mutation which I do have on top of PA and not absorbing B12 from my stomach. I don't know for sure if the above supplements are all I need as I am figuring this out on my own with the help of the internet until I can hopefully find a Doc more knowledgeable in Methylation. I hope this helps.

I was diagnosed with PA a long time ago and my records of diagnoses have been lost. Since then I have had many negative IFAB test which only tell me I have no intrinsic factor for my body to create antibodies to attack. It tells the doctor I have no PA. I have had to fight to keep my injections and after reading my records. It is not making these medical professionals happy. They have made me sounds nuts for saying I have PA. My Gastroenterologists office has offered to prescribe me my B12 injections. They can see the destruction to my stomach. Your best bet would be to see a GI doctor so they check your stomach and see if there is any damage otherwise it could be a methylation issue or dietary one.

Also apparently catching COvid causes oxidative stress on the body. I was just maintaining until the last few years and then my health just went kaput. I suspect my bodies poor methylation could not keep up with the oxidative stress the last few years had to offer.

[16131613]

What’s a b1e treatment? My initial test was 149 and they retested and it came back a month later as 175ng/l the last test before which was 2017 was 262ng/l. My serum folate was 2.7 ug/l and ferritin was 17ug/l. Vitamin d wasn’t checked. My diet is limited but I eat a lot of dairy products. I have laryngopharyngeal reflux and my ibs which has been dormant for about 20 years has flare back up badly the last 6 months. I’m a literally wiped all the time. My vision varies daily and I have bad headaches every day. I get pins and needles in my hands mainly my right which I disagree is carpal tunnel but that’s what they reckon. I’ve also been gaining weight recently that bi matter what you I can’t shift

[jade_s in reply to 16131613]

I think she meant 'b12'. How often are you injecting b12 and which type do you use?

Are you supplementing folate & iron?

Have your thyroid levels been tested?

[16131613 in reply to jade_s]

Thyroid has been checked and is fine apparently! Had the injections from the gp and wasn’t told I needed to do anything but wait till my next at 3 months! They don’t seem to care about my folate being low! I have no clue what I should do and what I shouldn’t I’m completely lost

[jade_s in reply to 16131613]

Hi 16131613, it's all very frustrating, I know. I will make an attempt to help but keep in mind I am not medically trained! Just a fellow sufferer. Many of us have been in your shoes.

I know it can be overwhelming at first, so take you time to digest the info, and please do write back with more questions.

For thyroid: feel free to post your results here. Sometimes doctors say all is fine when it's not. There is someone on the ThyroidUK group whose doctor said "all was fine" while their TSH was 100, that is, severely hypothyroid. Unfortunately we have to take matters into our own hands sometimes. Do post your results, together with the ranges, and we can give a non-medical second opinion

Regarding B12/folate, I have posted a long list of resources here. It is long, so you don't have to go through the whole thing, but take your time to read through the relevant links. healthunlocked.com/pasoc/po... I will extract some for you below.

For folate, they should have prescribed a supplement - usually 5mg but some people cannot tolerate that, so you could start out on a 1mg (1000 mcg) dose of folic acid (or lower) and see how it goes. If you cannot find that dose, you can take several tablets of 400 or 800 mcg - you can find this in most vitamin shops. b12deficiency.info/folate-b... B12 needs good folate levels to do its job!

For B12, most people cannot get by on 3 monthly injections. Here you have various options. See also the "What to do next" page from Tracey Witty, a B12 advocate b12deficiency.info/what-to-... (especially point 7)

1) Write a letter to your doctor asking for more frequent injections. Letters are sometimes more effective than conversations, because they go on your record. Here are some letter templates b12deficiency.info/writing-... You can print out / copy over all the symptoms that you still have b12deficiency.info/signs-an... and pernicious-anaemia-society.... and request more frequent injections.

If you have neurological symptoms (tingling, pins n needles, balance problems, etc - see the lists) then in the UK you should be getting every other day injections 'until no further improvement'.

If you don't have neurological symptoms, then you can still request them more frequently.

You cannot overdose on B12 and it is not toxic. Some people just need more frequent injections. See also "The Many Faces of Cobalamin (Vitamin B12) Deficiency" especially Table 1 on "Misconceptions and Misbeliefs" associated with B12D. Full text available: ncbi.nlm.nih.gov/pmc/articl...

2) Join the Pernicious Anemia Society and ask for their help pernicious-anaemia-society.... - they are sometimes able to help you convince your doctor to get more frequent injections

3) Inject on your own, at the frequency that you need, using B12 ampoules from reputable Germany pharmacies (like so many of us here do). If you want to go this route, just ask and we will provide more information.

For low ferritin, it's best to get first get a full iron panel, because ferritin does not always track iron, and iron can be toxic if you don't need it. Many people get a private lab, such as the ones listed here: thyroiduk.org/help-and-supp... best to get a full iron panel that includes: serum iron, % saturation, TIBC, and ferritin. You can post back here when you get the results. Then if iron is low, you would do well to supplement with iron. If it's very low, you could even push for an iron infusion (though I understand that's difficult to do in the UK).

You can also get vitamin D tested through the companies above. I highly recommend that you do, because so many of us are also deficient in D, and that can also cause all sorts of unpleasant symptoms.

I know this is a lot, so re-read through this several times if you need to, and don't hestitate to keep asking until you understand. Best wishes x

[16131613 in reply to jade_s]

My thyroid result says 1.44mI/UL that’s the serum TSH level that’s the only test Uk gps do! I’ve attached a copy of the email I sent them which they have ignored and the only response I got was it was added to my record.

Letter

[16131613 in reply to jade_s]

3rd page

3rd

[jade_s in reply to 16131613]

You might want to delete this one as it shows your name

[16131613 in reply to jade_s]

my surgery are awful but cos of mental health struggles I’m stuck! I can’t cope with changing although I’m not sure I’m gunna be left with no choice! I can’t make calls so I email them but they just ignore me! It’s awful in the Uk! The NHS really is not fit for purpose at a primary care level. The surgery’s are all owned now by practice managers and it’s all about not spending any money!

[jade_s in reply to 16131613]

I'm sorry 😥 this seems to more and more the 'normal' sad state of affairs.

Low b12/folate, iron, and thyroid are often associated with mental health issues.

All i can suggest is to take matters into your own hands, push as much as you can, read read read, do your own tests, self source if/where you can, and don't give up. Plenty of people on these forums to commiserate with and learn from xx

[jade_s in reply to jade_s]

Link with low b12 & Mental health & Neuropsychiatric symptoms

b12deficiency.info/mental-h...

stichtingb12tekort.nl/engli...