After some B12 advice following results

[BlackberryJam]

Hi everyone, thanks in advance for reading. These sites and forums have been so useful since having found out I was deficient in a few things a few months ago. Following a blood test, it showed I had low B12, deficient in Folate and Vit D and low iron, but not deficient. This topic was not one I knew anything about before and it has been hugely interesting to find out more about it. After some faff at my GP and too many doctors getting involved, some saying it wasn’t low enough for injections and one saying it was, I was finally booked in for loading doses.

My B12 was 174 when first tested and then a couple of weeks later, it was 160 something.. and the doctor had marked it as “sufficient” - thankfully when I challenged it, my main doctor stepped in. I did the loading doses, vitamin D in high dose for 7 weeks and am also taking daily folate (meant to be for 4 months)

I had gotten so used to how I was feeling that I thought it must just come with running a household and being in my mid 30’s, so when I found out that how tired I was feeling along with a lot of other symptoms could be due to this and could be resolved, I was over the moon.

I felt amazing during my two weeks of loading doses. Honestly, after my first injection I could breathe so well, and was just shocked that for so long even just breathing wasn’t how I should be able to breathe! Head aches went, I had so much more energy. No more waking up feeling like I had just run a marathon. Wasn’t noticing palpitations any more. Suddenly realised my lower back pain wasn’t just age. Sore ankle wasn’t just age. Just felt so much better in so many aspects.

My doctor allowed me to have the ongoing injections every 2 months due to neurotically symptoms. Had my first 2 monthly one a couple of weeks ago.

I am not vegetarian or vegan. Couldn’t pin point any reason why I may be low in B12, so had some more blood tests to check for coeliac etc. but nothing has come back positive. Tested for intrinsic factor antibodies which also came back negative. Am currently waiting to have a lower bowel MRI.

Enough back story.. what I am struggling with is.. I was feeling great during loading doses, but maybe 2-3 weeks after my last loading dose injection, I was starting to feel a difference already and could feel I was declining again. Since having my first 2 monthly one, I really don’t feel like it has made any difference in making me feel better again. I wonder if because I started to feel crappy again before the 2 month one arrived, if I need to push for loading doses again?

I also am going to book an appointment to discuss this and ask for my parietal cell antibodies to be tested as I have seen on here and in other research that a negative intrinsic factor antibody may not mean I don’t have PA.

Any of you on here have confirmed PA and negative IF antibodies?

I guess I don’t even know what my actual question or advice is, other than whether I am on the right track with my thought process of what I think I should be pushing for.

Thanks for reading and thanks for everyone else that has posted as it has been so useful to read other posts too.

[Nackapan]

The injection frequency takes a while to work out.Parietal cell antibody test is not used to diagnose PA.

You are right about 50% of those that test negative for IFAB test do havd PA .

Antibodies just not there to detect .

NICE guidelines do state every other day b12 injections until no further improvement with neurological symptoms.

Good you had s positive response to loading doses.

Some feel alot worse before better.

I did.

I also had loading doses of vit D .

Before b12 def wax found.

About a year before.

I also have a mixed diet including .

No exclusions

Also waxs prescribed iron.

Only needed 400mcg of folic acid fof a short while to raise that level.

Commonly these are low due to an absorbtion issue.

No further testing of b12 levels are needed

Have every test you can.

It's a good sign you were offered 2 monthly . Some gps go straight to 3 monthly.

Go by symptoms .

The aim is to have an injection before they are all back.

We all seem to need different regimes

The good news is your response to b12 .before getting very ill.

[Cornwaller]

It seems clear that you need b12 injections around every two weeks. This may be difficult to obtain but if you read this forum you will be aware of how this can be achieved. Further testing etc is interesting but doesn't really change your bodies need for b12.

[Narwhal10]

Hi BlackberryJam,

Welcome here. You really need to learn about this illness because it is totally bizarre. Become a member of the Pernicious Anaemia Society

pernicious-anaemia-society.org

You do not need to have an exact diagnosis, you can be involved in research and they are the only organisation that can produce statistics. Please know the misdiagnoses too :-

b12info.com/misdiagnosis/

Plus, buy or download Dr Joseph Chandy and Hugo Minney (PhD)’s book Vitamin B12 Deficiency in Practice.

b12d.org/book

GPs do not know about it because they have so many other diseases to learn. Plus the politics, policies and bureaucracy.

There are lots of myths and misconceptions about this disease/condition. Please get hard copies of your blood results. Please note the range and the cut-off levels for B12, ferritin, vitamin D and folate in YOUR area. They vary wildly within the U.K. which is known as the Postcode Lottery.

Please do not allow your B12 levels to be re-checked once treatment has commenced. It is futile. Keep a symptoms diary to monitor your own progress. In the U.K., standard treatment is 6 loading doses are Every Other Day (EOD) for 2 weeks. Then we are moved onto injections Every 3 months. You are currently having 2 monthly whilst waiting for a lower bowel MRI.

This is a massive learning curve for you. I gather you are a Brit because of the use “faff”. Most of self treat (SI) because we cannot survive on 3 or 2 monthly. We have heard from medics that we are addicts and it is toxic. All rubbish. You can fight with a GP and show them NICE guidelines. Although, the word is guidelines and the Trust or CCG will have their own Policy. One lovely GP publicly stated that they were fined when they treated a patient whose B12 levels were just in range but highly symptomatic.

Very recently, Wes Streeting commented about protecting ‘whistleblowers’ within the NHS which is the Public Interest Disclosure Act 1998 (PIDA). Unfortunately, this again is fanciful thinking. Please understand that the NHS has got very bruised and battered, they dealt with COVID-19. Then doctors, nurses, ambulance drivers, all went on strike. Now why on earth would they do that ??? If the General Public cannot understand that and still make impossible demands then something is really amiss.

We follow the wedgewood method, source our product from Germany. It takes about 5 days. Buy equipment from U.K. If you know your history, the privatisation of the NHS began in 1979; that’s 45 years ago. Can anybody of the community tell me what the NHS Business Services Authority do ?

Pwb lwc

🐳

[Hockey_player]

Some people need B12 more often than once per 2 months to keep the symptoms at bay. I get symptoms back in 3 weeks so I do weekly injections. I am not convinced you need more tests. The awesome improvement you had on the B12 points to it being an issue. I think the problem is that you need it more than once per 2 months. Many people on this forum end up self-injecting (my husband gives me my shots). It avoids the inconvenience of going to the doctor and also the ordeal of trying to get them to give you injections often enough.