help please

[Windyway]

Hi I’ve just joined the forum ,

I’ve been diagnosed with pernicious anaemia it’s in the family ,and low folate ,

I’d had the basic B12 bloods done they said I was ok ? Bloods for B12 showed 2,000 high

I only got diagnosed because I asked for an intrinsic factor antibodies gastric parietal cell blood test cos I was advised to do so not by my dr tho ?? It came back positive they then said I can have b12 injections for life I had 6 loading doses over 2 weeks in January this year my next injection is the end of March I can only have them every 3 months ? Is this enough? Will my body absorb them is there anything I can do to help this ? Do I need the injections more frequently?

the main thing that is scaring me is the irregular fast heart palpitations/ beats ?.

I am seeing a functional medical dr and I’m having more bloods & urine Tests done I’m very concerned at the moment i didn’t see much of a improvement after the 6 loading doses to be honest but obviously I need them apparently? I’ve probably got other issues my stomach isn’t the best I don’t sleep very well especially due to my heart issues I’ve seen a cardiologist they can’t find anything wrong !? but they said my symptoms could be metabolic related? There is a blood test that’s called comprehensive metabolic panel test which might help but the drs are saying they don’t do this test ?? Probably due to costs ?

Can anyone help suggest anything that might help me please ?

Thanking you Windyway

[Narwhal10]

Hi Windyway,

Welcome here. Sorry to read. I will reply properly tomorrow. Please consider joining the PA Society for correct information on this insidious disease.

pernicious-anaemia-society.org

There are lots of myths and misconceptions around it by health professionals.

I hope your ferritin and vitamin D levels were good as well. Plus, you have copies of the results.

Sorry to read of the irregular fast heart palpitations/ beats. They can be worrying. Many of us report having experienced this. Vitamin B12 is needed in the blood, so we can oxygenate our bodies (and brain). When we are deficient in essential micronutrients, our poor hearts have to work a bit harder. That is a simplistic explanation.

[Nackapan]

I had erratic heart beats without even moving.Also rhythms that felt like an anxiety attack although I was quite calm.

B12 deficiency can affect your autonomic function.

I got worse before better once on b12 In jections .

Ferritin and iron can drop so do have bloods repeated for this .

Is your folate level okay too.

[Wwwdot]

Hi Windyway

So sorry to hear you have joined the PA fraternity but nonetheless “welcome”.

Some good advice so far, please do join PAS as for those of us with PA the majority of support and knowledge to manage your health challenges is within this group. GPs offer minimal support at best and even sub minimal support at worst.

🤗🤗🤗

[HeartyGilly]

the NICE Guidelunes say you should continue with the loading doses until there is no further improvement. So, I would suggest that you ask for your loading doses to continue until you feel better. I have 8 weekly B12 injections at the surgery but have to self inject in between as 8 weekly is inadequate for me.

[Narwhal10]

Hi Windyway,

Did both your Intrinsic Factor and Parietal Cell come back positive ? Please ask for HARD copies of these results and keep them SAFE.

Yes, you are to have 1 mg/ml of Hydroxycobalamin (vitamin b12 injections) for life. The ‘bog standard’ treatment on the NHS is 6 loading doses over 2 weeks and then 3 monthly injections.

Many of us cannot survive on this paltry regime. It really does depend on your GP Practice. Some people have fought to get them 8 weekly. Lots of us did not bother to argue and Do what we have to.

Only you will know if it is enough. All of us have had a huge range of symptoms and severity. We may have had Iron Deficiency Anaemia and/or Folate deficiency too. Plus, other chronic or acute diseases/illnesses or conditions.

In answer to your question of will your body absorb them, the medication is being given by intramuscular injection. Muscles have a good blood supply. It is one of the most effective ways to give a medication.

When you say you have other stomach issues, what do you mean ? Have you had endoscopy, colonoscopy ?

Many of us taking a multivitamin/mineral. We can have no or low stomach acid so either use lime juice, apple cider vinegar or Betaine HCL with Pepsin. Dietetics is biochemistry which also is the basis of pharmacology. You can ask for a referral to a Dietician but I do not know how long the wait will be. This Specialist will know about Metabolism.

Having poor sleep is a symptom of PA and also impacts our mood. Many a time, I have done an impression of a walking zombie.

Best wishes.

🐳

[Windyway in reply to Narwhal10]

Hi Narwhal,

Thanks for yr reply , only my parietal cell factor was positive October 2023 but my functional medical Dr thinks from past intensive blood & stool tests in 2018 & recent tests of elevated serum B12 levels I had high methylmalonic acid signaling intracellular B12 deficiency Just trying to understand it all at the moment my mum & sister had pernicious anaemia to ,

but my functional medical dr who I'm paying privately for has said from past & current NHS & private testing bloods there is a problem with B12 metabolism which she reflects me taking only B12 only supplements & them staying in the blood because they are not being well processed & I’ve no dietary B12 sources with being vegan & ability to absorb B12 is poor she has recommended a B complex to support B12 metabolism & methylation , I’m on a treatment plan & have been taking different supplements since end January also high Histamine has been mentioned this is all being done naturally not using any side effecting mediations from the normal Nhs Drs !!

I also have autoimmune thyroid autoimmunity although my thyroid function remains intact just try to avoid gluten,dairy,soya etc , recommend selenium & iodine as part of my support programme,

Just feel confused with it all really I have spk to my Dr about a comprehensive metabolic panel test as the cardiologist who can’t find anything wrong with my heart even though my heart palpitations irregular heart beats are there all the time really has advised my heart palpitations irregular fast heartbeats may well be connected to metabolic issues?

I hope you don’t mind me mentioning all of this big long winded! I have been able to get my Nhs Dr to agree to me having B12 injections every 2 months do you think this would be ok ? I also need help with methylation issues ?

Any recommendations or advice what is the best way to help my pernicious anaemia would be very much appreciated.

Regards 😊

[Hockey_player]

Every 3 months is not enough for me. I was having them every 3 weeks but the symptoms would return before the next injection.

[Sleepybunny]

Hi,

I've only just spotted your thread.

Might be some useful info in my reply on this thread.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not medically trained.