Pernicious Anemia

[PearTreeBoat]

I've just been diagnosed with Pernicious Anemia due to extremely low vitamin B12 and folate levels.
Have been advised this is due to an autoimmune disease for which I'm now under investigation for to see exactly what we are dealing with.
For years I have been getting frequent and severe outbreaks of cold sores (along with some of the classic symptoms such as tiredness and fatigue etc). I also suffer fairly badly with IBS.
The cold sore attacks have been getting much much worse over the past couple of years resulting in me being signed off work for a week due to the horrendous nerve pain.
Does anyone have any experience of wisdom of if the 2 are linked and if so what you were eventually diagnosed with.
My doctor currently thinks either Crohn's disease or lupus are the 2 most likely scenarios but I don't see the link to the cold sores other than just having a knackered body that is giving up on me.

Cold sores can be a common symptom of low B12, I don't know if that's due to being generally run down or the fact that B12 is needed for nerve health. Are you on Facebook? There is a fantastic support group on there with tons of info that I really recommend joining, as most doctors don't know enough about PA or B12 deficiency in general, and it's very common to need more regular B12 injections than doctors think you should need

Thank you @UpTheLaganInABubble that does make sense now as it was due to the severity of the nerve pain getting worse and worse, along with actually looking at my medical history, my (new) doctor ran a whole list of blood tests which lead to the deficiencies finally being picked up.

I had been fighting with previous GP's to have the severity and frequency of my outbreaks taken seriously, as there is no way they are normal, and to have my other symptoms looked at as a whole as opposed to just treating the issue that has flared up that time.

I am on FB if you have the name of the group I would love to have a look and hear about real symptom links as opposed to Dr Google!

It's just called Pernicious Anaemia/B12 Deficiency Support Group and it's the one with over 22,000 members. You'll hopefully see a vast improvements in symptoms once you've been on the injections for a while

Ah excellent, I have found it and sent a request to join.

I've been prescribed tablets 3 x per day to start with, so that my absorption rate can be tracked (pretty sure that was what he said) and will be moved onto injections after 3 months.

I already have more cold sores starting this morning, less than a week after the last horrendous outbreak cleared up so am praying that the tablets start working soon!

I am very glad you have joined it as you most definitely should not be prescribed tablets! You need injections asap, the whole point of PA is that you can't orally absorb b12 in any form. Tablets will skew your blood results and make it look like they're working, but won't do anything to help your symptoms

Oh I can't thank you enough for recommending it. I've gained so much information and importantly knowledge that some symptoms that I had thought of as just niggly age related things are actually symptoms of nerve damage already being caused.

Along with now knowing that the tablets aren't going to help, if anything could make things worse by masking the deficiency.
I shall be straight on the phone to my GP tomorrow to make another appointment for as soon as possible and shall insist on injections and make sure all these other symptoms are recorded on my records.

Thanks again, you may well have just saved my life but have most certainly saved my sanity 😁

You're more than welcome, it really is a great group, and definitely saved my life... I was misdiagnosed for over a decade and needed a walking stick and had signs of dementia before I finally got B12 injections. That group gave me the info and strength to fight for proper treatment! Good luck with the GP, hopefully they'll listen without a fight

You say you have IBS - have you been checked for coeliac disease as it likes to travel with pernicious anaemia ( gene linkage).
Agree tablets will never work if you have antibodies to intrinsic factor, my Dad has been fobbed off with the same and finally got an injection last week and feels better already.
As you say pernicious anaemia is an autoimmune disease, and they rarely exist as just one disease. Basically once your immune systems goes off on one it manifests itself in many ways.
I started with vitelligo, then developed mixed connective disease, then pernicious anaemia and coeliac disease, then fibromyalgia and now I am being investigated for thyroid. Sounds terrible, but with the right medication I live a reasonably normal life working full time in a demanding role. But I have to pace myself - no skydiving in my time off etc.

I went back to my doctors on Friday to discuss and few things and ask some questions and he was so blasè about everything. He agrees my symptoms such as the tingling/numbness, confusion, eye sight etc are all signs of nerve damage but still won't give me the injection until December and wouldn't really answer why.

He has did say the further blood tests he's ordered (checking for IF, ANA etc) should really been done as soon as possible but he thought that might be inconvenient for me, hence he was going to wait till December!! I'm now booked in for these on Tuesday.

He is suspecting either Crohn's or celiac but I have a family history of lupus so wants to check me for that too.

Although it's a long road ahead and they may never fully diagnose what is causing all my problems it is good to know it's not just me going mad or being a hypochondriac.

It's also really reassuring to know that you lead a full life as there is no way I can afford to give up work and I'm not quite ready for the knakers yard just yet!