No diagnosis yet and feeling ill ☹️

[Yvonne3louise82]

Hi everyone, i would appreciate any advice as I'm new to all this and finding it a little scary. I've been unwell for past 2 years with chronic fatigue, weakness to hands and pins and needles to hands and feet, has gradually got worse over the last month with joint aches and severe head and jaw pain. Went to see my doctor who did blood tests and found my b12 was low (141) and my bilirubin raised (36) she gave me 2 weeks of b12 injections so 6 in total and after this did some further blood tests for antibodies. My AMA and IgM came back positive and so she's referred me to a gastroenterologist and thinks it may be PBC (although she did say these blood tests can be raised in healthy people). My IF to test for PA is negative by the way. I feel terrible. I'm 34 years old and feel like an old lady, every bit of me aches and I have no energy to do anything, yesterday I slept for most of the day and was still able to sleep last night for 10 hours! What's wrong with me? How can I help myself until this appointment? I don't drink, don't smoke and eat a varied healthy diet!? Why me!??

[Gambit62 Administrator]

What is wrong with you is the effects of a B12 deficiency. Unfortunately these don't just go away overnight and ironically things often get worse before they get better during the recovery phase.

In terms of your treatment - you have neurological symptoms and, assuming you are in the UK guidelines are actually different for B12 deficiency with neurological involvement from the treatment you have been given and are actually loading shots 3x weekly until symptoms stop improving (review at 3 weeks) followed by maintenance shots every 2 months (though even that isn't frequently for significant numbers of people with B12 absorption problems.

Unfortunately a negative IF test is a long way from demonstrating that you don't have PA as it tends to give false negatives about 50% of the time - not prone to false positives though (except where there has been recent B12 supplementation).

Liver problems can impact on B12 absorption - this is because it is the storage tank for B12 in a healthy person so if it breaks down a very efficient process becomes inefficient.

B12 is used by a lot of systems in the body - including the processes that maintain the insulating layer around nerve cells, the processes that reset the neurotransmitters that carry signals from nerves to the brain and process those signals in the brain, the processes that make healthy red blood cells and the processes that release energy in muscles. Each of these processes will heal at a different rate so how long you take to feel better depends on which system is the source of the symptoms you have and as some symptoms may be caused by a mix of the more than one system so it can be quite difficult to unravel what is going on. Sometimes nerve damage gets left so long before diagnosis that it doesn't reverse entirely.

you can find a list of symptoms here - please tick everything that applies whether or not you have been given another diagnosis for it - and think about what has improved and/or changed.

pernicious-anaemia-society....

If you had a full blood count it would be useful to get hold of a copy - to see if there were any signs of macrocytosis (effect of B12 deficiency on red blood cells).

Sleeping a lot may be part of healing - particularly if you were having trouble sleeping before.

[clivealive Forum Support]

Hi Yvonne3louise82 I am so sorry you are feeling so unwell and ironically it may well be because the B12 is actually getting to work repairing the damage the deficiency has caused.

It would be a good idea if you got your serum Folate level checked as this works together with the B12 and gets "used up" in the process.

I do hope you start to feel better soon.

[deniseinmilden]

I feel really sorry for you. I have been in a similar position as have many of us on here - even to the point that I'm B12d but test negative for PA. You are not alone - there are thousands of us!!

Hopefully you will find good Drs who will help you but be aware that there is a lot of ignorance in the health service regarding our condition and this can leave you feeling uncared for and confused.

The good news is that with the right treatment ASAP you should get your life back and be OK. You will have to do a lot of your own research and manage your life from now on but this is hugely empowering in the long run so good in the end.

Unfortunately the right treatment may include fairly frequent injections and you may have to self inject. The thought of this isn't great but in practice it is fine and it's so good to get your life back and be in control it's well worth it. It's much less than diabetics need to.

There is lots of kind, knowledgeable help available on here and from another support group.

For more information with links to lots of other sources of information you could look up my profile by double clicking on my name and scroll down through my previous posts to see my post, "My Experiences".

Good luck and come back here for any more help and support you need.