New need help

Allergies, blood and immune system
1

Hi

I'm looking for some advice please.

Im 34yr old and for about 6months now I had been feeling totally exhausted and tired all the time no matter how much I slept I was still tired but I just put it down to work and 3 kids.Ivery since developed other systoms the most worrying was anxiety and feeling really low again I was too scared to say anything,I started to feel on edge all the time and unable to make any decisions and just not feeling myself at all,I've got a rash on my right leg that I have actually tore the skin because of itching,then there's the bloating and wind all the time,my stomach always looks pregnant,so I went to the Dr and they tried to palm me off with all sorts of the same exudes I was using myself! But I knew you now it wasn't right how I was feeling good so I persevered and she arranged bloods to be done,I've just had a call today from the receptionist to say my b12 is low,my vitamin d is low and my folate levels are low and the Dr wants to see me to discuss treatment but the first appointment isn't till the 31st so as you can imagine I'm now googling like mad to see what this all means and why I'm not been seen sooner? Apparently the receptionist says if the Dr thought it was serious I would be seen sooner,this isn't helping how am feeling just now and is making the anxiety symptoms worse,anyone else have all 3 of these low? If they are low does it necessarly mean a deficiency? Would any of this have anything to do with my liver? I've had a liver function test in the past that came back slightly raised,sorry for the millions of questions but I just can't wait 3 weeks

Thanks

2

Same results as me and my b12 is very low. I believe mine has been low for 17 years. Have you had your b12 checked? Pick up your blood results from your surgery.

3

Yeah when I went to the Dr she took bloods for everything,is had a LFT test,kidney function,diabetes,FBC,thyroid,I've had the red lyrics back but it was just the Dr receptionist that gave me them so am not sure what they mean or which test they came from? All she said was my b12 was low and so was my vitamin D and folate levels,the Dr wants to see me back but its 3 weeks away!! I'm no further forward as I had never heard of b12 before today,I just want to feel better as soon as,I've spent all day today on my p.js either sleeping or sitting obsessing with these results,this is not like me.I just hope they don't just send me away without any treatment

4

If all these are low they will definitely need to treat you. We need folate to process the B12 once they begin your injections. The usual is to give you 'loading doses', that will be six injections over two weeks, then your doctor will wait and re-test your blood to see how well your body is retaining the B12. I believe they will give you folic acid as a supplement, although some of us do better with methylfolate, it is absorbed easier. You should also have VitD as a supplement. It's best if it is combined with K2.

I'm not certain it would give you changes to your liver function, but we do usually have our stores of B12 held in the liver. It's only when we stop absorbing it from food that these stores get depleted.

Those who follow a very restrictive diet, vegetarians or vegans, often have this problem. Otherwise it means there are digestive issues, are you coeliac by any chance? Or do you have other digestive problems?

The GP should also do further testing to identify Intrinsic factor, to show if this is Pernicious Anaemia. This blood test is very unreliable, so even if it doesn't identify PA, you will still need the injections. 

After the first six, they often go down to one every three months. If you are having neurological symptoms you must have more frequent injections. A full symptom list can be found at the Pernicious Anaemia Society website, it is a good idea to print this off, and tick any that apply to you. It can come with you to your appointment with the GP.

Anxiety, terrible tiredness, loss of balance, foggy brain, pins and needles, were all symptoms that I had. It is now three years since I began treatment, and I am much better. I still get some pins and needles when I am very tired, or due my next injection. Fortunately the foggy brain has cleared a lot, but I still struggle for some words, names, memories.

I hope you will soon be feeling much better. You are entitled to have a copy of your blood test results, your GP may ask for a fee to cover printing costs. I always ask for mine now, so I can keep track of things,

Good luck! Marion 

5

Ring them and ask what your b12 & D level is.

6

It definitely affects your liver. I spoke to a doctor about it.

7

Thank you for all the information it's helped me understand a bit more now,I had no idea what any of this all meant so been left to find out for myself until I see the Dr,I know it's not life threatening but to feel like this for another few weeks is making me miserable,I've got 3 kids and a job so I've not got time to have no energy.

I think I will call back and even ask if a dr could give me my results over the phone and maybe explain them,reading up on this there's a few symptoms I've not got or are similar,I've not for what you call pins and needles but in the morning sometimes I can be quite clumsy with my hands like there still asleep and the memory thing is just recently with me but it's more dates and events I forget or forget to do things but again I didn't associate any of this,I think being a busy mum alot of it I was putting down to that.

I did tell the Dr that in the morning I have pain round about where my kidneys are and sometimes it can be quite bad,it goes away once I go and have a pee and move about but she said it was more likely to be muscular than kidney related.

8

Really? I have tried to find more on this but can't see much,I suffer from pain in the kidney area alot usually in the morning until I go to the toilet but Dr just dismissed it,is used to suffer from alot of uti aswell but again never investigated,I had an LFT that came back slightly raised 2 years ago but they said it could be a one off and it wasn't too raised,I feel like I'm being palmed off with alot of things

9

My neuralgia and neuropathy issues came years after my first symptoms. I'm getting my injections soon. I'm so glad because my life is barely worth living right now. I can't do anything.

10

I was very clumsy, dropping things all the time! The mental confusion meant organising my day, remembering to do things, or peoples birthdays, was awful.

i get bad back pain, and that is something I've had for a long time. When you realise that B12 is needed for every cell in the body, you begin to understand how many things can be affected. One of the worrying aspects is the deterioration of the myelin sheath that covers all our nerves. Some Doctors don't know about this. 

11

Aw no I feel your pain,part of me is quite glad that this is what's wrong because I thought I was loosing it! I was scared to speak to anyone incase they told me I needed anti depressants not that I'm against them and I know some people need them I just didn't want to go down that road,it's more my anxiety which again I kept denying I had and my mood swings which are becoming harder to control,I'm an emotional wreck just now and feel guilty as I've a wonderful life, everythings like a vicious circle just now,it's affecting my weight and thats not helping with my confidence and my mental state,I hope you feel better soon once the injections start ❤

12

Just goes to show you how many things it can affect,I just wish I could get some answers from the Dr sooner so I can get on with my life and loose the weight that I've gained through what I thought was just laziness!

13

I've been on antidepressants most of my life then learn my first pregnancy probably started it off. Did you not call your doc and ask your level? I get the receptionists to tell me and print it.

14

The receptionists are not the nicest at my surgery had many a run in with then,I could ask but would I understand it? I'm not sure what it's classed as low?

15

It's quite confusing because the ranges are different in other countries and even different counties. Some places say that under 500 ng/L with symptoms is low. Some people have a normal low. It's different for different people. I have a huge amount of symptoms and I'm very ill. Mine is 108 ng/L but less than 200 ng/L in my area is severely deficient. Once your b12 is low you will have 6 injections for 2 weeks then at least one every 3 months after that. Once you know your levels you will go from there. I'm just waiting for an antibody result to see if it's pernicious anaemia. I've been ill for 17 years with b12 deficiency symptoms and have never been tested until 4 weeks ago!

16

If all three levels are "low" and the doctor wants to discuss treatment then that is a step in the right direction so please try not to stress too much,

Make a list of your symptoms and present this to your doctor together with the and ask him to treat you according to your symptoms..  

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

​I wish you well and hope you get the treatment you need and deserve.