Hi, I was diagnosed on Tuesday with Pernicious Anaemia!! Complete shock as never even heard of it before!!. Dr left me feeling confused and scared as he seemed to have no idea!!.
I have been given folic acid to have for 1 month and then following that I will start with injections that I’ve been told will be for life.
I’m confused as I’ve heard my treatment is incorrect, I’ve called surgery back and a different doctor confirmed the same treatment!! I’m feeling awful... dizzy, tired and heart palpitations!! I really don’t know what to do next ?? Should I just wait ??
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Although not certain, there is a possibility that high levels of folate, in those with low levels of B12, may be harmful. ncbi.nlm.nih.gov/pubmed/268...
There is no reason at all, that I can think of, for having to wait for folate levels to rise before giving B12 injections.
I will try the doctors again on Monday and see if I can get to see another doctor ... just worried that I’ll get the same answer again !! I’m definitely feeling worse since being on folic acid !!
fbirder is spot on with his response . You are also right when you state that your GP has no idea . Also backed up by another GP ! It is a fact that many GPs have very poor knowledge of PA Many of us on this forum know this to our own cost . Best wishes .
Pernicious anaemia is an auto-immune gastritis that stops you being able to absorb B12. Eventually this leads to a B12 deficiency. Folate will not correct a B12 deficiency.
The name pernicious anaemia comes historically from the fact that B12 deficiency will cause a type of anaemia in which your red blood cells are larger and rounder than normal - this type of anaemia is also caused by folate deficiency.
Anaemia is only one symptom of B12 deficiency and whilst it can explain some symptoms it doesn't explain all - B12 is used by a number of different processes in your cells and the production of red blood cells is only one of them.
I think the first step is to find out exactly what is going on - is your GP talking about macrocytic anaemia or B12 deficiency/PA. Look at the symptoms of B12 deficiency and folate deficiency. Think about how long you have had those symptoms. If they came on quickly then its likely to be folate deficiency - if they have been building up for years or even decades then B12 deficiency.
Try not to worry too much, but get a second opinion or ask why you have been given folic acid initially as I am not sure why you have been given folic before the B12 jabs, unless perhaps you are iron anemic as well??
I know from my own experience, that initially I was given the B12 jabs quite frequently until my levels and blood tests were considered as normal as they could be.
I was only given folate acid for a while with a added iron supplement, when I was iron anemic as well, but I was quite poorly at the time due to heavy periods. When you are are iron anemic, you seem to bleed more, I guess because your blood is thinner maybe? You can have both iron anemia and PA.
I am no longer iron anemic, so do not take the added supplements and only have the jabs every three months now, (due for my next one this Friday) but for a long time, I was having jabs every two months.
It runs in our family, I was first to be diagnosed about 20 years ago, then my dear dad, was diagnosed late in life and both my siblings are borderline, so took and take supplements.
The only thing I would advise, is if you are in the UK and are given a year prescription, so have to take your injections with you to the Dr's. Take them out of the fridge about an hour before and keep them at body temp, as then, it doesn't sting too much. You do get used to it after a while.
Thank you so much for your response JOLLY DOLLY, my folic acid was 1.7 and the last doctor I spoke to said it was vitally important I remain on folic acid before injections?? I will go back on Friday and try again for some more answers??.
Is it normal that I feel absolutely awful on 5mg of folic acid? Dizzy, feel so sick and upset stomach and every day I feel worse.
I didn’t even know this condition existed prior to last Tuesday so I’m completely clueless.
I have been given 5 ampoules of b12 for when the time comes, doctor told me to store in fridge but pharmacist said not to... I’ve kept in cool cupboard after checking google as well ?? Should I have been storing in fridge?? Hope they aren’t now ruined !! Feel like nothing is going right and only the beginning of this journey.
I get nausea most days anyway due to anxiety, are you taking them on a empty stomach? as not sure about the folic acid as I took mine in conjunction with the iron supplement and only for a short while. The iron supplement I was on for a lot longer. I would check with the Pharmacist/chemist.
I keep my B12 jabs in a drawer now, in a cool place but I used to keep them in a Fridge, but then we were told by the chemist not to keep them in the fridge. But about a hour before I am due to go the Dr's, I wrap it in a tissue and put it down my cleavage lol to keep at body temp, to ease the sting when it goes in.
Never had any issues even when I used to put it in the fridge! So I think your jabs will be ok. We can only go on the information we are given by the Professionals, so don't worry.
When you get the jabs, (I have a yearly prescription), I always check the dates to be safe. The nurse, will check anyway. They normally give you a date of your next one as well, so you can book.
Hope all goes well on Friday, that is when I am having my next jab. Let us know how you get on.
Hello lovely, well I went and dr offered to inject me after he had finished his surgery... so first injection done... felt woozy and dizzy after it but I guess that’s normal and I’ve stocked up on coconut water now !!
All booked in for 2 this week and next then the last week after. He has also referred me privately to see a consultant on 21st of this month, as he wants to check other things out !! I came out and I cried !!
Someone actually listened and is helping me ?!!! I made sure the receptionist gave him my glowing feedback as I was so chuffed !! Next thing is SI ... and the mine field that is needles and kit etc!?.
How did you get on with your injection ?? You feeling its effects?? Hope you are well xx
Glad you had your first injection and the Dr is finally listening. I cried too when mine finally listened to me. Yes you can feel woozy sometimes. Mine actually hurt me this time, but the nurse was to busy chatting lol. If anything I feel achy at the moment.
You will most probably have them quite frequently to start with and once your blood results go to "normal" levels, they will likely go to monthly, until the usual three month intervals.
You look after yourself and keep in touch. I am glad they are finally listening though. Can always message me, if you want to chat.
Hi lovely, as level was so low at 1.7 he wants me to remain on it for few months to work with the injections. I don’t think I’m iron anemic but I’ll ask at next appointment next week. Another injection for tomorrow booked and Friday this week .. am I better having banana and coconut water before or after injection as I felt really dizzy after last one ?? X
That is understandable my lovely. Lets hope it does the job. Some of the meds, do take a while to get into our system. Keep fingers crossed for us both. xx
I am feeling more with it now, not so achy, which is good. I have got a lot on my mind at the moment, so preoccupied. I seem to live on my nerves these days lol.
I was having them every two months, until a year ago, but since I am not longer iron anaemic, all my levels have steadied themselves, so have them every three months now.
Im sorry to hear that you’ve got a lot on your mind ... remember I’m only a message away if you ever need a chat lovely. Good news that your symptoms have eased.
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