Diagnosis of PA advice please.

[Cn13]

Hi everyone,

I posted here recently asking for advice about being diagnosed with PA/B12 deficiency sorry I did not reply to that post but wasn't feeling very well since then. This whole thing is confusing and stressing me out so much. I have another appointment on Wednesday with the GP so hoping I can have some advice before then please.

At the moment I have iron deficiency anaemia. I have told the new GP that I remembered being anaemic before and was told on the phone that it was anaemia due to B12. This phone call was in 2012 so I don't remember exact details. I have now got my medical records from the hospital at the time. I have a letter that says I have anaemia and not iron deficient in brackets. I will post that blood result first but to me there seems to be pages missing and there is no B12 test on there. I'm not sure I would find out what tests they did at the time.

I really would prefer to have a proper diagnosis. Unless there is some report attached to the letter to the GP from the time but not sure how easy it would be to find that now.

I will post my recent blood result below the one from 2012. I just need some advice on what my best course of action is now. I have already had 5 loading doses of B12 at the beginning of April. Last time I met with the GP he didn't seem to think that a referral to a haematologist was necessary.

As regards family history my brother has Psoriasis which is auto-immune. I now think I have developed Vitiligo which is quite recent.

I can't really afford any private testing but would prefer to find out exactly what is wrong.

Results from 2012

Below is my most recent blood results:

Please could you advise what to do next as I just want to try and get whatever is wrong sorted out. Thanks.

[Cn13]

Sorry didn't realise the post would only allow me to post one image. The top image is my recent blood test.

I'll have to try tomorrow to do the other pages my IT skills are not very good.

Hope to get some advice anyway. Thanks.

[Sleepybunny]

Hi,

I think it's possible that once your iron deficiency is treated it may become more apparent as to whether or not you also have B12 deficiency or folate deficiency.

Low iron can lead to small red blood cells (microcytosis) and low MCV , low MCH on FBC.

Low B12 and /or low folate can lead to enlarged red blood cells (macrocytosis) and high MCV, high MCH on FBC.

The effects of low iron may mask the effects of low B12/low folate on the red blood cells and once the iron deficiency is treated, it's possible that the MCV and MCH may rise if there is an underlying B12 or folate deficiency.

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

Has GP considered ordering a blood smear/blood film?

This may show both microcytic and macrocytic cells in someone who has both low iron and low B12/low folate.

labtestsonline.org.uk/under...

Have you had set of iron studies tests done?

labtestsonline.org.uk/under...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment. They are usually quick to respond to enquiries.

hdapatientcaretrust.com/

HDA pct helpline 0207 935 8366

I am not a medic just a perosn who has struggled to get a diagnosis.

[clivealive Forum Support]

Firstly Cn13 stop worrying so much.

You say you "have already had 5 loading doses of B12 at the beginning of April" so that means that your doctor has started treatment for whichever it is - B12 Deficiency or P.A. Hopefully when you see him next he will be able to confirm a diagnosis and treat you accordingly.

I'm sorry you are still feeling unwell but it is still early days yet as the B12 you've had injected starts to repair the damage done to your system and it is not uncommon for some symptoms to get worse before they get better.

If you are having neurological symptoms make a list of them and mark them daily on a range from one to ten of their severity or improvement and present this to your doctor. It will help him determine the frequency of further injections.

I am not a medically trained person but there are others on here who will be able to give you good advice so post the rest of your blood test results when you feel able to.

I wish you well

[Gambit62 Administrator]

Nothing in the above tests points to B12 deficiency - all iron deficiency - sorry can't help further - just not enough info in the above

However, an iron deficiency could be result of an absorption problem which could also affect other vitamins and minerals - such as B12.

[Cn13]

Hi,

Thank you all so much for your replies. I will try to stop worrying so much. When I finally asked for a blood test at the beginning of March this year they did a blood film which showed severe iron deficiency. They did a serum B12 test also and this within the normal range but I have been taking supplements of B12 sometimes. The ferritin on this test was very low but I know that will improve with the iron tablets. I didn't have any iron studies done. Thanks Sleepybunny I may end up contacting the charity you mentioned.

Thanks Clivealive I will start to make a list of the neurological symptoms and show them to the GP. Hopefully when I bring my notes in from 2012 he might agree on a diagnosis.

Would an anaemia caused by a lack of Vitamin B12 ever improve or would I have this for life. The GP has started treatment based on what I have said so I suppose I am doubting if my information is correct.

Thank you everyone for your replies.

[CCSP-27]

I know the other pages are missing but the bet is your B12 was low hence the loading dose 💉beginning of the month. I'm wondering why they weren't continued ?

Ok - keep it simple - ask at your GP reception for a copy of all those blood results. They HAVE TO give them to you ! Post them here if you want.....easy way if you're not techy ....just take photos of the pages and post them too but 'sharpie' out your personal details for privacy.

By the looks of it you're very low in Iron but also in B12 and Folate .....the missing pages will tell you that. You probably don't need a Ref to a Haematologist as it's all something a good GP can sort out .......and follow up with a Ref if treatment doesn't work and you're still ill. Keep a eye on your white cell count and neutrophils- they are very low !

It would appear, across the board, no one is prepared to give help unless the results are WAY below the lab ranges ......because you're thought to be not quite sick enough. My bloods have been on the low side for a long time and I just stupidly accepted the advice .... until the 💡 moment came and I changed things .

Those lab ranges on your results are very different to mine so clearly they differ from area to area ......not sure who sets them ??? They're definitely low though !

Re the B12 💉 big differences in prescribing here too 🙈 My GP missed it entirely as did my Neurologist which is shocking !!!! GP prescribed way out of NHS guidelines and far too little to be effective. Research head on again and I discovered things for myself. Can't say I've noticed much effect but it's early days so here's hoping.

I've the autoimmune factor going on too along with Neuro problems so it's 💉💉💉 for life ..... I had to actually ask for these tests !

Sleepybunny has posted some great links - nothing better than empowering yourself with valuable info. I know info overload is not for everyone so each to their own. I lap it up !

Good luck - you're now a 1st year in medical detective school 😂

SM

[Cn13 in reply to CCSP-27]

Hi SM,

Yes I do feel very much like a detective at the moment. The pages that are missing are from 2012. I have one letter that says anaemia (not iron deficient). I had a phone call from the hospital at the time to say my anaemia was due to B12 but I could just go and buy some tablets. It's only now I realise this may have been the wrong information. There is no serum B12 page attached on my hospital notes. I didn't even discuss this at the time with the GP I had back then. I don't know how I could find out what other tests they did at the time. I will ask the GP tomorrow.

I will read all the links later. This GP I have now seems fine with giving me treatment but I want to be sure this is definitely what I am suffering from.

Hopefully I will get some more answers tomorrow. Thanks for all your support everyone.

[CCSP-27]

Yea - you need a proper diagnosis .....which I'm sure has altered since 2012 !!!

Work on the premise if they prescribed tabs and not injections your B12 was quite possibly border line. ....although with the variations in some treatment I've heard of ...possibly not ?

Ask your GP to retest all your bloods to get a full picture ! Notes get lost and you need to start afresh ....well.....that's what I'd do.

You need peace of mind never mind restored health !

Good luck ....remember quiet assertion !

Susan 🙂

[Cn13 in reply to CCSP-27]

Hi Susan,

Yes a diagnosis would be good. I'd say things are a lot worse since 2012. Just worried if I tell GP to stop all the B12 treatment for the next 6 months I might get much worse.

Yes I do need peace of mind. Hopefully the appointment will go well today. I could ask for the full iron panel to be done maybe.

Thanks for the support.