Thank you for accepting me....I hope the things I have learned here may help a diagnosis AT LAST !

Oh ...I could weep for joy discovering this forum and PAS!

I seem to have the same concerns and problems as so many people struggling to get a diagnosis. I won't bore you with it all but I know I am very poorly and getting worse. Amongst things that have been thrown at me over the last 3 years :

Tachycardia caused by radiotherapy damage after breast cancer (that was a cheerful one !)

MS...but reflexes OK

Hypochondriasis

Carpal tunnel syndrome

Bells Palsy

Chronic anxiety disorder

Depression

Menopausal

I am obviously v unwell with increasing breathlessness, palor, terribly unsteady, can't pee properly, neuropathy , twitching, exhausted but can't sleep, struggling with work. I am continually short of breath .I am embarrassed about going back to the Dr AGAIN. My relationship is suffering because of my mood swings and irritability. And...guess what? My dad has Pernicious Anaemia!! Why,oh why has the GP never discussed this with me? I can tick every box on the symptom list.

So after 3 years of misery and the last 3 months now of feeling as if I am teetering on the brink of death... I am heading AGAIN tomorrow to the Dr's. I'm almost too brow beaten to explain to him that maybe this is 1 thing we are looking at....not a myriad of things. Thank you for letting me join..and vent !

Here is hoping!

I cannot live like this any longer😩

4 Replies

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  • You are very welcome Jesswoozer1 please come back and let us know how you get on with the doctor as there are others on here who will be able to give you good advice.

    I've had P.A. for 45 years and I'm still "clivealive" at 75 even though it took me 13 years between gastric surgery and diagnosis.

  • Hi Jesseoozer1. Hello and a warm welcome. I'm so,sorry that you've been having such a rough time for the last three years. I'd hazard a guess and say there isn't one person in this forum who hasn't been through what you're going through - me included 😖.

    It sounds like you've been doing some reading around the forum already so it's quite difficult to know what advice you need right now.

    So...I'm thinking it might be a good idea to just let you know the tests that your GP should do for you tomorrow....in case you don't know...but excuse me if you do 😄. I'll just say a brief bit about each test in case your GP questions why you're asking for them. More could be said but perhaps that can come later, if needed.

    Serum B12: tests the level of B12 in the blood - but an imprecise way of looking at B12 deficency. You can have what a doctor refers to as 'normal' levels of B12 in the blood but still have B12 deficiency. The crucial thing is looking at test results in conjunction with the presence of symptoms.

    Intrinsic Factor (IF) antibodies: this is the standard recommended test for PA, though it's far from accurate. A positive result is always positive but 50% of tests return a false negative. So, you can test negative and still have PA.

    Full blood count (FBC): this can contain several markers which indicate the presence of B12 or other vitamin deficiencies (the large red blood cells - Macrocytosis) or iron deficiency aneamia (small red blood cells - macrocytic anaemia).

    Folate: B12 and folate work together so if folate is low or deficienct, the body cannot utilise B12 properly. So,you will need to know what your level is.

    Ferritin and vitamin D: people with PA and / or B12 deficiency often have absorption problems which cause other vitamin deficiencies - which can make you feel very ill indeed. Ferritin is another marker for iron deficency anaemia...and vitamin D is, well...vitamin D. These are two of the most common vitamin deficencies people suffer - but there are others.

    Your GP may not be aware that it's appropriate to test for these things when B12 deficiency and / or PA is suspected, so best to ask for them...and at least now you'll be able to say why you want them if your GP doesn't offer to do them.

    As I expect you're already aware, many GP's know very little about PA and / or B12 deficiency and will quite often say that blood tests are normal when they're not. Bumping along the bottom of a reference range (or indeed near the top) is not good enough for people with either of these conditions.

    It's a good idea to always get copies of your blood tests results and post them here (together with the reference ranges) so that people can help with interpretation. You're legally entitled to have these - the receptionist the surgery will usually print them out (some surgeries make a small charge to cover the cost of printing - but many don't).

    It'd be a good idea to print out the symptom checklist, highlight or tick all the symptoms that you have, and take it along to your appointment tomorrow - your 'evidence' - for starters 😄.

    And before I go, just one more thing to be aware of..if you have neurological symptoms you need to start treatment with B12 injections as soon as possible, and you need a much more intensive regime of injections, which many GP's do not know about. And you need this treatment even if your serum B12 levels appear to be in the normal range. If this applies to,you and your GP is reluctant to prescribe injections, please come back for more advice.

    It might also be a good idea to make another appointment to see your GP before you leave the surgery so that you can go through the blood tests properly (getting a result from the receptionist - who might say all is normal when it's not - is not ideal - especially as I suspect you need to get proper treatment quite quickly).

    And...before your appointment, get copies of your results so that we can advise on interpretation before your next appointment (might help to move things along more quickly).

    Don't know if you've seen them, but the PAS pinned posts to the right of this page when you log on (or at the bottom if using a phone) give lots of information about diagnostic and treatment protocols, relevant guidelines...and also information that will enable you to 'debunk' some of the odd notions that some GP's seem to have about the two conditions.

    And finally, please don't despair if things don't go as well as you'd like tomorrow. GP's receive little (if any training) about these conditions so don't always act in the most appropriate way. Don't worry if is happens to you - you've come to just the right place for help and support and there are lots of lovely people here who can help you get through this.

    And finally finally (😄)...everybody here will identify with you when you say 'I cannot live like this any longer'. We all know exactly what that feels like - me included. Please just hang on a little longer...getting the right treatment makes such a big difference....and we'll try and help you to get that.

    Please post again and let us know how you get on with your GP...once we know how it went (and what you test results are) we'll be able to leave more focused advice...and do ask as many questions as you like.

    Good luck and take care 👍

  • I cant believe how supportive this is. It feels like there is light at the end of the tunnel and a voice to add to mine. I can't thank you enough. I shall keep you posted about how I get on tomorrow!

  • You have had some excellent advice from members and I do so hope you soon find some answers and receive the treatment you deserve.

    I am wondering if you have ever had your thyroid tested - as some of the symptoms of B12 deficiency and low thyroid overlap. Also your breast cancer treatment can skew the thyroid somewhat. I have two friends who are long term survivors and both had thyroid problems after treatment. Not wishing to add to your problems but it could explain some of your symptoms.

    Often people are tested - mostly women - and are told they are * normal * - when in fact only the TSH was tested. Far more tests are required for the full story. Also normal is an opinion and not a result. Docs are so quick to say normal when they mean - in range - but it is where you are in the range that is so important.

    I have Hashimotos - auto-immune thyroid and a B12 issue and do know how difficult it can be to have both correctly diagnosed.

    Sorry to read on your other post about your difficult appointment ....

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