How long before diagnosis...?

[Saoirse2016]

Earlier on this year I was diagnosed [again] with a vitamin B12 deficiency. This time I felt really bad and even after injections I felt like I was dying.

I've been to the doc and she's done what she can, but we're still trying to figure out what's wrong with me...

I'm 51 [and a half!] and 30+ years ago I fell ill with very similar symptoms to my current symptoms, I was tested for a variety of things then, but all the tests came up blank so it was eventually dismissed as a psychiatric disorder (of the "hysterical female" type thing).

Anyhoo, being proactive I started Googling my symptoms and came upon Pernicious Anaemia - I read a checklist and OMGOMGOMGOMGOMGOMGOMG!!

Is it possible that I've had PA for over 30 years without diagnosis of it?

Does it have a relapse/remission cycle, cos I get symptoms on and off all the time - The Sighs, hair loss, premature greying, memory loss, balance problems, dizziness, fatigue etc, etc,...?

T.I.A.

[Lisahelen]

All i can say is, if it is, as you suspect PA long term undiagnosed it must have been a long and weary road. There are us newbies on here who think we have it bad having 'suffered' for just a few years, what it must have been like for people like yourself i hate to think!

Clive and gambit are both long termers, one got treated the other not. There are others too, so you are far from alone in the possibilities of it being PA.

I take it gp has done thyroid as well, even though as far as i can gather the ones they do arent overwhelmingly brilliant. Have you been b12 tested recently post injections, any idea what your level was before and after?

Lots of us would say that we get good and bad days, with or without the injections- ive been on here quite a bit today as i feel 'just not the ticket' and that is after having an injection on monday.

[Saoirse2016 in reply to Lisahelen]

it has been an extremely long and weary road! Every test I've had for anything came up negative...

I've had my thyroid checked several times, nothing wrong with it.

I had my B12 checked about a month ago, and it was found to be low [again -- this happened a few years ago]. so I've been getting injections for the last month and they are helping, but not as much as they did before.

I've had bloods done again since and everything seemed to be okay, but I'm going to have a word with the doctor about PA, since the symptoms fit so closely to my problems down the years.

This time last week I felt like I was dying, I had an injection on Monday and have picked up a good bit, but I still don't feel 'right'

thanks!

[Gambit62 Administrator]

The premature greying is a correlation rather than a causal link - there's a statistically significant link between premature greying and PA but no causal link has been established.

I can trace symptoms back over 40 years and was finally diagnosed as having low B12 just 3 years ago. It can take years and even decades for an absorption problem to build up to a full blown deficiency. I certainly remember periods of extreme fatigue when I was much younger that would just be dismissed. Depression and anxiety came and went - neuro symptoms varied - but they all started to snowball towards the end. Hair also thinned.

Hope that your GP is treating you properly for the deficiency. There are lots of things that can cause an absorption problem and the treatment is the same whatever the absorption problem. If you can rule out diet then it has to be absorption.

[Saoirse2016 in reply to Gambit62]

I'm hoping the doctor will pay some attention, I've been classed as a malingerer for so long it's 'impossible' to get any one to take me seriously that I feel so ill.

Of the symptoms listed here pernicious-anaemia-society...., and pernicious-anaemia-society....

I can honestly say I've never experience pica. and that's the only thing I've never experienced [from those lists]. everything else I am either suffering with now, or have done over the last 30+ years on and off, and had it blamed on other things.

[deniseinmilden]

Hi! Very interesting!

I think you are the only other person that I have seen a post from who was very ill, had a sort of semi remission period and then bang, worse than ever!

I am 44 and was totally wiped out with every symptom except tinnitus in my early 20s. I was given a diagnosis of Chronic Fatigue Syndrome and told there was nothing that could be done.

They were the days before the Internet.

Having seen sheep with persistently non-specific malaise respond brilliantly to high doses of multivitamin and mineral supplements I tried this approach and in time I improved. I gradually stopped taking the multivits but was still OK and could manage my symptoms enough to keep going.

Then a couple of years ago everything came back with a vengeance and I felt like I was dying again. When I finally got a diagnosis and treatment I improved but crashed as soon as the injections were stopped. I now do 1.5 mg in 1 ml hydroxocobalamin daily jabs and take lots of supporting supplements.

Thank you for posting. Denise

[deniseinmilden in reply to deniseinmilden]

My return to very ill coincided with starting to take the POP mini pill to control hormone related migraines. Just wondered if you have had anything like that or other medication, or ? , that may have triggered a relapse like me?

[Saoirse2016 in reply to deniseinmilden]

I don't really know what triggered a relapse, I've been slightly ill for years and years, but nothing came of it.

A few years ago I was tested for diabetes but that was clear, then a couple of years later a random blood test said I had diabetes (?!)

I was put on Glucophage which causes B12 depletion, and had to have injections. I tried to get the dc to change my meds, but she refused to - despite the fact that it was clearly making me extremely ill.

I've had several UTIs in the last 5 years and been given antibiotics, I had a very bad UTI last year (after the GP ignoring my symptoms) and it took 8 months to clear it up.

Since Christmas last year I've been feeling unwell - nothing specific, just not feeling well. I started to suffer severe fatigue, memory problems, couldn't concentrate, my hair started falling out (again), so when I went for my 3 monthly blood tests I told the nurse I was feeling rotten so she took 'extra' blood to test my thyroid etc.

Results came back, B12 and folic acid were low, there was something wrong with my liver... I start on the injections and a folic acid tablet and started to fell worse.

Coincidentally a friend of mine has T1 Diabetes and he posted on FB that he's had to go to hospital with DKA (diabetic ketoacidosis) I looked that up on line and it had similar symptoms to what I was experiencing...

I felt really really ill about 10 days ago and I went to the doc and told her I felt like I was dying, she did what tests she could, but couldn't find anything - then I remembered "this happened to me before, when I was a teenager, same symptoms, nothing showing up in tests" So I start looking online and found something about PA. Look at the symptoms, so I spoke to the doc, but she's giving me the "how dare to tell me what you think might be wrong with you" death glare.

I'm typing up a list of all the symptoms I've had over the last 30+ years for her, plus I'll ask her to look back at my medical records over the last 20 years to cross reference what I've been "whinging" about.

I'm fairly sure I gave a doc a list of everything I've ever had wrong with me (1 side of a sheet of A4) that she laughed at then put in my file...

to be continued...

[deniseinmilden in reply to Saoirse2016]

I so know what you mean: thank you very much for your reply! I'm sorry you've felt so unwell and especially that you haven't been treated with respect. Good luck.

If you'd like to you could look up my profile by double clicking on my name and see my post "My Experiences". I keep it updated (except the link to the Facebook group which gets broken again) and it has more information on sourcing supplies, etc.