Downton Abbey - Christmas Finale

[helvella]

Character says he has anaemia. Pernicious anaemia. And is resigned to his fate.

Engendered some tweets (found by Google - am not a twitterer) out of ignorance, such as this:

Kat Steiner ‏@Kastrel 12 mins12 minutes ago

Wait, what? Since when has pernicious anaemia been terminal? My dad has it! He just has Vit B12 injections #DowntonAbbey

I'd have hoped that a bibliophile might know the meaning of the word "pernicious", if not a full understanding of PA. Well, on the basis of "any publicity is good publicity", probably a good snippet of story.

Also made me wonder if a script-writer or other involved person is a sufferer?

[concerneddad]

Yeah but it turned out he only had anaemia but PA prior to the B12 connection was a mortal condition..but then Downton is complete myth, that's why it's so loved in the USA

[helvella in reply to concerneddad]

I wrote my post before that came out! Still, it's not altogether a bad thing a) for PA to get a high profile airing; b) for people to be reminded that it really was a terminal condition.

[Eeyore1907]

Hi

Pernicious anaemia was actually fatal up until the early 1900's when they finally realised it was down to a b12 deficiency, however this b12 CAN actually be replaced although, yes, if left untreated it can still be fatal now xx

[helvella in reply to Eeyore1907]

That it is ever fatal in the developed world is a major failing. That people ever suffer beyond that minimal level of realising it is time for another injection is inexcusable.

[helvella in reply to helvella]

My partner's grandfather had PA on his death certificate. In the 1980s.

[Lisahelen in reply to helvella]

My dad died mid 80s, on his certificate was cerabella degeneration the last post as far as PA is concerned. I am more than convinced he went undiagnosed even after numerous tests for altz etc etc. I watched his decline and can see his early symptoms mirrored in me.

At least i can take my own health in hand, i just always feel so sorry that he died age 54!

The saddest, unfortunate thing is many, many people are still mis or undiagnosed and those who are, are still not receiving the correct treatment and have to resort to obtaining b12 from other sources.

[Eeyore1907 in reply to Lisahelen]

I'm so so so very sorry, that's really awful Hun xxx

That's very true Hun, there is, despite medical advances in treating and controlling it, many cases un or misdiagnosed and I'm so so sorry your dad was one xxx

[Eeyore1907]

I have it guys and my bloods come back so confused, including the intrinsic factor, and let's not forget, bloods don't always give the correct results. Sometimes the only way to realise and be diagnosed with such is to see if the medication resolves symptoms in your case as the bloods are so very often, inconclusive. I agree people should not be dying from this but it's not all about someone deciding they need their next injection or such like, the world of medicine and in particular, PA is a very dark and confusing one which is why so many suffer or remain undiagnosed. And the fact of the matter is that in the last 100 years you can never begin to imagine the medical advances there have been, let's think about this instance and also that penicillin was so experimental and hard to get even during the 40's war time so people used to die from what was simple infections that could have been stopped even as late as this. What I'm saying is that as a medical person AND a PA sufferer I do know and understand both sides and have spent many hours researching the whole condition and medical advances and whilst actual dying from the condition does not have to half as regular as it sadly was during the period before early 1900's, medical advances have reduced the numbers of fatalities greatly but sadly some still slip through the net. The main advantage you can have is your own research on the condition and to understand and know what your own body is telling you.

[ibtop1 in reply to Eeyore1907]

People aren't just slipping through, people are being denied the correct the treatment as genearal practitioners are not following guidelines or just common sense.

[clivealive Forum Support]

I'd already guessed from the few symptoms described what the "fatal illness" was likely to be and nudged my wife (somewhat painfully) to tell her.

My doctor told me I had only two years to live back in the early 1970s unless either I (a) ate raw liver three times a day (before or after meals I asked?) or (b) had monthly B12 injections for the rest of my life.

Unsurprisingly, much as I love liver & bacon with onions & chips I opted for the injections and 44 years on I'm still "clivealive" coming up to 75 years of age.

So there is life after P.A.

Best wishes for 2016 to all my readers

[helvella in reply to clivealive]

Good to read, Clive.

So many people who post here have difficulty in getting injections more frequently than every three months. Do you still get yours every month?

[Catherine50 in reply to helvella]

I can not get them more often.sick of arguing so now self inject weekly

[clivealive Forum Support]

I do helvella as I'm still on the original Cytamen (cyanocobamalin) 1mg injections.

I was tried on the hydroxocobamalin many years ago but had bad side effects and couldn't "last" the 3 months regime was was put back on the original.

A few years ago (having joined PAS - as I thought I was the only one in the world with P.A .- not personally knowing anyone else with it) I persuaded my doctor to "allow" me to schedule a three weekly injection when I "feel the need". He was a great "one size fits all" guy and used to laugh at me when I complained of feeling worse in the run up to the next injection but I stood up to him (I'm 6 feet 4 inches tall) and had my Rottweiler wife with me so I make and vary my own appointments rather that simply "doing what it says on the prescription"

I wish you well for the future.

[helvella in reply to clivealive]

Most excellent. Thank you and wish you well too.

[Allyson1 in reply to clivealive]

Clivealive, would you mind very much if I asked you about the hydroxo side effects you experienced? I have side from some forms of B12 and wonder quite a bit about this.

[clivealive Forum Support in reply to Allyson1]

Hi Allyson1

I cannot now remember how long ago Neo-cytamen (or hydroxocobamalin) was introduced (back in the 1980-90s?) to replace Cytamen (cyanocobamalin) and it's difficult to recall the side effects after all this time but I had blurred vision, dizziness, headaches, irregular heartbeat and pounding in my ears.

Suffice to say that at the time the differences in my reaction to the new injections were significant enough for me to be put back onto the old ones which I'm still on today (my next one being tomorrow - hooray!)

I'm no medical expert but I think it's very much a case of "horses for courses". No two people's bodies are the same so what happens with mine may not apply to anyone else - we each have to find what's best for us.

At the end of the day "putting up" with a few minor side effects is infinitely better than not having the B12 and I hope you manage to find what form it's in that suits you without too many of them.

Take care now....

[Allyson1 in reply to clivealive]

Thank you! I had similar side effects with methylcobalamin, less so with hydroxocobalamin, and virtually none with cyanocobalalmin.

[clivealive Forum Support in reply to Allyson1]

I guess no two patients are the same. I asked my nurse whilst she was giving me my injection this morning (Ah - that's better) whether she had many others with P.A. and she said plenty - but most of the were Pakistani.

I commented that 43 years ago when I was first diagnosed I didn't personally know of anyone else, nor did I until a few years ago when my brother-in-law told me he was having B12 injections. For years he (and the rest of the family) had queried what was wrong with me, why I would struggle for energy and breath in the run up to the next jab - now he understands, having the same symptoms himself.

I do recall being told early on that the nurse should "look at my eyes" when giving the injections - none ever has - and when I mentioned it this morning my nurse said she was never told to do that on the P.A. course she had attended.

It appears that i have a problem with my left retina and this was only picked up in May this year when I had my first retinography test for Type 2 diabetes diagnosed in April. I'm now wondering whether the damage was caused by the P.A. as I'm only borderline diabetic. Hey Ho!

I must remember to ask exactly what she learned next month.

[clivealive Forum Support in reply to clivealive]

Just found this article on "Hematological Disorders And the Eye"

Ocular changes in patients with anemia include conjunctival pallor and hemorrhages. Retinal changes, in particular anemic retinopathy, is a well documented complication of anemia. Common retinal findings include intraretinal hemorrhages, Roth’s spot hemorrhages, cotton-wool spots, retinal exudates, venous dilation and optic nerve pallor. The exact pathophysiology of anemic retinopathy is not clearly understood, but it seems to be related to retinal hypoxia.2 These changes generally occur in patients with severe anemia or when thrombocytopenia (abnormally low platelet count) is present.3

Note that the ocular changes for anemia are non-specific and may closely resemble other conditions, so it is important to rule out other ocular and concomitant systemic disease. In general, the ocular complications are usually reversible with correction of the anemia. Pallor of the optic nerve requires imaging studies. Still, these patients should be monitored frequently with three to six month follow-up evaluations.

[Allyson1 in reply to clivealive]

Interesting that many of her patients were Pakistani..

I hope your eyes are all right. My dr says I'm no longer anemic but my left eye has been hurting for a few months...I don't want to be a hypochondriac so I'm thinking it's my contacts.

I was prediabetic too. My labs were barely out of range, but my symptoms were full blown! Constant thirst and urination, neuropathy, pressure in my eyes. I wonder so much about the connection.

[helvella in reply to Allyson1]

We have seen that B12 deficiency is widespread in vegetarian cultures. Am wondering if the Pakistani is B12 deficiency (however severe) or "real" PA (with appropriate antibodies). Or if there a particular susceptibility to PA?

[Saya85 in reply to helvella]

Hi

I realise this post is very old but a very interesting read.

Just to advise you- most.pakistanis are not vegetarians (unlike Indians)

However the incidence of diabetes is high in South Asian patients and so often they do get b12 deficinies with Metformin use.

Given most of the nurses and doctors are clueless about b12 defiicnecy Vs PA it's likely clivelaives nurse was referring to her b12 patients as having PA when it was a defiicnecy (the nurses just schedule the injections rather than look at the notes/history). And of course indians do suffer with it because of their diet but b12 is commonly treated in India as they are aware of the link as opposed to Indian patients being treated in the UK.

However there may also be higher incidence in those demographics of PA I'm not certain. I thought it was more north European.

I used to love Downton abbey and although I had heard of PA and knew it was fatal up to the early 1900s I do remember watching it and thinking Gosh how sad that something so simple was a death sentence then.

[clivealive Forum Support in reply to Allyson1]

Some of the symptoms are similar Allyson1.

Are you being treated for diabetes? If so you should be scheduled to have your eyes scanned annually.

I hope you get sorted soon and wish you well.

[Allyson1 in reply to clivealive]

Thank you. I'm on metformin and limited carbs, and it's helped so far. I get my eyes checked soon

[clivealive Forum Support in reply to Allyson1]

Me too Allyson1 with Metformin (2 x 500mg), and diet but I feel I'm struggling a bit with exercise for the diabetes as exercise and P.A don't go together very well. I do 20-25 minutes a day on a mini bike and it's wearing me out.

I stand 6 feet 4 inches tall, weigh 12 and a half stones (down from 13 in May) and am 74 years of age - I wonder sometimes why I bother to worry about it

[19191919]

I wonder if its still fatal for some ? its not easy to spot, mine only "manifested" for my GP when I got angina; all the other stuff was put down to other illnesses I had.A few on You Tube have had narrow escapes too one a doctor himself x

[clivealive Forum Support in reply to 19191919]

It will be "fatal" if not treated 191919 and would entail a lot of unnecessary suffering.

[19191919 in reply to clivealive]

I think I was very lucky it was caught

[clivealive Forum Support in reply to 19191919]

I'd had major stomach surgery in 1959 aged 17 due to a perforated peptic ulcer but it wasn't until 1970 after two "Schillings" tests that my doctor "got to the bottom" of why I was feeling like a zombie and (I guess) by that time I was fast running out of my "reserves" of B12 due to absorption problems.

I'm now coming up to 75 years of age and I'm still "clivealive"

I wish you well

[19191919 in reply to clivealive]

You too Clivealive hope we celebrate many Christmases to come Susan x

[Lswife]

I had a sore tongue and tingling for a couple of years and guessed what the Downton Abbey character had before he said. The dr said I'd have to have a B12 injection once a month for the rest of my life which I thought was only a minor inconvenience to have a healthy life for decades. That was 25 years ago, and I'm still on the monthly injections which I give myself and take about 15 seconds.

And it runs in the family. My mother developed it, and her mother had it too. Even when I was a young girl I knew she ate liver frequently. She was also Danish, and I've read that PA is more common in people with Northern Europe heritage.

[Melbourne-Girl]

I loved your series of Downton, I think it has been loved by people all over the developed countries in the world. It is fiction, although very entertaining.

For anyone who enjoyed Downton I believe you would enjoy our revamped Australian series A place to call home. This includes landed gentry right through to some unfortunates arriving from the UK & adapting to life in Australia.

No other love is a beautiful song that has been written for part of this series and has a beautiful song called No Other Love

facebook.com/10000040192542...

I have posted the link for those if you who would like to hear the song written to a score from Chopin, it’s beautiful.

Enjoy

Melbourne-Girl

🍀🍀🍀🍀🍀🍀

[helvella in reply to Melbourne-Girl]

Your link does not work because there is no space between Love and https!