b12 Deficiency HELP! !!

Hi Heather thank you for replying.

Ive felt absolutely dreadful. It's made me not recognise myself any more and be so worried I was loosing my mind so great to get somewhere finally.

I have had a lot of pins and needle type feelings in my arms and legs for months this seemed to be what spered them into doing more tests. I have forgotten full conversations, seeing people and things that have happened that were quite important. I put it down to how tired I was feeling and even tried to blame it on drinking just 2 ciders 1 time. Are these common symptoms?x

Yes they are common symptoms of neurological b12 deficiency. You should receive alternate day loading injections until no further neurological improvement then injections every 8 weeks. Ensure your folate is in the high end of normal as b12 uses folate to metabolise into your cells. Ferritin (iron store) should be mid range too. When the b12 enters your cells your body will use iron when producing new blood cells. Also take a b complex each day to keep other b vitamins at good levels because they can lower due to your low b12. 

Ps. I sent you a personal message xx

hello PA supporters:

from expereince, i wonder if anyone could say: roughly how long post commencement of the b12 injections should one begin to experience improvements?

i understand many variables such as levels of depletion etc. will impact.

with thanks

Caitlin.

Hi Caitlin,

This is like a "how long is a piece of string" question! Everyone will be different, and some of us who have been deficient for a long time will never see much of an improvement. This is because some nerve damage becomes permanent if it's left too long. Generally speaking, I would expect to see some changes after three to six months. Your GP will probably want to do another blood test around three months after your loading doses. Just to see how well you've retained some B12, compared to your levels prior to the injections. Sorry I can't be more help than that. My loading doses were in late Feb/early March, and I'm still struggling with some symptoms, although some things are better. Less tired for example. Good luck with everything Marion 

thanks marion, that helpful. it helps put the ''magic bullet'' expectations in perspective. btw, do u know if there's any way of knowing how long the depletion might have been extant?

with thanks

Caitlin

Hi again Caitlin,

It's hard to be sure how long you've been deficient, because it's a gradual decline. When everything operates correctly the stores of B12 in the liver are constantly being topped up. When it all goes wrong we continue to use what we had stored, until it runs out or runs low enough that we get symptoms.

Because the symptoms can be hard to notice at first ( increased tiredness), we try and explain things to ourselves. For example, I was coping with tiredness, aches and pains in muscles and joints, and putting it down to ageing. Someone younger, who is out on the town a lot might just think they've been overdoing things a bit. A young mum could be having broken nights with a baby. We don't actually see a Doctor, until things have got pretty bad. So maybe we've lived with a gradual loss for three years or more before we see the Doctor. Then he might say we're just a bit run down, and come back in a month if we don't feel better? We often get other diagnoses until they eventually hit on the low B12. I'm guessing we could have had this gradually worsening situation for four or five years. The gentleman who wrote Pernicious Anaemia the Forgotten Disease was actually at the stage of collapsing in the street before his was picked up! Scary isn't it? Do hope things go well for you. Marion

Hi Marion,  Thank you for explaining how things develop in such easy-to-understand terms.  I'm sure this is what has happened to me.  I have mild PA, my menopause is late.  I've been describing my symptoms to doctors of many years.  They gave me iron (which wouldn't have helped much without B12) and I've plodded on.  Finally, my stored iron was depleted and I reached rock bottom.  All I need is lots of B12 jabs, some iron, and I'll be fine.  Why my GPs have made such a drama out of it, I'll never know.  I had a gastroscopy 2 days ago.  It was not the simple, painless proceedure I'd expected.  It was frightening and painful.

And they found nothing - which was exactly what I expected.  This whole saga is being driven by my GPs reluctance to permit more frequent B12 jabs which would solve the problem - cheaply, safely and easily - in no time at all.  Baffling.

Hi Bluemaran,

so sorry to hear what you have been going through. For some strange reason doctors are very reluctant to believe B12 deficiency can cause so many different symptoms. They seem to want to investigate so many other things, I too, went through a ghastly colonoscopy! An experience I never want to repeat. The sedative didn't take effect until the whole thing was almost over. Gave me nightmares for ages afterwards. I'm currently having rheumatology appointments because one GP at my surgery disagrees that my symptoms are due to B12 deficiency. We'll see how that pans out! Hope things improve for you soon. At least on here people do understand what we're going through. Marion

thank u for that marion. it explains the insidious & stealth like nature of the condition & how it can ruin lives.

it makes me wonder why it's not an obligatory 'health check' at certain points in people's lives i.e. 40/50's MOT's, annual post natal checks for new mums, those complaining of uncharacteristic tiredness, menopausal fems & for those on precipitating medications etc. that old cliche of 'awareness raising' comes to mind. maybe instead of incenticizing Docs to do their work properly i.e. £55 for diagnosing damentia, perhaps if they were fined for not diagnosing b12 early enough they may pay more attention.

hope u continue to make progress marion, albeit more slowly than you'd like.

with thanks

Caitlin

hi marion. just read your last msg. what can one say re the colonoscopy experience - it shouldn't have been like that. needless to say they should have thoroughly checked that the sedative was acting before they progressed with the colon/os procedure. guess it's another one of those ''one size fits all' approaches i.e. the reductionist , mechanistic medical thinking, that all bodies respond in the same manner, at the same speed and to the same degree?

when you mentioned the GP was looking at other potential or/and contributory causes for your symptoms in the rheumatology area, i was wondering if he was connecting some possible dots, i.e. that if there was an autoimmune response in one organ/system -PA , the autoimmune response may have a more widespread expression i.e. a 'rheumatological' expression - just a thought. what do u think?

with thanks

Caitlin

hi bluemaran. so sorry to hear that the gast/os wasn't a painless procedure. reading both marion's & your experience, one wonders re the application of the 'technique' in both procedures. if done sensitively & correctly, it shouldn't be much more than v. uncomfortable at the worst. i had both done (one go) without sedation & yes it was uncomfortable but not beyond pain tolerance. the 'technicians' were, however, v sensitive & worked at my speed, checking with me as they proceeded. i did have a peptic ulcer, but unfortunately my body doesn't do antibiotics v well. hope you're now recovered from it & with a bit of luck, perhaps your GP will just prescribe b12 according to your body's needs rather than outmoded protocols. can't help feeling your GP is on some kind of 'control' trip. have you thought of accessing your own supply of b12 ?

I suspect that as patients become more proactive (using the internet to understand their own condition) the God-like status doctors have enjoyed for generations is being stripped away and their fallability exposed.  They don't like this, and are hostile to patients actually discussing their symptoms and treatment with them at their own level.  It also means they can get away with fewer mistakes...............

I felt that the gastro proceedure was done at a forced pace. I'm not a nervous patient, being down to earth and rational.  But I found it impossible to "swallow" with a tube in my throat and my mouth wedged open by a rigid gag, so the probe was forced in painfully while saliva poured into the back of my throat.  Understandably, I started to gag and retch violently, then to try to stop the proceedure because I felt I might choke or drown and die.  Frankly, the experience has left me reluctant to have the endo for which I am now scheduled, even though it's a valuable precaution.  I've postponed the proceedure, until after I will have received further blood test results - which makes good sense anyway.  If I find these are significantly improved from the last set, I'll cancel it and take my chances.

PHEW..................... that experience sounds like something out of the 'dark ages'. sounds horrific. hope, as a consequence, your psyche isn't irreparably damaged in respect of medical procedures????? i can resonate with what you say. i had similar episodes during the procedure, but much LESS marked as the technicians readily responded to my 'slow down' ques & that worked well.

re your first para., yes, i wholeheartedly agree with patient empowerment through self-(medical) education & health/well-being responsibility. unfortunately, however, i have seen an eroding of this empowerment phenomenon since the latest reorganisation in the NHS. the power balance seems back in the (medical) GP arena. the 'balance sheet' seems to determine the quality of care........sadly? i don't see that changing over night, unless there's a counter NHS reorganisation come 2015?????

Yes, I think they could have taken it slower for me and avoided the problems.

 

Spending is definitely an issue, but someone was on TV in the past day or two, saying GPs need to be less wasteful.  I agree. 

So far, in my B12 investigations, I've side-stepped HRT, an unnecessary chest x-ray and an ECG.  I've brought forward and intensified my B12 jabs (which seem to be fixing the problem) and purchased my iron tablets privately cheaper than the prescription charge.  A blood test was mucked up and had to be repeated.  I've attended at least two wasted GP appointments where vital test results had not arrived, so nothing could be decided.  My initial specialist appointment was set too early for me to have had time to respond to the jabs and tabs I was receiving.  I've had a gastroscopy before my test results were in to show whether I needed one, and I'm scheduled for an endo I probably don't need.  Notes recorded by my specialist in a letter are factually incorrect.  My GPs test for PA showed negative.  My specialist's test showed positive, but nobody knew because, until I chased the result up myself, my specialist hadn't spotted the positive reading or reported it to my GP!   

And my GP seems miffed that I'm not menopausal at 58.  Of course I'm not!   We have babies in our 40s, retire in our 70s and live to 100 - so why wouldn't menopause be later too?  It's not an ILLNESS.

GPs are busy people, dealing with life and death situations.  They used to manage their patients treatment more individually.  Now they seem to just throw proceedures at patients, just to get through the daily case load.  They don't read patient notes before an appointment, and don't manage treatment efficiently afterwards.  This leads to delay in administering the best treatment, which can be deadly - and waste.

Vital resources get squandered and funding is short for really sick people who desperately need it.

There, I've got that off my chest!

I'd lay money that when all this is over, we will find that all I need is the more frequent B12 jabs I've had to fight for.  Cheap as chips! 

Oh, gimme the needle and I'll do it myself........................ : )

I also read recently that patients are afraid to complain about GPs or NHS treatment for fear they'll be de-listed and get worse treatment with the next GP.    Too true.  For my own part, I've not complained, but I can tell I make them very uneasy.  Why?  Because I'm taking a lively interest in my own health - and they can't handle that. 

 

the only thing i could add to that list is: .........and ''because you take a lively interest in your health'' i.e. you're INFORMED & therefore ur GP and/or her knowledge (or lack thereof ) feels threatened.

yes, the problem lies with WILLFUL WASTE - product of abysmal management & focus in the wrong areas & not least the failure to LISTEN to the client/patient as u have clearly demonstrated by your own travails through the system. your experience is an example of the cost of the system's inefficiencies - not to mention your time away from your work/responsibilities etc. if measured in £. it seems all you need is a few more jabs a month. so much for 'personalised medicine'????

when one multiplies your experience/expense by (potentially) 60 million odd. add on the PFI fiasco, throw in the £100 an hour GP's (London rates) for phone answering to give the impression of a 24 hr GP service, one begins to understand where the bulk of the NHS budget goes.........nuff said????

i do hope that you get those extra jabs and that you don't have to submit to anymore unnecessary indignities compliments of your GP's directives ???

Hi Caitlin,

Many thanks for your reply, I think probably all my issues are autoimmune related. Underactive thyroid, asthma, pernicious anaemia, and now fibromyalgia (possibly?). I will see how things go on my rheumatology apointment, it was an hour and a half wait last time, and by the time I got in to see the consultant, everything I'd wanted to say had gone from my mind! All I wanted to do was get out and go home!

I have been following bluemaran aswell, she seems to be finding the same as me. Doctor's are not happy to talk to you if they feel you are "informed" about your own illness. Especially with B12 deficiency, as it is something they know very little about. I feel we are the tip of the iceberg, how many are there who remain undiagnosed, because Doctor's are just not primed to look for it?

Best wishes to you and to bluemaran, let's hope things improve for us all! Marion 

hi marion. thumbs up to you for managing that onslought of autoimmune (AI) responses so stocially. i guess if the initial AI response is not diagnosed, addressed & the body supported through it, another organ/system becomes involved. AI tends to have that pattern of expression. at least you're being thoroughly tested. perhaps through a process of elimination, they'll eventually be able to address the key source more effectively. hope the b12 continues to be helpful & that you don't have to do the 'waiting' at the next appt. i find that bringing someone along often dilutes the 'power dynamic' in the consulting room, helps the morale & helps with keeping the salient point clear/fresh in the mind/brain. all good wishes with you on the next appnt.

Hi Caitlin,

many thanks for your good wishes, I will report back on here after my next rheumatology appointment. I am thinking about paying privately to see an endocrinologist too. Really just to go back to the first diagnosis (thyroid), to see if anything needs changing on that treatment. It seems a few people have found that their medication has needed to be altered after several years after diagnosis. Best wishes Marion

thanks marion. it'll be good to know how it goes. think it's a bril idea to have a private consult & not waste any more time waiting. i'm sure you're aware of the T4/T3 conversion problem.

the following was helpful for me:

''hypothyroidism, often a knock -on effect of a general suppression of the hypothalmic-pituitary-adrenal axis (HPA) that is, the coordinated functioning of these 3 glands. the thyroid gland can be underactive for for 3 reasons:

1)the gland itself fails (primary thyroid failure) or the pituitary gland which drives the thyroid gland into action underfunctions or there is failure to convert inactive thyroxine -T4 to it's active form T3. the symptoms of these 3 problems are the same , but blood tests show different paterns:

thyroid continued:

1) in primary thyroid failure , blood tests show high levels of thyroid stimulating hormone (TSH) & low levels of T4 & T3.

2)in pituitary failure, blood tests show low levels of TSH,T4 &T3.

3)if there is a ''conversion'' problem TSH & T4 maybe normal, but T3 is low

4)and of course there's the perennial problem of what's ''normal'' for each person & the so called T4 normal being set too low.

all good luck with both appointments.

C

Caitlin.

Hi Caitlin,

my diagnosis was number one on your list, very high levels of TSH. It was described to me as though my foot was fully depressing the accelerator pedal, just to keep me moving at normal speed! Will let you know how things go.

Marion