Just had the worst week of my life!

[auntieb]

Hi all. I'm pretty new here, I joined a couple of months ago and I have posted once or twice but never actually introduced myself properly.

I’m 60 and I have ha PA since I was 22. Within the first few months of diagnosis I got the district nurse to train me to self-inject. I was on monthly injections back then and it made sense to be able to do it myself. I’ve always struggled with my energy levels in the last couple of weeks before my injection was due, even when monthly! But then someone (yeah who was that anyway?) decided 3 monthly was sufficient, oh and no they can’t do it themselves, too risky!

Ever since then I have had an ongoing struggle, which has gradually just got worse. This last couple of months I’ve had a lot of stress in my life, illness, with several doses of string antibiotics, and worry over some personal stuff.

I always get a bit clumsy towards the end of my 3 month cycle. But this time has been horrendous, I have dropped every single thing I have touched, some with spectacular results. I attempted to cook Christmas dinner for my parents and ended up badly scalding my wrist, and burning the fingers on my left hand several times.

Then after Boxing Day I was simply unable to stay awake! This lasted for 3 days, and even though it’s better now, I’m still sleeping around a double more time than I usually do.

My B12 isn’t due till 17th January so I rang my GP and asked if I could have an earlier apt. The conversation went like this:

Oh no, we can’t book you in early, you’d have to see a doctor!

Well can I have a doctors apt then?

Oh no, we only have emergency appts.

So, I still don’t have one and I don’t even have a normal apt for the 17th.

I have booked an apt online for the 13th but I want to be prepared for this, I know I am going to come up against a big fat no, but I want to have my injections monthly and I want to do them myself.

I have asked this before, that I be allowed to do them myself, and was told no. It’s a health & safety issue, the nurses are trained, I’m not! Even though I was actually trained by a district nurse, and even though I am trusted to inject myself with insulin 3 times a day.

So, my plan is to write a letter, because I know full well that in a 10 minute apt I am just not going to be able to get everything I want to say across. If the answer is no, I plan to go to see my local MPP, and or the local papers, maybe even national papers. I’ve had enough of living like this. I’ve had enough of not getting the help I need. I’ve just been turned down for knee replacements again because the surgeon did not believe I only smoked 15 a day. OK, I know it’s a bad habit, but did he ask me if I was prepared to give up? No, did he ask me if I was wanted my knees more than my cigarettes? No. He just sat there and said he didn’t believe me and therefore considered me a risk and was discharging me. I’ve also been told I have cancer, and have to have an operation for that. So today, I have stopped smoking, on my own, because I know I need to.

I was confused about the different types of cobalamin I was reading about, but after reading through some of the info o here I think I have that straight now.

But I’m still confused about the readings I hear you all mention. I have never been told my reading figures, never. How would I even get to know them?

Also another question I have is, as my B12 is caused by my body not producing Intrinsic Factor, would B12 patches work for me? I was thinking of them as a temporary relief for times such as now. I could order on amazon and get by Wednesday but I want to know if they’d be any good first. And which are considered the best, if any.

[greenbexy]

Sorry, I'm apologising before I start, as I am only recently diagnosed. I am particularly concerned by your treatment from the GP! From reading on previous posts on here, are you a member of the pernicious anaemia society? I'm sure someone on there could help? Others with so, so much more knowledge will reply to you. That, you can be assured of. After some of my menial problems, compared to your troubles, they always reply. It's such a wonderful site with so many caring people, will follow your post, with the hope you get some sound advice. Good luck.

[auntieb in reply to greenbexy]

Thank you. No I'm not a member yet but I do intend to join as soon as I can. Thanks for taking time out to reply, it's much appreciated x

[jade_s]

I'm so sorry to hear about your situtation. Sounds super frustrating! Sorry to hear about the cancer too. I hope you can stay smoke-free. But if not.... not sure if e-cigarettes are considered "healthy," but it was the only thing that helped me quit smoking, and I had tried every possible alternative (several times) the past decade. At least they don't have tar and all the other crap in normal cigarettes.

Anyway, since you can already self-inject, have you considered ordering some B12 and syringes/needles online to top up, while trying to sort out the more frequent injections from the GP?

I'm a big fan of going through a GP, if nothing else than to have accurate medical records (e.g. if I'm ever unable to care for myself, then at least my records will reflect my real needs), but in the meantime, I'm also a big fan of getting correct treatment while trying to sort out my GP!! I'm not a doctor, but if I were you, I'd even venture to do a set of loading doses, since your syptoms sound very definitely neurological. Personally I'd prefer to order ampoules and syringes rather than patches - but others will be able to give you better information on their effectiveness.

Dropping stuff is my trademark too 😂😂😂 Until we figure out that this was from B12 deficiency (just a few months ago), I broke tons of stuff. A while ago I broke a huge jar *full* of Nutella because it just somehow slipped out of my hands. 😢 Glasses, plates, phones, laptops, nothing was safe!

Wishing you good luck!! 💉🍀

[auntieb in reply to jade_s]

Oh well at least I'm not alone with having dropsy, lol. Dropping the Nutella was bad though, tut, tut. You have to train yourself to only pick up things you hate in these times, haha

What irritates me most is that people just label you as accident prone,, and careless. And really,,,, I'm not! Far from it. I am actually quite dextrous and careful and I can complete intricate and very detailed craft items when I feel well.

Yes I was researching injections last night (purchased online from germany) and that will probably be the way I go. Patches sound quick and convenient but I doubt they will work somehow. Thanks for taking the time to reply Jade, keep me posted on what you break next huh? At least it might make me feel better, oh and I'll share too of course, lol

Gotta keep our sense of humour don;t we?

[jade_s in reply to auntieb]

You have to train yourself to only pick up things you hate in these times, haha

Hahahah! so true, so true!

Well luckily I haven't broken anything this week but came close a few times!

Hope you're doing ok. A sense of humor definitely helps!

[auntieb in reply to jade_s]

Haha, last night I decided to sit and peel the veg fpr dinner today. I ended up with bits of cabbage and carrits all over the place, on the table, on the floor. It's such fun, not! But its beena good week, I haven't injured myself this week, yay!

[jade_s in reply to auntieb]

LOL sorry to hear that but glad you haven't injured yourself.

My coordination doesn't seem to be too bad these days, but with my shakey hands stuff still tends to fly around as well.

[clivealive Forum Support]

Hi auntieb your "story" and mine are very similar as I was diagnosed with P.A. back in 1972 13 years after gastric surgery and "put on" cyanocobamalin every four weeks. I

When hydroxocobalamin was introduced in the 1980s I had an allergic reaction to it and certainly couldn't last the three months so have continued with the cyano ever since and I'm still "clivealive" at 75.

Down through nearly 40 years I was never monitored or asked by either doctors or nurses how I was coping with my P.A. However I was beginning to notice that in the run up to my next injection I was beginning to have some of the symptoms associated with it – pins & needles, burning legs/feet, shooting pains in hands, numbness, breathlessness, tinnitus, loss of balance, back pains, fog days etc.

On Friday 16th April 2010 I joined the Pernicious Anaemia Society and posted the following: “I was diagnosed with PA back in 1972 consequent upon having had surgery for a peptic ulcer in April 1959 at the tender age of 17. In those days I was not many years from having to be put on a diet of raw liver - 3 times a day!!! Thank goodness for Cytamen 1000 mcg...... So, for nigh on 40 years I have "got by" with my 4 weekly injections - my "little shots of Red-Ex" as I call them. However when I complain to my GP that in the run up to the next jab I start to feel symptoms returning… he simply laughs, telling me (essentially) that it's "all in the mind" and that the dosage will last for a month. How can this be? This "one size fits all" syndrome that doesn't take into account size, (I'm 6'4" @ 13.5 stones) age, activity or metabolism. I cannot believe that I am the only person with PA who experiences this feeling of exhaustion in the run up to the next shot - or am I?”

I was astounded at how many “fellow sufferers” there were “out there” who experienced the same thing and so for the last six years I’ve been learning more about the condition.

Eventually I managed to persuade my GP to "allow" me an occasional three week injection and last year took advantage of his being away on holiday to change doctor within the practice to discuss my (new) diabetes blood test results, mentioned my B12 problems and after a bit of umming and ahing she has now to let me have three weekly injections permanently.

So, it's been a long struggle but I consider it a battle won in this long war to "educate" doctors to treat the patient's symptoms rather than just applying the "do what it says on the tin" attitude.

With your P.A. diagnosis you should, at the very least, be on two monthly injections per the BNF Guidelines as in the highlighted paragraph below,

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment "

You could try the "B12 Boost" spray in the interim available on-line or from larger pharmacies. Also, you need to have a good level of Folate (B9 or folic acid) in order to process the B12.

I do hope that you will be able to get your doctor to "see sense" and prescribe the treatment you need and wish you well with all your other medical problems.

[auntieb in reply to clivealive]

Hi clivealive, thank you so much for sharing your story. I thought it was just me who was totally ignorant about test results, all these numbers mean nothing to me. I just KNOW when I need my injection. And yes, the lack of individual patient care is really beginning to rile me. To be fair, I have only so far asked about being allowed to self inject and that was a big NO. But I intend to take the whole thing up with one of the GP's personally and we will see how it goes. But yes I will take it to the media and MP's if necessary. I'd love to know whose ultimatee decision it was to set 3 monthly as the NHS guideline. Someone who doesn't have PA no doubt!! I'll be sure to let you all know how that goes. At the minute I am just fighting to stay awake long enough to do anything

[clivealive Forum Support in reply to auntieb]

I "lived" for nearly 40 years in complete ignorance and believe me - ignorance is not bliss.

Fight the good fight.....!

[auntieb in reply to clivealive]

Yes, I am slowly begining to realise this. i think the oly reason I have gitten so far in ignorance is because I was younger and enjoyed reasonnably good heath. Now though, with everything else going on, it's hitting me hard

[Gambit62 Administrator]

definitely write to your GP - but also share the letter with the PAS if you are a member - as they may be able to help you - they also have an in house nurse who can advise.

If you have a diary of symptoms and when they return then that would be a good thing to take with you as supporting evidence.

Measuring B12 isn't like measuring blood sugars for your diabetes. Once you are on B12 results of serum B12 won't mean anything unless they come back low - meaning that you definitely need more B12. If they are high that doesn't mean you are okay and don't need any B12. Guidelines are not to go for continual monitoring of B12 levels because it isn't a cost effective way of looking at things and managing B12 levels - symptoms are much more appropriate.

You could ask for an MMA test - MMA would be high if your cells don't have enough B12 and would be evidence that you need more B12 - and it is possible to have high serum B12 levels in your blood and yet be deficient at the cell level - this is called functional B12 deficiency.

The idea behind the skin patches is that the B12 is absorbed through the skin rather than in the gut so PA doesn't make a difference - but that doesn't mean that they will work for you. Very high dose sublinguals and nasal sprays are other options. All you can really do is try them and see if it makes a difference. Even high doses orally can work for some people because a small amount of B12 is actually absorbed outside the ileum so if you put enough B12 in then, in theory, enough could get through into your blood etc that way.

Sorry you have got caught up in the 3 month nonsense. You could point out that your symptoms include neurological symptoms - eg the dropping everything - so recommendation would be 2 monthly but that still leaves you feeling awful for 6 weeks.

[auntieb in reply to Gambit62]

Hi Gambit62, thank you so much for taking the time to reply and for your very useful information. It all helps, being more knowledgeable when I tackle the gp has got to help my case. I will definitely be joing the PA society. There is lots of useful stuff on there. To say I've had PA for 38 years and I'm only just finding out this help exists at all is amazing.

[Hidden]

Are you registered at a practice in England. If so you can get to see some parts of your medical records online, and that includes test results. You can then look up what your levels mean and others on this site can help you to interpret those results.

Look up on NHS/ GP services/online services.

You can register at the practice and get a password. If you get repeat prescriptions online and make appts already you just ask for access to your records. Some GPs are a bit reluctant but you are entitled to this.

Good luck

[auntieb in reply to Hidden]

Hi chris193

Thanks for your reply, it was very interesting because I am indeed registered at a Uk practice and I already have access to request repeat prescriiptions and book (some) appointments online. Tere is even a link which says voew my medical records However when I look at that it is just a list of repeat prescriotions I have had. Nothing useful there at all. So are you saying that I can request (in writing I presume) to have my test results and other information made available to me there also?

On another note I don't know if I ever even have my B12 levels tested. There is never any mention of it. Many years ago it was done at 12 month intervals and usually when I requested it. But I was once told that it was done automatically when I have my other bloods done at my diabetic review. That's it, as far as I know.

Having said that, it seems from what I've been reading on here that it's a waste of time anyway since test results are useless if you are recieving treatments or supplements. I know how I feel, I know how long the B12 I take lasts, approximately 2 weeks. That's it, then it's a rapid decline.

I have noticed also that if I am under a great deal of stress or I don't get a good enough sleep straight after the injection, the benefits can often be much quicker to disappear.

[Hidden]

You probably are looking at your Summary Care Record which does only have medication, allergies etc. What you can ask for is what is called coded information. It isn't very patient friendly, but does have test results and appts, referrals, basic info on what has been happening. When I have a blood test I can see the results the next day or day after that. You are entitled to have access to it under the Patient Online Programme, but it has to be switched on at the practice, so you have to ask for it. No need to write letters. Some practices are still a bit reluctant to turn it on, but you have a number of long term conditions , such as diabetes, and it can be helpful to be able to look at test results, rather than having to ring the surgery, and you can find out what it means.

B12 testing is not done during ordinary blood tests but has to be asked for by the practice, and you are right that it is affected by injections and supplements. Others who have replied know more about that than me.

I hope you can things sorted with your gp. Write down each problem and what you want to happen. They will have to put it on your records. Good luck

[auntieb]

Thank you so much. Yes I am trying to be fair and remember that although I have asked to be able to self inject before and got a NO. I haven't yet asked for more frequent treatment. So I want to give them te opportunity. The trouble is when I am down like I am now, I am not very rational and I cry a lot. So yes it would benefit me to write it all down and give them the chance to respond. What I then need to do is question those responses if they are not what I want to happen. You;ve been very helpful, thank you