Jessica`s story

Post your experiences of Pernicious Anaemia here. No two people with PA are the same, and sharing your experiences and reading others' may help you through this.

Moderators: Missy, hampster, martyn, coryad, BeeNumber12, kimks mom, Vix, AndreaM, japatchett

Jessica`s story

Postby jessica.lennon » Wed Jan 01, 2014 9:29 am

Hi Jessica here,

I`m also having problems with B12 treatments from my doctor. I have had phases of feeling unwwell, aches and pains etc for a period of years and went to the docs sporadically - got tested for arthritis ( first visit for tiredness and aches and pains) and also depression ( a period where I was mentally confused / struggling to remember stuff) and had an ECG ( heart flutters and chest pains) - but basically the opinion was that my tiredness, aches etc was due to leading a busy life. Finally, in the Summer of 2013, I went back to the docs as things had got worse - I was struggling to sleep due to aches and pains, joint stiffness, had shooting pains as well, tiredness, headaches, cramp etc , and I had a B12 test and had a level of 71 - thankfully this was so decisive that doc put me on a course of five injections, and said I could have three monthly injections after that. At this stage I had just started to get numbness in my feet which I hadn`t even thought of as a symptom. After a short while I felt amazing - i.e. normal. I had a great summer, had a camping holiday, took long walks and even did a bit of jogging. Then about 6 weeks after the last injection I started to feel unwell - thought I was coming down with a cold. When the cold didn`t materialise I went back to the docs and had another B12 test - it came back as 700. She did however agree to give me another injection as it was almost 3 months after the last one. I went back about two weeks later as it hadn`t helped and she agreed to let me have another one - again I still felt very tired although not as bad as before the loading doses. Anyway this time she would not give me a further injection but sent me for another blood test - the B12 level was 2000. I then decided to get myself some Methyl B12 tablets and started taking them daily - again this has kept me going but still getting very tired at the end of the week. I have spoken to the doc again and am due to have a further blood test before she will consider any further injections - I have stopped taking the methyl tablets as I don`t want them to influence the test result but am now feeling low again. She is now saying that she thinks I may need further tests to find out if I have any other conditions that may be causing the symptoms.

I feel fortunate as my symptoms are not severe and I still manage daily life - I get through to Friday and spend the weekend recovering. But it is so frustrating to have been given a treatment which removed all my symptoms and then to have it withheld and see those symptoms returning. I`m sure lots of you feel the same way. I`m really not sure what to do next - I`m thinking about self injecting but not sure about how much and how often. I`m also very concerned about the neuro implications of this condition as I feel my brain functioning may have been impaired but as I have been feeling unwell for so long it is hard to figure. One example - I have to type a lot in my job - I`m only a two finger typist but have noticed recently more and more errors - I seem unable to hit the right keys. Don`t know if there is any way of testing this. I am planning when I see the doc after this next blood test to take the Scottish Petition with me and a list of all symptoms, as I don`t think they are noted on my medical records - I am also going to ask for an explanation of blood test results - the doc gave me them but I can`t understand them. This site has been such a help - it is so great to be able to share information - I have learnt an awful lot and have recognised some of my symptoms from reading other peoples accounts. Anyhow, have written far more than I meant to - any help and advice appreciated.
jessica.lennon
 
Posts: 25
Joined: Sat Nov 02, 2013 11:12 am
Location: England

Re: Jessica`s story

Postby Vix » Wed Jan 01, 2014 11:06 am

Hi Jessica and welcome
I'm sorry to hear you are having to go through this. How many stories like this will there be before the medical profession wakes up and realises what is happening?

It sounds like you have a great plan of action and it is brilliant that you are trying to get this sorted now while you are still well enough.

You don't mention folate and ferritin, were these at OK levels? These two things especially are very important in their own right but also in order to be able to get the most out of your B12. Many of us have to be on some level of folate permanently especially on more regular injections.

Get hold of copies of your blood test results and post them here if you like as well as asking your doctor about it. I know it sounds ridiculous but some doctors don't actually understand what the blood test results mean themselves, (mine didn't understand that a high MCH suggested a b12 or folate deficiency, he told me it would be low which is just totally incorrect!)

It is a great idea to take the Scottish Parliament petition with you (maybe post in advance so the doctor has a chance to read it before your appointment) and a list of symptoms. Do you have a diary to show how the symptoms worsen and improve in line with the injections or maybe even someone who can explain the difference in you? Some doctors do change their minds when encouraged to look at the evidence and this is always the best route if possible.

If this fails it is great that you are thinking about self injecting. This is a great way to treat your individual needs very easily. In terms of frequency etc this is very individual but I always think going back to loading doses until you feel no further improvement in your symptoms and then slowly increasing the gap is the best way to do it. Then if you are going through a period of stress or illness you can adjust as you need to. If you decide to go down this path we can help you in more detail as there are a few different ways to do it, so do let us know.
Vx
Vix
 
Posts: 1206
Joined: Sat Jun 25, 2011 1:46 pm
Location: England

Re: Jessica`s story

Postby lozza » Wed Jan 01, 2014 6:09 pm

Hi Jessica,

Just wanted to say welcome to the forum, the others have given good advice regarding blood tests for iron and folate,you might also want to ask them to check Vit d thyroid etc. Sounds like you are in early days of treatment and your Doctor is willing to do further blood test which is good. I have been having b12 for 4 years started with loading dosages, than 1 injection every 12 weeks, did point out that there are some months with more days in, than went to 10 weeks, than 9 weeks duration, now am back to 12 weeks, due to GP practice not wanting to pay for b12 any sooner. So what i am saying duration do change, perhaps ask could you do a trial period less than 12 weeks and see how you go.

Yes it is difficult managing this condition, i go to work and am also tired at weekend and need to recover- we call this lifestyle" duvet days" i am sure other members will be able to tell you about these.

keep us posted

best wishes

Lozza :sunny:
lozza
 
Posts: 585
Joined: Wed Sep 29, 2010 5:26 pm
Location: United Kingdom

Re: Jessica`s story

Postby jessica.lennon » Wed Jan 01, 2014 6:19 pm

V Andrea and Lozza - Thanks so much for your replies and helpful comments - Will ask doc about blood test results and thanks for offering to help decipher them - I`ve got a printout but it`s gobbledegook - and no ref ranges, which I gather are important! Would love to know what causes this maloabsorption as I have been tested for intrinsic factor and have no gastric diseases etc - but for the meantime just like everybody else, want to get treated so I can get on with my life! Anyhow, take care....Thanks....J
jessica.lennon
 
Posts: 25
Joined: Sat Nov 02, 2013 11:12 am
Location: England

Re: Jessica`s story

Postby kimks mom » Wed Jan 01, 2014 6:51 pm

Hi Jessica and welcome,

Some of our members have not been able to find out a cause of their B12 deficiency. At the link below are some causes aside from pernicious anaemia:
viewtopic.php?f=2&t=11027

When you do get a copy of your test results, as you mentioned in your post, make sure the copy includes reference ranges because this gives a clearer picture of the test results.

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
kimks mom
 
Posts: 5760
Joined: Thu Jan 01, 1970 12:00 am
Location: GTA, Ontario Canada

Re: Jessica`s story

Postby jessica.lennon » Thu Jan 02, 2014 7:18 am

Thanks Pat - will ask the doc for the ranges.
jessica.lennon
 
Posts: 25
Joined: Sat Nov 02, 2013 11:12 am
Location: England

Re: Jessica`s story

Postby terencepw » Fri Jan 03, 2014 9:22 am

Hi Jessica,

You've come to the right place - I was diagnosed with PA a few months ago and this forum has been hugely helpful. My Doctor certainly wasn't and I kept being told that because my levels were 'ok' I didn't need any more injections (I'd had loading doses at this stage) for a good few weeks.

I still felt ill though, so,I took the advice from some members of this forum and learnt to inject myself, and it's not only easy (on the outside of the thigh and doesn't hurt at all) but the best thing ever! It's put me in charge of this part of my health. In my case, I needed A LOT of daily injections (15) before I started to feel well pretty much all the time, after which I gradually decreased frequency. Currently, I'm doing every third day. I use Cyanocobalamin because the usual Hydroxocobalamin just doesn't seem to work for me, for some reason - if it did, I might not have needed so many or so frequent doses at the beginning.

Anyway, don't despair! Get the balance of folate, ferritin and B12 right and your life will be fine! I'm 72 and now I'm injecting myself I'm back to my usual 60 hour week as a writer and teacher and feeling 'normal' all the time - and the good people on this forum helped me get there, just as they will you!

Terence
Last edited by terencepw on Fri Jan 03, 2014 11:16 am, edited 1 time in total.
terencepw
 
Posts: 126
Joined: Fri Sep 13, 2013 5:18 pm
Location: England

Re: Jessica`s story

Postby hampster » Fri Jan 03, 2014 10:59 am

Just popping in to say hello Jessica :greetings-waveyellow:
hampster
 
Posts: 260
Joined: Tue Mar 05, 2013 1:49 pm
Location: England

Re: Jessica`s story

Postby BeeNumber12 » Fri Jan 03, 2014 5:50 pm

Welcome to the PAS forum!
You could be one who has been deficient yet untreated for years ! The amount of b12in our blood is not the level in four cell structure. You are correct to be concerned about your neuro symptoms. I suggest you make a careful and complete list do these. The BNF guide states neuro problems be treated with injections every other day until you have no further improvement. You can always consider doing your own injections this way. Take your folate, monitor potassium levels,take b supplement of eight vitamins.
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
BeeNumber12
 
Posts: 2939
Joined: Thu Dec 24, 2009 11:52 pm
Location: U.S.A.

Re: Jessica`s story

Postby jessica.lennon » Sun Jan 05, 2014 9:34 am

Hi there,

Good to hear from you Terence - I`m so glad you found a solution - I think I may be going down the same route myself. I`m due to see the doc on Thursday to discuss blood test and when I can have an injection, but it has already been made clear that 3 monthly is what I`m going to get!. I`m just so glad that the loading doses I was given originally gave such a decisive result otherwise I wouldn`t be determined to fight for the treatment. I found all symptoms vanished - even some I hadn`t put down to B12 deficiency! - did have a bit of residual aching/tingling in legs and arms - like when you`re very tired - if I`m honest, but the main thing was being able to do things and feeling energised afterwards rather than wiped out. It`s great to hear a positive story with a good outcome - and very reassuring that you found the injections hassle free. Hope you continue to feel better.
jessica.lennon
 
Posts: 25
Joined: Sat Nov 02, 2013 11:12 am
Location: England

Re: Jessica`s story

Postby jessica.lennon » Sun Jan 05, 2014 9:38 am

Hi Dorothy - thanks for your comments - very useful advice. I`m not sure what counts as `neuro` symptoms, but have tried to think of `everything` that I`ve noticed in the last year or so - also was surprised at what a long list it was! Many thanks again, and thanks to all for the warm welcome. Jessica
jessica.lennon
 
Posts: 25
Joined: Sat Nov 02, 2013 11:12 am
Location: England

Re: Jessica`s story

Postby jessica.lennon » Sun Jan 05, 2014 7:42 pm

Thanks Andrea - that helps a lot. Jessica...
jessica.lennon
 
Posts: 25
Joined: Sat Nov 02, 2013 11:12 am
Location: England

Re: Jessica`s story

Postby coryad » Sun Jan 05, 2014 10:56 pm

Hi Jessica! Popping in to say hello and welcome, so glad you found us :) Lots of helpful info here.
coryad
 
Posts: 858
Joined: Thu Jan 01, 1970 12:00 am
Location: CT, USA

Re: Jessica`s story

Postby jessica.lennon » Mon Jan 06, 2014 1:17 pm

Thanks Cory - I`m so pleased to have found this site too, it`s sooo helpful !!
jessica.lennon
 
Posts: 25
Joined: Sat Nov 02, 2013 11:12 am
Location: England

Re: Jessica`s story

Postby jessica.lennon » Wed Jan 15, 2014 11:08 pm

Saw the doc on Thursday - he said he might consider two monthly injections but wanted to do another blood test before and also check my kidneys as the reading on the previous test was a bit high - so back to square one for the moment. I am taking the Jarrow methyl tablest and they are helping me to keep going - they do make a difference. I really noticed when I stopped them temporarily. But am beginning to think I will need to self inject - can anyone advise which type of B12 I would need to order? It seems really strange that the tablets are not enough as they are quite a high dose and from what I have read the methyl type is easy to absorb. Anyway, it was a bit demoralising but I still think the B12, if dosed properly will solve the problem. Just need to figure out which method to use - I believe you can inject into the fatty tissue like you do with insulin. But haven`t figured out the pros and cons yet.
jessica.lennon
 
Posts: 25
Joined: Sat Nov 02, 2013 11:12 am
Location: England

Next

Return to My Story

Who is online

Users browsing this forum: No registered users and 15 guests