Advice required for very frightened PA newbie :-)

[Kerifield]

Hi,

Firstly I'd like to say what a relief it is to have found this website. I have been going out of my mind with worry since my symptoms of B12 def started to become clinical and then after the immediate high of finally being diagnosed, I have crashed even lower as the treatment from my doc doesn't seem to be working, and I fact I feel worse daily now, and have real fears for my health.

My problems started about August 2012, when the fingers on my right hand began to feel numb and I started to feel unnaturally tired and lethargic all the time, even after 12 hrs sleep I felt the same. I also felt short-tempered, stressed, breathless, and generally off my game but put it down to hitting 40's, long commute, stressful busy job, smoking, blah, etc. By Xmas, my whole right arm then felt very sore, bruised, tender, the muscles ached, my fingers were crampy and stiff, and becoming number and I found it difficult to type (I work in IT). Around 2 mths later the same problem began in my left hand and arm. The only issue i could think of was a fall back in july 2012 when i had hurt my arm, although it was my right wrist that i had hurt, but I went to my doctor to check it out, who referred me onto neurology who assessed I had a trapped ulnar nerve in both elbows and recommended surgery.

The neurologist at the time thought it strange that it was in both arms and that my whole hand was numb and not just pinky and thumb. Anyway I waited for things to develop along that route and eventually went to hospital for a pre op exam in may, where they failed me due to high blood pressure, which had been normal the year prior.

I then woke up one day feeling totally numb from belly button down, can't hold my bladder, and my hands are now so bad I can't do anything - even this touch screen is hard.

My doc put me on lisinopril 5mg daily for that, I also have been taking venlafaxine for anxiety since 2003, without any adverse side effects that I am aware of. He also sent me to hospital for blood tests which came back showing I am b12 deficient, so I had 5 loading shots of b12 1 ampule every 2 days, about 3-4 weeks ago and no better, I'm getting worse each day, can't walk, no balance, keep falling over, bad bad brain fog, depressed,muscles aching so badly, no appetite, exhausted but becoming insomniac, I feel like I'm dying, is that normal?

Sorry getting foggy now , I wanted to post my blood results, could anyone advise if I do please. Thanks for being there xxx

[Kerifield]

Second wind lol, I really wanted to add a bit more...

My b12 was168 and I'm concerned that my serum folate test result reads - haemolysed - which means I don't have a reading, the treatment seems to need to combine both.

I also have very sore gums and very bloated tummy-ibs symptoms. I feel like I have had his def for a long time now, and don't feel like jabs are helping. I have ordered some b12 patches and spray too, I'm desperate to feel better, I don't feel like I can cope anymore, but you have to ey xxx

[Hidden]

Hi Kerifield,

I'm going to jump right in and say you are not getting the right treatment for your B12 deficiency at the moment and that is probably why you are feeling no better. The British National Formulary (BNF), which contains prescribing information for doctors, states that for B12 deficiency with neurological involvement (which you most certainly have), you should have an injection every other day until no further improvement. Here is a link showing this information:

evidence.nhs.uk/formulary/b...

You should point this out to your doctor and see what he says. Even if your doctor was following the no neuro symptoms guidelines, you should still have had 6 injections in the loading dose, not 5. So he clearly hasn't consulted the BNF anyway?

The second thing I would say is that you will not get the best from your B12 treatment if you are also low in folate and ferritin/iron, have you had these tested?

Finally it is actually quite common to feel worse at first, I think this is sometimes referred to as start up symptoms, as your body finally gets some B12 to work with reawakening some of those nerve endings. I personally had headaches and increased nerve sensations until about the 5th injection, but it all settled down eventually.

I would highly recommend that you go here if you haven't already done so:

pernicious-anaemia-society....

You can go into the forum and read other people's stories, and see the sort of advice that the PAS gives out. If you want to post your own story you need to be a member, which is a one off charge of £20 I think. Or you can just phone their helpline for advice, or they have a Facebook page.

The other thing many of us do in between injections is take high dose sublingual B12, the one I take is Jarrows 5000mcg Methyl B12, other brands and strengths out there. A B-complex is also a good idea, so the other B's don't get out of balance. However, given your symptoms I would urge you to get back to the doctors and insist on treatment as per the BNF, to avoid any further neuro damage. And if your folate is low or low normal try and see if your GP will prescribe 5mg folic acid. Happy to look at any other blood results but I'm quite a newbie myself!

Take care, Hampster

[Hidden in reply to Hidden]

Think we posted at the same time! Are you saying that you have no measurable folate? Has the doc prescribed folic acid?

[Kerifield]

Hi hamster,

God it's soooooooo amazing to get a response from someone who seems to understand.

Thank you millions.

My main concerns as bloods go are 168 b12 and no results at all for serum folate as it was "haemolysed". I called the hospital who advised they should retest this, but that my doc has to request it. I am trying to get to see my doc tomorrow to sort this out, and am a bit annoyed it wasn't picked up. I becoming convinced I have to cure myself lol. I also have to see a neurologist in a mths time (trying to bring it forward) to assess my "nervous state".

It may to be that my folate level is ok, but I have a sneaking suspicion it won't be...or why are the jabs not working..?

So any questions, but its exhausting to think about them all...

I just don't want to leave it too late....I must get better..I'm still reeling from the shock of what a lack of b12 can do, and how little people know about it.

X

[Hidden in reply to Kerifield]

The folate is vital. My doc actually said to me "we never give B12 without folate" so some are aware of this.

But you must also have good levels of iron/ferritin as mentioned. We are also often low in vitamin D, and once you are on B12 treatment you need to watch potassium levels as well (eating lots of potassium rich foods is what I do).

Sore mouth is a symptom of anaemia (B12, folate or iron) and is called glossitis.

IBS type symptoms are common in PA, you should ask to be screened for Coeliac disease. We often have gastritis or low stomach acid going on. Have you had the antibody tests - anti-intrinsic factor and anti-parietal cells?

You really need to be strong to ensure you get the correct treatment, taking someone to the doctors with you can help, as it's easy to get lost in the fog otherwise!

Here is a link to my story on the PAS website, have a read round other peoples as well. If you put a particular symptom in the search box you'll be able to read stories similar to yours.

pernicious-anaemia-society....

[Kerifield in reply to Hidden]

Hi hammy, hope you're well.

So..What an eventful time I've been having since I last I updated.

I really can't believe what's been going on since then, I feel like I am stuck right in the middle of a crazy health scandal, and everything I've read about is also happening to me......

I will add update today on here, and attempt to post my full experience on PAS site.

I also don't think I'd be where I am in the battle today without your help so I owe you a big thanks for your time. Now I hope I can help others with my experiences.

Kerifield xxx

[Hidden in reply to Kerifield]

Oh do tell, I hope you are feeling better though? I'll look out for your story on PAS. This new health unlocked format is driving me nuts!

[Hidden in reply to Kerifield]

How are you doing, Kerifield?

[Kerifield]

Well it seems the test for folate couldn't be done as the blood sample was clotted or haemolysed as the put it, so it's a mystery what the level is....! But I am asking for a retest on that ASAP. I wondered whether to take my own folic acid, b complex, inc b12, and iron tablets, is this a good idea, didn't want to mess with my "natural" levels in case I had to have any more tests.

I've ordered b12 spray and patches off web to see if they help too x

Thanks again

[Hidden in reply to Kerifield]

I'd have the test done if I were you - strange as it might sound if you have PA you normally either have folate that is too low (as in my case), or folate that is too high (in this case it can indicate problems with methylation of folate).

H x

ps look forward to reading your story on the PAS!

[Kerifield]

I also joined pas !

[Kerifield]

Thanks a heap hammy xxx il keep you posted. I'm on a mission now and you've put spring in my stride. Mwah x

[Kerifield]

I think I need daily jabs...I did feel a slight high when I first had them, week 1, but as I faded again when they stopped after 9 days, I thought it may have been a placebo effect almost, from the high of the diagnosis, but now I am 110 per cent sure I need jabs daily.

Thanks so much, I going to print the bnf out and take it to my docs tomorrow xxxx

[Hidden in reply to Kerifield]

Bring this as well:

patient.co.uk/doctor/Pernic...

Highlight the Management section. Don't be surprised if your doctor is reticent about extra injections, this is quite common. Some refuse to deviate one iota from 3 monthly. Others are more open. Point out that if he can't give you them every other day, then why does it say he can in the BNF. Don't mention every day, best to stick to the guidelines.

Sorry, gotta go, good luck!

[Kerifield]

And demand folate test lol x

[Kerifield]

Hi hammy,

I wanted to thank you again. Went to my docs fully armed with info this morning, virtually lectured him, the nurse and practice manager on pernicious anaemia and said I wasn't leaving without my jab lol.

I got one, and can have one every 2 days now to see what happens.

Doc is also sending me back to hosp to recheck my b12 and folate levels and for celiac.

How much do doctors hate it when you self diagnose. Lol

But I was feeling much stronger today with my info, so thanks again.

Hopefully I can bring my neuro visit forward from August t13th too.

I'll keep posting a daily update in case anyone finds it useful. Had jab about 1 hr ago and my head feels a lot clearer....maybe just initially relief, but whatever it is, it's better than feeling worse each day. I can't wait for my next jab, and I HATE NEEDLES hahaha xxx

As far as today goes, it's been best one recently, I just hope we are right and this works xxx

[Hidden in reply to Kerifield]

YAAAAAAAAAAAAAAAAAAAAAAAAYYYYYYYYYYYYY!!!!!!!!!!!!! It really does feel good when doctors actually listen.

Don't forget to eat lots of potassium rich food (google it - bananas are the obvious one), and remember you might not feel better if you need folate too. Have you had ferritin checked? Your B12 will be high now you're having jabs again, so make sure they don't use this as an excuse to stop the jabs.

In this scenario there is a useful quote from the Patient UK article:

"It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.[24] It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels."

And here is a neuro article for you to consider when you go to see your specialist:

neurology.about.com/od/Auto...

H x

ps If you hit the "Reply to this" button the person you're responding to gets an email that you have replied

[Kerifield in reply to Hidden]

Thanks so much again, I can't tell you how much I appreciate all your advice, it literally means the world to me!

I see the problems people must be having with this though. Doc, nurse and practice manager all didn't like me reeling off all this knowledge and demanding treatment, its terrifying how little they knew about PA. I will be printing out some info for the surgery when I have time as I think they need to read it!

I've also been trying to decipher my other blood test results, and work out exactly what new blood tests the doc has ordered and whether I am missing any other tests you might think relevant.....it's all very complicated.

These are the out of range or haemolysed results.....!

Serum vit b12 168 ng/l Range 191-663

Serum folate. Was haemolysed so need to get retest

FBC

Haemoglobin. 17.1 g/dl. Range 12 - 15

Haematocrit. 0.512 l/l. Range 0.36 - 0.46

MCV. 101 fl. range 80 - 100

Eosinophil count. 0.52 10*9/l. Range 0.02 - 0.5

All my other results fell in the normal ranges.

New blood tests ordered are for ...

FBC + DIFF

ESR

B12

Folate

Ferritin (maybe, docs writing terrible) lol

Coeliac screen

Anything else I should add or tick ...

Cheers,

Kx

[Hidden in reply to Kerifield]

I think you should post your story on the PAS forum, my knowledge is still limited and they're great at interpreting bloods on there. Personally, as I also have a thyroid condition, I would recommend you get that checked. Also vit D.

[Hidden in reply to Hidden]

Meant to say you should read the 2 books on this subject (and drop copies off at your GP, lol):

"Could It Be B12? An Epidemic of Misdiagnoses" by Sally Pacholok & Jeffrey Stuart

"Pernicious Anaemia: The Forgotton Disease" by Martyn Hooper

[Kerifield]

Reading Martyn's book now, it's like I wrote it and yes my surgery is due to be inundated as is my mums doc, who told her my nerve issues won't be b12 related!!!!!

I will post up on pas site too.

And guess what.....I feel much better after jab, first proper nights sleep last night for weeks and physically feel better. Right off to hosp for more bloods x