HELP: I DON'T KNOW WHATS HAPPENING

[metro100]

HERE I AM AGAIN, I WENT LAST WEEK TOLD MY DOCTOR HOW I'M FEELING, BREATHLESS, NEEDING TO TAKE IN THOSE DEEP BREATH'S, FOGGY HEAD, REALLY CONFUSED, SAY THE MOST STUPID THINGS, DO ANY OF YOU GET LIKE THIS, I'M A RECEPTIONIST IN A BUSY GARAGE, ITS VERY DIFFICULT TO STAY FOCCUSSED, IM A LOT SLOWER THAN I WAS AT DOING MY JOB, I SAY WRONG WORDS IN SENTENCES, HAVE TO RALLY THINK ABOUT WHAT I DO AND SAY, BURNING IN MY FEET, A VERY HOT FACE, POCKING IN MY RIBS ON MY BACK.....I AM HAVING INJECTIONS EVERY 5 WEEKS, JUST HAD EXTRA ONE , SO 1 ON THE 28 OCTOBER AND ONE ON THE 14TH NOVEMBER... NOW HERE,S WHAT I DON'T UNDERSTAND, ON THE 11 OCTOBER I TRAVEELED TO LONDON FOR ACTIVE B12 TEST.. RESULTS. >256.0 PMOl/L 25.1 - 165.0 SO VERY HIGH.... JUST HAD FULL BLOODS :

SERUM FOLATE 6.6 UG/L 4.6 - 18.7

SERUM FERRITIN 75 UG/L 13-148

TOTAL WHITE CELL COUNT 6.1 10*9/L 4 - 11

RED CELL COUNT 4.1 10*12/L 3.8-5.8

HAEMO ESTIMATION 132 G/L 110 - 160

HAEMATOCRIT 0.397 0.36 - 0.47

MCV 95 FL 76 - 100

MCH 31.4 PG 27.0 - 34.0

RED BLLOD CELL WIDTH 12.1 11 - 16

PLATELET COUNT 262 10*9/L 150 - 400

NEUTROPHIL " 3.4 """"""" 2 - 7.5

LYMPHOCYTE 1.8 """"""" 1.0 - 4.0

MONOCYTE 0.5 """""""" 0.2 - 1.0

EOSINOPHIL 0.3 """""""" <0.7

BASOPHIL 0.1 """""""" <0.2

I CAN'T SEE A SYRUM B12 RESULT BUT MY LAST ONE WAS 1379 NG/L 200-950 SAYS HIGH DUE TO CLOSE INJECTIONS...

THESE ALL LOOK PRETTY NORMAL, CAN'T UNDERSTAND WHY IM SO CONFUSED AND BREATHLES... AND I MEAN REALLY CONFUSED I THINK I,VE GOT ALZHEIMERS... TODAY LUCKILY IS A GOOD DAY SO I CAN TYPE THIS OR ELSE GOD KNOWS WHAT YOU WOULD BE READING..... I WENT YESTURDAY TO SEE LUNG SPECIALIST BECAUSE MY DOCTOR SNET ME TO HAVE SOME TESTS HE IS SENDING ME FOR A BRAIN SCAN HAS ANYONE ELSE HAD BRAIN SCAN TO DO WITH PERNICIOUS ANAEMIA..... PLEASE HELP ME IM GOING MAD........ PLEASE........

[Hidden]

Hi,

I suppose there was no point in having active B12 test when on B12 injections every 5 weeks. Your blood tests do look OK, but I am no expert! There is obviously something wrong with you, but it does not look obviously to be a B12 def and or folate and or iron def, all looks OK. I do not know if you have had thyroid tests?

Yes I had MRI scan of brain, its nothing to worry about, its very noisy, and a bit of a closed environment for a while, but over and done with in no time really. I had it because of balance problems, to exclude other possible causes such as tumour etc.

Your GP has sent you for further tests, you can do nothing but wait now, if you can, try to think of something different, Christmas perhaps, just not to worry so much, as it will make no difference, what is will eventually come to light , try not to speculate to much now..

Hope all goes well, and you will get results soon that may help put your mind at rest and gives you a diagnosis and any treatment you may need.

Kind regards,

Marre.

[metro100 in reply to Hidden]

thank you marre I always look forward to your answers, it's just I don't know what else to do , I have felt crap, very crap, good days, really bad days for 2 years now,trying to live a normal life, diagnosed pernicious , irritable bowell, and this stupid head, back, feet, do you think I need a different b12 injection, I clearly have plenty of it, but is it the wrong sort?

[Hidden in reply to metro100]

Metro,

What B12 are you using????

[Gambit62 Administrator]

Really sorry that things are so difficult.

My own case was really one of just hitting on a solution that worked for me and realising that I was one of those people that need a lot of B12 and high levels to feel okay. I had injection at end of April and went back to see GP less than a week later in an awful state - he just wanted to put me on anti-depressants so I went away, ordered some B12 ampoules from Germany and whilst they were coming started using a nasal spray at much higher doses than I had been using ... and was amazed how much better I felt within a couple of weeks - went from struggling to walk to actually being quite happy perched at top of ladder pruning my grape vine. Unfortunately the guidelines all imply one-size fits all. Lucky to be in a position to be able to afford to try things for myself ... and also lucky that you can't overdose on B12.

I supplement B9 (folate) as well - and small amounts of B6 and try and listen to what my body is telling me that it wants to eat

[metro100 in reply to Gambit62]

if that is what it takes and you think that even though my levels are high and that I still need more and that I need to self supplement then that is what I will do,,, I use a under tongue spray every day now, some days I feel quite good some not good, when the breathing is bad then the head is bad, they are the two bear binds, I can cope with burning feet, dead fingers and digging back, but its my head and breathing,it just seems weird that I seem to have a lot of b12 in me according to the tests, but is it the wrong b12....???? is this how others feel, brain fog explain to me how you feel,,,, breathing again how does it feel to you, am I barking up the wrong tree, is it my pernicious anaemia or is that under control or is there something else wrong......???? I was healthy 2 years ago I could run 10 miles and I did, bow I couldn't run 10 yards.......

[Gambit62 Administrator in reply to metro100]

its a long time since I really gave my B12 a chance to get low enough to feel the worst of things but even on the shots and with some supplementation I was struggling to concentrate, remember words, plagued by suicidal thoughts and really felt so unsteady on my feet - I was getting shooting pains in my legs and at times felt as if I just wasn't getting enough air into my lungs ... ironically I'd feel more comfortable trotting than walking because the balance felt better and the pains in my legs/foot were much less.

I think they are still slowly researching how exactly B12 gets used and different problems can occur at different places for different people. The injections are hydroxocobalamin and the body has to do quite a bit of processing to convert that to the forms that you use. Some people find methylcobalamin works better for them but that isn't available on the NHS. You also need to make sure you have enough folate - partly because that helps with the absorption and partly because the body uses both folate and B12 for a number of key processes.

It is always possible that there is something else going on - unfortunately PA often goes with other auto-immune problems - but I think a lot of it is down to people not being given the amounts that they really need. It's not toxic - there isn't a good test to tell whether you are B12 deficient even before you get a diagnosis and results once you have started on B12 don't really mean an awful lot unless they are really low. I don't think you have anything to loose by trying to take more of the spray and see how it goes (though keep an eye on B6 and B9 that you are taking in as too much of either - particularly B6 can cause problems ...

[ribbon]

have you had your thyroid checked, and your adrenals?

[Marianne1]

Hi Metro100

As I've been reading your post I had to think for a moment if I had posted it! I too am a receptionist at a busy garage and only yesterday I spoke to my boss about quitting as I'm just feeling that I can't cope, I was diagnosed with PA only 2 months ago, my levels were 112, I've tried to keep off forums as they have really gote down, as I never read about someone who has got their life back!

Good luck

[Gambit62 Administrator in reply to Marianne1]

Marianne - just seen your post and wanted to say that I have got my life back - but only through taking things into my own hands and experimenting with supplementing at high levels. 6 months ago I was getting to the point of thinking that I was heading for having to give my job because I couldn't cope but actually now I'm probably coping better than I have done for at least 10 years - just hadn't realised how ill I was and all of the ways in which it had affected me.

It is possible. And I'm sure I'm not the only one.

[Hidden in reply to Gambit62]

Hi Marianne,

Just to give you good news, I'm completely normal now, no one would know I am on B12 treatment (I did have to get increased B12 injections and folic acid to get here, but I'm absolutely normal now, only a few balance problems that are easy to live with).

Both my daughters are just fine and normal with standard once every 3 months B12 treatment. Its logical that they would not post on forums, they are fine, getting on with life and B12 is just a once every 3 months jab. You will find its only those who do not cope with standard treatment, or no diagnosis, just have been diagnosed etc that will be posting on forums like this one.

I hope this gives you hope, and a reason to persevere if you are not doing well (give it some time, it took me 3-4 months to feel the benefit of the B12 injections) on standard treatment to question your treatment and get further tests (serum folate, ferritin, thyroid etc can all go wrong once treatment has started) to investigate why you are not as doing well as you hoped. Seeing a haematologist can be useful, and or neurologist if you have neurological involvement etc.

Kind regards,

Marre.

[Marianne1 in reply to Gambit62]

Thank you, that has really lifted my spirits, I have good days and bad, I just really got dishearten with all the negative feedback that I read on forums, this is just what I needed

[Marianne1 in reply to Gambit62]

Can anyone tell me how I order the B12 and needles that I will need and what's the difference between the B12 that I can buy? Very confused

[Gambit62 Administrator in reply to Marianne1]

All injectible forms of medication are prescription only in the UK, so if you want to get B12 in an injectable form eg the ampoules - you will need to source it from outside the UK. I use a company in germany - called mycare - others use goldpharm - and you do it over the web. Think you can get both hydroxocobalamin and methylcobalamin.

You can also by methylcobalamin in dry form in the UK to be mixed with saline (but you have to get the saline from outside the UK because of the prescription only rules.

B12 can also be sourced in the forms of sublingual tablets (absorbed through membranes in the mouth), skin patches and nasal sprays (my particular favourite). Different people respond to these in different ways. Generally they are available as hydroxocobalamin or methylcobalamin. People respond differently to different forms of taking B12 and to different forms of B12 - some find methyl is better for them and others find it isn't. Unfortunately there is no way of knowing in advance so it's a question of try and see.

Patches, sublingual tablets, sublingual sprays and nasal sprays are all available through the internet but it is best to go to a reputable supplier so you have some assurance that the B12 has been stored properly - needs to be kept away from heat and light. I have used a supplier called detoxpeople for my nasal sprays and found them very efficient and helpful.

I'd recommend that you try some other forms of B12 before jumping into self-injection.

If you go for self-injection you have the option of subcutaneous - for which you need standard insulin needles - I sourced mine and my sharps box etc from medisave.

This post contains information on what needles you need for intra muscular but please make sure that someone shows you how to do these properly if you decide to go for that.

healthunlocked.com/pasoc/po...

[gillsie]

Hi

Yes I had a scan which I paid for myself at the time of diagnosis because I was so worried and at that point my GP was fairly ignorant of B12 deficiency and not sympathetic. Fortunately there was no obvious brain damage and most of my nerve damage is peripheral. You really do need to check the B12 levels. Are you getting any B12 injections yet? It takes ages for you to pick up with long term PA that goes undiagnosed. It is 2 years since I started treatment and I still feel rubbish at times but much improved to back then. I still get a bit paranoid and over anxious but have learnt to recognise that. Hang in there - keep nagging for more tests and make sure they give you enough injections. Take care.

[gillsie]

Hi

I see you are getting jabs - but how often

[pvanderaa]

I also had irritable bowel and brain fog. Have you looked at either a reaction to Gluten or the Casein protein in dairy? I would get sleepy and have pretty severe fogginess about a day after eating the wrong thing. The have diarrhea and some symptoms would clear up.

[Happy-go-lucky]

I always get breathless when need 3 monthly jab and really tired. Hope you get it sorted x

[lal2502]

Hang on in there Metro I know exactly how you feel I am having one of those days today. I have recently started self injecting (last Friday) and I am going to see how I go. i just don't manage on my 3 monthly injections from the nurse in fact had to fight for those so no point in asking for more frequent treatment.

One good thing though as I said earlier today is one of those days but last week I managed a few good days in a row

Take care x