Diagnosed 4 years ago and now struggling with bodily pain

[karent75]

Hi, I was diagnosed four years ago with PA but my ferritin and folate were only tested last summer for the first time, as I began to feel extremely tearful, the pins and needles in my hands, arms and feet returned, I continually felt as though I was going to black out, I was craving ice lollies all day long, I was very out of breath even when sitting down, and generally felt like poo!

The doctors then called me to say I was folate deficient, and was given a prescription of 5mg folic acid per day for one month. I had also become extremely deficient in vit D but was told my ferritin was normal at 33.

I had to fight for a repeat prescription of folate, after which the doctor agreed to give me another three months worth, but only when I was asked if I paid for my prescriptions, to which I answered yes, even when I have been out of work.

I was told to purchase vit D outside as it was cheaper than on prescription, however nothing was advised for ferritin as my level was apparently "normal".

My TSH has risen from 1.37 to 1.95mIU/L but is still within range (0.35 - 4.94), and doctor won't look into even though I have put on approx six stones in three years!

I now take vit D3 with K2, one sachet of spartone, vit E, folic acid and omega 3 on a daily basis. I also purchased and began to self inject B12 every other day, as the 10 week intervals from the GP aren't enough.

However, recently I began to slowly cut back on self injecting to every three or four days, but since just before Christmas (and before cutting back on the B12), I have developed very bad pains on the outside of my right foot, which has also just started on the left foot too, that radiates to just under the side arch and sometimes along to the ankle, along with pain in my upper arms and left shoulder. The underside of my toes also hurt and if I press lightly on my toenails they are painful too.

I also suffer with very, very bad bouts of diarrhoea, anything from as little as 10 minutes after eating, and it's just like a force when exiting my body! My doctor isn't concerned by this, says it's not related and that I just have IBS, even though my Aunty has Chrones and can also be another auto immune disease PA sufferers can develop.

My question is; does anyone else suffer with bodily pains similar to me, and if so what did you do to help it?

I am fed up taking painkillers on a daily basis, and paracetamol doesn't even touch it.

Sorry for the rant and theong post.

Look forward to any replies, questions or comments.

[Penni]

I have the same problems but my b12 levels were so low for so long I have now been left with a curve in my spine and permant nerve damage too my hands and feet. I have been giving myself my b12 injections but found out this week that the amount I was giving myself was far too low, so will be fighting with gp to be given my b12 ampules on prescription and doing them myself as my gp doesn't believe that they should be given any less than every 12 weeks

[karent75 in reply to Penni]

Hi Penny, thank you for your reply.

I'm sorry you too are suffering terribly, and I am crossing everything for you when you go back to your GP to request more frequent injections. How did you find out the B12 you were giving yourself was far too low? I have been injecting 1ml Hydroxo every other day, until around Xmas time when I cut back to every 3rd/4th day. But recently I have begun to feel horrendous once again, and everyday is a struggle that I usually end up crying and feeling Im not living im just existing.

Please let me know how you get on with your GP.

Thanks

[Penni in reply to karent75]

I had my gp out to visit me last week as the pain was keeping me awake at night. I showed her the b12 that I had been giving myself and it was her who told me that the dosage was 10x too low. I need the 1000mg not the 100mg that I have been taking so no wonder I've been feeling so bad

[karent75 in reply to Penni]

Oh wow, well at least your GP looked at your meds and advised accordingly, something mine don't do! I have even taken info in from other websites, the BMJ and NICE guidelines, but to no avail. I was just told I am depressed and have IBS too many times that I no longer bother going unless its for my injection. x

[Penni in reply to karent75]

Have you tried the pernicious anemia society website? I found them helpful and if possible I would look for another gp as the one you have doesn't seem to be very helpful

[karent75 in reply to Penni]

Yes I am a member of the PA society.

I also have a little problem with regards to registering with another GP.

We are currently registered with the GP surgery for our area. When registering with a new GP surgery, we have to prove our home address with various docs which is fine, but the trouble is this is when the surgery then informs you that you can't register with them as we are not in their catchment area, even though they are only a down the road from us. They then proceed to inform you who you need to register with, and will not accept a new patient on the books just because they are not happy with their current GP. So unfortunately it's not as easy to just seek another GP. All three doctors where I am registered have all given me the same info, and that im depressed, have IBS and that there's nothing else wrong with me. But I guess I am lucky to still be alive and have nothing more serious. On the flip side they have been very good with my daughter, who had a cancerous brain tumour, so I shouldn't really moan!!!

[babsg]

Yes I do. I also have similar problems with my feet. Especially my left one which is virtually numb although still very painful. The pain in my ankle is immense. I drive an automatic car. I have parietal cell anti bodies, first detected in 1999 however, I was only offered B12 injections last year. I had the traditional loading does of 5 and the 12 weeks. My iron levels are low. I feel ill and in pain most of the time. I also have dreadful abdominal problems. Hope they find answers soon. Although in my case I am not sure they are even looking

[karent75 in reply to babsg]

Hi babsg, thanks for your reply.

It sounds as though you too are struggling with your symptoms and getting your GP to listen, something I can relate to!

I tested positive to IF antibodies but negative to Gastric PC antibodies, and was given B12 injections every 12 weeks. However, my GP dropped them to every 10 weeks as I felt so bad, but will not give them any more frequently.

I have been told by another GP at the same surgery that the pins and needles I am experiencing has nothing to do with PA, even though this was one of the first symptoms I experienced before diagnosis. i have also been continually told that I am depressed, and I cant even tell you how many prescriptions for anti depressants I have shredded! It seems that they are quick to write a prescription for AD's, I suspect this is because they earn commission from the pharmaceutical companies, but not treat the symptoms accordingly and learn about the causes of PA. I have also been told that my bowel problems are nothing to do with PA and that I hsve IBS, so still no hope or help with this.

The bodily pains I am now experiencing are new, although when growing up and as a youngster I suffered pains similar to a sprained feeling, in my ankles, wrists, knees and elbows, and my mother was told they were growing pains! I am fed up of feeling pain in my body everyday, it's not a muscle or joint pain, it's just a pain that rages.

The bowel issues can be chronic and some days I am scared to leave the house, and when eating out I have to sit in the restaurant until I know it's safe to leave!

I hope you get some answers soon too, although like you I don't feel I am getting anywhere fast with my GP, in fact I no longer bother to go unless it's for my injection!

Thanks

[Emjaytee]

Hi Karen, I'm in very much the same state as you from the sound of it, what has helped an awful lot with my stomach issues is Protexin Bio-Kult Advanced Probiotic 60 Capsules, I bought them on amazon at a much reduced priuce than the shops. I paid £9.95 for them and have tried many different brands but for quality, effectiveness & value for money, I am settling for these ones. I would recommend you give them a go, they surely couldn't make things worse from the sound of things.

[Emjaytee]

And just to let everyone know, Amazon UK are currently doing a month's free trial on Amazon Prime and you get free postage on lots of products on there, I've been making the most of it this month and saved a small fortune which I'm chuffed about as these supplements aren't cheap!

[karent75 in reply to Emjaytee]

Thanks Emjaytee, I will definitely be giving these a go as yes you are right, it can't make things any worse!

Thanks for the info.

[Gambit62 Administrator]

Really sorry but unfortunately not surprised that you are having problems getting your GP to listen.

I find it difficult to understand how things can be dismissed as IBS and 'Depression' - both are actually labels for conditions for which the underlying cause isn't understood (IBS) or for which there could be anyone of a number of underlying causes. Find a label but don't find a cause seems to be the order of the day.

My experience last year which led me to treat myself and find doses and forms of B12 that work for me was going to GP hoping to talk about whether B12 was my problem. His immediate response was to tell me that he thought it was unlikely as I was on shots and then to dismiss a number of the symptoms that I had mentioned as 'nothing to do with B12'. He isn't an uncaring individual but I find the level of ignorance about what B12 deficiency actually is so frustrating ... as do so many others.

I went from struggling to walk and having to carefully feel where I was before I could sit down - and struggling to get up - to being quite happy perching at the top of a ladder to prune a grape vine within 2 weeks. About 3 months later I realised that the depression and anxiety I'd been suffering from for decades - though had got a lot worse in the last decade - had basically gone so sad to realise how many years I'd probably been suffering for unnecessarily.

I certainly experience a lot less pain now than I did - would get shooting pains regularly in my lower legs which I was told were nerves being pinched by tendons because foot wasn't sitting right - also lower back problems have gone.

I still go back for shots but only to keep the B12 deficiency on my record just in case anything else crops up.

All the symptoms seem to be affected by hormonal changes and get worse in the period building up to my period - though not getting anywhere near as bad as they were.

I supplement B12 at somewhere around 3-4mg a day otherwise start to go backwards. I also supplement folate ... and a little B6 as I think I get through so much folate my body started robbing my B6 as problems with migraines got a lot worse for a while.

I still have some gut problems - mainly in terms of sudden needs to go to the loo - much rarer on the acid-reflux side since I started all the supplementation.

Hope you manage find a solution that works for you - I use a nasal spray mainly - 2 in fact - one hydroxo and one methyl as the hydroxo seems best for anxiety and depression and methyl for the feet - if I manage to get the methyl right then I more or less have feeling in my left foot - otherwise it's just a lump of meat at the end of the leg.

[karent75 in reply to Gambit62]

Oh my god Gambit62, you really have suffered too.

I can honestly say that the "find a label but don't find a cause seems to be the order of the day", is definitely how my doctor works, and yes my GP also seems to say my symptoms are nothing to do with my PA.

Why are most GP's so ignorant to this illness?

I have noticed as well that I am not as good on my feet as I used to be, but my problem foot isn't numb. Only yesterday I slipped over while I went grocery shopping. OK, I grant the road was icy, but a few years ago I would have been able to readjust myself to stop the fall, but now I find I almost have no energy to correct myself In order to help regain my balance.

I also managed to drop a pan of boiling water with potatoes in earlier today, the result was boiling water all over the floor but worse still my hand too. My hand was fine after the usual "run it under cold water for ten mins", but I just seem to be getting more and more clumsy.

The guy issues are worrying, especially as sometimes it's so frequent, and that I can't seem to hold anything in for long. Yet I seem to be putting on lb after lb, stone after stone.

I also get a pain in my rib area either to the front, back or side, and know this isn't a gallbladder issue as I had that removed years ago. (Can be either side of the body and feels as though you have have been kicked and winded, but continuously until the pain subsides).

I really hope that one day I will come across a GP who listens, and who will help me on my way to recovery, rather than just my existence!

I wish you all the best Gambit62.

[jalbey]

I believe that diarrhoea is a common symptom of PA and often associated with wheat intolerance. I now stick to a gluten free diet and have only occasional bouts usually when I have been exposed to gluten.

[Emjaytee]

Good point Jalbey, I also find my stomach issues are somewhat alleviated by avoiding wheat based and gluten containing products, I also find other pains subside somewhat on a wheat and gluten free diet,but it is difficult sticking to such a strict regime when I see an attractive looking sausage roll

[karent75 in reply to Emjaytee]

I think I will give it a go Jalbey as I really can't stand the toilet running anymore!