We don't all fit in to 'normal'?

[flyingsolo]

Hello, hoping for some advice now I've found my way to this forum. To cut a long story short I was diagnosed with B12 deficiency pernicious anaemia about 7 years ago in my 30's, I had been really suffering with varied awful symptoms and it got so bad this included getting neurological and angina symptoms, I was so exhausted everything was overwhelming and I was getting desperate, the only one who realised what I was suffering with was my wonderful Mum who had read an article on it and saw I had all the symptoms, I went to my GP who was very dismissive of the idea. Mum was convinced, I eventually ended up after much suffering being diagnosed via A & E having been admitted for severe chest pain and breathlessness due to the PA, Mum was right all along. The GP seemed surprised as seemed to say it was unusual in my age group, I had a relative who suffered with it as the GP was aware and also a medication I take for which I believe can cause it, so I've never been sure of the reason, but it was a relief to finally be diagnosed thanks to Mum's persistence.

That was about 7 years ago and since then it has always felt like a bit of a struggle to manage, I have an injection either 4, 8 or 12 weekly. It has never really been 'managed' by my GP in any way shape or form, I try to manage it myself with no tools at my disposal other than what my body tell me, I have to try and get a blood test if I feel I'm not having enough or I have to try and get an injection sooner if I'm getting symptoms again, it's very difficult as the GP and Nurses at my surgery seem to have little to no knowledge about the condition and always just refer to what the NHS consider to be NORMAL on their scale and seem to have no idea beyond that. The problem is as far as I see this it's not 'one box fit's all', so there have been many occasions, the last one recently where I was about 2 weeks away from an 8 weekly injection but was feeling exhaustion, trouble with balance, and angina type symptoms, so I called GP and he agreed to do injection a week early and do a blood test just before injection, I KNEW I needed it sooner and the symptoms went away a few days after I had my injection, I had suggested that as at the moment I'm having 8 weekly I feel it would be better 6 weekly as it was then I seem to get the symptoms, I had a call from the GP's receptionist today to say that my levels when they gave me injection were 248 and in their scale anything over 160 is NORMAL so therefore need to stick to 8 weekly. It is hugely frustrating as surely the fact I had symptoms at 248 prove not one size fits all, and we can't all fit in to what they consider is NORMAL??? Am I the only one who gets symptoms at this level, surely not?? I now feel it will be another struggle because only I KNOW HOW I FEEL and if he says it's normal GP won't do injection sooner, he has said doesn't want to 'overdose' me in the past, but I KNOW when it's gone too low. Any advice gratefully received please. Hope this makes sense, tried not to go on too much.

[clivealive Forum Support]

I share your "history" flyingsolo and I too was 30 when I eventually got a diagnosis of P.A, after two Schilling tests - one (failed) in 1968 the other in 1972 and was put on cyanocobamalin every four weeks.

Have you thought to join the Pernicious Anaemia Society click on the link below and scroll down

?

healthunlocked.com/api/redi...

There you will fond lots of information and useful articles.

[flyingsolo in reply to clivealive]

Thanks clivealive l am going to join, but just really wanted to know if others have severe symptoms at 248, which l think is lower end of NORMAL, it's so draining to have to keep struggling against ignorant GP surgery.

[kaiami in reply to flyingsolo]

Hi. I’m not active on here much but back in May I was hospitalized for a week due to neurological issues. They checked for so many things. MS was one, I can’t remember what else. In the end my level was 200, which I was told was the very minimum level considered within range. But since they ruled out everything else, then my symptoms sharply improved when they began the injections, they finally determined that there was nothing else that could have been causing the symptoms. So yes, I do believe that it’s true that we can all have symptoms at different levels. I had very scary and severe symptoms. I’ve been getting my injections regularly, and I feel much better, but I worry that permanent damage was done. Some things haven’t changed a bit. I’ve read that some countries have increased their low/normal to 500. I don’t understand why, with so many cases and studies, doctors aren’t realizing how serious this can be and how drastically it can impact our lives. I began having problems with my vision, for one thing, and it hasn’t improved any. My actual vision is okay, but I get this “halo” around things very frequently since this hospitalization in May, and it has a lot of strange effects on me. I’m still having other symptoms as well that I’m not able to think of/share at the moment. I honestly feel like I have permanent brain damage, but like you, my GP doesn’t take the symptoms seriously.(But as you said, she doesn’t seem at all concerned or alarmed. WE know our bodies and it’s sad when doctors just act like it’s not a big deal because our labs meet their criteria for normal. I know for me it’s really scary that I still have such frequent and severe symptoms. I don’t see how it could not be permanent since I’ve been on the injections regularly since my release from the hospital, yet nothing else can explain. I wish you and your daughter all the best. I do hope physicians will soon realize/acknowledge the severity the deficit can be on our bodies and be willing to trust us sometimes. My understanding is that the longer one is neurologically unstable, the less likely they are to fully regain many functions lost. Time is of the essence with these cases. I would like to have some kind of awareness for this seemingly easy to fix problem that can have such serious and permanent effects on us yet seems so easy to remedy and prevent further damage. Oh, finally I’ve read that you cannot overdose on b12, that you will urinate any excess out with no chance of problems if you were to get too much. So I don’t know why they are reluctant to give it. It’s a shame really. I wish you and your daughter the best of luck. Sorry if I don’t make a lot of sense, this is another thing that began back just before I was hospitalized & if anything has gotten worse. Hopefully you can understand what I’m trying to say.

[flyingsolo in reply to kaiami]

Thanks kaiami, l totally get what you're saying and agree with all of it, it's so wrong that like me you ended up in hospital with this insidious condition, l really feel for you. Why are our GPs so ignorant to this debilitating condition, I've been told they are much more informed on it in the US, if so why can't UK catch up, it's ridiculous. I know at 248 l was getting angina symptoms and exhaustion, balance issues etc but my GP says anything over 160 is NORMAL. I wish you well and hope you can get to a better place.

[pslmt in reply to flyingsolo]

Not sure if UK lab numbers are the same as US but, I was very sick. My lowest number was 314. I self inject and I would recommend you do the same.

[Annnon58]

Sorry to see you are being undertreated , your GP is wrong , you can not overdose on b12 as it’s water soluble ,. Have you considered self injecting ? I’m glad your mum is on board , perhaps she could help you order your supplies . Many thousands of PA sufferers SI as the doctors don’t follow the NICE guidelines whith nurological symptoms ( you do have ) injections every other day until no futher improvement. You will also need to take folic acid every day as a co factor . If your daunted by self injecting at first there are good videos on you tube to guide you . Concider joining Pernicious Anemea/B12 Deficiency support group Fasebook. They give links on where to source reputable supplies and great advice . I inject my husband weekly and I make sure he takes folic acid and he’s so much better now . Best of luck to you , take care .

[flyingsolo in reply to Annnon58]

Lots of good advice there, much appreciated. Have never considered self injecting, without being able to take a blood test to check levels (GP only do this routinely once a year, unless l insist and they don't make anything easy), how do you know when you're at your optimum (not sure I've ever been) level? It is purely down to how you feel? I wouldn't mind the injecting once l got used to it.

[fbirder in reply to flyingsolo]

All the experts say that testing for serum levels of B12 shouldn’t be done once treatment has started.

The way you know you’ve got the optimum frequency when self-injecting is that your symptoms are minimised. You start of with a fairly long gap and record symptoms. Then reduce the gap if symptoms are appearing before the next injection.

[flyingsolo in reply to fbirder]

Thanks for that, fbirder, never knew that. I have been having treatment injections for 7 years now so too late to do this unfortunately.

[MariLiz]

I was fortunate that my GP listened to me when I explained that symptoms were returning well before the twelve weeks when my injection was due. She agreed to a trial period of more frequent injections, every six weeks. I was able to return with a list of the improvements I had noticed, after several months of these more frequent injections. She then agreed to keep me on the six weekly timing, and it has helped me enormously.

I did take my husband with me to the first visit, and he was able to reinforce how badly the symptoms were making me feel.

[flyingsolo in reply to MariLiz]

Thanks MariLiz, it's good your GP listened, mine does at times but then always seems to go back to quoting NORMAL ranges etc.

[Annnon58]

No need to test level of b12 as it’s the amount at cell level that counts , not amount in blood when on injections , all the best , hope you decide to SI and get better ASAP 😀

[flyingsolo]

Thanks Annnon58 you have definitely given me something to look in to and seriously consider, hopefully this could be something hugely beneficial to me, all the best 😀

[Annnon58]

I always ask GP receptionist for a print out of blood results as when they say Normal , could be only just in range . I keep all my results in a file and then can see if numbers are dropping , eg ferritin , platelets , b12 , etc. They can’t refuse you a print out as it’s your legal right . Good luck flying solo 🌟