B12 deficiency

I visited my gp on Wednesday 30th July at his surgery. Those of you who are new to this blog will probably think that its not a big deal. For me its a huge deal. Most of my conversations with my gp are held over the phone because visiting his practice is just too stressful and exhausting.

Due to my previous medical care (or lack of) I have been left with a fear of medical staff. I wouldn't class it as a phobia as its not so extreme that I will not go, its just things have got to be pretty bad for me before I will consider a visit.

The night before even a routine blood test will be spent sleeplessly. I have to rehearse every aspect of any topic of conversation that may crop up. I have to be prepared because without being prepared there is a lack of control. 

My gp is lovely, my hospital consultant is lovely but a visit to either of them fills me with dread. You see I used to have a lovely neurologist until he decided that I didn't have myasthenia gravis but instead had psychological issues. This then coloured every interaction I had with medical personnel, who suddenly became very cold and uncaring. I now fear that at a moments notice this could happen all over again.

Without my gp and my consultant I would have no one in the medical world that will fight my corner and actually believe my diagnosis. Even though I have the tests to prove I have severe autonomic nervous system dysfunction, I am yet to find a doctor outside of my consultant and gp that actually believes this diagnosis. They believe that I have Ehlers Danlos syndrome hypermobility type but dysautonomia seems a step too far outside what they learnt at medical school.

 Wednesday was a tough day. I needed to speak to my gp about the fact that my back pain has ramped up to such an extent that I get no relief from it other than sleep and even then it will wake me up.

To prepare for my appointment I downloaded and printed off outline drawings of the human body ( you can find the ones I used here ). I printed off two copies so that I could colour in where the pain is on a good day and where I feel it on a bad day. That way I guessed I wouldn't have to strip off. I did wear matching underwear, which my friend Ellie always reminds me, that in a film that means you are going to be the one bumped off. No one who gets murdered in a film seems to be wearing greying, saggy knickers and bras? I dont know why its not very true to life. 

I digress, so my pictures were prepared a week in advance. Under each picture I also wrote a short summary of what the pain was like on each area of the body plus any extra information I felt was pertinent. That way if my mind went blank I could refer to the information I had on the sheet.

As my husband wasnt coming with me I was having to make it to the surgery under my own steam. I was going to book a taxi however some good friends stepped in and offered me a list there and back. I was however going to have to use my crutches instead of my wheelchair as I can't self propel. Which is probably why I am in agony with my shoulders and collar bones today.

It didnt go well in the waiting room as I had a funny turn and ended up having to rest my head against the wall of the waiting room as I couldn't put my head between my legs without drawing attention to myself. I know its stupid but I dont want to cause a fuss. I leaned myself up against the wall (whilst sitting) and closed my eyes waiting for the room to stop spinning. I also felt like I was going to vomit so I focused on my breathing. When my gp called my name he took one look at me and asked me if I wanted him to go and get the wheelchair. Again not wanting to cause a fuss I said no and just told him to wait for me to get up. He was insistent that I was very, very slow on getting to my feet and he never went further than catching distance in front of me.

The usual pleasantries were exchanged and then he started going through my latest blood test results. The good news is I am not diabetic which had been a fear of my gp's due to the pretty much constant bouts of cellulitis I have suffered. My kidneys and liver are working well. He then told me my B12 results were 178. As I was in the process of recovering from a turn, it took a few seconds for that to sink in. You see I have been telling any doctor that will listen since January that my B12 levels were low. Everytime my B12 levels drop I get pins and needles in my hands, I lose sensation in my hands and have problems telling hot from cold and dry from wet. 

As I am pretty hot on the problems B12 deficiency can cause and pernicious anemia seems to run on my paternal side, I knew 178 was not a good number. However doctor training on B12 is pretty poor in most countries around the world. Doctors will accept that not enough vitamin D and you will get rickets, not enough vitamin C and you will get scurvy but they will not accept that low levels of vitamin B12 will wreak havoc on your entire body. For more info please use this link b12d.org , which is a great website for information regarding both conditions.

Had I been well enough to stand and fight my corner yesterday, as it appears my gp is unfortunately not fully aware of the implications of a B12 deficiency, I would of. I did however in my muddled state manage to tell him I had neurological symptoms. He didn't agree and said that it was due to my poor circulation. After a small discussion, he suggested that he would give me an injection of B12 as an experiment to see what it did. I knew that one B12 shot would make very little difference and I actually needed an injection of B12 every other day until there is no further improvement for patients with neurological involvement eg me and then injections every 2-3 months (NICE guidelines). So as I am providing this blog posts with these links I am simultaneously printing off the information for my gp. 

Please remember a gp is like the jack of all trades, he or she is supposed to know a little about everything and they are only human. Sometimes things will pass them by. Hence why I am not cross with my gp nor disappointed, I will provide him with the information to update him. Should he choose not to use it or to actually give me the correct loading dose of B12 then I will be extremely angry.

I have been shocked by my response to the B12 injection, thinking it could be days or months before I would see any results. The first thing I have noticed this morning is that there has been a massive reduction in the nerve pain in my leg. Its the most comfortable its been since before April 2014. I also woke up this morning feeling refreshed its been years since that happened. For me its too early to say it was the B12 that did it but I am curious to see what tomorrow brings! My gp asked me to ring him if I had any improvements in a few days.

My main reason for my visit was my back however there was the little issue of my syringes to discuss. I dont think that I have mentioned that ever since I have been placed on the drug octreotide, there has not been an issue obtaining the drug but a major issue obtaining the method of delivery. The hospital gave me an ample supply of needles and syringes when I was discharged but by May that supply was running out. This is where the problems started.

The community pharmacy list does not allow for syringes of this size to be issued, its not contained within their list. So unless I was prepared to pay for them my gp was not going to be able to issue them. This lead to many phone calls to the prescribing team and the hospital to try and get this issue resolved. 

All that happened was that it turned into a massive blame game the hospital blaming the gp surgery and vice versa. That left me playing piggy in the middle and I was still without the needles and syringes to be able to use the octreotide. In the end I got an emergency supply of both the needles and syringes from my doctors surgery on several occasions. Eventually needles were prescribed, 400 of them (200 for drawing up and 200 for injecting) but no syringes were forthcoming. That was fine whilst I wasn't injecting due to the cellulitis but as I started using the octreotide again last week I was going to be out of syringes by today (Monday 4th August).

When I told my gp that the syringe situation had still not been sorted I thought he was going to combust! He had no idea there was still a problem but he sorted it immediately. As the hospital would not issue me a prescription for the syringes so I could acquire them from the hospital pharmacy my gp took matters into his own hands and gave me a box of syringes from the practice. The practice can order them for their use but they can not be ordered for patients. A completely ridiculous and kafkaesque situation but there you have it. Now in 3 months all I have to do is ring up and ask for a box of syringes! Why its taken from April to July to sort out is beyond me.

* * *

I started writing this post on Thursday 31st July, I felt like a different person from just one B12 shot. I felt so good I rang my doctors surgery to tell him of the improvement. Later on that evening he rang me to say he now wanted to start me on B12 injections every other day for a week or so. Not exactly the NICE guidelines but it was a start.

That evening on the advice of a good friend in the USA who has suffered permanent damage to her nervous system due to B12 Deficiency I ordered some B12 lozenges from a well known internet site. They would be delivered the following day. 

On Friday I woke up and felt dreadful, I had slept better but I felt like death. The pain in my leg was back and worse than ever. I felt so deflated, had my reaction to the B12 injection just been a fluke? I know what I am telling you is just anecdotal evidence however I am not advertising anything, I am not being paid by anyone, I am not even telling you the brand of B12 or the site I obtained it from. I can only tell you my experience.

Once my B12 arrived on Friday I took the dose my American friend had suggested as a loading dose. Too much B12 is not harmful and my B12 is low, my stores are depleted. I noticed no difference Friday even after taking the dose, all I felt was washed out, tired and disappointed.

Today Saturday morning after two doses of the lozenges my leg pain has gone. When I say my leg pain is gone I mean the horrible screaming unrelenting nerve pain I have had for months and does not respond to medication. I still have an ache / throb in my thigh and down my leg but its like the volume has been muted. I slept deeply last night, I felt like I had actually slept. I haven't had that feeling for 7 years. The only thing that is different in my life is enormous doses of B12 and the fact I have just started watching Scandal. I dont think its Scandal, as good as it is, that has reduced my leg pain.

I am still exhausted and feel like I could sleep for months but then I have been suffering with sleep deprivation for years. The damage done to my system because of the low B12 will take months to repair. My gp has already confirmed this. He has also warned me some of the damage may be permanent. However he has told me that I will be having B12 injections every 2-3 months for the rest of my life after this loading dose.

I hope that my response to the single B12 injection has changed my doctors mind. He believed that there would be no neurological symptoms at a level of 178. Despite the BMJ Best Practice recommendations, The British Society of Haematologists report, the NICE guidelines and the fact my B12 results had come back from the lab in a red box. He gave me the B12 shot as an experiment. Look at the results! 

I hope that my reaction to a B12 injection has changed his mind.

I would like to point out the B12 lozenges will not replace the B12 injections that I am having on alternate days. I am using the lozenges to get rid of the pain in my left leg as because the surgery doesn't open at the weekends I have to wait from the Friday to the Monday to receive my injection. If your doctor says you need B12 injections do not think you can use B12 lozenges to replace them.

If you suspect you are suffering from a B12 deficiency this will advise you on the next step