Really need some help with GP practice and blood test please

[Vickymoonpixie]

Hello, I'm so grateful for this forum and all your amazing knowledge and advice. I posted some results a while back and clivealive gave a very helpful answer (Thanks clivealive!). Sorry if this is a long waffle, but i'm feeling desperate and could really do with some advice about my new GP practice.

I was diagnosed with a B12 deficiency about 3 years ago, and although the pernicious anemia test came back negative, after going through my diet and the fact i was taking B12 supplements at the time, it was decided it must be an absorption problem. So I started on injections every 12 weeks. These eventually increased to every 6 weeks at my next surgery due to my symptoms coming back at this stage.

At the beginning of this year i had to change surgery. They insisted i had a B12 test straight away (6 weeks after my previous b12 injection) and it came back with a B12 level of 750. The doctor told me i was cured and no longer needed injections!! I went back with symptoms and had private tests done about a month later and levels were 550, so injections were refused again, but my vitamin D had dropped below normal levels again for the second time in a year, so luckily I was treated for that.

I went back again about 6 months after my last B12 injection with horrendous symptoms (really bad depression, panic attacks, paranoia, frequent migraines, burning sensation in hands, pins and needles in feet, weak legs, exhaustion, dizziness, yellow skin, constipation, confusion, memory problems, brain fog, difficulty concentrating) and was given another B12 test, this time it came back at 350. They reluctantly let me have a B12 injection (no loading dose etc) and the symptoms eased. They tested again for parietal cells and intrinsic factor (a week after my B12 injection - could the B12 have skewed these results??), but the lab came back and said they had refused to test the intrinsic factor because the parietal cell test came back as normal - Does anyone know if this is standard practice??

i have now been informed that because they have recently identified a patient who had B12 injections for 10 years and whose results were off the scale (over 2000 and sometimes un-measurable) that everyone on B12 injections at this surgery will have to have a blood test EVERY TIME their B12 injection is due, to see if an injection is needed. Having read on here that it is completely redundant to test after injections have started, i can't see how this is going to work!? I'm absolutely desperate because when my levels only fell to 350, i was in a complete state, couldn't do my job and almost lost my relationship, i can't go back there again!!!! I would be extremely grateful for any advice any of you might have. Thank you so much x and sorry again for my rambling.

[Retrofunk]

This is a similar story to mine 1980VP. I felt so bad I decided to self inject and insisted on a referral to the haematology clinic, who have agreed with me and are (hopefully!) asking GP to reinstate B12 injections every 2 months.

Since I’ve been self injecting I’ve felt so much better, its probably been 3 weeks or so now. I’m still not 100% but getting there!

There is some fantastic advice on this forum. I decided to take ownership of my own health, and I’ve been very open with my GP and the haematology clinic about it, but I don’t know if that’s doing me any good or not longer term working with the GP, time will tell. I also asked the haematologist to put in his letter that my levels should be high and the BCSH guidance states that further testing is not required.

I have seen others on here suggest writing a letter to practice manager with guidelines attached and hopefully someone can give you some help with this if that is what you decide to do.

Good luck, I really feel for you!

[Vickymoonpixie in reply to Retrofunk]

Thank you for your reply Retrofunk, very much appreciated, and sorry to hear you have a similar story. I really hope the haematology clinic help with your GP!

I'm wondering if self injecting might be the way forwards for me too...

Thanks for the suggestion of writing to the practice manager. I'm willing to give that a try. It's just all so frustrating!

Thank you and good luck too!

[Retrofunk in reply to Vickymoonpixie]

I was just thinking about you @1980VP - did you get the reasons why they were going to be testing all patients in writing or was this over the phone? I would be tempted to make an official complaint, speak to Healthwatch perhaps? That statement speaks volumes as to the depth of ignorance on B12 deficiency and it’s treatment in so many ways!!!

[Vickymoonpixie in reply to Retrofunk]

Thanks for this. I got the information in person from the nurse, but I'm going to make an appointment with the doctor to discuss (armed with all the relevant literature!). But yes, I think it is worth a complaint if I don't get anywhere.

[clivealive Forum Support]

Hi Vickymoonpixie

Hopefully your Vitamin D "insufficiency" has been remedied.

Testing of serum B12 levels after treatment has commenced is not necessary. (See bottom of page 5) where the 2 months interval of injections for those with neurological symptoms is also reiterated.

hey.nhs.uk/wp/wp-content/up...

As for the danger from high levels of Vitamin B12 perhaps your doctor (or Practice Manager) should also read this:

stichtingb12tekort.nl/weten...

Please remember I am not a medically trained person.

I wish you well.

[Soulsister]

Hi, I am going through similar problems at present. People on this forum really helped me a lot a few weeks ago when I was on holiday. Got injections at a pharmacy so I managed to enjoy my holiday, many, many thanks for that. I sent a link to the practice manager of my doctors surgery and made me an appointment with her so we can discuss my case. I am going in armed with printouts and hopefully an attitude that will convince her I am not a lunatic and that I understand that doctors are unindated with rules and regulations and it is difficult to keep up with it all. Phew, hope this makes sense to,you all. I will also refer her to PAS with the links for medical professionals and hope something gets through. Will update after my appointment. Good luck xx

[Vickymoonpixie in reply to Soulsister]

Good luck and keep us posted! X

[pridevain]

My GPS has been keeping me around 250 levels for years... He is impervious my requests for more frequent injections to boost my levels to at least 400..