Advice please

[Andypandy30]

Hi I have had 4 b12 injections in the last month but it has now been changed from weekly to once every 3 months . As I haven't had one in the last 13 days iv started to feel the symptoms coming back . Fatigue weakness twitching muscles ( thumb) yest ! Low mood . Buzzing in body . My questions are ? What can I say to my surgery as I cannot get an app until next week re this so may have to leave a message with a v difficult receptionist who doesn't like me taking control of my own health . I got bloods done a week ago and still do not know results . And won't be given them until I see gp and even that will be difficult . So was thinking of asking her to ask my go to have a look at my b12 and folate results to see if they've improved after the 4 injections . I suppose I am hoping it has but at the same time if they haven't why have they not contacted me re getting more injections and still leaving me to wait another 3 months for next one . My other question is if I cannot get any help from receptionist or come off the phone feeling deflated as I usually do as I am trying to be proactive ! What do I need to take to combat symptoms for 3 months . Or should I do a private test myself as I do need to send off for vit d test as they def will not do that . Sorry if iv confused you I just want to get well and will take whatever I need . It would be so much more helpful to get results then I could go from there !

[clivealive Forum Support]

Hi Andypandy30 I see you have had a lot of advice from other members of this and other communities and it is really difficult to know what to suggest re getting past the receptionist or getting earlier appointments with your doctor.

Testing your B12 levels once injections have started is pretty pointless unless the result comes out low.

The NICE guidelines for the treatment of B12 Deficiency with neurological symptoms tells doctors to give hydroxocobamalin 1mg injections every other day "until there is no further improvement" which instruction clearly your doctor hasn't followed. How you convey this to your doctor is the difficult bit.

List your symptoms, present them to your doctor. If possible take someone with you who can confirm your symptoms as it is less likely that your doctor will pooh pooh or dismiss them in front of a witness.

Click on the following link. Click on "Scenario Management" Scroll down in the box to "Treatment of B12 Deficiency", print and show this to your doctor.

google.co.uk/url?sa=t&rct=j...

I realise and empathise that this will be difficult having had to do it myself but for the sake of your health you need to make a stand.

Write down what you want to say and keep to the script as it is so easy to forget vital things when face to face.

I wish you well.

[Andypandy30 in reply to clivealive]

Thank you so much Clive yes this is an ongoing problem . I'm still not right but am trying to help myself . I have to wait until Friday to even make an appointment for next week . I will read over your info re b12 just wanted to thank you but yes I never thought of that that even if the results had improved I need to tell her of these symptoms . I genuinely felt the best I have in a long time while on these . I felt I was getting my life back until I was informed I would not get another for 3 months ! So it panicked me a bit but I know my own body and know these symptoms are returning . I suffered a lot. Before she agreed to testing and then she did not follow guidelines as you said . In the beginning a week was too long for me to wait . I asked the nurse if there was a specific test to see if I had pernicious anaemia as I don't know why I'm low in b12 and she said no ! Thank you for your kindness x

[clivealive Forum Support in reply to Andypandy30]

It sounds like your nurse needs educating too - of course there is a test for P.A.

Your low B12 may have something to do with your thyroid problems as that is one of the autoimmune diseases that can put you at risk but there are also many other possible causes including poor diet, certain medications, gastric surgery etc etc and you can be B12 deficient without having P.A.

Good on you for having a go - it's your body and if you win this battle you'll be helping the next patient along who has the same problems.

[Andypandy30 in reply to clivealive]

Yes Clive I agree . So frustrating . I do believe I may have pernicious anaemia as I have a history of it in the family . Will let you know how I get on 😉

[Andypandy30 in reply to Andypandy30]

Can I just ask in the meantime what can I do to feel the way the injections make me feel until I get one . What is the best b12 supplementation to take or do tablets not work in same way X

[clivealive Forum Support in reply to Andypandy30]

Personally, as I've had P.A. for 45 years and despite having managed to persuade my doctor to increase my cyanocobamalin B12 injections from every four to now every three weeks I do use a methylcobamalin spray to give me a "boost,.

google.co.uk/aclk?sa=L&ai=D...

I also have taken 1 – Folic Acid 400μg and 1 – Ferrous Fumerate 210mg tablets every day for more years than I can remember as they work together with the B12 to make red blood cells.

As I said at the start this is a personal to me thing as I'm not medically trained but you will not be doing yourself any harm by supplementing your B12 as you cannot overdose on it any excess is excreted via your urine.

[Andypandy30 in reply to clivealive]

Thank you Clive. Managed to get an app for wed morn I will be ready to fight my corner . I am going to ask for the test to see if I have pa then push my point from there re my symptoms since last in2 weeks ago but now coming back . I will look into the spray I see some recommend jarrows so will decide and try and get through on one of these X

[JMN2017]

I'm sure you already know, but just in case, the receptionist is just that, not a medically qualified person so s/he shouldn't be dictating to you re medical advice.

Is it possible to ask for a GP to phone you? It's nothing to do with the receptionist as to why you wish to talk to your GP Otherwise, can you write a letter, seal the envelope and mark it Private and Confidential? Hopefully, reception won't open it - again, as it's addressed to your GP and marked P & C, s/he has no business to open it/read it.

Having said that, it sounds as if the receptionist runs the whole show at your surgery. Maybe change surgery???

Just thinking up some suggestions. Apologies, though, if they're not helpful

[Andypandy30 in reply to JMN2017]

Thank you for reply . No gp will not ring to speak ! And also I had an issue before where receptionist opened my letter . Yes I want to change surgery so that is next step . Though your help is appreciated x

[pugdogs10]

Your Receptionist sounds like a "right madam" who needs putting in her place.

Just for your info there is some excellent info on Thyroid UK. If you go on the web site and click onto ACCESSING YOUR MEDICAL RECORDS ...it is very helpful and also advises on getting blood results.

Sorry I m not very good at sending links, they never seem to work for me.

[Andypandy30 in reply to pugdogs10]

Agreed !! I will have a look at the thyroid uk thank you c