One small victory!!: If people havnt... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

One small victory!!

Rachel-285 profile image
12 Replies

If people havnt read my previous post basically I had a hair strand tested for intolerances privately and this showed I was lacking B12 (amongst others Vit D and magnesium) and when I mentioned this to my doctor she sent me for a B12 blood test. My result was 206 (range 200 to 800) and was classed as normal but after doing my research I have a lot of the symptoms and now believe I have been wrongly diagnosed with depression. I wrote a letter to my GP prior to my appointment today raising my concerns about my B12 being low and causing all the symptoms I was displaying. She has agreed today to give me a 3 injections per week for 2 weeks and then I have to wait a month before making an appointment to see her again and discus if there has been any improvement before she will agree to 1 injection every 3 months. I feel so relieved as I really feel this should improve my quality of life dramatically but she has made it clear she does not agree that low B12 is the cause (although not offering any other suggestions, I think she would say some are caused by my depression and worries I refuse to accept the diagnosis of depression) and has only agreed to a trial because it is inexpensive and will not do me any physical harm but she made it clear she is concerned for my mental health if this does not improve my symptoms.

Although I have won the battle I have not yet won the war...

Can anybody tell me how soon after starting the loading dose they started to feel any improvement?

Thanks

Written by
Rachel-285 profile image
Rachel-285
To view profiles and participate in discussions please or .
Read more about...
12 Replies
123harry profile image
123harry

hi sorry lm just curious to know where you got your hair strand test done l am like you new to this have got iron def vit d def and b12 of 140 with no luck at the docs for any b12 treatment l requested calcium and vit c test also but they said no, l am using Holland and barret spray and patches but iv also ordered the lozenges as they are supposed to be good as an inbetween pep up l am unfortunately going to have to self inject b12d.org are also quite a good website loads of more knowledgeable people on here though good luck

Rachel-285 profile image
Rachel-285 in reply to123harry

Hi, I had the hair test done through avenue house therapies but it wasn't a test specifically for vitamin and mineral deficiencies it was for an allergy and intolerance test but the deficiencys were flagged up in this. This is the reason I researched into B12 deficiency and felt it made a whole lot of sense when comparing the symptoms to how I am feeling.

123harry profile image
123harry in reply toRachel-285

hi thank you for your reply l am seeing some differences in taking oral supplements so hope you start to feel better my surgery does not seem to do tests unless they absolutely have to which lm starting to see more and more of unfortunately as others seem to be on here what a great test to have done going to have a look now thanks

in reply to123harry

There is no scientific basis behind hair strand testing for intolerance's or allergies. I would save your money. This link explains the only way to test.

allergyuk.org/food-intolera...

fbirder profile image
fbirder

Well done you!

Just make sure she doesn't determine your future course of treatment by testing for B12 again after the month wait. It would be pointless as your levels would be high from the jabs.

One would hope that your symptoms should be improved 1 month after loading doses. I know some of mine were definitely better.

If it doesn't improve your symptoms you could try asking for a methylmalonic acid (MMA) blood test. This will tell you if your B12 is actually getting into the cell and doing its job properly.

Gambit62 profile image
Gambit62Administrator

The best thing to do is keep your list of B12 symptoms and mark changes as they occur.

You may notice an improvement of some symptoms quite quickly - but the only way to know for sure is to monitor things quite quickly. It isn't uncommon for symptoms to then return well before 3 months is up so worth tracking everything.

Also possible that your immune system may start kicking in or go into overdrive after not being very responsible for a while and as a lot of the symptoms we associate with being ill are actually the immune system trying to clear an infection some people do feel worse before they feel better - I remember having a real stinker of a cold just after I started treating myself ... whole runny nose job - something that I hadn't had for a while ... felt rotten but also felt as if my immune system was getting back on track after years of just feeling meh when it came to colds.

I really don't understand doctors and depression - depression is really a label for a load of symptoms that could have a range of causes - B12 being one - but it just seems to have become a label that's applied, prescription written for anti-depressants and that's it - no actually looking for the cause. Pretty similar with high blood pressure. Really taking treating symptoms a lot too far if you ask me.

Hope that things go well with the trial.

clivealive profile image
clivealiveForum Support

Well done Rachel-285 I wish you well.

Retren profile image
Retren

I do not understand how so many patients presenting with similar symptoms do not raise a red flag with doctors.

Cooper74 profile image
Cooper74

Hi I'm in the same boat (b12 was 215). Am absolutely NOT prepared to accept a diagnosis of depression when for a start I haven't found any clear evidence that depression causes low b12, folate, ferritin AND Vit D yet plenty of evidence of deficiencies in these causing depression! Depression and anxiety are SYMPTOMS not causes. I have had my loading doses, all 6 and it is only the last few days I've felt a bit better. Now on the wait for my next one in 3 months so will see how long I stay like this......

Rachel-285 profile image
Rachel-285 in reply toCooper74

It's good to know I'm not alone in feeling this way. The constant exhaustion is having such a negative effect on my social life and work right now and I simply can't continue like this. As the doctor has made it clear she has her doubts I can only hope I'm right that the injections will have an improvement. My only worry now is that the 6 loading doses aren't enough to show any improvement and she refuses to continue the 3 monthly injections but I can only wait and see...

asaund profile image
asaund

I found my mood improved very quickly, irritability and weepiness reduced greatly, my joint muscle pain improved as did my sleep. My concentration was much better and memory better than it was. My tinnitus and pins and needles and numbness went into overdrive though. I am on alternate days injections again and referred to a neurologist. Everyone seems to react differently, but keeping a diary has helped in working with my GP. I still have bad days so it is a bit of a rollercoaster

blondie2505 profile image
blondie2505

I hope you are doing well..I noticed almost immediately that I felt better but it has now been just over two years since I have been diagnosed with pernicious anaemia... but short lived and every time I went back to the docs to complain with new and occurring symptoms they kept trying to tell me it was all in my head and that I need to go on anti depressants .. it bothers me so much that doctors dont realise that low b12 actually causes depression among all the other physical symptoms.. but because your being injected they refuse to believe you can still be deficient. With lack of understanding and knowledge or support it brought me here through doing my own research in order for support and help. Sorry this may not be much help im just sharing my experience with you..you've got to keep pesturing I managed to get mine down to every eight weeks with persistsnce.

Not what you're looking for?

You may also like...

B12 frequency-a small victory?

I wrote a rant back in may entitled B12 frequency .I moaned and groaned about my daughter who get...
beew profile image

Update on blood test - sorry long post

HI I finally managed to get back to the doctors to have repeat test of B12/folate. They came back...
Duffy26 profile image

Update - Victory is mine!

Hi all, I dont post often but have done a couple of times for advice so thought I would update my...
gemssea profile image

Help Understanding blood results and getting help from NHS

Hi, I have been reading a lot of information regarding B12 deficiency since my doctor request...
Rachel-285 profile image

Therapeutic trial - how do I know if it's working?!

Hi all, I posted before (https://healthunlocked.com/pasoc/posts/136700379/stunned-in-a-good-way)...
ktwing profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.