Follow up re husbands B12 level 229

[lucylocks]

Hi

Just to follow up from last post.

My husband went for his G.P. appt. and just as we thought G.P. said he was in 'range' (level 229 range 180 - 1100)

We both said yes but bottom of range

His other biochemical test was O.K. just a rise in something (we can't remember the name) the liver produces because he'd fasted before the blood test.

Anyway we both argued he had all the symptoms of B12 deficiency, yes but your in range G.P. replied.

My husband asked me to go to the appt. with him as he said he wouldn't know what to say but he surprised me and the Doctor by saying, look I was an engineer before I retired and if I was working on a machine and it was only working say 22% I know what my boss would say 'get the machine fixed and get it working 100%

so its the same with me, I want my B12 at the top of the range for me to work better, I don't want it that low so I can't work properly,

Guess what, G.P. then decided she could prescribe him supplements then checked in her book what seemed to be ages before mumbling 'oh tablets seemed to have gone out of favour' and the said yes I will prescribe injections.

He had his first one today and also had a blood test for antibodies for PA

Just goes to show if we had gone in and accepted what she said he would never have got them.

Best wishes browny

[Hidden]

This is great news Browny for your husband, nice to hear of a doctor who actually bothered to check the BNF!

[lucylocks in reply to Hidden]

Hi hamster. thanks for your response, we still can't believe G.P. has agreed to them but she is going to monitor him so we can't ask for more than that. Is the BNF the book I said the G.P. looked in ?

Just need to get myself sorted now, had my blood taken for the active B12 test and posted it off yesterday, when I hear something I post again, as the more posts and questions I feel may help others.

[Hidden in reply to lucylocks]

I guess you couldn't convince her to give you some jabs as well while she was at it?! The BNF is the British National Formulary, it contains prescribing information so this is what they read when deciding on medication and dose. Usually completely ignored, or selectively interpreted, when it comes to B12 so you've been lucky I think.

[lucylocks]

Yes I think we have been lucky in respect of my husband, and he is now glad I sit at my laptop and look further into our various ailments to educate myself as if I had not then we would have just gone into the surgery and accepted everything the Doctor said and he would not of got the necessary treatment.

[ashleyd]

Hi you should also get his vitamin D levels checked as well it can also be low with low b12 levels but please go to b12d.org you will find it is also very useful

[lucylocks in reply to ashleyd]

Hi

Yes we were wondering about Vit D he had folate and ferritin tested and both O.K. but Vit D was not tested.

Will have a look at b12d.org, many thanks for your help.

Hope you are doing well with your shots.

Best wishes Elaine

[Jodie91]

I have found this so interesting. I am 22. Last year I was poorly usual symptoms of b12... My count was only 85!! I had 4 injections and follow up blood tests 6 months later all I got was it's fine now you don't need them. Now a year later I feel terrible again.. Went for b12 blood test I'm 297... In range... Googled it and again that's still quite low. Got appointment on Thursday and I might say exactly what your husband said!! I can't cope with feeling like this much longer and just because I'm in range doesn't mean I feel ok x

[lucylocks in reply to Jodie91]

Hi

As far as I'm aware once you have started B12 infections you should get one very three months, for life, especially as you were below range when you started them.

My husband had his original injection, then he went back to another G.P.at the practice for the result of a chest X Ray as he felt he could not get his breath (can be a symptom of B12 deficiency)

X-Ray was fine, then the G.P. persuaded him to take tablets instead of carrying on with the injections, so he agreed to do this but I was really annoyed when he told me and said he should go back and I would go with him, but he will only go if he is forced and he said 'I will see how I go'

I think in you situation you should argue for the injections as you were well below range when you were first diagnosed and even at 297 you are at the low in range, if bottom of range is 180 like my husbands.

Did your G.P. do a test for Pernicious Anaemia?

My husband had the test but it came back negative.

Good luck browny

[Jodie91 in reply to lucylocks]

Hi thanks for your reply. My nan has PA and was untreated for many many years and has dementia I can't help but research and think that May have played a part. My mum is a celiac which took many years to diagnose. She is vit d deficient and b12 also under active thyroid. Last jan 2013 was when my results where 85. I was given 4 injections which gave me migraines they then told me I may be allergic and because my levels should be fine then not to worry.. They tested for intrinsic factor and came back negative so said they didn't know why I was deficient. Never had any other injections since and went back 3 times every time they have said I'm fine nothing wrong. I've lost 7kg in weight and now only weigh 56kg and I'm 5ft7 so not underweight yet but going that way.. Dizziness heart palpitations bruising spots on my tongue and tierdness worse than ever before. Phoned today they said nothing wrong it's normal.. 297. I feel like nobody is listening to how I feel I'm 22 and can't keep going on going to bed at 8.30pm! Thanks Jodie

[Hidden in reply to Jodie91]

Jodie, you likely do have PA as you have such a strong family history, one of the things your doctor should know is that the IF test is only 50% accurate, so you can test negative and still have PA. Did they ever test anti-parietal cells?

It also sounds to me as though you are folate deficient as well, did you ever have folate tested? Not having enough folate during the loading dose can cause the headaches you describe, I had a constant migraine for the entire 2 weeks (felt like). My folate was low and I was on 5mg folic acid at the same time. I'm very well now, but if I cut back on folate my headaches and sore tongue return (I do my own B12 weekly).

Iron levels are also very important, so please try and get ferritin checked.

Have you been screened for Coeliac Disease as well, since your Mum has it? I suspect gluten is a player behind a lot of autoimmune illness, I tested negative but have still given it up, and feel all the better for it.

Please read around this link:

b12deficiency.info

And some support groups here:

facebook.com/groups/1749289...

pernicious-anaemia-society....

b12d.org/

H x

[lucylocks]

Hi

You can buy sublingual supplements or lozenges that dissolve under your tongue and go straight into your blood stream, I got my husband some lozenges from Amazon called Jarrow 1000mg, just hold under tongue and let it dissolve. He has only just started them but I have read on this forum and on the thyroid forum (I have underactive thyroid) that they are very good and do bring your levels up.

Your poor Nan left untreated for years, auto immune diseases like your Nans and Mums do run in families.

I would go back to your Doctors and tell him this and insist your symptoms are B12 deficient, if he still will not prescribe the injections try the lozenges.

Best wishes browny