B12 test doctors and told normal

[Ndobins]

Hi I went for a blood test on Tuesday , as some know I'd done one from Blue horizon which showed I was in sufficient with a amount of 170. Range is 145-250 , I phoned for the results and was told " normal no further action" so I just drove and got a copy of the result . Check this out, any advice.? Thank u x

[fbirder]

That value is low. Do you have any symptoms, especially neuropathy (numbness or pins and needles in feet or hands)? Have you had a full blood count to check for large red blood cells (macrocytosis).

Check out the pinned post for info from the PAS. There's a symptom checklist in there. Tick off any that apply to you and take it along to your doc and ask him to consider treatment.

You might also ask for an MMA test. Methylmalonic acid is a chemical used up in one of the reactions mediated by B12. A high value is an indicator of a deficiency.

[Ndobins in reply to fbirder]

I have lots of symptoms, dizzy when standing, headache , fatigue , low mood. Have an appointment for Monday. It's gone down from 512 in April to 175 last week now 162... I told dr all my symptoms and he didn't even care.. I've been getting heart palpitations and thought my thyroid was over active! Those results all back spot on. I struggle to get out of bed most days. The thyroid group said I need to be at 800 b12 for my thyroid medication to be effective. Thank u x

[fbirder in reply to Ndobins]

So, on Monday you need to ask for a full blood count including MCV (mean cell volume) and RDW (Red cell Distribution Width). The first should detect large cells, unless you also have iron deficiency anaemia (which caused small cells). The RDW tells you if the MCV is normal because you have normal red cells or normal because you have a mixture of big and small cells.

You should also ask for an MMA test and a test for anti-IF antibodies (AFAB). Intrinsic Factor (IF) is what is needed to carry B12 out of the gut and into the blood.

[Ndobins in reply to fbirder]

Ok thank u. How do I locate pinned posts? I can't remember ?!

[fbirder in reply to Ndobins]

On a proper computer they're over on the right of the screen. On a phone I think they're at the bottom.

[Ndobins in reply to fbirder]

Bottom your right thank u

[Caren77 in reply to Ndobins]

Hi Ndobins

I was just googling reasons for iron deficiency and came across your post. I started feeling tired dizzy heart palpitations etc in April 2016. The doctors were not interested and took bloods - I think to just fob me off - my bloods were slightly low (8 which it should be 12) so they told me not further action. Well after numerous visits to the GP and being fobbed off - I finally went in in July 2016 sat down in the GP office a refused to move until someone DID SOMETHING!! I couldn't wake up in the mornings, I was struggling to walk up stairs - nearly passing out often. Anyway they did another blood test because I simply insisted until they did something and my blood count had dropped to 4!!! No wonder I was feeling as rough! In between all of this I was still decorating a house for sale, working full time and managing a horse stabled 13 miles away. My point is, it's quite amazing how hard you can push yourself without realising just how bad a situation you are in. Do what I did if your GP is behaving in an unethical manner - SIT DOWN AMD INSIST SOMETHING IS DONE!! You know your body and how you function for yourself and therefore you know when you are not feeling yourself!! Don't let them fob you off! As you might be able to tell, I'm really narked off! I know these GP's have a lot of work and patients but an aneamic count of 4 could've actually been very serious - just because the gp's thought I was making things up. They should be ashamed of themselves! Sorry rant over! Go in armed with the information from the previous poster and INSIST on getting more tests done!

Good luck

[Ndobins in reply to Caren77]

Hi lovely, I have 3horses at home and 3 year old 3 cats and 2 rabbits. Your right, I just keep going, not anymore , I'm going in after them now!!! Haha. I will let u all know how I go 😊💪 xx

[Gambit62 Administrator]

I'd also draw your doctors attention to the comments on the printout and ask him why he hasn't actually evaluated your symptoms and started treatment as you have a significant clinical presentation. You might want to write to the practice as well at some point, pointing out the same.

You may find this blog interesting and, if you aren't already a member of the PAS you might want to consider joining.

martynhooper.com/2016/09/23...

[Ndobins in reply to Gambit62]

Thank u, I'm going in Monday ready to say my bit. I've felt like this for 2 years and was told my thyroid was underactive, fine, then put on Prozac for postnatal depression, seems this was bubbling under the surface , does explain why I've picked up but not the amount I should of, my thyroid numbers are great now, but I still feel rubbish .... mmmmm * sigh*

[Hidden in reply to Ndobins]

Might I suggest you write two condensed paragraphs outlining your case and evidence amassed? I found this great as I started with half a page and whittled it down. Short, assertive backed by reasonable and supported request. Remember to take that witness with you, could be male (sorry, I know) to get better result. I found I often got sidetracked if ad libbing and this went right to the point and I got what I was after. Result!

Hope it helps you Ndobins!

Regards

⚽️

Ps keep a copy to give practice manager if you have to take that route. Perfectly polite reasonable request.

[Ndobins in reply to Hidden]

Back of the net!!!

Yes great idea, and I will take my husband , lol

I will do this 💪

Thanks ladies x

[Baggy8]

Just to back up what's been suggested. When we are struggling with trying to find the words, and to maintain our train of thought, it's impossible to put a reasoned argument to a GP. This week I took several days putting together a letter, based on the one suggested on b12deficiency.info including all the links suggested. I also printed off fbirders summary. I sent one to the GP and one to the practice manager (they won't take emails!). Within an hour I received a call from the receptionist saying that the doctor had agreed to my request for more frequent injections. I can only hope that this will work for you Ndobins. Good luck 😋

[Ndobins in reply to Baggy8]

Where will I find the summary? This is all great thank u , feeling confident. It's neglect at the end of the day . So glad that worked for u, hope it does for me 👍😊🙌

[Sleepybunny in reply to Ndobins]

If you click on this link fbirder

it will take you to fbirder's profile page. There are a few sentences where he introduces himself and there is a link that says "Read More"

If you click on "Read More" it shows a link to his summary.

There is also a link in third pinned post on this forum. On a phone the pinned posts are probably at the bottom of the page, if using a desk top computer probably on teh right of the page.

[Sleepybunny]

If i go to appts where b12 might be disussed, I take the following in my bag just in case needed.

1) Page 8 and page 29 from "BCSH Cobalamin and Folate guidelines". page 8 has details of recommended B12 treatment, page 29 shows recommended process GPs should follow with b12 deficient patients. Sometimes I take whole document.

2) The summary fbirder compiled. LInks on fbirder's profile page and in third pinned post. I have been shocked by the lack of knowledge about B12 deficiency amongst GPs and consultants.

3) If i'm feeling generous I take a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" to give the person if they show real interest.

4) I take a list of symptoms including all my neurological symptoms plus a brief general medical history including evidence of B12 deficiency eg blood results

I think it's a very good idea to take someone with you especially if they read up about B12 and are willing to speak up for you if necessary. I also think having a witness is helpful.

Good luck for Monday.

Might be helpful to talk to PAS before Monday.

pernicious-anaemia-society....

PAS tel no [phone]

Office open from 8am till 2pm every day except Sundays and some holidays.

[Ndobins in reply to Sleepybunny]

Wow you are all fabulous , hubby coming, and he knows as much as me as I haven't stopped talking about it all week, he was angry yesterday too as we want another baby and the doctors know that and still didn't suggest injections 🙊

I feel confident now x

[Withattitude]

Really hope you get a good result. Let us know.

[jillc39]

do you have problems with neuropathy?

[Ndobins in reply to jillc39]

I have headaches dizzy forgetfulness and just not with it!

[Ndobins]

Good morning ladies

Soooo just left doctors, she said the doctors look at results and they didn't call me back as my FBC previously was fine!! I told her that I should of been called cos of what is written under my results. And that because I have neuro symptoms they should test IF and another full blood count, at which point I burst into tears. told her we wanted another baby but how can I! She mentioned range!! Blah blah, I told her to read the guidelines 💪

Anyway just had a full blood count done b12 and folate plus IF. So we will see , I really stood my ground and told her they should go on symptoms when it's this close not the range!!! Grrrr.

Knowing my luck it will come back as 151, still in range. I'll keep u posted , I did take a letter, but I'll save that for next time, then I'll slap her with it lol 🙊🙊🙊

Xx