Hi, well my last serum b12 was 213. I ordered the active b12, folate and ferritin blood test from blue horizon. My results were..
Active b12 52
Folate 4.8
Ferritin 19
I'm an absolute mess. Been under neurology for a year had ms, als, lupus and so on ruled out.
Im feeling very ill. Weak, diarrhoea, bloated, nausea, twitches/spasms, tinnitus, collapses/faints, excessive/urgent urination and bowel movements, muscle pain really bad.
Consultant not seeing me till Oct so went to gp who has up till now been great. She wouldn't hear of it being anything to do with b12. Said 213 is just as normal as someone 900. Absolutely not that she said.
So no extra tests to check intrinsic factor or paracial cell thing.
No celiac test to see about my diarrhoea and stomach pain. Nothing.
I cried my eyes out. I don't know what to do. My awful thoughts are back because I can't go on like this. I'm falling asleep in charge of my toddler, no love life with hubby as I'm so exhausted and in pain, list my job. Essentially I'm disabled and housebound and medical world ignoring me as they don't believe in b12 issues.
Please someone help me, tell me what to do. I'm sinking xx
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GEM_lou78
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Can you pay to see a haematologist privately? Its not that expensive I found, but it was a long time ago.
With out ref ranges of normal used by horizon's lab I can not really say much, it just looks like your Active b12 52 is borderline (may need to test MMA), Folate 4.8 on the low side but still OK, Ferritin 19 to low.
Are you on iron tablets? Do you know the size of your MCV, have you got copies of blood tests?
I will add the link to your previous post that has far more info in it see:
Its very difficult for me to say much, in the end you seem to have a lot of other issues as well, it may not be a B12 problem for you, and seeing a gastro could help, but it all will take time..sorry I can not give you something more straight forward, its just B12 may help, but your ferritin is the one that really looks to low so you should first have an iron def addressed it looks like, and a haematologist is the one who will know most,
Your results are all so near being deficient, the NHS will just wait until you are deficient sadly enough, before you would get treatment, and that means months more of struggling on. A haematologist should not cost you more than say £150,-,, I rung the local private clinic in my area (but you can also just look online) and ask to speak to a haematologist, who (2006) was happy to see me for an hour for £100,-. It helped me a lot, but I can not say it will help you, I just hope it will,
I really feel for you. I really struggle and I don't have young children, I'm astounded , whether it's B12 or something else, that we are left feeling like this. I hurt every single day, vision bad, and need to sleep lots with no energy , it's not normal but no professional seems to care
I do wish you well and you get your answers and treatment
Have you tried contacting the PAS to see if someone there might be able to help you argue your case with your GP.
I'm really sorry that there is so much ignorance and snootiness when it comes to B12 - like they think vitamins don't count but then vitamins are vital - that's why they have been investigated and studied. It's not as if it is something expensive and it seems rather stupid that they aren't even prepared to try it ... and absolutely disgusting the way those doctors who are prepared to try then seem to get persecuted by the medical establishment, even when the treatment obviously work.
Its difficult to really know what to say on private help because some people find that even when they go private they are dismissed, but I really hope that you manage to get to the bottom of things.
I'm so sorry GEMlou - it's unbelievable and outrageous that you are being left like this and with a young child to care for, when relatively cheap and simple injections could make such a difference,
It is good that you are writing to the consultant and I really hope you will be heard this time. It's also a good idea to contact the PAS, who might be able to make suggestions and advise on the best way to proceed so that no more time is wasted.
Don't forget that we are all behind you and wishing you well.
If I can't get my consultant to do the tests for pernicious anaemia I'm going to start self injecting as I can't carry on.
Hopefully my Gp will arrange an earlier appointment with him as she said she was going to speak to him directly about my case although not with regards to b12 etc.
If he won't I'll have totaled matters into my own hands. X
So sorry to hear what you are going through but sadly not surprised. Gambit's advice about contacting the PAS is good. I have spoken to them on several occasions.
The next website has examples of letters you could send to your GP/consultant. There are e-mail contact details on the site. Perhaps your volunteer could take a look. I've contacted the person who runs the site and they are very sympathetic.
Just to echo Polaris' advice on your other thread...if at all possible take someone with you who is prepared to speak up on your behalf and has read up about B12 deficiency, in case you are too tired to.
I'd take copies of the following documents to your next consultation/appt with the relevant bits circled
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
Hi Gem, your symptoms really do sound more like Coeliac disease than B12, per se, although your B12 is far too low, especially with all your symptoms. I would insist on coeliac testing, or perhaps better still, insist on seeing a gastroenterologist. You will have more luck getting thorough testing form them, hopefully. It's possible that you have a coeliac disorder which is causing B12 malabsorption. Either way, you need to start somewhere.
Perhaps if you set yourself one goal, to see a gastroenterologist, or to get coeliac tests, then just stick to that. If you pursue one thing at a time, instead of inundating docs with lots of symptoms, you usually fare better. The poor things are easily confused!
Hi, I did a celiac test two days ago at home (ordered it online) it was negative.
My volunteer is from homestart she's fab, she's been researching and printing guidelines off.
I will contact pas and look at purchasing the books.
I've started taking folic acid 5mg a day as my folate was 4.8 with 4.6 being the lower range. I've been told this may take my b12 under the threshold for them to treat me so will watch symptoms and get them to retest me in a few weeks.
I've been like this a yr and can't carry on this way...I'll do it myself if no help after retest and contacting pas xx
Good luck. I hope you find the help you need. My heart goes out to you.
It may be worth you looking at the Coeliac UK website and others. It is possible to test negative and still have Coeliac's disease. It mentions about this on NHS Choices
"I'll have a look at how much a private haematologist app would be"
My advice would be to choose who you see very carefully. I spent hundreds of pounds on seeing a private haematologist and feel the money was wasted.
Have you asked your family if they know of any relatives (living or deceased) who have/had PA or B12 deficiency or Coeliac's disease or any auto-immune conditions? There can sometimes be a genetic link.
If your docs ruled out lupus and MS, did they rule out Hughes syndrome?
I've never heard of hughes syndrome. My ana lupus test was negative and although I have 'several high frequency foci' on brain mri apparently they weren't in places that would be diagnostic.
I'll talk to family to see. My mum has psoriatic arthritis, brothers have skin psoriasi.
I think I'll just end up self treating to be honest. I can't take anymore.
One of the symptoms that the PAS lists as indicators of PA/B12 defic is psoriasis.
Have your relatives with psoriasis ever had their B12, folate, ferritin, full blood count checked? If they have they should be able to get paper copies of these results, may be a charge for this.
Does your GP know your relatives have psoriasis? I was told by a rheumy that it is possible to have psoriatic arthritis without psoriasis. I was checked for this when I mentioned a close relative had psoriasis.
One of the characteristic signs of Hughes is livedo reticularis. Livedo is associated with many auto-immune conditions including pernicious anaemia, MS, fibromyalgia plus others.
I only started supplementing myself when I felt I had done everything I could to get help from my GP. I do not have a diagnosis of PA but have many of the symptoms and have had B12 deficiency in the past.
Once you supplement yourself with B12 it will invalidate many of the tests for PA/B12 D that a GP might do and it might be hard to get a diagnosis from the NHS.
Has your GP checked levels of other vitamins? especially Vitamin D? Vitamin D deficiency is often associated with Vitamin B12 deficiency.
How are you these days Gem_lou? I had an idle few minutes and was just going through old posts when yours caught my eye, and I just wondered how you got on.
Hi, well got nowhere with gp so I started my own jabs (nurse neighbour did first one in case of reaction) I'm following the every other day guidelines.
I've since received blood results from hospital saying I've got the lowest vit c level possible and low vit d.
So I've been started on treatment for those by doc who now says 'oh your vit b12 was low too, think we should refer you to gastroenterology to check for malabsorpsion issues'
So hopefully they will sort me out as I can honestly say I've felt like I'm dying and not in a melodramatic way.
My migraine issues have been really bad tbe last few weeks so not been on here much.
Hoping all the treatment starts making me feel better soon although I understand it can take time.
Good you are getting sorted. My GP wouldn't refer me to gastroenterologist , so it is good yours is. Hopefully you will soon start to feel a lot better! All the best!
Hi, I know this is waaaay old by now, but given that I have only just found this page what I'm about to post might help someone:
I found out about B12 deficiency and fatigue whilst writing my psychology dissertation in 2012. It was "A qualitative investigation of the emotional impact of living with chronic unseen medical conditions". I'll say a little about it at the end because I'm sure some will find it interesting.
Anyway, I was diagnosed with hypermobility syndrome in 2008, started suffering from fatigue in 2010, and by the time I was writing my dissertation I was in a living hell with it; to the extent that it actually took me until 2014 to finally finish and graduate. It was not by chance that one of my participants also has hypermobility syndrome but I didn't know until I interviwed her that she had chronic fatigue that was managed by B12 injections.
I went off and did some serious research using my uni access to medical databases, and went to my GP with a raft of research papers. She was taken aback, to say the least, because GPs today are only too familiar with people arriving with printouts from Doctor Google, so she was dismissive until she looked and saw that I knew my onions. HOWEVER, she still refused to give me more than 1 injection a month, and the research clearly shows that when you're first diagnosed you need injections every few days to build up the liver stocks then increase the time between injections until you find your individual need. Coincidentally my personal frequency need is about four weeks, but that was not much good before my levels were elevated to normal - which, incidentally, is much higher in Japan where they consider the UK level for normal to be just about acceptable as a lower limit.
So I had to buy online an learn to inject, but knowing little about the different types of cobalamine at the time, I bought cyano, as opposed to the hydro the doctor had given me. I used the cyano for around a year, and compared to being like death warmed up most of the time the cyano was ok, but it was not great. Then I got a new GP, and by this time I had found the latest guidelines from the British Society for Haemotology (they've recently changed their name - used to the the council for ethics in haemotology, or some such).
The combination of the guidlienes from a British medical authority published not long before - May 2014 - and that this GP was younger and more progressive meant he was happy to put my on repeat for Hydro, so I can now get it whenever I need it, and to be honest, I find it does the job; especially compared to the cyano.
Of course I'm not taking it for neurological symptoms specifically, but I did have brain fogs, memory problems, tingling in my extremities and frequenty shooting painds across my scalp and face - almost always on the right side of my head. These all went very quickly once I began the injections, and whilst I would like to try adenosylcobalamin because it's apparently the best for energy, from what I now understand about how the body converts whatever form you inject, as long as you stay clear of cyano, it's all much the same. Of course I'm not a clinician but my grasp of the processes involved is that when you're talking about one injection a month, that it has to convert from one form to another and use energy to do that, it's really not a major deal as long as your stocks are high.
But I think I'm replying to someone elses question there, so in direct response to the point about GPs flat refusing to give B12 at all, this was the magic bullet for me:
I've just skimmed the first few pages and can't see any reference to it, but back in 2014 is definitely stated that the first line blood test has an inaccuracy/false positve rate of up to 35%, which is plain absurd. What the guidance definitely does say as plain as day on page one or two is that if symptoms persist even when the tests say there is no issue, go by the symtoms not the test results. The key thing is that there is no lethal dose of B12; you would literally have to inject several litres and drown your cells in order to do harm, and it would only be the sheer volume of fluid doing damage not the B12.
Ultimately if anyone has this problem and are totally convinced it's a B12 issue but your GP won't give you injections, you have three options several options: most straight forward is change surgeries. I did this very recently because I also have a chronic anxiety issue and my old GP was great on physical health but rubbish with mental health, so I research local GPs online, looked through the areas of special interest of all the GPs at each surgery, and picked the right one for my issues.
You could also go to PALS - patient advice and liaison service - just search online for PALS plus your location... They can help mediate and whilst there's no guarantee, it can work and at the very least it stops you feeling so alone in your fight.
The other options are a bit drastic because you can report any doctor to the general medical council if their conduct is illegal or unethical or you simply believe it to be so - and bear in mind that it is part of the NHS charter that we receive appropriate treatment (although tories have probably wiped their arses with the charter by now, but all the same....)
And ultimately you can file a civil suit but that is costly, stressful, time consuming and unless there is a clear cut and dried case of misconduct, you are not likely to achieve much other than making yourself ill. But it's an option.
Personally I would go with options 1 AND 3. I am actually in the process of collecting both my thoughts and data to make several complaits against three GPs at my previous practice because they were worse than useless they were dangerous...
Hope this has helped someone.
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