Hi, I was diagnosed with B12d 5 years ago. I had loading doses then quarterly injections. Last October I asked for all my previous blood test results and my tests from 5 years ago shows B12 was 156 (at that point, I had already been monitored for 2 years). It also showed folate was under range, but this was never mentioned to me and not treated.
Last year, I became more aware of tingling and buzzing in my feet. I brought all my symptoms up with another GP, she just took some blood tests and left it at that. I'd recently had my b12 injection so b12 showed up >1000.
The buzzing and tingling has gotten worse, spreading to both feet and up legs, and also numb big toes.
I went back to GP, a different one this time. I told her everything. She ordered blood tests. B12 was 548 and folate at bottom of range, ferritin in bottom 1/4. MCH is consistently over range. I told GP my b12 levels need to be maintained over >1000 to repair neuro damage. She laughed and asked where I'd heard that from. I told her about an amazing Facebook group. She laughed again. I mentioned having b12 injections every other day until there is no further improvement, then every 2 months. She laughed again and said I was wrong. She got out her BSCH? guide book and it said exactly what I'd just said! She then said that there needs to be a cut-off point for loading doses, then wouldn't discus it any further! She is sending me to gastro for my malabsorption and said all my questions would be better answered there. She diagnosed me with CFS. I'm not sure where to go with this now, will gastro be helpful?
I was wondering whether it is worth taking the holo tc or mma blood tests so I have a bit more info to give my GP and help me understand what's going on. my last B12 injection was 4 months ago, I wanted a clear blood test. I've just bought some spatone and methylfolate but haven't started on them yet!
I have Ulcerative colitis and mild asthma. Also mthfr gene.
Thanks for any help in advance!
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JoJ0
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Having both ulcerative colitis and the mthfr gene mutation should leave no doubt whatsoever that you need injections. I think I've read that the mthfr mutation also means that you need to supplement folic acid as well. That gene mutation causes a pathway problem so it is no wonder that you are not feeling the full benefit. Methylcobalamin may be a better form of B12 for you because it requires less conversion in the body than cyano or hydroxo. Because of the gene mutation/pathway problems, you are likely to need more B12 than average. If your ulcerative colitis is not well controlled and you are continuing to have flares, then it is extremely unlikely that you could absorb much B12 through food.
I hope the gastro has a good understanding of the gene mutation issue. If so, they will probably be amenable to increasing the injection frequency.
Thank you for your reply Galixie! You have just confirmed everything for me. I have no idea how to explain this to my GP. When I said I think I need more b12 injections, she said something about it being the done thing for Hollywood wives for 'pep me ups' She hasn't got s clue.
I have some methyl folate tablets which I'll start soon. I also have methylcobalamin sublinguals as a little extra.
Do you see any point in having holo TC or mma tests at this point? I'd have to pay privately. Thanks again for your response
Those tests are usually not very helpful once you've started supplementing. They're more helpful beforehand. In my opinion, it's not worth it to go off of B12 for months in order to get those tests done. But that is just my thinking.
How dismissive. That nonsense about celebrities using B12 inappropriately really pisses me off. It makes it harder for those of us who need it. Unbelievable that B12 being a pep me up is propagated by a doctor! Vital amines are needed for a reason!
MTHFR means that you have problems converting B12 and B9 to methylated forms and this may well be what is causing the neuropathy to progress. You might find that taking methyl cobalamin rather than hydroxocobalamin - and using a methylated form of B9/folate helps. Some people do experience problems with the methylated artificial forms so best to take it slowly when you start.
Sorry your GP is so narrow minded and dismissive - really what you don't need.
Hi Gambit62, thanks for your reply! I've picked up some methyl folate but haven't yet started taking it, also some spatone as ferritin was fairly low. I have methylcobalamin sublinguals, yet to start taking them. I went on a bit of a spree after my appointment with GP, so well stocked. I was due my injection 4 weeks ago but wanted to see what my level is down to, also was thinking of having holo TC blood test. I'm not sure methylcobalamin injections are available in the UK? Doubt my GP would entertain the idea of them
You are right that methyl cobalamin injections aren't available on the NHS. You could see if another format of delivery suits you.
I find nasal sprays work quite well for me but it isn't the case for everyone.
I don't use injectible methyl but you can buy dried methyl but you then have the problem of getting hold of injectible saline - have to do that from outside the UK because it is injectible.
You could also try b12d.org - but if you do please make a generous donation as their funding is very close to the edge - think you can get to an option to request the B12 by going through the donation section - but I'm not sure because it isn't something I do.
I source injectible hydroxo from germany - but not sure if you can also do the same with methyl - sure there are others who would know.
You will need to be off your B12 for some time to get accurate MMA and Homocysteine tests......also bare in mind those metabolites can fluctuate anyway, so might be in range when you have the test done ( more evidence for them to say there's nothing wrong) .
I rotate injections of Hydrox, methyl and adeno....... I find it suits me best. ( as well as Solgar's Folate tablets ).
"She got out her BSCH? guide book and it said exactly what I'd just said!"
I'm guessing that the GP may have looked at a copy of the BNF (British National Formulary), the latest one has a blue cover.The relevant info is in Chapter 9 Section 1.2.
I think that some GPs will not have read the latest BCSH Cobalamin and Folate guidelines, they came out in 2014.
Perhaps your GP would find it helpful to have a copy of the "BCSH Cobalamin and Folate guidelines" or at the very least a copy of page 29 which is a diagnosis flowchart.
The PAS (Pernicious Anaemia Society) has a useful summary of the BCSH guidelines in the library section on their website. Did you ever have IF (Intrinsic Factor) tests?
You could check with your local CCG (Clinical Commmisioning Group) whether your area is following the BCSH guidelines. Google "your county/area CCG" and you should find contact details.
"She diagnosed me with CFS"
There's a post on Martyn Hooper's blog on the PAS website where he says that he will be attending a meeting which discusses the issue of people with undiagnosed PA being labelled as having CFS.
While I believe that there is a genuine illness called ME/CFS I think too many people are labelled with CFS because some medics do not carry out the necessary tests to exclude other conditions and I think testing B12, ferritin, folate and a full blood count should be part of these exclusion tests.
I have also had labels of CFS and fibromyalgia but am convinced B12 is the issue due to previous B12 deficiency, high MCH and symptoms that match those of PA.
OMG! What an absolute comedy of errors! You really should make a formal complaint about all of this, as it is the only way to concentrate the GPs mind. All the paperwork in the world will amount to nothing if she cannot be bothered to read any of it. It is because of the lack of training that I have become involved with a group of other sufferers in SE Scotland. Our aim is to educate doctors. Did you know that docs have to do a certain number of hours retraining every year? And that the cost of that has to come from their own pockets? As a result it stands to reason that the kind of retraining they take will match how much they are prepared to spend, along with whatever their pet interest is. We are aiming to raise enough money, initially, to train 14 GPs and medics in B12 def. A one day course with accredited trainers will cost us £2366 plus extra for venue and lunch. If we are successful (and we are determined and sick enough to succeed) then we want to roll it out across the UK. We are also aiming to eventually have a national raffle, along the lines of the PDSA or Cancer Research.
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