Vitamin b12 deficiency

Andiegiggles

I never posted on an online page before so I'm hoping that I'm doing this right!

I've just recently (5weeks this week) being diagnosed as vitamin b12 deficient and this week will see me having my 5th injection and I do not feel better I feel worse. Headaches, noticed my eyesight has been badly effected, I'm extremely exhausted all the time and my eyes are very dry and itchy and I'm always freezing cold. Also a lot more symptoms too many to list lol. The only thing that seems to have improved is the loss of sensation and pins and needles in my hands and feet but both are still very itchy.

No one else I know of suffers from vit b12 deficiency so I'm basically lost on how this has happened. I'm not a vegetarian or anything I eat meat and eat healthy. (Not religiously though).

When diagnosed I got a call from my GP's surgery and was told my levels were critically low and had to be started on injections that day. I didn't know to ask what my levels were but from reading older posts on here I know now to ask my GP what they were at.

If anyone can shed a little light on this for me please it would be great. Esp to know what normal levels should be? Etc?

Thanks

Joe Doe

Wild guess would be something like celiac disease (gluten allergy), but it could really be anything as per suggested here:

http://www.webmd.com/food-recipes/guide/vitamin-b12-deficiency-symptoms-causes
Only a medical professional could diagnose based on your particular data.

Only reason for referring to 'gluten' as a possibility is that is the it seems to be becoming a more and more common allergy. Lets face it everyone knows of someone with this condition now. Perhaps due to the modern wheat and grains (many genetically modified) having only been farmed/consumed for the last 10k years whilst humanoids have been around much longer than this on the now popular paleo diet. Many athletes avoid gluten altogether for an added advantage. Spelt is a more ancient grain and rather good, buckwheat is decent too.

Wonder how many folks are able to tolerate gluten without noticeable symptoms, but all the while not doing them any favours in the longer term.

Joe Doe

As aul Hippocrates used to say... no harm in having a look at your fingernails, the windows to your health or something like that...

Andiegiggles

Joe Doe wrote: »

As aul Hippocrates used to say... no harm in having a look at your fingernails, the windows to your health or something like that...[/URL]

Thank you very much Joe for all your help as those two links you sent to me reveiled more symptoms that I didn't notice before.

thepenpusher

Hello,

Can anyone tell me if methylcobalamin is available in Ireland?

Thanks,

smjm

thepenpusher wrote: »

Hello,

Can anyone tell me if methylcobalamin is available in Ireland?

Thanks,

Seems to be freely available, for instance:
http://www.hollandandbarrett.ie/shop/product/solgar-methylcobalamin-1000-g-nuggets-60001415

thepenpusher

smjm wrote: »

Seems to be freely available, for instance:
http://www.hollandandbarrett.ie/shop/product/solgar-methylcobalamin-1000-g-nuggets-60001415

Thanks for this. I should have been more specific. I need the liquid ampoules for intra-muscular injection. My system can't absorb the vitamin in tablet form.

The synthetic, man-made version, cynocobalamin is widely available but contains minute quantities of cyanide (which I would prefer not to take) it also takes longer to absorb.

The natural alternative is absorbed almost immediately and is specifically beneficial with regard to the neurological effects of b12 deficiency such as, joint pain, atrophy, confusion, dizziness, headaches and insomnia.

Thanks though.

Arbie

thepenpusher wrote: »

Thanks for this. I should have been more specific. I need the liquid ampoules for intra-muscular injection. My system can't absorb the vitamin in tablet form.

The synthetic, man-made version, cynocobalamin is widely available but contains minute quantities of cyanide (which I would prefer not to take) it also takes longer to absorb.

The natural alternative is absorbed almost immediately and is specifically beneficial with regard to the neurological effects of b12 deficiency such as, joint pain, atrophy, confusion, dizziness, headaches and insomnia.

Thanks though.

Cyanocobalamin and methylcobalamin are both man-made vitamers of B12, so neither of them are particularly natural. In fact, cyanocobalamin is typically produced using bacteria whereas methycobalamin is produced by chemical reaction in a lab, so if anything the methylcobalamin form is more artificial.

Cyanide isn't a specific poison, it's a group of chemicals, and the toxicity is based on dose received. We all eat cyanides in our daily meals but the dose is so tiny our bodies break it down and excrete it. The dose in a B12 injection is smaller than I had in my dinner.

Whoever is treating you for this should be aware of the above and should advise and prescribe accordingly.

thepenpusher

The treatment I have received for this condition could be better described as neglect.

I am 54 years of age and my GP has been treating me for arthritis for the past 10 years. I have been prescribed various different anti-inflammatories and painkillers, none of which worked of course. At one point I was given anti-depressants which I discontinued myself. I knew I wasn't depressed, I had a physical illness.

I saw my GP intermittently and I was beginning to feel like a crank. He didn't say it but I suspect he thought my symptoms were psychosomatic. I decided that this was my lot, pain, atrophy, fatigue, irritability were just a part of my life now. Throughout this I have continued to work and take part in life but frankly I was dying inside because I felt inadequate and unable to keep up with my peers.

However, my brain fog, confusion and mobility worsened and started to affect my work. I decided last month to make one last ditch attempt with my GP to get some answers and some effective treatment. Luckily, my regular GP was on holiday and I saw a locum. He questioned blood tests I had three years previously and told me that the sample had coagulated and the results were inconclusive. At the time I was told my bloods were "all fine".

I was sent for more blood tests immediately and a severe B12 deficiency was found. I have been receiving a B12 shot once a week for four weeks so far and there is one more to go. I will then have a shot every three months. However, while I feel somewhat better I don't feel the radical improvement which was promised. I feel I may need more frequent shots than every three months.

I have an appointment next week with a new GP at a different practice and I intend to ask for a referral to a neurologist. Who knows how much permanent nerve damage has resulted from years of neglect. It is not my intention to crucify or sue anyone, I just want to get better and get my life back. My old GP is a kind, well meaning man who made a huge mistake with me. That doesn't make him a write-off. And, in fairness, I had become so efficient at hiding my true condition, for work purposes etc. that I never really looked that sick. Make-up and mind over matter can work. What was going on inside was something different altogether. Only my nearest and dearest knew how I really felt. This is all very upsetting when one considers that years of pain could have been avoided and my quality of life improved with this very simple and correct treatment.

In the past I have always put my faith in my general practitioner, trusting their knowledge and professionalism. This was quite obviously a mistake in my case and I have decided to inform myself. What you say in your post contradicts everything else I have read so far concerning cyanocobalamin and methylcobalamin. Cyanocobalamin is considered the cheaper and least effective option. But since I am not an expert I am willing to take your comments on board with the rest. This is, after all, a learning curve for me and I welcome all advice. Also, your comments have made me feel a bit better about taking cyanocobalamin.

The reasons I question this product are:

1. I have completely lost faith in the ability of my GP to provide best advice, a course of treatment and to prescribe the correct medication.
2. The medication has not worked as well as hoped.
3. I am taking responsibility for decisions regarding my health from now on and this will involve asking a lot of questions.

Thank you for taking the time to respond to my post.

Wesser

Maybe it is possible , in both cases, that seeing as the b12 supplements did not help either of you with your symptoms, your symptoms are not due to low b12 and low b12 is an incidental finding?

Kurtosis

thepenpusher wrote: »

Hello,

Can anyone tell me if methylcobalamin is available in Ireland?

Thanks,

Sorry to hear about your trouble thepenpusher. I've come across two types of B12 injection used commonly in Ireland: cyanocobalamin (common brand name Cytamen) for which the maintenance dose is normally administered once per month, and hydroxocobalamin (Neo-Cytamen), where the maintenance dose is generally given every 2-3 months. Methylcobalamin does not appear to be a licensed product in Ireland, or the UK for that matter, so while it is not impossible for it to be prescribed and sourced, as it is an unlicensed medicine it can only be used in circumstances where there is no suitable licensed alternative available and a doctor is happy to bear the responsibility regarding any adverse consequences.

Arbie

It is very difficult to find reliable info on B12 injections and a lot of what is online comes from opinion pieces and pseudoscience. I just googled it there and the first few pages of results are utter rubbish masquerading as medical advice. It is confusing for patients and health professionals alike. My post above is based on the latest evidence and guidelines that I could find, and it is what I use in practice, but even so it is not my specialist area.

Wesser makes a good point, some test results are co-incidental, which may only become clear when the treatment doesn't give the expected results.

It sounds like you have been through the mill and you are right to get another opinion.

gijoo

ThePenPusher - here is what I have used to find out as much as I can about b12def.
Previous posters are correct, there's a lot of rubbish out there, so it's best to ensure your sources of information are trustworthy, and try to educate yourself as much as possible, and sometimes symptoms are often dismissed missassociated with depression etc.... You know your body best....

I would recommend 4-5 good sources of information.
1. http://www.b12deficiency.info/
2. http://www.b12d.org/ (Dr Chandy has investigated this for decades).
3. https://www.facebook.com/groups/PAB12DSupportGroup/ Facebook Pernicious Anaemia/B12 Deficiency - Support Group
4. This Newbe post is a great start https://www.facebook.com/notes/pernicious-anaemiab12-deficiency-support-group/pernicious-anaemia-b12-deficiency-support-group-protocol-treatment/714310168671950
5. https://www.amazon.com/Could-Be-B12-Epidemic-Misdiagnoses/dp/1884995691 book written by Sally M. Pacholok

For my loading doses I had 6 IM shots of hydroxo over 2 weeks (Mon / Wedn / Fri - for both weeks)
Depending on symptoms, I think that NICE recommends continual shots if neurological symptoms are present, until symptoms reside, each case is different, so research the above links.

With B12d - there are specific blood tests that should be done. Some even before the loading doses are started.
I think MMA and Homocystine should be done before loading doses start, this often is not done.
Iron / Ferritin / FBC / Folate / Thyroid / Calcium / potassium / Intrinsic Factors etc.
The lab test "Serum B12" is also not supposed to be the most accurate test and can be missleading. There is a newer test that seems to be used more elsewhere called "Active B12", but I think it's only available privately in ireland.

Best advise is try to get to the root cause, A good GP who may refer you to the like of a GI, gastroenterologist, etc..

Also - if you have an absorption issue, then oral b12 will not work. At the start, I also was weary of cyano, and there are lots of negative unfounded info about it on the net. But I've been getting very bad hip/joint pain after taking Hydroxo, and very bad acne on back of neck and head from the hydroxo, and have been taking Cyano lately. (Cyano as stated previously has to be taken more frequently). You also should read about "Co-factors" as the body needs these as well as b12 in order to work (Folate being the main one - Read the links above for more info).

IM B12 is prescription only, whereas in most countries it can be bought over the counter. I self inject as my GP was charging me €60 a pop, and €30 for bloods before so it was all very costly. It's shocking the price of B12 on the continent compared to the cost of it here.

Another piece of advise - Buy a file, and ensure that you get a copy of the lab results of all your blood tests, in the past and into the future, and add them to your file.

a great video on youtube showing how a gp ended up near death, due to it (I think they suspected MS), and how his gp friend identified b12 deficiency. https://www.youtube.com/watch?v=QqjyAeOLyKM&t=167s

I would highly recommend joining the Facebook group, there are a few irish members.
You can sometimes get people who moan on it, or some who try to associate every fiddle-faddle to B12D, but as a whole it's a great resource.

Best of Luck
Gijoo.

thepenpusher

Thanks so much!