A video about the importance of B12 and the symptoms of B12.

[shaws]

This is an interesting and informative video:

youtube.com/watch?v=SvUEZPG...(Not working as expected?)

[nightingale-56]

Thanks for posting this shaws . Although my blood results for B12 showed good, I obviously had all the symptoms as diagnosed by a Hospital Doctor in A & E earlier this year. Having now been on B12 injections for this, I am very much improved. I had just about all the symptoms that Dr Berry mentioned. This video is one of the best for being in a 'nutshell'.

[Mamapea1 in reply to nightingale-56]

Yes, me too nightingale-56 , I wish I had gone to A&E...I remain undiagnosed officially, and just continue to supplement with large sublingual doses, but it would have been good to have it recognised. I was in such a bad state when I started supplementing, and it made such a tremendous difference, that I couldn't bear to stop. I'm thinking of sourcing my own B12 injections if it things don't continue to improve, but at least I'm ok now. These blood tests that we're subjected to have a lot to answer for...useless!

I'm glad you were able to find someone who knew what was going on. x

[nightingale-56 in reply to Mamapea1]

So glad that you have benefited from the B12 sub-lingual supplements, but you can get a lot of advice from the Pernicious Anaemia site if you ever think of wanting to do self-injection of B12. I have had a lot of help from there. I have improved since I have started si every other day and know this is for the rest of my life now. I am convinced that it is becauseT4 was changed for the worse in 2010. None of the blood tests for B12 deficiency are menat to be very good, so I was lucky to have found a Doctor in A&E who knew what to look for. They should all be like her.

[Mamapea1 in reply to nightingale-56]

Hello j_bee thank you for your reply. I agree that the PA site is excellent, as is this one. That is definitely where I would go for help with si. I wondered if you have found the injections made a tremendous difference compared to sublingual supplements, or did you just go straight onto injections?

I take Jarrows 5000 lozenges and also Better You spray, and my complex obviously contains B12, but if I find that I need to remain on high levels, and GP won't accept and dx, I will definitely si. Are you si every other day because prescribed doses are inadequate? Sorry for all the questions😊 x

[nightingale-56 in reply to Mamapea1]

Ask away Mamapea1 . the injections made a great deal of difference and I think still are ongoing. Numbness in toes has just about gone now and brain fog. Now only have tinnitus to contend with, but even that is subsiding. I had been supplementing for about three years before I was diagnosed on symptoms, as tests would not have been any good then. The six loading doses GP gave me made a difference straight away, but then he would nly give me one every 8 weeks, which were useless and I just slipped back each time. Began si with help from PA site. Am following NICE guidelines for neuropathy, which is every other day until no more progress is made. Now following PA Society. I still take a B-Complex daily.

[Mamapea1 in reply to nightingale-56]

Apologies for the delayed response nightingale-56 , I went out with friends who were visiting, and forgot where I was with everything😳 As you can see, I still have problems😊 although in truth, it's great that I can go out at all, as it would have been impossible a few years ago.

Yes I suspected that the injections would prove to be superior to the sublingual B12 in terms of symptoms. I suppose I won't know for myself unless I try them. I have had such an improvement on high doses, but it's also hard to distinguish what is thyroid and what is B12 related.

All I have managed to determine is that if regular NHS serum tests go below 2000 (yes 2000) I get the tremors back and feel awful. I will see what my new GP has to say (see my reply to shaws)...I really fancy those six loading doses! If not, I will si under guidance from PA site. I would love to get rid of the tinnitus, but I fear that boat may have sailed...I've had it for so long😕 Many thanks for your input. x

[shaws Administrator in reply to Mamapea1]

If you wish to be diagnosed you'd have to stop supplementing with B12 for a while. It is very, very important that you exclude pernicious anaemia - another serious autoimmune condition that needs injections every 3 months and even that's too long for those who have P.A. B12 supplements aren't sufficient for P.A.

[Mamapea1 in reply to shaws]

Hello shaws, thank you for your reply. Yes I intend to have an active B12 done at some point, but of course the symptoms returning while I abstain from supplementing to get the test done is off putting, as is the cost at present.

I tried relentlessly to get diagnosed via NHS, and saw numerous 'specialists' to no avail. I had a vitamin D level of 4 when it was eventually tested, and I had had below level folate for many years, but wasn't told. My B12 was always 'just in' the range.

I have had deafening tinnitus for over 10 years, and almost all the symptoms on the PA site. Considered neurotic by GP, and told to "pop out and get some folic acid"😳.

Now on T3 only and supplementing as advised on here, absorption issues are much improved, as is everything else! So I am hoping that these issues were/are due to malabsorption caused by inappropriate thyroid meds, as all were deficient. Wether these are ongoing remains to be seen.

Dr Gominak suggests that after a few years of supplementing Vit D, B 12 and B complex (I'm nearly there now) that the gut bacteria and absorption issues may be restored and repaired. Of course I would always continue to supplement as necessary, but it would be interesting to find out ~ she has been spot on with my condition so far, and extra B5 and B1 has fixed any residual issues that remained.

However, I now find myself changing GP surgery, so if this new GP is open to suggestions and willing to help, then that would be great. I'm not holding my breath though, I'm pretty much done with them all, and usually find the stress isn't worth it. I will definitely get the test if necessary, and present it to them, as it would be sensible to have it recognised. If they don't, I'm quite happy to si with advice from the excellent PA site.

A friend dx with PA still has to buy her own anyway, as her injections were changed to twice yearly from every 3 months...she was symptomatic throughout...madness! Apologies for long drawn out reply😊

[shaws Administrator in reply to Mamapea1]

No need to worry about a 'long reply' sometimes it is necessary to explain more fully. I often have long replies.

I've always had 3 monthly for years now (PA diagnosed by chance when a doctor told me by blood test 'wasn't right and he was puzzled'). I didn't know what he was tested) but I told him my Mother had PA. He then sent me for a 'nuclear' test( I believe was called). The result was that I had P.A. myself and started 3 monthly injections. I think I'm now going to request 2 monthly as I've had symptoms in my toes recently.

[Mamapea1 in reply to shaws]

Glad to hear you were diagnosed shaws, but dreadful that it was 'by chance'...I wish I could tell them about some disease my poor mother had, but like me, she wasn't diagnosed with anything concrete, except the usual dustbin dx often seen on here😕. At least they acknowledged I was hypo, I suppose.

Looking back, and knowing what I know now, she also very clearly had low thyroid output and related problems. She lived into old age, but was very debilitated, and in terrible pain. If not for this forum, I was headed the same way.

I agree, it's worth checking out those symptoms, and increasing ~ I believe B12 levels can naturally decrease with age, so you may have reached a point where you need more. Better to be safe than sorry.

I found that despite massive improvement on supplements, I had a very sudden return of 'burning feet' at night. I discovered (via Dr Gominak) that for me, it was due to a lack of B5, even though I had been taking a daily B complex. So for a while I added the extra (solgar pantothenic acid 550mg) and the burning disappeared like magic!

It's a complicated business with no help from those that are supposed to understand the human body. I've only ever had one decent Dr, and he's long gone...the others have all been doing very good impersonations of pharmaceutical company representatives.

[shaws Administrator in reply to Mamapea1]

Mmmmmm 'burning feet' rings a bell and I'm requesting a B12 blood test shortly. I've not had one for a while. Thanks.

[shaws Administrator in reply to Mamapea1]

I just found out recently that the NHS B12 injections are 1ml because the one's I've had in Europe are 2ml and given in the hip.

An extract from the following link:-

"Vitamin B12 Injections: Dosage of Various Active Ingredients

In regards to these doses, it should be added that – due to the differences mentioned above – the actual amounts of B12 absorbed differ significantly depending on the active substance:

Dose

Cyanocobalamin intake Hydroxocobalamin intake

1000 µg 150 – 200 µg (15-20 %) 700 µg (70 %)

100 µg 55 µg (55 %) 70 µg (70 %)

The difference in the long-term effect is equally major: whilst the serum levels in cyanocobalamin fall rapidly and the vitamin is excreted; hydroxocobalamin circulates in the body for a much longer time, because it binds loosely to proteins in the blood. In this way, high serum concentrations are maintained for days and weeks, providing a fairly even supply over a long period of time (10).

Based on these findings, we believe that slightly different proposals can be made for vitamin B12 treatment via injections with different active ingredients. The body’s B12 store contains around 2500 µg of the vitamin and the recommended daily allowance is 3 µg.

Taking these numbers into account, along with the findings and recommendations of current trials, the following dosages can be recommended:"

b12-vitamin.com/injections/

[Mamapea1 in reply to shaws]

Thank you for your reply and link shaws. From what I've read around both this and the PA forum, I had decided that perhaps hydroxocobalamin would be better for me. Currently I take Jarrows methyl cobalamin 5000 and it works fine, but it seems a lot to continue to take orally. Interesting reading on dosages...I will check out with my new GP, although if they don't offer hydroxocobalamin, that would be another reason for me to si I suppose.

[Mamapea1]

Thanks for posting shaws. Hopefully many members will watch this, and take note. It would be even better if GP's watched it....I suffered very badly for years with B12 deficiency (and folate) with so called 'normal' results...it's very hard to believe that Dr's don't know these things. Ditto thyroid.

[shaws Administrator in reply to Mamapea1]

These conditions must be 'normal' for a majority of people and it is puzzling that doctors have no clue about clinical symptoms whatsoever in that they can then get the correct blood tests needed for confirmation