I'm waiting for NHS appt with endo which is 20th May. I don't know how much longer I can stay in work feeling like i do atm. I'm exhausted all the time.
I cant afford private treatment for B12. I already pay private consultants for menopause care so I just can't add on anymore.
Do people think that its best to have an injection that is available at a beauty clinic first before going down the SI route? I'm just wondering in case I have a reaction to it.
I think I just need to bite the bullet and give injections a go.
My last B12 in November was 215 (211-911).
I've been taking 5000 b12 supplements, b complex with folate, d3 and k2, magnesium. I stopped taking iron until can get full iron test done. My ferritin in Nov was 57.
I did try and go back to my GP but no luck as I am in range.
Thanks 😊
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RedOne1
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I assume you have been taking 5000mcg of b12 since Nov after the test, as I doubt your serum B12 will be so low on 5000mcg tablets. You should have felt better by now, as at least 0.5% is absorbed by all (average 1.2%). While there are no conclusive studies on it, in my experience and some studies, cyanocobalamin tablets work better than methyl ones, so you may try switching to cyano tablets to see if they help. You should note, however, that cyano tablets are slower acting and studies suggest that they give the full effect after about 2 months. This is also what I observed.
If you can get injections and feel fine on them, great !
Hi. Yes since November. After about 3 weeks I started to feel a bit better. I definitely noticed a difference in how much I could do each day. Although still not a normal level of energy by far, it was more manageable. That seems to have stopped more recently though, I'm not sure why.
That's interesting about the different types. I will bear that in mind! Thank you
I have had a similar experience where I felt better initially only to plateau and even get worse after a month or so on Methylcobalamin tablets (was using 750mcg/day and later 3000mcg/day). Methyl tablets (and even methyl and hydroxy injections) are faster acting but in my experience, their effect goes down after a while, as I believe the body gets used to it (I believe it has something to do with the excess excretion of B12 via the bile). Cyano tablets as well as injections, but more so tablets, are slower acting but give a more constant B12 to the body and a higher "active B12" after about 1-2 months. There are studies to show this and I can refer you to it. In fact, all the studies that say that 1000-2000mcg/day orals are as effective as injections use cyanocobalamin for orals. Again, I suggest a trial of a switch to 5000mcg/day cyanocobalamin and see how you feel after 1-2 months. For me, it took 2 months for it to really kick-in and I started improving significantly after that. Good luck!
I don't think the problem is absorption, as all studies that have been conducted have shown that about 0.5-4% is absorbed by passive absorption. I think the problem is that studies on cyanocobalamin show that it takes about 2-4 months for the active B12 (MMA was tested) to become normal and one will suffer till that time after which the healing can be expected (kuzminski 1998 tests on 18 PA subjects). On the other hand, methyl tablets work well initially but for some reason stop working after a while. This was my experience and many here including RedOne1 is reporting the same. I believe it has something to do with how the body reacts to oral methyl tablets and my understanding is that it somehow leads to excessive biliary loss of B12 after some time. I have seen at least two studies that show that oral methyl tablets do not give a high active B12 to the body. In any case, there needs to be proper clinical trials for methyl and cyano orals to give us an idea and in any case, cyano orals have been suggested only for maintenance and not for initial treatment, so the initial treatment for anyone with neurological deficit should always be with injections...
I think the first thing that needs to happen for the medical community is to get away from serum B12 testing and go to MMA, homocysteine and/or active B12 testing. Recent clinical trials have tried to include these but clinical practice still heavily relies on serum B12 testing.
Secondly, it is not well understood by doctors that once on supplementation, serum B12 levels will be high for some time without necessarily the desired effect. My treatment was stopped because of high serum B12 on tablets and I hear so many other stories here and elsewhere where this is done with devastating results.
Also, methyl tablets have not been tested but in recent times, these are the ones often recommended and even the only ones available in many countries now. This is criminal!
The worst is the doctors telling patients that injections are the same as tablets which is just not true in the initial stages of treatment, even with the clinical trials already done. As you said, mostly to save money and doctor/nurse time, people are being pushed away from injections even for initial treatment, what to speak of maintenance, which is just criminal !
Hope we can together get some movement in the right direction in the medical community regarding this.
That's what I did, the first I used is an ex nurse, so felt safe. Shop around as prices vary. I got a discount because it was a genuine need, and not just that I was a bit run down.
if you can get trained and start doing your own. Get your own supplies and do it daily. It may save your job and your life. It did mine. Doctors will let you down.
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