Hi there, I've had many helpful replies to my previous questions.... Which I'm extremely grateful for 😊....
Taking into account we are all different, but with b12d in common, when I've asked about feeling worse, before feeling better, following injections of replacement b12, meaning, those of us who have had to have more than the standard NHS treatment.
Encouraging replies, have often included "it can take a while". Initially, I was more than happy to hear this, but here I am 3 weeks into daily injections, and apart from a wonderful 24 hour period a few days ago, I have continued to feel poorly.
I think the worsening of neurological symptoms is called 'Reversing Out" & I understand that process.
I guess, having any replies, other than the obvious "how long is a piece of string", would be encouraging.
Thank you so much if you are able to tell me of your length of recovery, or levelling out.
Kindest Regards
Shirley
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ShirleyMurray
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I am in exactly the same situation as you but on injections every other day (thinking about self injecting daily though) I had a great day Tuesday and really felt I was turning the corner but from Wednesday onwards feel worse!! Am shuffling with a stick now and feel exhausted - this b12 stinks!! Would also love a timeline as gives you a goal however am well aware as we are all different this is impossible to have.
How long have you had neuro symptons? Are you still shattered? Any other problems?
This more than likely applies to yourself as well as caroline. Are you taking a broad spec multivit/ mineral tablet and or b complex and also eating potassium rich things ie. bananas.
As you have found, no two of us seem to be the same but many have found by adding in other things it makes the whole conversion process seem to work. Different people respond to differing amounts of folic too.
There is unfortunately a good measure of trial and error, some of it costly, but at least we are being proactive in trying to resolve our health issues where b12 is concerned, which is more than some peoples gps are doing.
Thanks so much for your positive reply, you'll see that I've also replied to Carolyn 1964, and covered some more ground.
You're quite right that this is a trial & error situation, and definitely costly! It's so exhausting, trying to inform oneself, check out possible sources of b12 & vitamins etc that may help.
But knowing that we are all in the same boat, does bring some comfort....it's so very frustrating that the majority of GPs are so ignorant of this.
If I knew where to go where a GP understood this condition in its entirety, I would move there! As doing this is so hard. Though obviously, I'm too exhausted to move !!! It's sad, to be watching days, weeks, months & years disappearing & I haven't achieved what I expected I would!
After managing to get my GP to agree to alternate day injections, as per the guidelines, she stopped them after 3 weeks, as she felt they weren't making a difference to my neurological symptoms, and my extreme fatigue, & instead gave me Nortriptyline, which I haven't taken, as I wanted to 'prove' if taking more b12, my symptoms were alleviated.
So, for the past 3 weeks, I've had daily injections. The first 15 days were a nightmare, as I felt even worse. I was only able to source, ampules of Methylcobalamin 5,000. So used 1 every 5 days. Then I received Hydroxycobalamin (1,000 ampules) & separated the 5,000 into 5x1,000 & injected both Hydro & Methyl daily for 3 days, & a seeming miracle occurred & I had a good day! But because I felt good, I went to an opticians appointment I had already cancelled 3 times, as I felt to awful to go to!
Big Mistake!
The next day, I again felt like death again, (sorry for the dramatics, but honestly when you feel so awful, it's a good analogy!).
So that was 4 days ago, I increased the Methyl to 1,000 X 2aday + 1,000 Hydro.....
I avidly read this forum, & I don't know whether, I feel so bad because of the Reversing Out symptoms are doing 'their thing' & I should sit it out. Or if I should take more b12.?
It's a problem because, if taking more makes my neurological symptoms worse, it's going to be very difficult to cope...on the other hand, it might improve everything!!
Hence my question. It's a dilemma.
As well as the neurological symptoms I am like you, exhausted. I can't get up the stairs without crawling. I'm spending all day lying down, as the world passes by. I can nap periodically in daytime, but awake all night.
I also take Folic Acid (blood test revealed Macrocytosis) & pottasium & magnesium.
Really sorry to have replied with an essay, but thought I may as well get it all out there!
I have every sympathy with you, & the others of us with this horrendous exhaustion.
Just wondered if your potassium levels were being monitored by GP as some people can experience a drop in potassium levels when they start to supplement B12.
Have your ferritin and folate levels been checked recently?
Hi, really grateful for your reply and thoughts...yes, had bloods done a couple of weeks ago, & everything you mentioned was at the lower end, so I had started with potassium/magnesium & changed the folic acid from the doc to methylfolate...& I'll now include a multivitamin.
I've been self injecting every other day for 10 months now ( diagnosed a year previously but not treated properly by GP) and still improving.
I had probably been very unwell for many years and recall gait changes etc from at least 5 years pre-diagnosis, along with other neurological symptoms. I was at the stage of almost total collapse at diagnosis. My ferritin levels were negligible (4) and b12 at 118. It was later discovered that I also had a serious vit D and zinc deficiencies, amongst others.
I kept myself partly functioning (post diagnosis) with huge amounts of sublinguals and a transdermal spray prior to a year later deciding to self inject with the support of an "alternative" doctor, who also discovered the additional issues.
I changed GP as the old ones were dreadful and an attempt to discuss with the senior partner my concerns about the treatment protocol resulted in a highly defensive and then patronising response. I am lucky that I am an assertive person and was still functioning well enough to do my own research, but cried for hours after each GP appointment with sheer frustrated exhaustion. I used this group and the Facebook one after I realised through a conversation with the PAS that the gait problems were b12 related. My new GP was persuaded by the "alternative" private doctor to teach me to self inject (and to vary frequency) and I just decided it was easiest to order my own supplies and use as needed.
After 3 months of self injecting I had the first time off work when I did not sleep all afternoon - or longer .
In the last 4 months I have been able both to work full time in a demanding job and exercise 4-6 times a week to the level I was managing 20 years ago (I'm 53). I had at my most ill reached the stage of hardly being able to get off the sofa and could sleep 14-16 hours a day without feeling any benefit.
A senior nurse friend I've not seen for years recently noticed muscle wastage down my weaker side but I've recently been able to use that leg first doing downstairs. I had stopped being able to do this without difficulty years ago.
I'm probably using up a lot of b12 with the increased exercise and a period of stress, so intend to continue to self- inject this often for the foreseeable future. Like many, I had forgotten what it is to feel well. My tiredness now seems more in proportion with what I am doing and at such times I do feel better for sleep, which was never the case previously.
I had a "crash" about 6 months post diagnosis - I realised that my iron levels had again dropped and were not high enough to support the b12 I was taking sublingually (at this point I was only getting 3 monthly b12 and had no benefit from the loading doses given when ferritin was too low.)
It does seem to be important to keep an eye on all the other things needed to absorb b12 and it is easy to take the eye off the ball once one starts to feel better and health is less of a preoccupation.
As to the how long does it take question. Yes, it's difficult to say and depends on so many things. But we (I mean the Dutch B12def foundation) did a survey a couple of years ago. 2000 patients filled it in so you could say it gives some idea..here's the page with the treatment results (we've translated all into English) : stichtingb12tekort.nl/surve...
Hi Shirley, Yes we are all different, my Dr. told me it would take me a good year. I'm thinking of how bad your condition was before it was diagnosed, I was full blown Megaloblastic Anemia. I still have bad days and I was diagnosed a long time ago. Hang in there, it really does get better!
Phew...thanks so much for the encouragement & light at the end of the tunnel!
It's tough at the moment, to try and remember what being normal might even feel like. So, I'm taking your words positively, & will definitely, keep, keeping on
I only really felt better when my GP agreed to give me injections every six weeks instead of every three months. This was some fourteen months after loading injections. I've gradually noticed some symptoms going almost completely, whilst others have reduced to a manageable level. I think with some areas the damage had gone on for too long to ever be completely cured.
Thank you for replying.... It's clear one size does not fit all....
I sympathise with the struggle to get GPs to agree to more frequent injections. It's not right, that even when there are clear neuroligal symptoms, some of us have to fight for a paltry number of injections spread out over too great a time frame.
Educating health professionals has to be the way forward...
Sounds to me like your B12 isn't working properly, possibly because you need what is non-scientifically known as "the cofactors required to metabolise it".
You are likely to need a broad spectrum multivitamin and mineral supplement (Tesco's A-Z multivitamins and minerals is comprehensive and not expensive) plus extra folate (up to 5mg/day and this may need to be as methylfolate or folinic acid), potassium and magnesium, maybe iron. I also need a wide range of amino acids from my diet, including specifically pork and fish.
For more information, including sources of supplies, you could look up my profile and see my post, "My Experiences".
While it does take time and busy days will set you back, I would expect you to have had some better results by now.
My hunch from what you are saying is that you would benefit from 6 x 800 mcg methylfolate tablets a day.
If all of the above doesn't work then you probably ought to investigate other possibilities.
Hi there, thank you so much for your detailed reply...although I am taking methylfolate 5 mg, pottasium & magnesium, it's highly likely I also need a broad spectrum of vitamins. So will get on to that....plus will check out your home page.
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Hope this is a blip...
How long after stopping injections do symptoms return?
A theory
How long until muscle twitches resolve?
What exactly is Functional B12 Deficiency?
