I am 32 years old and had B12 deficiency. B12 was <83 pg/ml (normal 180-914) as the lab could not test below this value and Vitamin D was 16 ng/ml (normal 30-100). I had multiple symptoms, some are mentioned below
1. Vertigo
2. Consistent dizziness (feeling like sitting on a boat all the time)
3. Bowel -3 times in a day
4. Unable to concentrate/ brain fog
5. Walking issue - felt like I was walking on a soft ground
This was along with depression, anxiety etc.
I have taken 9 injections till now (1500 mcg methylcobalmin). Initially 2 times in a week for 4 weeks and now on monthly once. I had reversing out effects where I had gastritis, heart palpitations, tremor, weakness, extreme lower back pain, fatigue, walking difficulty due to weakness in leg and breathlessness. Post this I started improving but now I am again back to walking issue and feel that everything around me is shaking when I walk. Did it happen with anyone else while reversing out? Did anyone else face walking difficulty like this?
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Trialerror
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hello Trialerror, yes I had what is termed Reversing Out and many others have experienced it too. Grim indeed.
Many of us too feel worse as we start to heal. Also physical or mental stress can cause a regression where more b12 is needed.
I had many of the symptoms you mention plus neurological symptoms and despite a rough time recently and blips (which I noted but ignored) , I am becoming stronger, better balance.
So, although my walking difficulties are not exactly like yours, I have improved, so I would say that you are perhaps not injecting frequently enough and your symptoms are coming back.
I had a loading doses every other day for two week.
Started s.i at .50 mg hydroxocobalamin once per day morning.
Changed to 1 mg ampoules (previously was using a vial Sarah Myhill sales).
Then I read methylcobalamin is good for neurological peripheral damage so added evening .25 mg equivalent to 1mg. (From Oxford Biosciences). Recently increased to 1.5mg equvalent.
Then changed Methyl injection to midday and added 1mg hydroxycobalamin evening.
All time taking vitamin D, folic acid and other supplements. Plus sublingual B12 Nature Provides.
Its all been based on my symptoms and need to improve. NB since increasing Methyl. I ve boticed further improvement.
I wonder if there’s any merit or virtue in going low and slow with injections, at least initially
My theory (based on nothing but my musings) is that a bit like the thyroid gland, if you over-replace thyroid hormones by blasting a body with high doses it’s been deprived of for a long time, the body and mind are shocked and begin a descent into spiralling, worsening of symptoms. My experience
It surely is a bit like cold turkey in reverse. Shock a drug addicts’s body by withdrawing its fix, it experiences awful shock. The person goes through terrible pains and sickness because his/her body is craving the very thing that is killing him/her. After a long period of time of being drug-free, if that person then goes back to drugs and injects the same amount they got used to before getting clean, likelihood is they’ll die a sudden death
Now I’m not for one minute suggesting that taking large doses of B12 is going to kill a person but imagine dumping large quantities of it, for days and days into a system that is unused to receiving even tiny amounts of B12 and has become so sick and weak without it. A sudden deluge is perhaps too much to cope with for some. In other words, give a body too much, too soon, even if it craves it and it might react violently
As I said, this is just something I’ve been mulling over and may very well be complete and utter nonsense
This is an interesting thought and one that I had myself. PA is an insidious condition so before my first loading doses there were many symptoms that I hadn't been aware of. When I had my loading doses, many of the symptoms improved, only to return a vengeance 12 months later while still on my three monthly prescribed injections.
I now self inject weekly and have done for a few years and most of the symptoms have regressed but I do wonder why I should have felt so much worse with three monthly injections than I ever had with none at all. Was it because my body had started the repair process and then didn't have the resources it needed to continue with the work or was it that following the massive increase in B12 in the blood, the body failed to process the molecule as efficiently.
In response to the initial question, when I was on my three monthly injections, I would feel worse after the injection (possibly due to my bodies increased repair activity). I would then feel better for a couple of weeks and then I would run out of energy and feel symptoms returning until the next injection. When I started weekly SI I was still experiencing improvements 2 to 3 years later.
It’s not something I fully understand and unfortunately it seems as though lots of sufferers on here don’t either
I don’t have PA and neither does my son but he’s been having monthly, small dose injections to address a fine tremor which is possibly due to being extremely low on B12 and folate. I wouldn’t be happy for him to inject more frequently until it was understood or at least explained properly, what happens when frequent, high doses are given
I have same doubts with high and more frequent doses of injection. I don't know if the symptoms completely go if you take more injections or they only go once the myelin sheath has been formed, which takes some months. Intuitively it seems that they should go after the myelin sheath formation but what I understood from this forum is that frequent injections also help reduce the symptoms.
Healing from B12D that has worsened over time and diagnosed at an advanced stage is a formidable process and not for the faint-hearted!! It's important to believe that you feel worse because you're healing and not because you're getting sicker. That said, as deficiency is so often long term before diagnosis, frequent injections eg EOD, are central to many personal protocols for becoming well again. So often those personal protocols are wildly at odds with the rigid NICE/NHS protocol which is so often inadequate.Like old age, we need courage to live with PA.
There is no definitive test that guarantees definitive diagnosis. In my case my serum B12 was so low that my GP treated it as PA even though the IFAB test was negative. PA diagnosis has to be symptom-led.
My reversing out lasted a good year and a half, currently some minor lingering vertigo, an occasional pins and needles and some dizziness every now and then. In the depths of my early reversing I could not cope with life-full stop! I was in so much pain and whole body discomfort that I cried myself to sleep every night, when I finally fell asleep, I would wake up a few hours later with my neuropathy kicking in again, my life felt unbearable. Persistence and determination with my daily SC of methylcobalamin B12 (and a balance of good healthy supplements, for me methyl folate) I have finally entered a good phase with the reversing out.
Don’t give up with every other day B12 treatment and you too will eventually find yourself with better health, the reversing out will eventually ease. This forum is the best place for you, much valuable insights and support available. Best of luck to you with your recovery.🤗🩷
From reading on Thyroid UK, it is mentioned almost daily that Ferritin (stored iron) is good around mid-range. A full iron profile blood test would be a good idea to establish serum levels.
Were you prescribed loading doses for VitD ? Also there are important co-factors to be taken with VitD - Magnesium and VitK2-MK7
Yes my symptoms were worse than they have ever been when I started injecting 1.5 mg B12 per day 3+ years ago.
I made the error of accepting the prognosis "it will get better" as advised on this forum. I know now I only experienced feeling less worse.
I find it helpful and necessary when people write here to understand they often see everyone's experience as the same as theirs and that is not the case. Often people describe B12 deficiency when they are really expressing their experience with B12 deficiency.
It was not until I injected three times a day that my symptoms improved substantially. I suffered 3 years and three months with things "getting better".
Current Trial (7 Days); 1.5mg methylcobalamin 3mg/ml, 1.5mg adenosylcobalamin 3mg/ml, 1mg hydroxocobalamin 1mg/ml. SC injection 5-6 times a day including setting an alarm to inject at night if warranted. 50 mg B6 in the form of P-5-P three times a day or pain from peripheral neuropathy returns. Benfotiamin B1 300 mg three times a day.
I wonder why on earth you have been reduced to monthly injections with such symptoms. Hopefully you can get that changed as you need more frequent injections. Plus the cofactors to deal with more B12. Good luck.
Hi, those sound good although as Marz said, I think I'd go for a full iron panel rather than just ferritin, given the chance. Gives you a fuller picture, as ferritin alone can be misleading. And thyroid is always useful to check, the B12 and thyroid being so interlinked. B6 might be useful too. Your B12 was horrific and so was the vit D. If you've been supplementing the D with high dose for a while you could retest, absorption varies hugely between individuals. But you will need lots of rest and to adjust to how you feel. You are not going to repair damage quickly and you will need a regular stream of B12 to do it. Best wishes
Yes, my experience was almost the same. For me it was a mixture of walking a long ship’s corridor in a Force 9 gale with bouncy castle flooring and tumble dryer head spinning. I remember lying on the floor for a day trying to cling on a bit like a crime scene silhouette.
It’s like Dumbledore drinking a potion in the cave. You need to keep going even when it’s doing awful things. It really does get better. I am now back to gardening and everything else I used to enjoy. The first sign that I need an injection (currently twice a week) is stepping onto marshmallowy floors.
Thanks ChesilPebble, I can totally relate to what you mentioned. I also feel pukish after walking because of all the roller coster feelings. Taking one day at a time
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