Hi , I won't go into to the whole details as it would take so long but for the past 7 years I have been treated on and off for neuropathy in face, then legs etc. I kept reacting to every medication given. I had major surgery last july and quickly deteriorated. Initially thought to be thyroid( turns out I have hashimitos) but this isn't being treated as bloods are in normal range. I asked about b12 but was told normal range( 260), I begged for intrinsic factor test and it came back positive! I had the loading doses then they stopped it, and said 3 months despite me saying nerve pain was still bad, particularly mouth although i ddid have more energy. I then tried folic acid and vitamin d, both I've been told I'm deficient in and they made me feel awful. I went back to gp and quoted nice guidelines about b12 every other day for neuropathy and they agreed to start loading doses again, 2nd one today. I feel worse now than I did before all of this. Is this normal? I feel desperate now as have been off work since July last year, due to operation and its now Feb!
Help!: Hi , I won't go into to the... - Pernicious Anaemi...
Help!
I am another learner and have gotten my info from a very good FB group. There is a term called "B12 wake-up" -- that says that initially with B12 injections, your symptoms will get worse for a while, as long as a couple of months, and while it is documented that this happens, it seems speculative to me as to why. I'm in the middle of the exact same thing having very recently started injecting B12 every other day. My system says WHAT ARE YOU DOING? and I also am pretty much numb over most of my body, which started very mildly about nine months ago and just keeps getting worse. For me, doctors were no help --- if you have been taking B12 and not utilizing it, your blood level can be very high. I tested my own intrinsic factor an it was high. You can also do MMA, but -- I have little confidence in tests. In any case, I don't think extra B12 can hurt you.
Awful in whatvway? Yes, I'd say that's normal.folk call it reversing out on here. I found my pins and needles particularly worsened and saw ot as a good sign. Someone will soon correct me, but I think it's a matter of your body having been trying to manage with not enough b12 and numbed down in many ways, so when it receives some the signals of nerves etc come to life.It takes time and patience. They should give loading doses eod until neuropathy and symptoms improved, but like many others on here, I've never had more than 6 injections for a loading dose, but it's worth gathering evidence and guidelines and trying for what you can get!
Have you trued different brands of vit d with no additives, etc. I can't take that easily, but seem to manage Doctors best ok.
Same with folic acid, if you search that you'll find different types, forms.
Whats your iron/ferritin like,
Hope it soon eases a bit for you,and try not to worry, it is surely only doing you good, even if it feels far from it! Take care...
Yes, it is normal. Your body has to repair and recover over time. You will have been deficient for a long time. To repair and recover you will need very frequent B12 injections over the long term which you won't get from your GP. Look on this site about self-injecting sub-cutaneously. With neuropathic symptoms the guidelines say frequent injections until the symptoms disappear. Take folate and check your ferritin level.
Hi,
Many forum members report symptoms getting worse when treatment starts before starting to get better.
Has GP checked your potassium level?
Some people get a drop in potassium level when B12 treatment starts.
"I then tried folic acid and vitamin d, both I've been told I'm deficient in and they made me feel awful"
Are you taking any folate and Vit D supplements now?
What were your iron levels like?
Forum members often report deficiencies in folate, iron and vitamin D as well as B12.
I left some very detailed replies in these threads eg links for those struggling to get adequate B12 treatment in UK.
Some links may have details that could be upsetting to read.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po....
I'm not medically trained.
Thanks all for your replies. I've stopped folate and vit d for a moment while I wait for drops to arrive. When I took vitamin d 3 I had uncontrollable shivering, tearfullness and awful thoughts. With folic acid I had the most awful tastes and again got really tearful with burning mouth and didn't sleep. On the b12 injections I just feel thirsty constantly and skin feels salty then burns then numb. I have salty tastes constantly despite drinking loads so not dehydrated. This has drained me physically and emotionally.
Big hugs.No, it's not fun reversing out.
As most of your trouble is nerves,(no breathlessness? ) understand your nerve myelin needs the vitamin B12, folate - do get l-methylfolate, not folic acid, and the type of fat that's best got from wild, not farmed, oily fish and grass fed meat.
Igennus do a Super B-Complex you can get on Amazon, or online, that contains all the most easily absorbed forms of B vitamins.
I use Better You magnesium lotion on painful muscles.
You do need to get the B12 levels up before the folate.
Great that you are getting proper treatment from the GP. Well done for standing up for yourself.
Keep moving everything gently and maybe go for a lymphatic drainage massage.
Keep a diary it helps to look back and see how things progress.
💙🩵💙🩵💙
Thank you so much, I've ordered the l methlyfolate and d3 with k2drops. I do get breathless but not as severely as I was. The nerve stuff has been going on for 7 years, and is pretty bad. I have complete muscle wastage in arms and legs too. Plus to add to it all the surgery I had was full hysterectomy due to severe endometriosis and I can't have just estrogen due to the endometriosis they couldn't remove( was in theatre for 7 hours) and I cant tolerate progesterone so at present have no hormones, no vitamins etc in body. Its been awful and what's worse is knowing that alot of this could have been prevented if they'd listened 6 years ago when I asked about b12! Anyway onwards and upwards. X
Blimey! xx
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