Feeling weird: Hi on the 6th I had a... - Pernicious Anaemi...

Pernicious Anaemia Society

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Feeling weird

gpw61 profile image
12 Replies

Hi on the 6th I had a loading dose of b12 although. My doctor said I didn't need it as I had a reading for of 2000 Buy since having it a feel very jittery sleeping gonee to pot and feel hot ifs this common or possible many thanks

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gpw61
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12 Replies
OldmanD profile image
OldmanD

What was the frequency of the loading doses?

gpw61 profile image
gpw61 in reply to OldmanD

Hi thanks for your reply. It's one every three-months

OldmanD profile image
OldmanD in reply to gpw61

Did the Doc not prescribe about 6 doses one every second day for two weeks or one every week for 6 weeks?. . . . . . . Or are they just going to give you 1 dose every 3 months from the get go. . . . . .

OldmanD profile image
OldmanD

I have just read your post from a week ago. . . . . . . . . If your numbers were low and you were getting a dose every 3 months I would think 3 months is too long. . . . . . How did you feel while you were getting every 3 months . . . . . . Many do feel weird in various ways and we'd say its healing . . . . . . My head felt like it was going to float away within about 5 maybe 10 mins of the first few loading doses . . . . . . When I stated to SI the same feelings reappeared but I knew about them . . . . . . Had this happened outside of medical treatment I'd have been frightened. . . . . .. So yes there is a lot going on in our bodies . . . . . .

gpw61 profile image
gpw61

0n 13th December I had 6 doses one every two days,this was my first loading dose every 3 months is the scedule

gpw61 profile image
gpw61

I had six loading doses 3 years ago and nothing in between

OldmanD profile image
OldmanD

Not a bit wonder ye are feeling weird. . . . . . . That is not good treatment. . . . . Stick with it

charks profile image
charks

Feeling 'jittery' is quite common. Your body is repairing your nerves and you are experiencing resumption of sensations.

Wwwdot profile image
Wwwdot

Hi gpw

Sorry that you are needing to join this illustrious group but welcome!

Of course your B12 will be high with loading doses as that’s what they are for. Now on treatment it’s not necessary to test for B12.

Your body is kick starting after years of deficiency and it is unsettling and painful and scary and unpleasant. Symptoms often appear and existing ones can get worse during this time.

If you have neurological symptoms you should receive a jab every other day until symptoms go or no more improvement- however I could not get that from GP (resources) so I self inject. There is no way I would be able to function with one B12 jab every three months.

Keep a symptom diary as your body will tell you what it needs - I had to learn to listen to it and adjust my self-treatment. Keep an eye on co-factors as healing will deplete other vitamins and minerals as it heals so you need to supplement.

Finally, do not assume your GP or any medic is up to speed on this topic. Sadly they rarely are.

🤗🤗🤗

gpw61 profile image
gpw61 in reply to Wwwdot

Many thanks for your reply when I asked the Doctor his reply was you had 184 now your 2000 you don't need another jab you can have if you want it's up to you???????

Hockey_player profile image
Hockey_player in reply to gpw61

He does not know what he is talking about. Your levels are high from the injections. You need regular B12 since you have PA. I personally find I need injections about once per two weeks to feel good. You mention going 3 years without B12. That is way too long. I am skeptical that once each 3 months is enough and that seems to be the furthest spacing they will use for people with PA.

Narwhal10 profile image
Narwhal10

Hi gpw61,

Sorry to read that you feel ‘weird’. Unfortunately, PA/B12D is poorly understood by the medical profession.

Many of us have a vast amount of signs and symptoms for a lengthy period before the disease/condition is found. So, when we receive the Hydroxycobalamin (loading doses) this can start healing every cell in our body and our Nervous System.

Dr Joseph Chandy referred to our increased pain, vibrations, jitteriness, burning, more pins and needles as the Reversing Out process. Many of us need more frequent injections than every 12 weeks. So, we do what we have to.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po....

Several months ago, I got stopped by a ‘chugger’ (a person wanting me to sign up to whatever charity and give however much a month). They asked Did I want to an interesting conversation ? to which I said No. They started their spiel. Then I completely took over because I knew more than they did. They then told me I needed to relax more. So, I asked them Did they know how the Nervous System worked ? They blundered and started retreating. Plus, excusing themselves with, I am going to harass somebody else. So, I shouted, There are laws against that.

We have 30 trillion cells and more than 7 trillion nerves. This is the re-starting of your PA/B12D journey. There is a lot to learn. Please join the PA Society and there are several books which include Martyn Hooper’s, Sally Pacholok and Dr Joseph Chandy’s.

There are several organisations within the U.K. dedicated to PA/B12D

pernicious-anaemia-society.org

theb12society.com

b12info.com

For Health Professionals

club-12.org

Excuse me whilst I bang my head on the wall because you had six loading doses 3 years ago and nothing in between. You cannot stop start treatment of ANY disease/condition. Can you imagine, Here is your insulin. Oh no you do not need it. Yes, you do. It is similar to a Punch and Judy Show.

The NHS is chaotic and disorganised. GP’s are generalists. They have to know a vast amount of diseases, conditions and illnesses but know very little about details.

Please be an informed and empowered patient. Many of us have low ferritin, folate and/or Vitamin D. So, take a multivitamin/mineral. Hope things settle soon.

Best wishes.

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