does it get worse before it gets better - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

does it get worse before it gets better

11 Replies

I have posted before as I have b12 deficiency (103 serum level), so here is the latest. After having an unfriendly conversation with my doctor she agreed to let me have 3 loading injections of b12. I had the first on Monday 17th and today the 21st, I woke up feeling awful. Rubber legs, nausea, dizziness, thick head, breathless, fatigue. I have my next injection on Monday. I don't expect to be cured overnight but has anyone found the treatment gets worse before it gets better?

Read more about...
11 Replies
Nackapan profile image
Nackapan

I did after the first loading doses. I was ill.

The second lot i made good progress and felt the benefit.

Hang in in there. Your symptoms sound so so familiar. The B12 is doing its work. My level was 106. So alot of repair like you needed. Hope you feel less ill very soon

in reply toNackapan

thanks for the reassurance

Nackapan profile image
Nackapan

You need 6 loading doses!! I have hydroxocobalamin.

in reply toNackapan

yes i am having a lot of trouble with my gp.

Nackapan profile image
Nackapan in reply to

I asked them to read bnf guidelines.

in reply toNackapan

i showed her a copy of NICE guidlines. she was not impressed. i am going to complain again on Monday.

Dickydon profile image
Dickydon in reply to

A high percentage of GP's dislike being told anything sensible from the patients. Their arrogance and big headedness often gets them into deep water when things go wrong. I've seen this from experience on several fronts; so my respect and admiration for them is pretty low down on the trust and truth scale. I have more trust and respect for the groundsman painting the straight lines at Wembley Stadium for the next England game!

pvanderaa profile image
pvanderaa

Absolutely. Until your body gets the backlog of metabolism, that has built up due to lack of B12 holding everything up, worked off, you may feel like you are on a roller coaster ride of highs and lows.

Once you’ve got B12 after becoming deficient, every cell in your body cranks into high gear and consumes any other vitamins and minerals that are available so you get depleted on those as well. It feels sort of like a hangover from alcohol which also also consumes all the other B vitamins.

You need to support with folic acid and a daily multivitamin to provide the metals and minerals needed to keep your metabolism working steady.

Folic Acid can be tricky when you first start for basically the same reason as B12, it allows metabolism to speed ahead.

An analogy, maybe not very good, is that folic acid is like the charcoal in a barbecue grill that is smoldering and B12 is the lighter fluid. Squirting a little lighter fluid on will make it explode, but it can flame out quickly, adding charcoal will get the heat to the point of being able to cook on it.

You should not take more than 5 mg of folic acid per day. I found it to be a balance between B12 and folic acid. Start with 800 mcg and build up while monitoring for new symptoms.

Do you keep a logbook of all your symptoms? You should as new ones show up, after getting the B12 jab, that are very similar to the ones that you have from the deficiency. These new symptoms are counterintuitive and follow a pattern and sequence that is unique to your body and brain and neurological damage in your body.

You feel like you just want to stay in bed all day, but bed rest doesn’t help either. I found that getting started was the hardest. Once I was up and doing something physical that moved my muscles, I found that the crap feeling would melt away. I could not do very much at first but over day and weeks things got better and then went back down as the next jab was due again.

These new symptoms like headaches, body pain, aggression (for me) were kind of scary until I recognized the pattern and could anticipate the symptoms and develop a coping mechanism to work through it. Gentle range of motion exercises stimulate nerve repair and it’s the physical movements that really help. I found swimming was a good all around exercise that really helped me.

The stronger these new symptoms are after the jab means that you were more deficient in B12 before the jab. It is a sign that you actually need more frequent injections. You’ll find this when you switch from loading doses to maintenance injections.

in reply topvanderaa

i see. my gp has a lot to learn

lownskater52 profile image
lownskater52 in reply topvanderaa

Wow Pvanderaa. This post really spoke to me and what I'm going through. After starting b12 supplementation after being deficient for 10 years, I had an initial burst of feeling great followed by feeling lower than before. I then began to get some vitamin deficiencies I've never had before like Vitamin C and (not deficient but lower than usual) folic acid even though I eat a diet high in those nutrients. This makes sense. Might write a post on it later.

Vinnie77 profile image
Vinnie77

It can take months before you are completely better. I had to get on anxiety meds to help me get through the worst of it. I remember it feeling worse but over weeks it got better.

Not what you're looking for?

You may also like...

it gets worse before it gets better - experiences

Hi, my dad is on his loading doses (4 injections so far) and we suspect he's been deficient for a...

Get worse before better?

I have read lots of posts about reversing out, but just wanted to have a moan. I seem to have a...
Chickens44 profile image

Does neuropathy get worse before it gets better when starting b12 injections?

Hi, I'm going to start b12 injection soon to hopefully help with peripheral neuropathy I'm...
blueivy_4 profile image

Worse before better???

I'm just curious if anyone has noticed worsening symptoms of peripheral neuropathy when starting...

Worse before better / breathlessness

Hello, Since March I have felt out of breath. I thought it was covid, then thought it was anxiety,...
katamarang profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.