Would like to hear from people who’s innitial levels were in the 200s

[CW12]

I have been struggling with b12 neurological symptoms since August. I have shared in other posts but will share again...No loading . 1 injection a month for two months then switched to 2 a month. Now my hemotologist is considering loading doses... won’t start for over a weak though.

I am trying to figure out what is normal. In some ways I feel a little better than I initially felt. In some ways I feel worse. More tired. I feel more overall shaky than when first diagnosed. My blood is monitored every 2 weeks.. complete blood count, iron and b12. Iv had a clean MRI.

I would love to know the process of people with levels in the low normal range initially to gage what is normal.

I want to be optimistic that when I finally get loading doses I will feel better. I know it is normal to feel worse before you feel better too.. wondering if that is what is happening now.

I’m trying not to get down. I would love to hear recovery stories of people who had a similar experience to me.

Forever grateful for this group!

[clivealive Forum Support]

Hi CW12 if I remember correctly you are in the United States where treatment protocols are different to us in the U.K.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

You will probably have read on here people trying to get maintenance injections more frequently than every three months - but this is regarding hydroxocobamalin whereas I think you are having cyanocobamalin which needs to be injected every four weeks.

I wish you well

[CW12 in reply to clivealive]

Thank you!!! Yes I am having cyanocobamalin

[Nackapan]

All o can add is that it takes time

It also doesn't go in a linear line. I now treat it like a cruel game of snakes and ladders.

As you've had injections already it shouldn't be such a shock to the system as your b12 levels have gone up already when you step up the frequency . That's only my theory. Unfortunately nothing is 'normal'everyone seems to recover in a different way and order.

Be kind yourself tey and have a short walk daily if possible. Eat and drink lots of water.

Hope you feel the benefits sooner rather than later. They will happen.

[EmmaWoodhouse]

My level was 182 after years of doctors telling me I was fine. There was a lot of back and forth with symptoms improving. My symptoms seemed to improve in reverse order. I also experienced new symptoms during healing. What I found was that the better times started getting longer while the worse times started shortening. It does take a while to improve. Be very kind to yourself; you’re doing the best you can!

That was nearly 11 years ago for me. I had a loading dose of cyanocobalamin then relied on sublinguals because the doctor wouldn’t prescribe more B12. A year later, I was able to get methylcobalamin injections for about 4 months total. At that point, I did not notice a significant difference in how I felt and figured where I was would be how I remained. I actually still did improve over the next couple of years after that. This year, I started going downhill again and was prescribed more cyanocobalamin which did help. I now have a hematologist who was willing to prescribe hydroxocobalamin, and at least so far, I feel like that is making more of a difference for me. It was filled by a compounding pharmacy. If you have any compounding pharmacies in your area, maybe you could call and ask if they can get it for you. I just told the hematologist that I wanted to see if it helped me more, but as everyone here knows, it takes a willing doctor. (I am in the U.S.)

I understand the shakiness! I do not have that like I did in the beginning. When I went downhill this year, I experienced prolong shakiness again. It is better now. Once I even thought a minor earthquake in our area was my own shakiness, not an earthquake! I found out on the news the next day.

We all come here looking for hope. I’m glad you’ll be getting loading doses. I can’t imagine how much longer it would have taken me with only one injection per month or even two per month. Learning more about other vitamins to take with my B12 was very helpful, also.

[CW12 in reply to EmmaWoodhouse]

Thank you this makes me feel better that someone else can relate to the shakiness. I can’t wait to start loading doses!!

[Miss-guineapig in reply to CW12]

Yes, my feeling that the ground was moving was my worst symptom when I was initially diagnosed. It does resolve very slowly and Fully resolved for me about 6m after first treatment, wishing you well CW12 x

[psawant in reply to Miss-guineapig]

What was you treatment like? During those six months?

[Miss-guineapig in reply to psawant]

The first six months was 6 loading doses of VitB12, followed by two VitB12 jabs 12 weeks apart, as instructed by GP . I also took 2x1000mg of oral VitB12 twice per day which I bought myself. Iron supplement (can't recall doseage) and 5mg of folic acid daily.

After 6 months I now buy additional VitB12 and have an injections every 4 weeks, multi vitamin daily, vitD3 daily and continue also with 4x 1000mg VitB12 tablets daily and folic acid 5mg every second day. Still have off days much much much better. I am aware people don't advocate oral VitB12 because we don't absorb much hence why I take 2000 twice a day, as I hope every little helps hahaha. Wishing you well x

[psawant in reply to Miss-guineapig]

Thank you guineapig for the treatment details

[Buttercup1283]

Here in the U.K. they don’t like to give b12 injections. My level was 170 and gp refused so I’m taking oral sprays and ones that dissolve under the tongue. At least u got some injections I suppose

[Hidden in reply to Buttercup1283]

There were at least two UK doctors, who were hounded by the GMC.

Not sure exactly as to why, but after these "examples", no other doctors would want to "risk" it by offering B12 injections.

It would be interesting to find out about the criteria for B12 injections.I should check the NICE guidelines without being lazy, though.

[Buttercup1283 in reply to Hidden]

Problem is when u start to tell doctors how to do their job they get crabby. They don’t like to be told they might be wrong and can become even more difficult to deal with. That’s what I’m afraid of

[Hidden in reply to Buttercup1283]

Yes, quite understandable, Buttercup.

Some GPs wouldn't mind being guided by patients.

Some do.

I looked at the NICE guidelines since.

I suspect implementation is not going too well for many.

"Neuro symptoms" on the NICE are non-specific.

How would they know these are from lack of B12?

This comment is based on my own experience,

which may not be the same for others.

It's good to have groups for this condition.

I learned so much from these sites.

[pejka62]

my reading was 211 and the first doctor would only give me one shot period--now from what I read here, that was not enough--so I got another doctor who prescribed 52 shots--one a week for a year--I feel like he is the reason that I'm not in a wheelchair today.--I'm about 70% better than I was but I still have nerve damage and muscle wasting damage in my legs that will probably never come back.

I still take a B12 pill every day 2500mg and my reading now when I have it checked is about 440. I feel I caught this just in time. Good Luck

[waveylines]

All my sympathy! My b12 level was low but in range. I had tremors in my legs arms hands, neck/head and mouth; bowel & urinary incontinence; blurred and double vision; extreme fatigue & weakness (could barely walk); memory issues; poor balance; very ridged nails. 18months of treatment & most symptoms have gone but I still have a very mild tremor which is gradually improving.

So the b12 ranges are a guide not an exact science........someone else with a simular level to me could have very different symptoms or only be very mildly affected.

It takes a long time for your body to recover and repair. Its worth keeping a log of your symptoms alngside the b12 medication & anything else you are taking.

[CW12 in reply to waveylines]

Thank you so much. This post is helpful as Ian feeling frustrated. My MMA and B12 are in a normal range but my symptoms persist.

[Hidden in reply to CW12]

Now you are under a haematologist, running tests for you.

That is quite an accomplishment.

Well done.