Pernicious Anaemia Society
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Fighting B12 deficiency

Putting all my symptoms as somebody else might benefit from it. I was diagnosed with B12 deficiency in Jan 2018. It all started with burning sensation in my left forearm which then spread to leg, shoulder blades, hands etc. I took it as Heart issue and was shit scared. Visited my family Dr immediately. He did ECG test and said its all ok and nothing to worry. But this left side issues left me anxious like anything. He asked me to have my blood tested for CBC, Diabetes and B12.

Following are readings when this all started:

B12: 206

Sugar (Fasting and post lunch): 72 and 87

Haemoglobin: 15.4 mg/dl

Triglycerides: 101 mg/dl, Cholesterol total: 189 mg/dl, HDL: 48%, VDL: 140 mg/dl

Now below is the list of Symptoms that I faced during last 1.5 months:

1. Burning sensation in left arm, left leg, At the bottom of wrist, hands, shoulder blades, behind neck

2. Numb little finger in both hands, tingling sensation

3. Twitching/discomfort in left eye

4. Nausea

5. Diarrhea - When started on injections

6. Mild headaches

7. Acid reflux

8. Dry mouth and thirst

9. Shortness of breath - For 2-3 days only

10. Muscle pain - Legs, arms, Chest, Back, Side of neck

10. Anxiety and Depression

Out of these, Burning sensation, headaches, diarrhea, Acid reflux, dry mouth and thirst gone.

I still feel mild and random muscle pain in legs, arms, chest, lower back anytime in the day. The chest pain has given me anxiety and depression even though I know its not related to heart.

Post completing 10 injections, my B12 level shot up to 1720 from 206 but some symptoms are still there. Chest pain took a break of 10 days but returned couple of days back. The pain is very dull but then makes me go crazy with all that sense of doom.

Even though my blood has a lot of B12, it seems like, my body is still not able to make most of it. I have no idea how much time body needs to make use of it. After reading through this forum, I got additional tests done now post my course of 10 jabs:

B12: 1720

Ferritin: 126.9 ng/ml

Free T3: 3.23, Free T4: 1.91, TSH: 1.12

Folic acid: 19.70 ng/ml

Sodium: 137 mEq/L, Potassium: 3.9 meq/L, Chloride: 101 mEq/L, Magnesium: 2.07 mEq/L

I shall keep updating this thread so that you guys would know how things progress in case of B12. I really hope, I would come out of it alive and soon.

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Hi linkerror firstly don't be over concerned about the high level of B12 as any excess to requirement is excreted via your urine.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 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.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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serum B12 isn't a test that can guide treatment post loading shots - which will actually have made your B12 levels sky high and it had fallen to 1760 when you had the blood test - initially it would have been off the scale.

Normal range doesn't apply post loading shots - many people report needing B12 levels very high after this in order to function - myself included. You need to go by symptoms and if they have returned that implies that you need another top-up,

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Honestly, I think the anxiety part of it is the worst symptom to deal with! I've had anxiety since my teen years and now I know why. Unfortunately all of my symptoms improved except the anxiety. You are absolutely right that the chest pains and all of the aches that rear their head once in a while make it that much worse. I gave in as I couldn't stand not having calmness in my life and started on medication. Made a world of difference but some anxiety showed up again but it's an adjustment for the system. It has only been a month so hoping it gets better. Anxiety is terrible and also causes so many physical symptoms. Mine definitely caused my chest pain. Good luck to you on your journey.

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Are you supplementing with folic acid (up to 5 mg daily) and a daily multivitamin ? Also look at B1 and B6 to support nerve repair.

Start yourself a logbook and assess each symptom on a daily basis. Your own scoring system is fine. Nerve damage takes a long time (months and years) to heal and the logbook allows you to monitor the progress.

Any short term memory loss? The logbook helps here as well.

Some symptoms arise from the B12 jab. They tend to repeat in a sequence over 3 to 4 days after the jab. Treat the jab as day zero each cycle and record start and finish of each symptom- look for the pattern over several cycles.

The ones from the jab are “good” indications. The diarrhea/ soft stool is a side effect of all your cells kicking into metabolic overdrive each time they get fresh B12. Water and CO2 are the primary byproducts of metabolism.

The pain symptom is counterintuitive but if you tell yourself it is “good”, work through the pain and don’t stress out about it, the brain recalibrates faster to the stronger signals and the pain disappears. Getting started is the hard part. Stress and worry make things seem worse.

Good luck getting to know your individual roller coaster ride of highs and lows

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>> Are you supplementing with folic acid (up to 5 mg daily) and a daily multivitamin ?

Yes, I am taking Folic acid and Multi Vitamin tablets everyday since I stopped the injection (As they had it). My folic level is above normal but I guess thats fine given my B12 is also very high.

My Ferratin is 126 while upper range is some 350. That means I might be low on iron stored in my body but its not too low either (Low - 40).

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Treat your level of anxiety as another symptom. Give it a daily score. It is hard but if you can detach from it and look at it like you do your pain or diarrhea you can start to use it as a marker symptom.

Supplementing with daily methyl-b12 sublinguals may help fill in the gaps between jabs.

I found i got a really severe symptom of anxiety as well as aggression right after the jab. The stronger the symptom, the lower my B12 was before the jab. Sort of like overshooting the ideal.

This is a good indication that you may need more frequent jabs to level out the highs and lows.

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I have kept a diary of symptoms for last 45 days. I could see I have benefited from the injections but the fact that its been 45 days and still I am recovering bothers me.

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Repair of nerve damage takes a long time if ever. Repair to lost myelin sheath may be possible but it is very slow and any upset in the progress seems to put one back at square one. If is very frustrating to see these set backs when they occur.

If the axon is damaged, the nerve is unrepairable and the damage is permanent. Any regrowing of new nerves also takes a long time.

The repair of the nerve is triggered by stimulating it. Muscular movement with range of motion exercises helps and any cognitive exercises- playing majong for a simplistic example - helps stimulate repair of the nerves in the brain.

Ive been doing this for 10 years and i see improvements in myself. You forget what was repaired until the symptom recurs and then you realize it had disappeared for a while.

You want tour B12 levels high to support the repair. Don’t let a Dr tell you “ you are now normal and we can stop the injections “, as neeve damage really never goes completely away.

Unfortunately, you will keep seeing symptoms return until you have a stable dosage and supplement schedule.

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Thanks a lot pvanderaa for the write-up.

I wonder, why all of a sudden this burning sensation started? It was as if I broke my bone in an accident. Sudden series of symptoms started showing up.

After 2 injections, almost 90% of burning sensation stopped in all the areas. I assumed it to be repaired until today morning when I had slight burning in my forearms. I was having injections every 3 days and the course of 10 injections has stopped for last 10 days now when I took the last injection. Does that mean I need to again restart the injections? I have 1700 serum B12 as per my blood test done 2 days back.

Tomorrow I would be meeting my Dr and would ask him if we can restart injections every week or 10 days may be.

Any idea how much time it takes to get rid off the muscle pain? I usually have dull muscle pain in different parts of the body and it really bothers me.

I was PERFECT without any kind of pain/burning sensation just one and half months back. I am really worried when this would all stop. Fortunately, my Dr started injections just 2 days after I started seeing symptoms.

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Thank you for sharing.

My b12 was 176 and was having lots of burning/ pins and needles in arms and legs.

On 4th loading dose now and still having tingling in arms (mainly right)

Drs seen to think anxiety is making this worse but I cannot stop thinking they are missing something and it must be MS.

Honestly the worry is driving me mad.

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B12 is an energy hormone and too much too sudden increases anxiety levels, like when you have too much caffeine (like a caffeine overdose)

The same thing happened to me and I had to cut back on the frequency of injections. Instead of 6 loading doses (3 per week my doctor cut down to 1 injection per week. The anxiety went after a while

So your having too much B12 too often (it happens to some people not everyone).

Go on 1 injection a week and no oral B12 in between jabs. If you take as is recommended (6 loading doses in 2 weeks) each time you have an injection your levels of anxiety will increase, as I said it’s an ‘energy’ hormone so that extra boost of energy will cause anxiety. Also can cause chest discomfort, heart palpitations, breathing difficulties due to high anxiety levels. That is the problem. Introduce B12 in to your body more slowly (1 injection per week).

I had same problem and reducing it took away the anxiety.

It took me about 3-4 months of weekly injection to notice a big improvement in my health after which I reduced to 1 every 2 weeks. It will take a bit longer for recovery but will take away those side effects you’re having.

It’s good to take Folic Acid daily with B12 as they work together. You can take a low dosage like 400ug of Folic Acid (daily recommended amount.

Make sure your Iron and Vit D levels are good and supplement if you need to as this will help greatly.

Don’t worry it’s very unlikely you have MS.

Just reduce to 1 a week and you’ll feel better. This will still give you high level of B12 which you need but just take a bit longer.

You need to give it 12-16 weeks of weekly injection and don’t take B12 tablets in between, that will only make anxiety worse.

I been on B12 2nd year now and when I have my 2 weekly Jab I feel the increase in energy, but no anxiety.

Folic Acid, Iron and Vit D will help greatly.

I been through the same problem.

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This B12 deficiency sucks more so because of the fact that it has left me restless. I had never been this anxious in my life and now every now and then I think about the chest pain and its root cause. Even though my Dr has assured me that it has nothing to do with Heart, I constantly keep thinking about it. I am in India and these days the health has become a business sector where seldom Dr speaks truth and dont try and loot you. Seen Dr asking people to get surgeries done when in the first place its not required. Everything is money driven and insurance has made it worse as Hospitals bloat your bills and Drs get you operated for every simple reason.

I was a happy go lucky person till 1.5 months back and now I have become a zombie who dont socialize often. This deficiency has brought a weird sense of doom into me and made me miserable. Even though this is fortunately not a disease which cannot be cured, the toll it takes on your mental health is too big to ignore.

I will start with tablets now to maintain the current 1700 B12 level so that my body can absorb as much as possible.

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Been 2 and half weeks now that I am done with my loading dose of B12 jabs. As of now I am on Multi Vitamin tablets (Folic+B12+D+E + some others).

The burning sensation in different parts of my body is 95% cured in 2 months. Once in 3-4 nights I get numb/tingling sensation in my right hand little finger. Since couple of weeks, I am having this slight prick sensation on my cheeks and lower jaw (Both sides). Its not a pain but a discomfort for sure. I hope this is healing of the nerves which my brain might have forgot about some time back.

The chest pain has reduced but not yet stopped. At times its like mild tightness in the chest. The anxiety has got better of me and against my Dr's wish, I went ahead and got chest X-Ray done. The X-Ray report says Cardiac silhouette appears normal and the cardio-phrenic angles appear normal. No issues with lungs either. So most probably the chest pain is due to muscle weakness in chest or else the nerves in the chest are being healed and so sending a strong message to brain which is interpreted as pain somehow.

Anxiety is still present and I feel would trouble me till the time my chest pain reduces. There are days when I feel like I am done and would die soon. Trust me guys, this feeling is terrible. Never ever in my life I have been this depressed. This is how B12 plays havoc in your body. I wish I would have known this earlier and would have monitored and took medication well in time.

Thanks to my family Doctor, he started with injections the time my body started up showing symptoms. I still wonder how come this thing struck me all of a sudden!!!

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