Things are getting worse

[Vongai]

So i started getting vitaminb12 shots (had a recording of 161 ) in Jan 2024.My doctor started giving me 3 shots in the first week then one shot a week for subsquent 4 weeks.I was told that i will be getting monthly injections now-so in total i have had 7 shots to date.Im experiencing insomnia ever since i started the b12 injections,my appetite is okay but im always feeling dizzy and a bit depressed.Im also experiencing a lot of tingling in the toes and hands especially at night and its so irritating-mind you this is getting worse as i get more injections.What do i do?Could this be an indication of something else.Has anyone also experienced the same?Please help

[Narwhal10]

Hi Vongai,

Welcome here. Sorry to read. Are you still in Zimbabwe ?

Yes, unfortunately, we can get worse before we get better. The injections are healing our nerves. So, we can experience more pain, pins and needles, tingling, burning. We notice it more when we are relaxing or trying to sleep. It does get better over time. We can become more tearful or irritated too. Hopefully, this will pass. I do hope that you have good iron, folate and vitamin D levels.

PA/B12 deficiency is a journey and you are on the road to good health.

Take care.

[Vongai in reply to Narwhal10]

Thanks so much for the feedback.Yes im still in Zimbabwe.My Hb levels were low 11.3 and my folate was within normal range.I guess i have to soldier on!

[am111 in reply to Vongai]

Hb can be low due to iron and/or B12 deficiency (plus folate and a few other things). MCV tells us the full picture and if it is low, it is due to iron deficiency and if it is high, it is due to B12/folate deficiency. Supplementing with B12 can unmask an iron deficiency, so you should check your iron levels, especially if you have symptoms of it, or could just take a lower dose iron tablet (generally taken every other day) just be sure.

Regarding your B12 issues, nerve healing takes time. Just continue with the treatment. Sometimes, once-a-month is insufficient (I assume you are on cyanocobalamin injections) and some people feel exhausted after 3 weeks or so, in which case you should ask for an injection every 3 weeks or so rather than monthly. Also, this will continue for life, as your body is not absorbing B12 and you will get deficiency if you stop the monthly injections.

Good luck!

[Budsa in reply to am111]

Hi am111,

My mcv was 98.7 (77-101) when measured recently even with a serum b12 of 411 (180-914) and serum folate of 13 (3.1-19.9).

Would you consider 98.7 to be high or just if its over the range?

[am111 in reply to Budsa]

A normal MCV is 85-90, so it is a bit high. Do you have any other symptoms of B12 deficiency?

Regarding serum B12, are you on any kind of supplementation, as that can distort the readings significantly? Serum Folate seems fine.

[Budsa in reply to am111]

My mcv has always been around this level looking back as far as 2010. I have been taking 1mg/day of B12 orally since 2020 with occasional drop downs to 0.5mg/day. Initially, I suffered from internal vibrations, burning numb feet, sore tongue, tinnitus, confusion and lower back ache. Serum b12 was 140 (180-914). My doctor gave me a months supply of 30mcg tablets and told me to source a good multivitamin after this. I was tested for parietal cell antibidies, intrinsic factor antibodies, coeliac disease and H.pylori. All negative

Over the last year, my numbness has spread up my rhs as far as my stomach. None of this area can detect heat. The burning has intensified and has spread to all of my right leg from the knee down. My balance, leg strength and walking ability have all badly degraded. I also have nerve pain eminating from my neck.

I have had an MRI and there are various problems including stenosis. The spinal consultant would like to operate but I took the decision to try self injecting b12 EOD instead. I have only done 6 so far but intend to continue for at least 6 months.

[am111 in reply to Budsa]

Don't go for any surgery. What you have is clearly B12 deficiency and everything else is humbug. For various reasons, orals don't work very well for all and your nerve damage symptoms and MCV is clearly showing that. Serum B12 is not a very good marker and will be high/normal on any kind of supplementation. MMA, homocysteine and active B12 are better markers of the amount of B12 going into the cells. Did you take Methylcobalamin or cyanocobalamin tablets, as there is some evidence that oral cyanocobalamin may be better?

You have taken the right decision to self-inject. From my experience, once you have finished your loading doses, you can go to once-a-week for the same effect and continue on it till full resolution of symptoms. In fact, I felt better on once-a-week schedule than on EOD. I would definitely suggest that. Another approach that has worked for me is a daily injection but of a lower strength, something like 50-100mcg. I am currently on 50mcg injection every day which is working fine for me, which I may reduce once all my symptoms are gone.

I am sorry but all these doctors are really misinformed regarding B12 deficiency and many of us have been mistreated leading to severe neurological damage as you. 30mcg/day for a person with such low B12 and neurological symptoms is just nuts, as you won't absorb much from it, given that you have b12 absorption issues. Even 1mg/day or orals is ridiculous given your symptoms, as it has been recommended only for maintenance. You should have been put on injections immediately.

Keep on taking the B12 shots regularly and you will improve gradually. 100% recovery is not guaranteed but you will be much better.

I may also add that I have felt better on methyl and cyano injections compared to hydroxy ones. It all depends on the individual and don't be afraid to experiment a bit if you feel any issues with one type of B12.

[Budsa in reply to am111]

Initially, I used oral cyanocobalamin but have also used oral methylcobalamin and for the last year, a combined methyl and adenosyicobalamin tablet.

As I bought 100 hydroxcobalamin ampoules I will stick with them on EOD for a while longer before reducing the amount or frequency as I am feeling some small improvement in some of my symptoms.

[am111 in reply to Budsa]

Most of the studies that claim that orals are equivalent to injections use cyanocobalamin. I do believe that your increased symptoms during the last year was because of switching to oral methyl, which in my experience and some studies, does not work as well.

Regarding injections, I have found it difficult to reduce the frequency, as I believe the body gets used to a certain level of supplementation. The idea that the body only uses what it needs and expels the rest in the urine is just not true. In fact, there are some studies that show the major route for B12 removal from the body is via bile and faeces. Most probably, the body goes into overdrive to remove the excess B12 once we start injecting large amounts. Hence, I do recommend you switch to once-a-week now which will be easier to wean off later. It might be OK to do EOD but do look out for return of symptoms in case you decide to reduce the frequency later on. With only 6 loading doses right now, reducing will be possible now; after some time it will become difficult or even impossible, as many here have found out, including me.

[Narwhal10 in reply to Vongai]

My pleasure.

I do hope you had your iron checked too. Do not be afraid to return to your doctor.

If you can afford to become a member of the Pernicious Anaemia Society which is 12.74 US dollars (sorry, I could not change it to Zimbabwean dollars)

Based in the UK.

pernicious-anaemia-society.org

Other free information and support is available at :-

b12info.com/

And this organisation has information and links to a Facebook page :-

theb12society.com

There is an American book too :-

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Please know that you are not alone in your journey. Like am111 says healing nerve healing takes time and the frequency of your injections may need to be more often.

zvichengetedze.