Rapid responses to daily subcutaneous B12 injections??

[faithrenae]

I was diagnosed with pernicious anemia and iron deficiency anemia 3 months ago. (I’ve had 2 iron infusions so those levels are better now.) The B12 injections are extraordinarily helpful. I’ve been getting them subcutaneously on a daily basis. (I can’t tell any difference between subcutaneous and intramuscular shots.) My doctors insist that once a month is all i should need. But when I go for more than 24-36 hours between shots, my leg muscles get weak, concentrating is difficult, breathing gets harder, etc., etc. One doctor says something else is going on if my body cycles through the B12 that rapidly. When I do finally get a shot, I can tell a big difference within 2-3 hours. I’m wondering if anyone else feels totally depleted within a day or so between injections or experiences such rapid improvement after a shot. Is that “normal”? Or, does it sound like something else is also occurring? This is all quite new to me, so any guidance or insights are very welcome!!

[Sleepybunny]

Hi,

There are people on here who manage on high dose oral B12 tablets and people who manage on typical NHS (UK) treatment which is an injection every 2 or 3 months of hydroxocobalamin but I think these people are in the minority.

There are forum members who inject monthly, weekly and daily , even twice daily so we're all different.

I'm not medically trained.

Some people report that symptoms get worse before they start getting better when treatment starts.

Do you mind me asking which country you are in?

The reason I am asking is that patterns of treatment for B12 deficiency vary between countries and type of B12 used can vary.

Have your doctors checked your folate and Vitamin D levels? Forum members often report deficiencies in these and iron.

Some people can develop low potassium levels when B12 treatment first starts so your doctors may want to check your potassium levels.

Quite common for forum members to also have thyroid issues so may be worth posting thyroid results on Thyroid UK forum on HU.

A few links that might be useful....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members not in UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

(Has useful lists of symptoms/causes)

b12-institute.nl/en/home-2/

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

[faithrenae in reply to Sleepybunny]

Thank you for such a helpful response! I have so much to learn. I live in the US and most doctors here don't know much about Pernicious Anemia or B12 deficiency. I'm mainly wondering if it's unusual to feel significantly better only 2-3 hours after an injection.

[Nackapan in reply to faithrenae]

Great you do.

I think intensive b12 therapy if responding well a very good thing and shoujd continue.

I personally got alot worse before better .

Took a very long tine to get z feeling of relief within a few hours.

I used to describe the need as putting my body through it for healing then the injections woujd put horrid symptoms 'on hold'.

Then gradually small improvements not in a linear line.

Go with it.

So glad you are getting relief so early in treatment.

All my opinion and personal experience only.

[lynxis]

I'm also in the US. I have been injecting daily for 2.5 years now and my baseline is pretty close to my old normal at that frequency, so I don't notice feeling better after an injection, but I do notice feeling worse if I miss one (if I skip 2 days, the interval vibration/tingling/buzzing keeps me up at night.) I started with injecting every 3 months and was still declining, then 1 month, then 1 week, then every other day but was still having the vibration neuropathy and finally settled on every day and I feel like I have my life back. I do have a return of symptoms if I am sick or stressed or with greater physical exertion.

I tell my doc I inject weekly. I'm not comfortable being more honest than that given what I have been through with doctors. I am glad to have an illness I am able to treat myself, whether they listen to me or not.

I'm glad you are feeling better!

[BS2022 in reply to lynxis]

Hey, I know this post is a few months ago but just wondering how long on daily injections until you saw a difference? I’ve just switched to daily due to that awful buzzing/vibrating which does seem to be worse at night!

And just wondering how much folate you take with daily injections? Many thanks

[lynxis in reply to BS2022]

IIRC, I noticed a difference pretty quickly, within a few days, maybe. But definitely folate and (even more so) vitamin D have been issues for me, as well. When my D was deficient, the neuropathy came back despite the daily injections. For folate, I currently take a multivitamin with 666 mcg of methylfolate.

I have also noticed talk of buzzing and vibrating on the thyroid forum. (I take Armour for subclinical hypothyroidism. So if you don't see improvement, you could consider getting your thyroid levels checked. And note that just because they come back "normal" doesn't mean they are optimal; I had to go to an integrative doctor before anyone would treat my thyroid symptoms, and that made a HUGE difference in my quality of life. Stop the Thyroid Madness has been helpful to me and also the Thyroid UK forum.

Those sensations are awful. I hope you feel better soon. ❤️

[BS2022 in reply to lynxis]

Thank you! My TSH was 1.2 and T4 16 last week although I will be getting an extended thyroid panel to check T3 and antibodies next month!

Gosh how low was your vit D when the neuropathy came back? Mine was 81 a few months ago..hopefully hasn’t dropped too much since then.

Do you have Hashimotos out of curiosity? Seems to be quite common with thyroid issues and vitamin deficiencies in these forums!