confused about symptoms even after loading dose b12

[Striveforhealth]

Hi there. I had a b12 deficiency last year June with levels of 126 . I was put on weekly injections of B12 and Co and then monthly for 6months. Lots of symptoms disappeared but I still had pins and needles in my left foot and shin . Also muscle stiffness. I didn't get the twitches, shortness of breath and burning sensation like before. I remember laying in bed and feeling like I was going crazy with stuff crawling inside. That is gone at least.after the 6mths I felt ok just couldn't do my normal running or do anything strenuous. I left it alone didn't complain because I thought it's much better than what it was. As time passed everything started coming back. I went to the doctor before it got worse, they checked my levels and I was on 270. Firstly is that low considering I got injections for so long? They put me on more injections once every 2weeks for 3mths. I also don't know what to do about this muscle stiffness that doesn't want to go away? I can do daily things but just alittle exercise makes it so stiff. Also I lost alot of weight I just felt nauseas all the time. Since injections I eat like normal but I can't put on weight. So many things.....

[Adsypadsy]

Hi,

I've had most of the symptoms you've had but not initially, the burning feet and aching legs came later during lock down when B12 jabs were withheld for a while. Most of my symptoms are under control now, except my left foot, I suspect possible permanent damage, but it does vary in severity between jabs. I've increased the frequency of my jabs slightly, in the hope that it is still recovering but more slowly.

About a year ago I started getting aches and pains all over, mainly my legs. GP arranged blood and inflammation tests, the results showed my folic acid level had dropped. A course of high strength folic acid tablets for 3 months and I felt much better, so it may be worth getting that tested if not already tested. I now take a daily multivitamin, which includes folic acid.

Is GP investigating cause of low B12?

I hope you're feeling better soon.

[jade_s]

First, can I ask what country you're in? It makes a difference regarding availability of types of B12, national guidelines, etc.

I was put on weekly injections of B12 and Co and then monthly for 6months.

Can I ask, what is "Co"? Do you mean cobalamin? What type? Cyano, hydroxy, methyl?

Lots of symptoms disappeared but I still had pins and needles in my left foot and shin . Also muscle stiffness. I didn't get the twitches, shortness of breath and burning sensation like before. I remember laying in bed and feeling like I was going crazy with stuff crawling inside. That is gone at least.

It sounds like the injections were helping, but they weren't frequent enough. UK Guidelines call for every-other-day (EOD) hydroxocobalamin injections. If on cyano, they should be daily as it doesn't last as long as hydroxo. Crawling feelings and pins and needles are both a parasthesia, which suggests nerve damage and requires EOD or daily injections "until no further improvement."

I went to the doctor before it got worse, they checked my levels and I was on 270. Firstly is that low considering I got injections for so long?

Yes it's very very low. Were you getting regular injections at that point, and if how long had it been since your last injection?

They put me on more injections once every 2weeks for 3mths.

That's already better, but you might need them more frequently. And what happens after the 3 months? Are they going to stop them completely. Or will they reduce them, and to what frequency?

I also don't know what to do about this muscle stiffness that doesn't want to go away? I can do daily things but just alittle exercise makes it so stiff. Also I lost alot of weight I just felt nauseas all the time. Since injections I eat like normal but I can't put on weight. So many things.....

This again suggests to me that you are simply not getting frequent enough injections. Other things that can affect b12 and/or muscles are low folate, low magnesium, thyroid, and vitamin D levels. Have you been tested for any of those? Do you take any magnesium?

[Striveforhealth in reply to jade_s]

hi. I live in south africa, on the bottle it says, A- Lennon B complex and on the other bottle it says A- Lennon VitB12 ( cyan). I get two ml each every 2weeks. . I went back to doc after being off for 6mths. The doc doesn't seem to think it's low. He wants to send me for mri and other tests best of rapid weight loss. But that weight loss was more than a year ago and since then I haven't lost anymore it's just hasn't increased. I have checked vitD , magnesium and thyroid are fine. But my mom and 3 of my sisters have hypothyroidism. Am not sure about folate.

[jade_s in reply to Striveforhealth]

Sorry for the delayed reply. I don't know much about the B complex, most people get on fine with tablets.

But for B12, yes that's low and with your symptoms, it sounds like you might need them much more frequently than every 2 weeks. And if you have absorption problem like pernicious anemia (PA), injections should never be stopped - they are life-long.

Have they ever tested intrinsic factor antibodies (IFAB) or Gastric parietal cell antibodies? A positive test, especially IFAB, is indicative of PA. If they haven't, you could ask.

Unless you are vegan or strict vegetarian, and you eat some meat/eggs/dairy, you should absorb enough b12 from your diet. Otherwise, low b12 is probably PA or some other b12 malabsorption issue, such as stomach surgery, celiac, and others.

I am not familiar with the situation in South Africa but a quick google search suggests that you can get B12 injections at wellness clinics / health spas. Some of us also self inject because doctors leave us with no other options.

[Striveforhealth in reply to jade_s]

thank you for reply. How do they test for PA ? My stomach for a long time has been an issue with constant growling it's like food that I eat struggle to break down. After a few weeks of injections It'starts to subside. But I do feel bloated. I am regular everyday at least. I am 38 but I can't do any exercise. I don't think my doctors will do anymore without hospital admission and tests which are so exp.

[jade_s in reply to Striveforhealth]

The only blood test that currently exists for PA is the intrinsic factor antibodies (IFAB) test. However it can be negative around 40-60% of the time, and you can still have PA with a negative result. But a positive result is diagnostic. In the UK they also are able to diagnose "IF negative PA" using clinical symptoms.

Some doctor accept Gastric parietal cell antibodies (GPCAB) as being PA, but not everyone, because it can cross-react with other autoimmune antibodies such as autoimmune hypothyroidism.

An endoscopy can also show Autoimmune Metaplastic Atrophic Gastritis.

uptodate.com/contents/metap...

From the link: "AMAG is a form of metaplastic (chronic) atrophic gastritis that results in the replacement of the normal oxyntic mucosa in the gastric corpus by atrophic and metaplastic mucosa, leading to a corpus predominant atrophic gastritis, reduced or absent acid and pepsin production, and loss of intrinsic factor, which may progress to a severe form of vitamin B12-deficiency anemia known as pernicious anemia (PA)."

Stomach problems could be due to AMAG and/or low stomach acid. For the latter, people usually take Betaine HCl, apple cider vinegar, or lime juice.

[ssiddi2]

My number was 122 when i was first diagnosed and i had the pins and needles and extreme fatigue and weakness, nausea, and IBS. It took two months of weekly injections before I felt like I could run through walls. I made the mistake of moving to injections every three months and my symptoms came back with a vengeance. Even starting up weekly injections didnt provide immediate relief. It took three months before I started feeling great again. Been on weekly injections every since and my b12 number is in the thousands, but yet I still have some bouts of weakness, fatigue albeit nowhere near as bad as it once was. I realize now its a life long commitment and even though doctors havent been able to understand why I had a B12 deficiency or figure out why I continue to have symptoms despite weekly supplementing, the injections are the only things that help make the symptoms tolerable.

[Striveforhealth in reply to ssiddi2]

my stomach made so much noise for so long it still does but not as bad as before both time after taking injections for awhile they subside and I feel like I can eat again.