Symptoms returning

[Charlie27612]

If you have become low in iron / magnesium due to b12 injections eod for 9 months, can your symptoms feel like they are worsening again. I am due to have another private blood test to check my iron status also vit d and folate. But I'm just over a course of antibiotics for a urine infection so waiting till next week. My legs are so achey I have trouble when I start to walk and spending more time in bed any chance I get. I dont seem to get the energy boost anymore on injection day either. Also my family cant understand why now I'm on treatment I'm still not my old self ie doing everything for everyone ! When I get my test results the private dr that diagnosed me originally will look at them and advise. I get so confused with advice on protocols for vit d etc I tried taking magnesium glycinate but upset my stomach. Is this normal to have a set back like this ? I use vit d k2 and magnesium combined patches once a week, but have started vit d drops in coconut oil too. So fed up . I inject subcu is there an advantage in IM? Think I'd be too scared to do it though 🙄

[jade_s]

Hi Charlie27612, sounds like you have a lot going on. Yes any one of those can cause worsening of symptoms (depending on the symptom). Couple of thoughts.

First, do ask your doctor for labs. Folate, iron panel (serum iron, % saturation, TIBC, and ferritin), vitamin D, RBC magnesium. Do you have thyroid issues or is it in the family? TSH, FT4, and FT3 can be good to get. CRP can show inflammation.

If your folate levels have gone low, then that can prevent B12 from doing its job, and it has some additional side effects. So I would get that tested. You may ask for an RBC folate in addition to serum folate, as the former may show your long-term storage levels, whereas the serum one is more of a snapshot in tme.

I was at a hematologist yesterday for my FIL, and he said that infections can lower iron. He also recommended a full iron panel, just like we do here: serum iron, % saturation, TIBC, and ferritin. He said that serum iron and ferritin can be poor indicators in some cases, so they look at % saturation and hemoglobin.

Vitamin D - yes a tricky one. If Mg glycinate upsets your stomach, you could try another form. If Vit D levels are high, you don't need to supplement. Both Vit D and iron can be toxic at high levels, so please do test.

And check that your B12 hasn't spoiled in the heat. I kept my B12 and folate in the fridge during the latest heatwaves, but totally forgot about thyroid medication - I was getting more and more hypothyroid and couldn't figure out why - well they had spoiled during the heatwave. I've spoiled B12 in the past the same way.

Finally, Being ill can use up B12, but if this has been going on for over 9 months, then perhaps your doctor should do more extensive testing, e.g. liver, kidney, pancreas enzymes, a full blood count (WBC and RBCs), and whatever else they think might help.

If SC was working for you in the past, I don't see why it still wouldn't work. I would look into all of the above first. IM is daunting but not that much more difficult once you train your brain

[Charlie27612 in reply to jade_s]

Thanks for your reply, yes I have hashimotos thyroiditis too (lucky me) due for a test for that soon with gp, but had my dose raised 3 months ago. My main symptom is achey legs , balance issues,legs and feet twitching at night, visual disturbance, blurry vision, my energy levels increased for the first 6 months and my ferritin hardly dropped. The terrible tiredness and burning itchy body has all gone now , plus the crawling sensations decreased .my sister has PA too.My vit d was 50 when I started treatment and I do take folic acid prescribed by private dr. I'll get all the bloods done and take it from there.

[Charlie27612 in reply to Charlie27612]

I keep my b12 in a small cool bag in a drawer in a cool room so hope its not that, I recently got a new batch of 100

[jade_s in reply to Charlie27612]

When my B12 and/or folate are insufficient, I become intolerant to thyroid medication (Levo) - that is, I get low B12 symptoms and get shakey/jittery. I don't know if that's playing a role in your case.

Once you have your thyroid results, you may want to post on the ThyroidUK forum here on HU - it's a bit like our sister forum. healthunlocked.com/thyroiduk

Please note the ideal testing protocol (patient-to-patient tip, as they call it there) healthunlocked.com/thyroidu... - Test early in the morning (~9am), fasting, with nothing but water, and don't take your Levo until after the test. (if you normally take it night, you need to adjust the schedule a bit).

[Nackapan]

I get set backs with anything else going on.I.e dentistry

Colds

Antibiotics

I do sc .

I do stick to my IM one 6 weekly .

Been doing this for nearly 3 years.

Occasionally I think a benefit from IM .

However from my notes disappointing they don't last longer than sc.

I'm just very wary of changing anything.

I shouldn't worry about sc .

You will get back to where you were.

I'm not back to 'my old self ' but definitely slowly slowly improving .

T c

[am111]

Your symptoms returning are probably due to bacterial infection that uses up more B12. Should feel better automatically after some time, although you can increase the jab amount/frequency for some time to get over this period. SC vs. IM doesn't make much difference if the dose is the same. IM will take 15 mins to go into blood while SC takes around 2 hours, but doesn't make much difference in the ultimate results, as both are fast enough.

[PhilAB]

Sorry, if mentioned but how often do you inject?

Also, if you have thyroid issues I would take iodine drops.

[Charlie27612 in reply to PhilAB]

Every other day for 9 months now

[SeaglassMenagerie87]

What antibiotic were you on? Nitrofuritoin shouldn't be given to people with b12 deficiency and yet is often used for UTIs.

[Charlie27612 in reply to SeaglassMenagerie87]

I was given trimethoprin I will never take nitrofuritoin as I had a bad reaction to it, before I knew I had pernicious anaemia,

[Whoa182]

I probably has to do with the antibiotiocs. I can't take antibiotics without all my nerve symptoms coming back. I found alpha lipoic acid helps a lot though.

[B12life]

how often do you inject? If you so used the injections maybe you slowly got depleated.

Also, you can get fungal infections from antibiotics and there really isn't any good tests for that. I Al ways Take an antifungal with antibiotics.

Those are my two suggestions in addition to the other things suggested which are good.

I had my gallbladder out so I have to take 5k IU - 10 K IU per day of vit d. I don't r recommend that high off dose unless you had your gallbladder out and are found to be deficient in vit d as you can overdose on vit d. 1k IU /day is what I recommend for a regular dose, maybe 5k IU in the winter.

[Charlie27612 in reply to B12life]

Thanks for your advice, I'm having my vit d blood test next week so will see what that says

[Whoa182 in reply to B12life]

I wish we could get a better idea on here of how common it is that we worsen after taking antibiotics. I'm coming up to a year now with a chronic UTI because I've been unable to tolerate antibiotics. I'm still waiting for phage therapy (Eliava are creating a custom phage for my specific bacteria).

I doubt it's depletion of B12 from antibiotics. These side effects can show up within hours.

I'm trying 100 mg of Trimethoprim twice a day. Starting on a low dose and hopefully get up to 200 mg twice a day. We'll see what happens....

I tried 3 times (before I knew I had B12 deficiency) and it caused me burning nerve pains that were so intolerable I had to quit taking the antibiotic. Same happened for Doxycycline. And even Hiprex!!! (an antiseptic). It's absurd that this is happening and no one can figure it out.

This time I'm taking it with high dose B12 supplements (5 mg), methyl folate 800 mcg, Acetyl L Carnitine, N-acetyl-l-cysteine, and Benfotiamine.

It seems that small fiber neuropathy or B12 deficiency makes us incredibly sensitive to medications (and even some supplements).

I thought I had answers before. But no one can figure this out.