Help, need guidance, major setback

[Iheartb12]

Hi, all. I've had a terrible month. Long story short, I got sudden hydronephrosis and passed a lot of sediment from my kidney that wasn't identified by the lab. At the same time I got the flu and had an embedded iud. I was in excruciating pain for a month and very sick with a fever for weeks. Hard to tell what symptom was from what cuz so much was going on at the same time. Barely slept for a month, was taking high dose nsaids and tylenol for pain and fever. Had 7 days of sulfa antibiotic. Barely ate, lost 10 lbs.

Blood tests still indicate I am fighting an infection and have macrocytic anemia.

Now all sediment has passed, all scans clear, iud removed, still dealing with a cold. Coughing up a lot pf phlem.

During this month I only had 2 b12 injections, usually would have done 8. Probably missed more than that cuz I think it's been 5 weeks now, idk I've lost track of the days. I'm having some scary symptoms still, not sure if it's b12 or something totally new going on. Kinda scared, need some opinions. Docs keep saying I'm fine but I'm not fine.

I've been getting really high bp, high heart rate and blood sugar spike without eating (according to blood tests right after episode). Episodes last a couple hours. Went to ER 2x thinking I was having a heart attack, all tests normal. I've been having headaches and feel shaky inside.

I've also missed at least half of my levothyroxine daily doses, back on it now.

I'm well enough to do injections now. I did one yesterday and one today.

Any idea if this is a normal reaction to so much pain and illness and not getting b12 when you have PA? Anyone have similar experience?

I'm actually pretty scared. Docs are no help.

[am111]

I think your symptoms could be due to missing levothyroxine doses. In my experience, Levo doses are much more important than B12, as the body is able to adjust somewhat to missed B12 doses, but missing Levo can be much worse, as the whole body metabolism can go out of wack. Missing half the doses means you are getting only half the T4(and T3) and they could lead you to the high bp etc. that you are experiencing.

Anyway, going forward, do not miss Levo dose and you can be back on B12 injection schedule. Do you have some neurological symptoms as well? If not, you may be able to do with lesser frequency of B12 injections, say once-a-week. I think it is better to be on lower injection frequency, so that even if we miss sometimes, it is not too bad.

[Nackapan in reply to am111]

I'm not on any medications.If I'm 1 day late with a b12 injection I suffer with symptoms coming back.

If I get a head cold or anything j need more b12 .

So I think it's a combination of the two in my mind.

Catch up from missed thyroid meds and missed b12 injections takes time .

And getting over the illness.

So no quick fix .

Hope improvements are made soon.

[am111 in reply to Nackapan]

In my experience, missing B12 injections becomes more of an issue for those on more frequent injections. Lets say one is on once-a-week injection. If the person misses by one day, it is only 1/7 time missed. On the other hand, if someone is on EOD injections, missing one day is like missing 1/2 time which will lead to problems. I have been on both and I found that it is better to be on the lowest dose possible so that it is easier for the body to adjust.

[WIZARD6787 in reply to am111]

Thank you for your very rational understanding of the body, adjusting to more frequent injections.

Are you symptom free with the less injections?

[am111 in reply to WIZARD6787]

Whenever I reduce the frequency or dose drastically, it leads to B12 deficiency symptoms returning. Hence, I have been gradually reducing. Currently on 50mcg/day cyanocobalamin, reducing by about 2.5mcg/day dose every week. This way I don't feel any symptoms and the body gradually adjusts to a lower dose. Although a 5000mcg tablet in theory gives the same amount of cyanocobalamin into the body, I find the injection gives me better symptom relief and I have stuck to it. I think it is because of 2 reasons: (1) An oral tablet gives you variable absorption. On orals, my symptoms returned due to a diarrhea !!! (2) An oral tablet is absorbed over some 8-12 hrs, which is probably not ideal, at least as per my experience.

[WIZARD6787 in reply to am111]

Thank you for your reply. This concept may be ground breaking. Then again maybe not.

How do you inject 50 mcg a day? Perhaps you are injecting .50 ml. I have made this error is why I ask.

[am111 in reply to WIZARD6787]

I am able to get a multi-dose vial (quite cheaply, I might say :)) that has 500mcg/ml. The bottle is 30ml and can be used upto some 42 days once opened as per WHO guidelines. Hence, to get 50mcg, I have to inject 0.1ml. I do this with an 1ml insulin syringe (31G 6mm) and inject sub-cutaneously into my abdomen. Don't feel much pain and it is easy to do.

[WIZARD6787 in reply to am111]

Again thank you so much. Could you share your source of the B12.

I was not aware of the max use of 42 day guidance after opening a vial. I stopped injecting to try a trial of sublingual and when I started injecting from a vial I had not used I developed slight pain and swelling at the injection sites. There was congealing in the bottom of the vial I could not see through the amber vial but could when I dumped it out to check.

The pain and swelling resolved completely in a week.

Multi use vials are so much easier than ampules or liquid in a vial without the 'rubber' top. Some believe that the multi use vial are more susceptible to causing infection. I do not hold that belief.

[am111 in reply to WIZARD6787]

I am in India. I got these from here:

pulseplus.in/product/l-vit-...

It is <1USD for a bottle (I think it helps that India is a generics manufacturing hub )

It needs a prescription and may not ship outside India

I have used these for close to 6 months now with no issues. I have never got a swelling, but sometimes due to hitting a blood vessel, there is some blood and a blue patch that resolves after some time. I do not go more than 1.5 months. I think they are perfectly safe, perhaps even up to 3 months, but if there is some congealing at the bottom, it might be an issue. In any case, I always use an alcohol swap to clean the rubber top, just in case. Much more convenient and cheaper than the ampoules I was using earlier.