Hypokalemia with high frequency B12 injections

[Rheadster72]

Has anyone experienced low potassium levels while injecting every other day? Recent visit to haematologist and he has advised that I shouldn't inject so frequently because of the hypokalemia risk. He is drafting guidance for the local region for once monthly injections (which beats the once every 3 months). Hoping everyone on here feels well enough to enjoy Christmas.

[Gambit62 Administrator]

hypokalemia (low potassium) is one of the things that need to be watched out for when someone starts on loading doses and has macrocytosis (larger rounder red blood cells). It happens because the processes that kick off replacing the old deformed cells with new properly formed cells also uses potassium.

If you are past the anaemia stage now then I'm not aware of anything that would make hypokalemia a real risk but I'm not medically qualified.

[Rheadster72 in reply to Gambit62]

Thanks Gambit62. I'd just read your summary of your medical history earlier. Was interested to read that you'd had the "inability to filter out noises so you can hone in on solitary voices/conversations". That symptom has been driving me mad recently. Really don't know whether I should start back up on the self injection. The only thing I know is that I managed to get out for a couple of runs after 1 month of every other day dosing; whereas now having gone 1 month without an injection I feel lowest again. The low potassium has been a constant concern, so just wanted to see how real a risk it was from other people's experiences. Thanks again

[humanbean]

On the subject of low potassium, but not in the context of supplementing B12, you might find this interesting :

drmalcolmkendrick.org/2013/...

Edit : And it is essential to read the comments too - they substantially add to the article.

[humanbean]

I must admit I wouldn't take the doses suggested by that link, but some of the links within it might be helpful.

[Rheadster72]

That line alarmed me somewhat too!

[Sleepybunny]

Hi,

Pleased to hear that haematologist is thinking of once monthly injections. PAS (Pernicious Anaemia Society) might be interested in hearing about that.

Links that mention hypokalaemia

b12deficiency.info/b12-trea...

b12deficiency.info/what-to-...

bnf.nice.org.uk/drug/hydrox... See Side Effects section

[addie18]

I was never tested for hypokalemia, but I had tons of leg cramps and they seemed to be partially relieved by potassium-related home remedies like sports drinks & pickle juice (respectively). This was after I started injections, first 2000 once per week for a few weeks, then 1000 once per week after that. So maybe hypokalemia was the explanation even though I never had lab tests.

[Rheadster72 in reply to addie18]

My calves and feet were constantly cramping up. Have started on drinking some coconut water each day, which is actually quite a nice refreshing drink! Bonus

[JanD236]

After having B12 injections for over a year (initially had them every 2 months and then went onto monthly) my blood test showed that potassium had fallen to just below range.

Over the course of the next year I started si weekly and also made a big effort to eat foods with a good amount of potassium in at every meal. I’m happy to say that the blood test at the end of that year showed that potassium was back in range.

[Rheadster72 in reply to JanD236]

Thanks that's really encouraging.

[deniseinmilden]

If you need more B12 then you need it.

I'm not medically qualified and it is only my opinion but I think it is better to have extra B12 to stop the damage that a deficiency causes and increase your potassium intake if required to balance it.

Anyone requiring higher levels of B12 may need extra supporting supplements including a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium, maybe iron.

There are many of us for whom daily (and some twice daily) jabs are needed to be well. Some have been successfully SI very frequently for many years.

Be careful with potassium and try to get it from your diet if possible - Google it for sources you will like. LoSalt, available from many independent stores, is 66% potassium chloride with the balance as sodium chloride (normal table/sea salt) and can be used to replace the salt you use in your kitchen.

Good luck in finding the right balance for you to be as well as possible!

[Rheadster72 in reply to deniseinmilden]

I believe all of that and know it deep down makes sense. Just all very difficult when you have the extensive symptoms and in my case, no diagnosis. That said, listening to my body rather than the docs and I felt so much better on twice weekly jabs a d even managed to start running again. At the moment though the winter lurch has struck and has flared up all the horrible symptoms. I have increased my dietary intake of bananas, coconut water, green veggies... it would be nice if the GP would check my potassium levels rather than just saying taking too much B12 can cause issues from hypokalemia.

Great advice on here. Thanks all and have a great Christmas

[deniseinmilden in reply to Rheadster72]

I'm not suggesting you should but....

When I started SI I was so ill I had nothing to lose. After about 6 months of 1.5 mg hydroxocobalamin a day without taking extra supplements (because I didn't know about them and how important they were) I had become very short of the extras and the B12 had almost stopped working.

Once again I had nothing to lose and found I had to take the supplements at beyond what was theoretically toxic levels, just to stay alive.

I listened to my body, using my symptoms as a guide and gradually have improved until I am reasonably well and now have been able to cut back on the amounts of the extras that I take and still maintain my activity levels.

If your symptoms go when you supplement and return when you don't, it suggests that you need that supplement.

And for me, actually feeling alive is more important than having a piece of paper which tells me I should feel OK when I don't! 😁

[Rheadster72 in reply to deniseinmilden]

Well said. Rang up GP today to see if the haematologist had increased my frequency bit sadly he actual advised not increasing about the once every 3 months and favour taking the pregabalin. Like you said, I know that things improve with at least once weekly so reckon I might just go back to SI. Did try methylcobalamin sublingual with the folic acid and the B complex the haematologist had prescribed and woah was it like sticking my fingers in an electric socket. Dialled up the nerve symptoms all over the limbs and in my head. Won't be doing that again! Had none of that when doing SI hydroxocobalamin

[deniseinmilden in reply to Rheadster72]

That just shows how inadequate the NHS "one size fits all" approach is, doesn't it, because I could take 10 a day of the strongest ones with some but minimal effect and other people report good results from them and no side effects!

I'm glad you are being positive and trying to find what works for you. I hope you get there soon!