Pernicious anemia and tachycardia - Pernicious Anaemi...

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Pernicious anemia and tachycardia

oldtimeradioguy profile image
19 Replies

I've been feeling sickly for close to 2 weeks now. Extreme Tachycardia up to 140 beats a minute causing blackouts. Just had my 1st B12 injection today. My CBC levels are below 10 , B12 almost non existent and platelets below .40. I can barely function, must lay in bed all the time. Going to my Dr's today almost killed me.

Want to know if anyone out there has experienced the same reactions and how long until I feel somewhat normal. Mr Dr said hour's to day's, but every thing I'm reading tells me months and possibly even a year.

HELP........ cannot live like this anymore. I'm in my 50's and already on disability.

God bless us all.

Oldtimeradioguy

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Gambit62 profile image
Gambit62Administrator

Hi Oldtimeradioguy

Just wondering where you are based and what regime your doctor is following with your B12. Where-ever you are it sounds as if you should be having a series of B12 shots over a short period of time to get your blood levels up really high so healing can start.

From timing of post would guess US, but may be your in Australia?

Not surprised that you can't function.

The recovery time really does depend on what the symptoms are and what is really causing them - often there are several processes involved in a symptom - B12 is used for health cell production, releasing energy in muscles, maintaining the lining around nerve cells so they function properly and some processes in the brain - so an awful lot that can and obviously has gone wrong. Some processes will bounce back quite quickly but others take a while as the involvement of B12 isn't necessarily direct - eg effects of anaemia arise from involvement of B12 in cell reproduction and it takes time for the cells to be replaced. Repairing damage to nerve cells can also be a slow process as well

However, your GP isn't lying when he says it could be hours or days given the level of deficiency that you are obviously contending with. It won't necessarily be back to 100% you but you should certainly be noticing a difference in energy and alertness as levels of B12 in your blood go up so more becomes available to the cells where it is needed.

When is your next shot due.

oldtimeradioguy profile image
oldtimeradioguy in reply to Gambit62

So far I've received four injections from my doctor with a thousand units in each injection. I know can start injecting myself every day for the next two weeks. Yes I am in the United States in Arizona to be exact. I don't feel as if I'm feeling any better at all after 5 days of injections. I can hardly function I can't handle going out into the sun because it blinds me and now I feel like I'm having neurological problems. I'm having weird frustrating dreams and having difficulty sleeping or napping. I feel very edgy and the littlest thing upsets me and I start crying. I'm honestly so desperate after two weeks of feeling like this that I think I need to go back to the hospital for them to do more tests or get some sort of a blood transfusion. I'm going to give it one more day if I'm not feeling better by Monday I'm going to go back to the hospital and beg them to help me.

Thank you for the insight and the concern.

Jimbo

Gambit62 profile image
Gambit62Administrator in reply to oldtimeradioguy

certainly get them to check your potassium levels as you can get problems with potassium during loading shots.

Really hope that you do start to notice some improvement soon.

Just in case it helps you can find a list of sym[toms of B12 deficiency here

pernicious-anaemia-society....

might be a good idea to tick off everything that seems to apply and then monitor how you are doing against each. It is likely to take a while to recover and as B12 is used by a number of systems in the body different symptoms will take different time scales ... if anaemia is the main source of the problem that could take a few months - but others can clear much quicker.

The increased amount of pain does seem to be quite common - I think if it as being a bit like a radio - B12 makes nerve cells less efficeint at sending signals so like having a weak signal and the brain has turned up the volume. Then suddenly there is enough B12 and the signals get a bit stronger ... but it takes the brain a little while to get a grip and adjust the volume control.

However, looking for other possibilities wouldn't be a bad idea as there is a huge overlap in the symptoms of B12 and a lot of other conditions ... and it isn't uncommon for more than one thing to be going on.

maiken profile image
maiken

Are you also supplementing with the other B's, that might help get you there quicker.

Best of luck!

Hi oldtimeradioguy,

I am unable to help you, as I have no experience, I hope someone on this site can help you.

Good luck, I wish you well

deniseinmilden profile image
deniseinmilden

I used to have tachycardia and had a couple of operations for it which helped and B12 injections helped even more.

You should get some improvements immediately but you will keep improving for a long while. Make sure you get enough injections - possibly every day for quite a long while - and be prepared to do them yourself to keep up the progress.

You will also need the cofactors required to metabolise the extra B12 - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium, maybe iron too.

Hang in there - you will get better soon. Get more jabs soon.

Be aware that you may feel a bit worse after the first few jabs as your body "wakes up" but it will get better again once healing starts.

Good luck!

oldtimeradioguy profile image
oldtimeradioguy in reply to deniseinmilden

After 4 injections, over 5 day's and feeling worse. OPERATIONS ???

deniseinmilden profile image
deniseinmilden in reply to oldtimeradioguy

You can have "ablation therapy" to cure tachycardia. It's easy these days - even Tony Blair had it done when he was the British Prime Minister.

If you are worse and you have made sure you have enough of the cofactors (see my above reply) - shortages of potassium and magnesium can cause arrhythmias - then you will need to get your heart checked properly.

oldtimeradioguy profile image
oldtimeradioguy in reply to deniseinmilden

Thank you for the advice but the ablation therapy is a solution for a symptom. I need to find the root cause of the tachycardia and obviously is pointing to the low levels of B12 and red blood cells.

Johnathan profile image
Johnathan in reply to oldtimeradioguy

The heart-rate is governed via the Vagus nerve that connects to the sinoatrial node a the top the heart. The node is the hearts natural pacemaker. Speed control is by the Autonomic Nervous System via the Vagus and Node. If you have neurological degeneration of the ANS or Vagus nerve the sinoatrial node will be getting bad signals. If I had to guess I would say that you are getting some electrical short-circuiting caused by a breakdown of the myalin sheath (insulation) of the nerve fibre. Breakdown of the myalin can be caused by a lack of B12. Keep going with the B12 (a lot of it regularly), folate and multivitamins and minerals. If no permanent damage has been done the nerve will eventually re-myalinate and come good. Your techycardia should then go away.

ndodge profile image
ndodge

Hi oldtimeradioguy,

My heart goes out to you and I wish you the best wherever you are. Hopefully you are getting B12 injections every day or every other day. Are you having neurological symptoms as well?

If you are in the U.S. & you aren't getting injections every day or every other day from your GP, you could try a naturopathic doctor. Many of therm know and understand about B12 and are willing to give you more. But ask the receptionist over the phone if they give B12 to patients regularly and explain that you need a lot because your levels are so low. That's what I did to make sure I wasn't going to waste my money. My naturopathic doc gives me a Rx and my husband gives me injections. More cost effective that way. I inject every other day.

My regular GP at Kaiser HMO would not give one more than once a month and it was not the right form of b12 for me anyway.

Afraid this is not much help but hopefully you are getting enough B12 often enough.

Please let us know how you fare! Take good care. :-)

oldtimeradioguy profile image
oldtimeradioguy in reply to ndodge

I've received 4 injections in the past 5 day's. 1000 units and am not feeling any better at all. I'm basically bed bound and starting to have neurotic type dreams and difficulty sleeping. Every time I stand up, Mt heart races to 130 plus beats a minute and dizzy. I tried going out in the sun today and can barely see due to the sun. Yes in in the US, Arizona.

ndodge profile image
ndodge in reply to oldtimeradioguy

So sorry to hear that, oldtimeradioguy. Have you had your iron levels tested? They can cause similar symptoms. Also you might want to start taking methyl folate rather than folic acid. You need folate to process the b12, folate is found in food while folic acid is a chemical. If you are being given Cyanocobalamin, please try taking methyl folate. It is a methylated form of folate and could help you to process the Cyanocobalamin. You can get it at any health food store.

Continued good wishes for your health to get better very soon!

oldtimeradioguy profile image
oldtimeradioguy in reply to ndodge

Thanks for the continued advice. My iron levels are actually very high.

PAS-admin profile image
PAS-adminPartner in reply to oldtimeradioguy

It is quite normal not to feel better yet after only 4 injections, so don't worry about that part. It took 15 injections with me before I even felt something (and that was really minor). But I would have your doc check the tachycardia tomorrow just to sure (and blood pressure and all) and if you have very high iron (ferrritin?) might be good to do a full bloodcount and see what's going on. Some people react strongly to B12 injections in the beginning, also seems to depend on the form of B12 given and the additives so you might want to talk about that with your doc as well. But in general that you don't feel better, or maybe even worse is, unfortunately, quite 'normal'.

ndodge profile image
ndodge

Thanks fbirder, I'll be more specific and factually correct in future, thanks to your information.

It was late last night or I would have tried to explain more to oldtimeradioguy about why taking methyl folate might help what is a most likely the Cyanocobalamin

I'll try, someone please correct me if I'm not explaining it correctly.

So here goes, oldtimeradioguy: Everyone needs to take some form of folic acid with B12, you can get in the form of folate in food or a food based vitamin which is what I take, (mainly because they are gentle on the stomach.)

You can get it in the form of folic acid from a pill and it is also added to bread products in the U.S. If you are gluten free, obviously you won't be getting folic acid this way.

Some people on this forum take methylfolate because they have a gene mutation which makes it hard for their bodies to methylate the B12. I am not a scientist, so I can't explain the methylation process but if you do have this problem then taking methyl folate will help to methylate the B12 so your body can use it more efficiently.

I am assuming you are taking Cyanocobalamin as the form of B12 since that's what most doctors use in the U.S.

I tried that for a year with no help to my symptoms so switched to seeing a naturopath for a different form of B12, methyl-cobalamin which is methylated. Huge difference for me. I'm so much better now!

If you can't switch to methyl-cobalamin, then you can go to a health food store or get a friend or relative to go for you, to buy methylfolate 800 micrograms or mcgs is the usual dose. Some folks take a much higher dose but I just take the 800 dose.

Anyway, I think that would be the simplest way to aid the Cyanocobalamin to be methylated.

I was thinking and hoping that this one inexpensive fix would perhaps make the b12 work better for you.

Take good care and keep us posted.xx

ndodge profile image
ndodge in reply to ndodge

Forgot to say,I buy the sublingual kind of methylfolate. The brand is Country Life.

:-)

ndodge profile image
ndodge

Thanks fbirder! :) Yet again, I learned something new from you! Good to know that absorption of methylfolate does not have to be through sublingual forms.

Gambit62 profile image
Gambit62Administrator

Hi - just thought about you this evening and wondering if things have improved at all. Hope they have, though as PAS-admin says it can take a while.

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