I was diagnosed with PA 2 months ago. I'm 50 years old and live in the US. My doctor started me on weekly shots of b12. The first couple of times I felt amazing by the time I left her office and I felt great for about 4-5 days post shot. I started getting shots 2x/week since it was "wearing off". Again, I was feeling great. Unfortunately the past couple of weeks, when I get the shots, I don't feel my energy coming back and my symptoms are not alleviated. Is this normal? Does this happen?
I've read on the site that when one is diagnosed with PA they do b12 loading. What precisely is b12 loading - the frequency and the dosage? Maybe I need to do this...
Any comment or suggestion would be greatly appreciated.
Thanks
Written by
RLG99
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In the UK we are supposed to get 'loading doses' to quickly boost B12 levels. It's six injections over two weeks as standard (more if you have neurological symptoms). After that it's one injection every 8 to 12 weeks.
So your 2 injections a week is very close to what we get. Your levels should already be as high as they're going to get.
In the UK you get 3 b12 injections a week for 2 weeks . 6 in total. If neurological symptoms every other day continues until no further improvement. . The 2-3 monthly.
I am in the USA started treatment on year ago what I learn is treatment takes time. Some months are better than others and process is slow. Are your blood levels being monitor?
I was checked again for b12 after a month of shots. I have not been checked/monitored for anything else. What should I ask to be checked for? Thank you
I'm in the US as well. I was diagnosed in feb. 2017 by my internal meds doctor. I was at 98 then (now my baseline is 1300). I was placed on daily injections x 1 month. After 1 month I was placed on 1 injection per week x 1 month (4). Then every month after for life. I supplement with sublinguals ( methyl or hydroxy form on rotation because hydroxy removes the cyanide traces left behind by the injections of cyanocobalamin but you need the methyl form on a cellular level) daily (1000 mg). While loading you will also need to take folic acid or folinic acid (already methylated) as b12 is the cofactor of folic acid and need to help conversion of both.
Now, I have never felt a rush from my injections. Not once, not ever. One thing I can tell you is it not a miracle injection. ( Your body is using that shot in different ways. )You don't take it and feel better because you took the shot necessarily. Here's why. If you are low enough that you have neurological symptoms, then you have been getting that way for years. Possibly 3-5 years to be exact. Therefore, you will go through phases as your neuro issues slowly reverses. ( most symptoms will eventually reverse, but a few of the early symptoms, may never return as nerve damage over a period of time may not recover). They tend to reverse in order they appear. So if your last symptoms is yellowing eyes, sore tongue, tremors and deep brain fog, such as mine, those will be the first to correct.. and so on to the earliest symptoms. Most doctors do not warn their patients of this probably because they are not aware of it, especially general practitioners. I happened to have found a internal meds doctor that has pernicious anemia himself and about 40 in his practice of 5000+ so he's very open minded about treatment). If you have true pa, brace yourself as if you were under 100 when treatment started, it will take you roughly a year and a half to feel almost like yourself on a daily basis. Some weeks you may feel fine after an injection and sometimes, the infection might make you feel worse. I contribute that to whatever neurological symptom is being corrected. There energy your blood would feel is actually a cellular energy now that is working on your cells or being stored by the liver so toy won't feel thre rush. I hope that makes sense.
If you take anything at all from these threads, note this. Every body is different, but the foundation is the same. Every treatment is different especially between the US side and the UK side. UK doctors I'm not sure about, but US doctors I do. Get with a good us internal meds doctor. Not a GP, not a blood doctor. Not even gastro, though you'll be visiting them often in the future. Your internal meds doctor knows organ issues and how to make those organs healthy. A hematologist only knows the secondary component, the blood issue that arises due to organ damage from low pa. They can monitor but would not be able to really get to the heart of the problem, or this case the stomach. The gastro for the secondary digestion issues. Most GPS present that you can take a shot and feel better. Many sadly, have no clue. You can't take one vitamin and think it's going to fix it immediately. It takes time and your cofactors must also be taken. Think of it as a chain. Twist one link or vitamin and the link next to it also has to twist. Therefore thr neighboring business must be adapted as well. But many doctors do not tell you this.
Meaning, to have healthy blood cells, you have to have iron. If you take iron, you must also take vitamin c because if you have absorption issues, like people with pa do, you need the vitamin c to help absorb the iron. You can not take dairy while taking iron add you will not absorb the iron at all. It's things like this, that will have uppity an expert on vitamins and minerals in no time at all.
B12 needs folic acid.
Vitamin d needs calcium.
Potassium needs magnesium.
My family and friends tell me im so lucky that all I have is a vitamin deficiency and I don't have to take costly meds. Well, us insurance covers vitamin d and b12 without issue, but none of the others. I spend 120 a month on vitamins. And I have to take Just to feel normal! I take 10 a day!
(Vit d, calcium, vit c, b12, b complex, folic acid, iron, potassium, Magnesium, milk thistle ( to rejevenate the liver) multi vitamin)
Also worth a mention, during therapy, your b12 will always be "fine" as you put it, when doing serum checks because, hello! You're putting that shot into your blood. But that is a blood serum level only. That is not a measurement on a cellular level or the level of liver storage. It takes years for your liver to deplete to the point that your rbc are affected and you become neurologically deficient. It will take years to restore b12 in thr liver to a sustainable healthy level) Therefore a couple months of injections only keeps your blood levels topped off but not really doing anything for your liver stores. So, doctors continue to test for b12 ( mine every 6 months) but it's not a true indication of what's going on while in therapy. The US doesn't really do the cellular b12 test like the UK does. There is waymore cases in UK but the NHS is not nearly as flexible as the states. Your doctor should also run a CBC, vitamin load and mma test. Mma is high when your liver stores are low and mma is low when liver stores are high. That's the best indicator as to how your body is metabolizing the b12. (Also an indicator if uppity have methylation issues as such with the mthfr gene). But you need the folic acid to use the b12 dose to its optimum or you basically waste the b12 because it will use your body folic acid storage to convert this and it will be too low at the next dose to help, so you essentially pee that b12out without any true benefits. So increase one pill folic or folinic acid for every injection to ensure you are balancing.
Again, don't be hooked on the feelings immediately ( which is why I supplement orally with methyl or hydroxy) because those feelings are not driven from the injection itself but what your body is doing to repair itself so no two shots during deficiency are really reacting the same on your body. New nerves firing, etc. Cause all sorts of odd pains and sensations. But they will go away during ongoing treatment.
This is a life long journey, not a monthly fix. You will learn more about your body than you ever thought you would. So there will be months that you think you almost there and then a month later that you are having a hard time thinking, " why do I still feel like crap when I'm doing all this to get better"... this is normal. Do not get discouraged. It's been a little 3 years for me. I just turned 50 in January. I've been running again for several months now. I used to have a hard time walking across the room or getting out of bed) Something I never would have dreamt to do again in 2017, 2018 and 2019, even. I started back to a light jog at the end of 2019, and now I'm back into 5k/10k marathons. Something I didn't even do when I was 40!
But a good portion of your healing will become a mental journey as well, so hang in there.
***And if they didn't check your vitamin d levels, have then do that because low b 12 usually means low vitamin d. Vitamin d contributes to many bone and joint pains as well.***
I hope this helps put a little into perspective and provide you some hope and well being. Be well, friend.
Thank you so much for taking the time to write this. So insightful. You have definitely given me a much more positive outlook on the future which I so appreciate. What are you using when you supplement with methyl and hydroxy - dissolving tablets or liquid? Is there a brand that you like? Thanks again.
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