Concerned about B12 injections

[masshole21]

After feeling miserable for a few months, I finally went to the doc who ordered a lot of tests. A blood test revealed that my B12 is low (150 pg/mL) and RBC was borderline for anemia, though she didn’t consider me anemic.

The doc prescribed 2 injections for the first month (1 injection every two weeks) and then 1 injection per month, for the next two months. She wants to recheck B12 levels in January.

I’m not vegetarian and overindulge in fish, eggs, and cheese so it’s likely that I’m dealing with an absorption issue, possibly PA. She’s ordered a test to check IF antibodies.

Since starting the injections my symptoms have improved slightly, but I’m still struggling to get through the day. I’m assuming that a more aggressive injection schedule will bring my b12 levels back to normal quicker so I don’t understand why she’s ordered just a few shots. Does this seems like a conservative treatment plan to anyone else? Is there a danger to having too many injections? (I’m in the US)

Symptoms:

cognitive problems—can’t concentrate, memory loss, brain fog

fatigue and weakness

dizziness

high heart rate and heart palpitations

slight hand tremor

occasionally pale/yellow skin

breathlessness

appetite comes and goes

cold hands and feet

feeling down, more irritable

[Nackapan]

I'm on the UK where hydroxocobalamin b13 injections are given. Loading dise I'd every other dayou for 2 weeks then 2-3 monthly.

With neurological symptoms every other day until no more improvements. It's so struggke here to get the right treatment too.

Go back with your list of symptoms and try and get more injections to treat your symptoms

Take care

[Nackapan in reply to Nackapan]

B12!!

[Nackapan]

When injections start your b12 be very high. There is no need to do a blpodiatrist test.

If you look at some of Sleepybunny information she posts it will help you

[Gambit62 Administrator]

unfortunately it is extremely rare for things to suddenly go from being deficient to being 100%. There are a lot of processes that go on in your cells that use B12 - in some cases it is just a question of having enough B12 getting into the cells for the process to run properly but in other cases some damage may have built up and it takes a while for this to be corrected, eg correcting the effects of anaemia, eg if your red blood cells have been affected.

When you have an injection your blood levels are actually astronomic just after the injection then they fall with time. How quickly they fall varies considerably from person to person. The rate at which B12 is removed is greater the higher your serum B12 levels are - so in general about half of the B12 is lost within 24-48 hours - removed by the kidneys and passed out in urine. Whilst there isn't any risk from having very frequent shots it may not be more effective.

There isn't any standard protocol for loading shots in the US.

I would suggest you keep a diary of how the symptoms are doing in relation to the timing of B12 shots and speak to your GP again, armed with that, if you find that symptoms are returning within the month.

The AAFP guidance on treating B12 deficiency does reference the UK guidelines so you could ask for a more aggressive loading regime - give that you have some neurological symptoms.

aafp.org/afp/2017/0915/p384...

[lilymg]

Hi masshole21

Over age 55yrs B12 is difficult to absorb due to declining Intrinsic Factor protein declining as we age. This protein helps B12 to absorb through the gut and ilium into the body. If your B12 is low and you are 55yrs or over or diabetic type 2 and taking Metformin or taking PPI's for a length of time, you should be getting B12 injections every 3 months. I looked at your symptoms and they are likened to underactive thyroid, have you been tested for this? If not ask doc to test for Hypothyroidism.

[briarhillcat in reply to lilymg]

Hello, Yes, you are right. I do not have the intrinsic factor either. I was diagnosed in the 1970s along with ulcerative colitis, and had to have B12 injections every day and gradually built up. I have been having them regularly and when they are due, I get the nasty symptoms. But now my surgery has put them on hold for a YEAR and I was told to get some B12 tablets. They do not work, because of the missing intrinsic factor you could take 100 tablets a day and your body would just throw them out. I am going down the road of self injecting like so many on here. Waiting for my needles and injections which I ordered from Germany. And yet, I got a phonecall today to say my blood test was due for my Lithium levels and I have to go tomorrow. That does not make sense. If I can go for blood tests, why not my B12? Good luck, and if you have to give them to yourself you will find on this forum just how many of us are having to go down that road. Take care of yourself. Briarhillcat

[WildMarmot]

Hi Masshole,

From your username I'm assuming we live in the same state! I was just diagnosed with PA 2 months ago. My B12 level was at 193 and I had the intrinsic factor antibody (I also eat fish, chicken, beef, eggs, etc.). My primary doctor referred me to a hematologist who I will be seeing later in November.

They had prescribed me one shot a day for a week, then once a week for 5 weeks, then once a month for 5 months. But my first shot gave me heart palpatations and made me feel like I couldn't breathe, so I am taking sublingual B12 tablets called 'No Shot'. They seem to be working for me if you want to give them a try. I take 1,000 mcg 3 times a day.

I still get pretty tired around 2:00 in the afternoon, but nothing like before. I am hoping the hematologist will be able to shed more light.

[cleoandpetra]

Hi - all I can say is that it was discovered my B12 was very low and I had a loading of B12 injections every other day til 5 injections - I however had every conceivable reaction to these injections and it took 2/3 months to recover from them. I have injections every 10-12 weeks but the 2nd injection left me feeling well odd - for 4/5 days again with reaction but I have to have them the rest of my life. I am 71 years of age - so basically I suppose its the doctor who is the prescriber and doctor views seem to vary considerably as you can see by the comments about B12 on this site. So can only offer the above comments hope it helps good luck.

[wedgewood]

You cannot overdose on Vitamin B12. Read the pinned post on right hand side — “Information about B12 deficiency from Stichting B12 Tekort and the B12 Research Institute .”

[Ryaan]

Hi

All your symptoms seem to fit in with low B12.

I had quite similar numbers with B12 in my tests, lower than 150 (I think 132) and I felt terrible.

Luckily I had a good doctor and was put on weekly injections.

I remember after having 16 weekly injections I felt myself again and most of my symptoms had gone.

Doctors don’t truly understand B12 deficiency and are just beginning to understand and they’re only allowed to give you a certain amount of injections according to their practice (here in Uk that’s 6 loading doses over 2 weeks and then one injection every 2 months is most common) but sadly for most with B12 deficiency that’s not enough.

Yes I do think that more often injections would benefit you more and heal you quicker but doctors tend not to do that and they say they are restricted according to the rules of their practice.

That is why a lot of people turn towards Self Injecting to a plan that suits them.

Once weekly is a good way of raising your B12. You cannot overdose on B12 as it’s water soluble and excess the body gets rid of through urine.

Also Ferritin and Folate have a big role n this as they work together with B12 so you should make sure you’re not low on them as they can cause similar symptoms if low but follow your doctors advice on them. You’ll know if you’re low by your blood test.

Vitamin D is also another thing which has nothing to do with B12 but if low can give you low mood and depression symptoms so have that checked too.

Thyroid should also be checked to see it’s normal range as hypo or hyper thyroid can cause some problems.

A lot of people don’t get the right treatment for B12 and order injections from Germany online and self inject as their story is similar to yours and over the 4 years on this site I’ve heard the same story repetitively about doctors not giving you the frequency of injections you need and give you much less frequent injections.

The intrinsic factor test for absorption is only 50% accurate and mine also came up negative when I know I have a definite absorption problem with B12 so there’s no definitive test that can say you have absorption problems.

Measuring B12 levels after injections is no use as it will always come up high unless you stop injections for months and adjust your diet to a high B12 intake and still come up.with low numbers which will indicate you have an absorption problem with B12 but that does take months.

I hope this helps and wish you good luck and the best of health.

I’ve been Self injecting now for nearly 4 years as my good doctor retired and the new one insisted I don’t have a problem and could only give me 3 monthly injections

Don’t let this put you off.

I would persue the doctor to give more frequent injections armed with information as to how to treat B12 deficiency and last resort is self injecting which is not much of a problem if it comes to that. and B12 injections are quite easy and inexpensive, but put up a battle with your doctor first.

👍

Sorry haven’t read any of your other answers. Other people may have given you better advice than me as I’m not a professional or medically trained but going by 4 years of experience.

[nkindia in reply to Ryaan]

Hi Ryan, that's an interesting post. You have stated: I remember after having 16 weekly injections I felt myself again and most of my symptoms had gone.

Do you mean your treatment started with one injection per week for 16 weeks? If yes, then what did you do after 16 weeks?

Appreciate your treatment schedule because you are one of the few who is reasonably back to normal now.

[Ryaan]

Yes one injection weekly for 16weeks.

Then my doctor retired and the new one said 1 every 3 months.

I ordered injections online and carried on injecting once a week for a few months.(I think12 months).

I just listened to my body as to how I felt.

I added Folic Acid daily and Vitamin D later as they were low and noticed more improvement.

I carried on once a week until I could drop to once every 2 weeks and noticed I didn’t get any return of symptoms until week 3, so since then I knew I needed an injection every 2 weeks since tingling and numbness in my hands returned in week 3.

So since then I’ve been on once every 2 weeks injection.

I haven’t tried a daily Multivitamin tablet yet but I think I will do that to see what difference it makes.