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self injecting and wondering what else I should be taking?

Gobbozoid profile image
17 Replies

As per the title I am self injecting and was taking a really strong Folate 1000ug but then someone told me if you take to much folate it masks b12 deficiency ?

I am wondering what I should be taking and what doses. Not just peoples opinions but scientifically proven.

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Gobbozoid
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17 Replies
ClaireWF1346 profile image
ClaireWF1346

It will depend on your blood test results as to what you need to take. I take 1mg folic acid (only on the days I inject and only started after my initial 6 doses as you need your B12 levels up before taking folic acid), iron and vitamin D as these were all low on my bloods. As I understand it, folic acid can mask the B12 deficiency symptoms and lead to mis-diagnosis but you're a step ahead and not at risk of that since you are already treating yourself by SI.

Narwhal10 profile image
Narwhal10

Hi Gobbozoid,

Unfortunately, nobody can tell you simply because we do not know your height, weight, age, signs and symptoms, length of deficiency, other diseases or illnesses, medical history, level of activity, diet, appetite, intolerances, causation of PA/B12D. See how complex it is ? I am not being a meanie.

I noted that you have been sick with a really bad bug recently. Are you over it or is that on-going ? PA/B12D is a massive learning curve for all of us. However, all the vitamin B’s work in combination. Although, there is no B9 or folate in this metabolic cycle (meaning what is happening at cell level).

healthunlocked.com/pasoc/po....

I have referenced Professor David O Kennedy’s work entitled B Vitamins and the Brain: Mechanisms, Dose and Efficacy—A Review Nutrients. 8(2): 68

If I posted ALL the stuff happening at cell level, your head will explode from the sheer volume of information. You may consider working with a private dietician who provides Patient Centred Care. So, it is geared to you as an individual. They are the Specialist in this area.

Many of us take a multivitamin/mineral. Please note the NHS does not test for vitamin B1, B2, B3, B5, B7 routinely or otherwise. Occasionally, they test Magnesium and Calcium. They definitely do not test for selenium nor manganese which are essential micronutrients.

The fact that you have been vomiting with a stomach bug means that is highly likely that you may have other deficiencies. So, rule of thumb is :-

1) Try a multivitamin/mineral for a week.

2) Obviously, discontinue if any Adverse Side Effects.

3) Monitor and record your symptoms for a week, noting progress.

4) Please also note your Output. I do understand that you have frequent urination but other aspects like odour and colour.

5) Equally, stools should be a certain size, shape, colour, odour, consistency.

england.nhs.uk/wp-content/u...

Some people advocate yoghurt, keffir or sauerkraut after stomach bugs or after antibiotics. However, I recommend delaying for a week preferably, 10 days. Simply because you will not know whether it is the multivitamin/mineral or the live bacteria which your body is responding to.

I know you required the Scientific Evidence, however, our own bodies tell us the answer. It is called the Biological (physiological) response. John Hunter, a Scottish surgeon, advised his protege, ‘Don’t think the experiment, try it.’ He was talking to Edward Jenner, the Father of Immunology.

Think of it along the lines of a patient in hospital who has a really bad headache. They ask a nurse for paracetamol, the nurse writes on their drug chart, does all the checks, gives the medication which is taken orally. The nurse pops back 30 minutes later and asks the patient, How’s your headache ? They Self-Report that it has gone. The nurse writes in the notes, Analgesia effective.

Best wishes

🐳

Technoid profile image
Technoid

The folate potentially corrects the megaloblastic anemia of B12 deficiency and symptoms relating to that. But it does not correct any of the other symptoms caused by B12 deficiency including neurological ones.

If you are looking for the scientifically proven correct dose or type of folate to be taken, you will not find it - it is both highly individual and a topic of continuous debate and discussion. There are probably hundreds of folate threads on this forum which will illustrate the tangled nature of the topic. There are as many scientific papers.

1mg is not above the tolerable upper limit so I don't there are proven risks at this dosage. Whether you actually need to take it or not and how much depends on your individual situation, how you respond to this form etc.

MrJustatip profile image
MrJustatip

Hello, yes that's true, folate will mask B12 def. Some people become Vit B12 deficient because their lab values come back to show it's low, but what they often do not know(or their doctors), is that they might be B12 deficient because they can't absorb it for several reasons. "What causes vitamin B12 deficiency? Typically vitamin B12 deficiency develops because you’re not eating enough B12-rich foods like fish and shellfish, organ meats, and eggs. For example, this is common among people who follow a vegan diet. In addition, certain medical conditions and medications can cause vitamin B12 deficiency." The above quote was taken from the internet, but here's the thing, I was B12 for about 10 years. At first, my B12 was barely low and then it began to slide slowly for several years until I started having all sorts of issues. It became difficult to breathe, I became dizzy when I stood up, I fell a number of times, and my thinking was off, then way off, but it was the episode when my wife had to call the ambulance thinking I was having a stroke or heart attack when I started to cry and could not control it that led me to realize something was severely wrong. I, of course, had pernicious anemia. I pretty much self diagnosed my self, but did not know for sure. I went over a year before a doctor finally agreed to do a IF test (intrinsic factor test) for me. It came back as positive for PA. So, I always hear it said and read that if you catch PA early, you can avoid permanent damage, but you have to convince your Drs. first, and that can be tricky and difficult. The hematologist told my wife I was a hypochondriac. If you are low I would suggest having an IF test ASAP. Sure, maybe it comes back and you do not have PA, but if you do, then you need to start treatment even more ASAP (shots for me at least 3x/week for the rest of my life). The thing is, my GP tested my folate and it came back as severely low. That should have been a hint to her that she needed to test me for PA. She didn't and it took me another year before I finally found a Dr. to reluctantly give me the IF test. When you have PA, they say you have about 5 years of reserves that your body can draw from in your liver where B12 is stored. So, low folate is a tip, or warning sign that you may have PA. I recently have been DX with Rheumatoid Arthritis, which I thought was caused by PA, but now I have learned that RA causes PA. Both RA and PA share some similar symptoms. Others on this site can be helpful too, so always feel free to reach out to any of us. Hope this helped. ... MrJat

Gobbozoid profile image
Gobbozoid in reply toMrJustatip

Well I’ve had psoriatic arthritis for 15 years. I started at only age 30. My PA test was done and the dr said it was negative. However the PA society said it’s borderline at best and dr Klein over email after looking at my results said I had PA. Ironic I have psoriatic arthritis and pernicious Anemia so PA PA lol.

I see Klein in person next week but started injecting already as I was desperate. My folate is normal but my vitamin D is low at 59.

Wonder if I have something that’s stopping me absorbing all my nutrients as I take codliver oil daily and vitamin D is in my well man tablets so have no idea how it’s so low too!

B12life profile image
B12life in reply toGobbozoid

Have you had your gallbladder removed?

Gobbozoid profile image
Gobbozoid in reply toB12life

No

B12life profile image
B12life in reply toGobbozoid

Just asked because that can cause a very low Vitamine D. However that's not your case. Low Vitamine D can take 1 or more months to get to normal. It's a good thing to treat as low D can make you very tiredand will help you feel better. But it is obviously not the only problem.

My b12 was 199 and I was bed ridden, very forgetful, etc. after a few years of daily injections I'm doing very well. Hang in there!

Gobbozoid profile image
Gobbozoid in reply toB12life

That’s way higher than mine, mine was 130

B12life profile image
B12life in reply toGobbozoid

if that was before your first ever injection, then you are devastatingly low. They say some people get way low before symptoms. Mine started at 600, then 4 years later I was 190 and absolutely bed ridden from fatigue, severe back pain, sciatica, brain fog. it's all resolved now. however, i have not had low iron or any thyroid issues to deal with as some have. but for the b12 issue, it was resolved with daily b12 injections and taking b-multi orally daily. I listed my vitamins on this thread as well. If you can't find it let me know.

Gobbozoid profile image
Gobbozoid in reply toB12life

I need the urination issue to go. I am going like 20 times an hour today it’s friggin devastating

B12life profile image
B12life in reply toGobbozoid

yikes. doesn't sound like a b12 issue to me. but i could be wrong. I haven't read what others suggested here, perhaps urinary tract infection (UTI) ... diabetes

Gobbozoid profile image
Gobbozoid in reply toB12life

Had all that checked and my prostate and bladder camera. Only thing that worked in years is b12. Just not sure why all of a sudden it’s become so much worse than it was….

B12life profile image
B12life in reply toGobbozoid

Ask that as a specific q in a separate thread. this group is great and very understanding.

mountmuir27 profile image
mountmuir27 in reply toMrJustatip

Thank you so much for sharing your experience. Can you expand on the relationship between low folate and PA? My folate was low, very low, years ago yet never acted upon or called out (I'm in the USA). My path to finally getting injections has been a long one including cervical spondy - I could not hold my head up / weak neck. Many more horrible symptoms which unfortunately coincided with menopause so I was written off. In any event I had trace folate when all of this started and curious. Will research as well of course.

MrJustatip profile image
MrJustatip

Hello again, well, as far as how much folate or how much of anything, we'll all be hard-pressed to find a correct answer on how many mg of this or how many mg of that, mostly I suspect because doctors simply do not know. I believe (maybe I'm wrong), that most Drs. know very little about B12, and PA treatment. Why is that? When doctors go through medical school they read books and learn what they are told is important. Apparently, B12 does not seem to be important. Why is that? Well, if you need a cat scan it may cost between $3,000-$6,000 dollars. MRIs are also expensive, but hey, if you need vitamin B12, it may be something like -$5.00 to $15.00 for a bottle of pills. So, $15.00 vs $6,000.00 which could they make the most money from? Personally, I take methyl folate (1,000 mcg) sublingual. Superior Source is the brand I use, from Amazon, for about $10-$11 dollars. As for the folate m,asking B12,. what you need to know is can you take B12 tablets or must you take B12 shots for the rest of your life? That's the real question for you because if you need the shots, it's because taking the pills will do you no good at all. For people who must have B12 shots, they cannot absorb B12 so they have to take the shots. MJat

B12life profile image
B12life

I take the following orally in addition to daily b12 injections.

B1 (bendomax) 250 mg

B multi without b6

B6 in the from of 005P 50 mg

Magnesium glutamate 400g

D - 5000iu in the summer (I had my gallbladder out so I need a higher dose than most). This confirmed by labs. One can overdose on D so best to use labs to determine what is best dose.

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