So had all my blood tests back from GP and all normal! So confused as to what is causing my current lability. I am still suffering fatigue, shaky, sweating, and just not well. Thought it might be magnesium, or potassium, but they are within range. Scared to go out in case I collapse.
So annoying all bloods came back normal, as at least it might have given an indication. Perhaps it is all reversing out. I have been told off for not taking my 5mg folic acid every day while still on EOD injections. But I was on it for three months every day, then reduced to 2 - 3 a week. So maybe my B12 isn’t working properly.
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"I have been told off for not taking my 5mg folic acid every day while still on EOD injections. "
By whom? Why do you take that advice seriously? If you're not folate deficient you shouldn't need to continue with such a huge dose. You don't need 5mg folic acid if you inject EOD. Ask them why such a dose would be needed. Was your folate result normal, high or off the scale?
Lady on PAS FB page, not sure if I’m allowed to mention her name. The top expert on there. My folate level last time was just above range. I’m so confused as to whose advice to follow. I just feel like crying and giving up the whole thing!
The reply you posted from the facebook group admin doesn't address the specific question of why 5mg daily of folic acid is needed, especially in perpetuity rather than to correct a deficiency. The implication is that EOD injections require 5mg of folic acid to work. That's where the burden of proof lies. Why this much? Where does the dosage come from?
I have never taken folic acid because my folate is actually High. Is my B12 being absorbed correctly? I have no idea, because the United States doesn't have active B12 tests. Yet I feel like my B12 isn't helping me. But my Folate is high. No one has been able to explain that to me since this all began 3 years ago. I'm constantly out of breath my muscles feel very weak I can't walk very far and I'm constantly huffing and puffing. I make very thick mucus for some reason in my face and in my chest my nose is constantly full of mucus nobody can explain it it's very thick I never had it before. Something's wrong with me like my body's trying to fight something and is constantly making me mucus to fight it. I take B12, D3 and they want me to take potassium which I take in the form of cream of tartar. Because I just can't eat four Bananas a Day or avocados and everything else that has potassium in it. I'm very confused at all of this myself. I don't understand why people take folic acid with the b12. Mine is always high this has always confused me. This whole B12 experience confuses me. If we inject B12 everyday why are we not better?
I know the group you mean and the main lady in that gets really stroppy about it all. I’ve tried asking for the scientific reasoning behind the 5mg folic as well, as a few research papers shared on this forum seemed to suggest it wasn’t necessary. She refused the posts and said that she had co-authored a medical journal article so she knew what she was talking about. I’m on her naughty list now lol
Look, I don’t know what is best for everyone beyond B12 as needed. Everyone’s bodies are unique and individual - different genes, diseases, circumstances etc. One size fits all blanket protocols is why we’re all self-injecting, right?
I initially trialled the large doses of folic and it made me so sick. I’ve had great success with just a small 500mcg tab on injection days 🤷🏻♀️
I use a small dose of liquid methylfolate and it made a huge difference for me. A small dose of folic in a multi had my serum folate at top of range, methylfolate supplementation brought it down to mid range and made me feel human, even with just oral B12. Now on injections and making progress!
I’m so glad! It’s hard navigating it all, isn’t it? Especially if the doctors don’t know much or are actively advocating against something. I hope you continue to improve!
In fairness, I suppose I should ask you what your qualifications are and where your protocol comes from. I’m sure you are well qualified, just thought I would ask the question. Please don’t be offended, just interested.
A completely fair question. I have no relevant qualifications other than a short course in nutrition and metabolism as part of work towards a masters degree in nutrition. I don't have any "protocol" that I would recommend to anyone. I do not ask anyone to follow my advice without question or criticism or consideration of their personal circumstances.
Thank you. I worked in financial services for many years, and we always told people not to go to loads of different companies for the same advice, as it was contrary to getting the right balance. I should be more savvy with regard to getting too many opinions!
Yes. the FB page encourages the high folate. they don't here as it doesn't make sense to unless a person actually tests low. so to technoids point. there is no scientific backing.
You are on the right forum at least for b12.
When you say tests were all normal, are you including b12? because b12 can't be tested after your first injection as the test is skewed by the injections. You would have to stop injections for 3 or more months to get an acurate b12 test, but that would do nothing but set you back. so just keep injecting.
remind me... how long have you been injecting, what is the frequency and what was your b12 before your first ever injection?
No I didn’t have my B12 checked. It was just FBC, thyroid, serum mag and pot.
My serum B12 a year ago was 168, but was up to 213 earlier this year. (Range 150-771). But I don’t think it has been a good level for a good many years. I had an iron infusion with Dr Klein on 31st April and started Si EOD Hydroxocobalamin then. So four and a half months. I do wonder if it’s the renewed blood cells following the iron infusion which have kicked in because the new symptoms all started at about four months.
My folate has tested in the top of the range the last couple of times it was checked.
This has been going on for years. People on the Facebook page being crazy controlling & getting aggressive with people that do not do as they say. It is such bizarre behavior. And as a Canadian I can indeed tell you that is indicative of groups that are mainly from that part of the globe. A former healthunlocked contributor used to go over there simply to debate them, for fun.😁
It is one reason why I am beyond grateful for healthunlocked, in general. People here might not have any clue how incredibly peaceful & balanced this place is for all. 🤩
My latest learning when looking at blood test ranges is to have the mid range in mind as an optimal number to aim for. The lower end of the ranges are, in my view, minimal numbers and, if you have B12D, insufficient to health. I am not medical or a scientist.
If a doctor wants you to take 5mg folic acid why not? its not going to do you harm despite the crud oft spoken about it. Get blood sugar checked as could be diabetes type 2.
Dr K in Cambridge recommended me to take 5mg of folic acid on injection days, with the aim of keeping my levels in the high normal band. I had stomach issues, then ran out of 5mg tabs a couple of months ago so bought 400mg OTC, and despite still injecting every 2/3 days began to notice twitches and vibrations returning. So found a liquid folic acid, taking 5mg as advised and back on track, level was 17 at last check. I think I may not need quite as much, but it is a minefield and I don't want to feel so bad again!
You said all labs came back normal. That raises some questions:
Do you have a copy of your lab values, which should include the reference ranges?
Many doctors only look to see that the lab values are just somewhere within the reference range. They often ignore individual set points for thyroid hormones, for instance. With B12, the lab only tells you how much of the vitamin is in your blood, but not what is in your cells. For B12D it is only the relief of symptoms that counts, not the lab value for B12.
The symptoms you are talking about could also caused by hypothyroidism.
Have you had your thyroid checked? One autoimmune disease often goes hand in hand with another. So, if you have PA, it's likely that you have also developed Hashimoto's disease.
A thyroid test should include fT4 and fT3, not just TSH, but also ferritin and CRP (and some antibody tests, namely TgAb and TPOAb). There is a thyroid forum here on healthunlocked with lots of lovely and helpful people (like here). If you look for further advice, this is the right place.
Wow…your symptoms are exactly what I was experiencing. I have taken B12 by self injection for at least 15 years. Ended up having Breast cancer, a lumpectomy, radiation, and now aromatase inhibitor. I started shaking, sweating profusely, tired, and definitely something wrong. Blood test indicated my insulin was 57 when normal is less than 18. After several tests and scans, an insulinoma on my pancreas was ruled out and instead I ended up with a diagnosis of reactive hypoglycemia. It took awhile to control it with diet, but now I feel normal. I don’t know if this info will help, but it shouldn’t hurt. Advocate for yourself.
Have you already had a HbA1c blood test for diabetes, have you been diagnosed with a diabetic or blood glucose issue or are you using a self purchased CGM monitor? Basically it's the blood test you require to understand whether you have a problem or it's got worse , the CGM or pinprick test are only good for seeing your blood glucose level at certain points in the day and helping you to decide on what you choose to eat or if you require insulin ( if you are are a Type 1 Diabetic).
Did you actually have your B12, Folate and Vitamin D tested?Even if they did and said they are normal did you get the results , would you add them here?
I assume they did check your Folate and it may have been insufficient ( or near to Deficienct) from what they said , if you are insufficient in Folate you can get these symptoms, just as you can with insufficient B12.
B12 treatment often masks the effect of Folate Insufficiency until it creates worsening issues, I had this issue and require a Folate Infusion and oral Folate each day in-between.
Like my B12 Deficiency. My Folate Deficiency is functional.
What are your Ferritin/ Iron results?
If your potassium is in range?
What is your sodium level like?
It may be a hormone issue or even autonomic dysfunction that could be related to the B12 , or could be caused by entirely separate condition from your B12 issues. B12 can make many conditions worse but it's not always the underlying cause or the treatment for the issue that you have.
I'd say you need to request a referral to an Endo if you've not seen one recently and a referral to a specialist for autonomic dysfunction, although you may need to go out of area to see one.
I had all my results checked by Dr Klein at the Cambridge Iron Clinic in April and had an iron infusion in May. He confirmed I had B12, folate, Vitamin D deficiency. Started EOD B12 and folate then and have been following protocol. Just had magnesium and potassium levels checked and all okay, as was thyroid. My B12 deficiency is functional, no autoimmune problems.
Are you being treated for any diabetic or neuropathic conditions as well.I have Chronic Dysautonomia. My symptoms aren't well managed at the moment despite having B12 and Folate.
My fluctuating daytime blood pressure and night time Hypotension have returned recently. I'm basically having the same symptoms you have caused by the rapid changes in heart rate and blood pressure I get on standing or lying down.
Do you have a blood pressure monitor?
If so , are you taking readings when these symptoms occur?
You might require beginning with a referral to Cardiology ?
I do remember my autonomic symptoms getting worse for a few months as my FBC blood tests began to come back into normal range.
Having a 24 hour heart monitor tomorrow. But I check my BP and it’s not excessive, 135/90 when I’m feeling off. And had ECG a couple of weeks ago and all okay. Not diabetic either. I’ve had every test, scan, see every type of consultant over the last year or so and they all say I’m fine!
You are hypertensive while you are feeling off.An ECG can rule out things but they aren't usually any use except for a tool of exclusion in Dysautonomia or Orthostatic cardiac issues because you only get the worst symptoms when you are standing or moving.
I had several Holters before I had learned what to do to make sure my test mirrored the issue I had each day and they got results they could not deny. Part of my Dysautonomia is POTS and a less known condition called Sinus Node Reentrant Tachycardia, both cause orthostatic intolerance and symptomatic hypotension at rest.
Make sure you fill in your diary pages properly, note what you are doing and the time when you do and activity and when you stop . Note when you eat.
Scan and print off more pages.
You can do a poor man's tilt test with it on at home , if you need advice on how to do that feel free to message me.
When you get symptoms in the day take a blood pressure and heart rate reading and note what results you got so the EP can compare them.
Do try to do the everyday things you do normally and a little exercise noting what this is with the time.
If you get symptoms mark the time write the symptoms on your diary, press the button on the Holter and stop.
If you have a blood pressure monitor it's worth checking if you are getting an orthostatic response to changes in position.
Have it by your bed in the morning . Take it while you are sitting up with legs out 15 minutes after you wake up before you get up.
Then get up stand still for a minute without support and take it again. Keep standing and take it again at 3 minutes.
Is your heart rate rising rapidly , by 30 beats a minute or more after just a few minutes
How does your blood pressure change.
Do this exercise when you get up with the Holter on as well.
Try it during the day a few times, standing for up to 5 minutes without support ( be near something soft and if you get dizzy sit down) after getting up after sitting with legs raised for 15 minutes.
Dysautonomia and orthostatic conditions are hard to diagnose and most doctors and specialists don't have any real knowledge about them . Autonomic dysfunction often causes identical cardiac symptoms and thyroid like symptoms as you may experience from more well known health problems but the signs can only be seen if you are tested as they happen.
My daughter eventually got a diagnosis of POTS from a tilt table test at Queens Hospital London.Took yrsts of disability to insist on this referral by me.
Also an Ehlers Danlos diagnosis ( HEDs)
All triggered by a undiagnosed b12 deficiency.
So low she also had megobolastic anaemia undiagnosed or treated.
Very true testing has to happen in the moment otherwise delays diagnosis.
Hope yours is managed okay .
The word definitely needs spreading with the link to B12 to save alot of suffering .
I take 5 to 6 mg methylfolate per day. 1 mg at a time. I do this as my evaluation of the information available is this is what is correct for my body. My life is a lot better than when I take less.
Anyone can start a facebook group. I quickly stop reading in facebook groups that have a "Protocol" or else "Guides" that they constantly refer you to. The only Facebook group that I've found to be helpful for a medical condition had a "Files" section, where published research papers on our condition were posted. In that group, discussion about dealing with obtaining treatment and which doctors people had success with were openly discussed.
Those facebook groups that have "Protocols," "Guides," or else do not allow open discussion regarding specific doctors who can help, to include their names and location (I think they do this because of fear of lawsuits by doctors), are essentially potentially dangerous (for the first two reasons above) and/or ineffective, or even pretty useless, (for the last reason above).
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B12 treated but anemia no better
Why might MMA still be on the high end after treatment?
Am I vitamin b deficient? 
3 Months into SI 
